Urethral Pain [Archive] - ICN Support Forum - Interstitial Cystitis, Overactive Bladder, Pelvic Floor Dysfunction

Bella Spirit

05-07-2009, 02:31 PM

I am hoping there are some other people out there, like me, who have sole pain in the urethra rather than the bladder.
To my understanding this is a form of IC called ‘Urethral Syndrome’ and incorporates all the IC symptoms of frequency, urgency, nocturia etc but most of the burning, twisting, aching and stabbing pain are constantly in the urethra.

What do you do/use for pain relief?

Any advice on the subject would be great :grouphug:

_________________________________________________________________

ICN has accepted our request for a urethral pain topic/forum.
You'll find it under Related Conditions to IC (about half way down the page).
See you over there :)

Thank you Jill :grouphug: and thank you ladies for speaking up :grouphug:

mylife

05-10-2009, 01:56 PM

After many recurring bladder infections my bladder was damaged. I've had two cystoscopys and I had scarring on the urethra making the entrance in the bladder very tight, so with the cystoscopy opened it up but the constant burning in my urethra was still there. My doc dosent want to put me on meds because im so young (19) so he's told me just to drink 4-8 cups of water a day and do the kegel exercises but that hasnt helped at all. I'm going to see him in a month to see if there's any medication he can put me on to help heal my bladder or make the pain go away. I have constant pain and irritation in the urethra, it gets worse when my bladder fills with urine which is where the urgency and frequency comes into play because I feel like if I empty my bladder the pain will go away but it dosent. Also I find drinking alchol makes the burning worse. What are your symptoms?

bluetart

05-10-2009, 03:27 PM

I have both symptoms in urethra and bladder, the pinchin feeling I get is from PFD I am doing biofeed back physical theropy. I also get this burrining feeling, sometimes lidicaine jelly helps. I put it on the tip of my urethra and it numbs it up. I have heard of small inserts for urethra with medication to help with the pain but don't know much about it. Hopfully someone who does will chime in. If your doctor dosn't have may suggestions and isn't up to date you might have to teach him/her or find another.

mpizze619

05-10-2009, 03:49 PM

I too have urethra pain - almost constant. I have been told its a form of IC. I have recently been put on flomax - the dr said its been proven to work for urethra spasms - its helped a little but not much. My urethra feels like someone has a razor blade in it 24/7 - its enough to drive me crazy!!!! They did a cysto with hyrdo - no damage inside the bladder but notice some on the urethra itself. Also had a uro dynamics which showed alot of spasms (this was the most painful test I ever ever had!!!!). From what Ive been reading I've seen that possible a muscle relaxer would help with the pain - Im doing to run it by my dr - maybe she'd give me a script - I'm not taking any pain meds for this condition at the moment - have in the past but since I've developed a seizure condition I've had to stop pain meds.

Bella Spirit

05-10-2009, 03:56 PM

Hi :) I was starting to feel very lonely with no replies to my thread. I'm glad I got some responses now :) I was really hoping there were some others out there with similar symtoms.
Ok my symptoms are a constant burning urethra (been in pain now for 6 months without a break - flare??)
It seems to be more painful as the bladder fills up. I could describe it as an ongoing UTI pain because I constantly NEED to urinate. It's more of a urethra inflammation feeling that makes me want to urinate though. I have frequency too but I can urinate quite a lot (alot more than typical IC sufferers) and the stream is quite good (if I do say so myself)
Sometimes the pain is quite intense so I have to put pressure on the urethra area for about 20 mins after going to the loo.

My doctor is not helping and as I live in Australia I am finding it hard to find numbing cream or the like.
It almost feels like the first case of 'urethral syndrome' they've ever seen because they have no idea how to treat me. It's frustrating.
I have been drinking bi carb soda/water mix for a less acidic feeling.

Bluetart I find the doctors useless. They recommended drinking cranberry juice (typical) OUCH!!! and they don't take kindly to my recommendations lol.

mylife I know what you are saying about drinking water. It makes the whole thing worse I reckon. And yeah drinking alcohol is PAINFUL! Also coffe hurts :(

Thanks guys

Bella Spirit

05-10-2009, 03:57 PM

mylife

05-10-2009, 04:35 PM

Bella Spirit

05-10-2009, 04:56 PM

Bella Spirit, I find that my symptoms relate to your symptoms more than anyone elses that I've been reading. I am so glad you mentioned that you have to put pressure on your urethra after you go to the bathroom because I do the exact same thing after I go to the bathroom to relieve the pain. I wonder why this gives us relief? Also, the doctor seems to think my problem is frequency and urgency but my frequency and urgency only started because the constant burning feeling that I have makes me think I have to pee. I wish I could pinpoint the the cause of the burning. I'm not sure if acidity is my problem because even when my urine is so dilute that it's almost clear I still have the burning feeling. I know a lot of people use Prelief which is an acid reducer but unfortunately for me we can't get it in Canada. I'm going to my urologist in a couple of weeks and I'll let you know what he says and if (hopefully!!) he prescribes me medication.

I'm glad to find you :grouphug:
It's hard to find others like us. I don't know why?
I know what you mean about the doctor saying that the cause of the acidic feeling is frequency and urgency. It's not and it gets very annoying to constantly here the doctor say that. Somedays I can last maybe 2-3 hours and as soon as I go, I get that acidic feeling back again --- so how can it be frequency. The pain will last about 30 mins then will go away for a bit then as the bladder fills it comes back. Weird.
I don't have a major problem with my diet. Sometimes I can eat alot of the 'IC unfriendly' foods without much problem. Because the feeling is there all the time whether I eat really good for 4 weeks or I stave myself or I eat junk food. Yes, It is very hard to pinpoint!
I don't know whether prelief would help me to be honest.And it is hard to get in Australia --- I'll have to order online which I don't really want to do.

Let me know what your urologist says. I'm very interested to know :)

Dakota

05-10-2009, 06:30 PM

Bella Spirit and mylife: Wow my pain is exactly what you have described. I just didn't quite know how to word it, but I can so relate to what you've both just said. This is what I've had for three years nonstop. The only thing that helped was Elavil and I can no longer take it because it is so drying and I have Sjorgen's Syndrome. If I try to hold off going, I can really get into a lot of pain. Sometimes I will last for several hours and then all of a sudden it really hurts. Other times I can keep going every hour or so. I find that diet does not seem to make much of a difference. I've always thought this seems to be more nerve related and I'm beginning to think I have PFD too. And I am also interested in what your urologist has to say so please remember to keep us posted! I'm just relieved to hear of others who have the same symptoms I do although I wish we could find an answer as to what would work for this type of pain. I'm thinking possibly Lyrica? Some people here seem to be doing very well with it.

Best wishes,
Dakota

Bella Spirit

05-10-2009, 06:53 PM

Hi Dakota
It’s good to see that there is another person with the same symptoms :hi: I too have had the pain for a while --- 2 years and haven't had many days of relief in that time.
What is Lyrica anyway? I’ve seen the thread on here but it doesn’t say what it is. It probably won’t be available here but it’s good to know. And what is PDF? Sorry if I sound stupid! :lmao:
Also I forgot to write before that I sometimes only go to the loo maybe 10 times a day (including the night) but sometimes I will go 50 times a day. Sometimes I think it has to do with water retention but I don't know. The pain is always there whether I am frequent or infrequent. It is really unprediactable.
I will always get up during the night probably 2-6 times without a doubt but I have been like this all my life.
I absolutely hate going out in the car. I get worried about the 'what ifs' :lmao:
anyway I'm up for more advice and comments if anyone has any. What is working for you?

Dakota

05-10-2009, 07:18 PM

Hi Bella

It is now 1:00am in the morning here, but I just took my sleeping pill so not in bed yet and besides I'm just burning so much right now that I can't relax.

Lyrica is a med mainly for Fibromyalgia but some urologists are writing it off label for IC I believe. If you can find the threads on it you'll see what I mean when I said a lot of people are having luck with it. My problem is I just quit the urologist I've been seeing for two years and returned to the one that diagnosed me with IC. I saw him about a month ago and he told me he has not heard of Lyrica being prescribed for IC. I am thinking of trying to get my primary doctor to let me at least try it. It seems to me it would help for those of us with nerve pain. And no you do not sound stupid because I didn't know much either until I started coming to this site. PFD is Pelvic Floor Dysfunction. The nerves from the pelvic floor, bladder and colon are all tied in together and so if the muscles in the pelvic region are tight that can cause lots of pain and problems. I'm like you in the sense that some days I can go a fairly long time without running to the bathroom, and others I'm in there every half hour. If I did not take the sleeping pill I would be up all night running to the bathroom. I always seemed to have this problem even before IC. I would get in bed and if I didn't fall asleep immediately I could actually feel my bladder filling up and I would have to get up again even if I just went. The sleeping pill I take really helps me get through the night. It's a very addictive med, but I don't care because I would be insane without it. I've got a script for Prosed DS but it doesn't seem to ease the burning all that much for me. As far as the diet goes, I know there are a few things that can set me off. Mayo seems to cause me a real problem. And I never leave my house unless the last thing I do before going out the door is run to the bathroom. Even if it's just a short trip in the car I still do make sure I go first. Other then the Elavil, nothing has helped so far.

Best,
Dakota

Bella Spirit

05-10-2009, 07:30 PM

Ahhhhhhh sleeping pills. What would we do without them!
The only thing that works for me at night is valium. I've stopped taking them now because they are so addictive and just plain BAD.
I've recently quit my job so it doesn't matter if I don't sleep right through. Like I have said I've had this problem for most of my life so I'm quite 'immune' to not sleeping. And yes I agree with you about 'feeling your bladder fill up and having to go again straight away'. I might do this 3 times just before I go to sleep. It's annoying but it's my life.
I'll have a look up the lyrica threads today sometime.
And yes stupid me. Of course it stands for pelvic floor disfunction! ha ha
Mayo does it for me too. Caesar salad too. there are a few foods that definately start me off but then again I am ok sometimes. It's very up and down.
I really think that my 'need a toilet around 24/7 Anxiety' is the killer for me though :)
Hope you have a good sleep :)

elamar

05-11-2009, 02:53 AM

You pretty much summed up my main symptom - urethral pain. Have you been checked for all stds? I don't mean to get personal, it's just one of those things that can cause urethral pain. There are two bacteria - ureaplasma and mycoplamsa that love to live in the urethra and can cause those sypmtoms. I have been tested to death and nothing ever comes up positive. My doctors mostly think it is pfd causing the sensation of burning. My left side vaginal muscles are very tight and are pulling on other nerves and muscles in the pelvis. One thing that is helpful are certain antispasmodics - especially the ones that turn your urine blue - urelle, prosed or utira-c. Ditropan xl was also helpful. Two natural supplements that might help are cantharis or slippery elm. I found the slippery elm to be the better of the two. The only problem is you need to take 4 huge capsules three or four times a day. On top of taking other supplements and pills, I was getting plenty of water intake just by taking my meds. I was injected with botox 4 weeks ago in an attempt to relax my pelvic floor. My bladder was not injected, just the vaginal muscles, across my lower back, and the pudendal nerve group. It increased the burning and frequency something terrible for me. I am going to see a pelvic physical therapist starting today. I hope she can help. My doctor swears if this therapist can't help, than no one can. She is supposed to be that good. Anyhow, hope this helps a bit. I am coming up on three years of this hell and have yet to find any medication that truely helps. Some slightly cover up symptoms, but I am looking for a more permanent solution! Aren't we all???!!!. Have a good day.

katie87

05-11-2009, 05:09 AM

"I don't have a major problem with my diet. Sometimes I can eat alot of the 'IC unfriendly' foods without much problem. Because the feeling is there all the time whether I eat really good for 4 weeks or I stave myself or I eat junk food. Yes, It is very hard to pinpoint!
I don't know whether prelief would help me to be honest.And it is hard to get in Australia --- I'll have to order online which I don't really want to do "

I am the same way... i am in pain nonstop daily no matter what my diet is like.. i also have bad urethral pain, i noticed the urethra is super close the the vaginal opening and and sexual stimulation "flares" the urethra to a worse state, it feels like a nonstop uti and like the urethra is throbbing, sore, irritated ripped, glass in it.. however you call it it hurts. I take pain meds but they do not do much besides sedate/tire me a little. I've been on the same med for a long time so i am tolerant to it.

Dakota

05-11-2009, 01:28 PM

Katie: You are so young to be going through all that. Have you ever been on Elavil?

Bella: Like I said there are a few foods that I know will cause me even more pain, and like I said mayo is one those. For some strange reason hot dogs will do it to. The thing that really pushes me over the edge is STRESS. Nothing compares to the pain that causes me!

elamar: I noticed you said you were starting with a pelvic physical therapist. I was wondering how that went and if it caused you any more pain? I'm in NJ and I don't know why but I seem to remember you may be too? If so I would be interested to know who you saw. I am conviniced this is a big part of my problem, but I think I would be scared to try it because even a pelvic exam by my gyn caused me such severe pain. I would be interested to hear about your experience. Oh I almost forgot I've been tested for everything you could think of and they always say I'm fine. The only thing that comes back abnormal is my urine because I always have leukocytes, but no bacteria.

Best,
Dakota

Bella Spirit

05-11-2009, 02:18 PM

Hello everyone

Elamar, I have had ureaplasma. I got diagnosed with it in January and took a long course of antibiotics to get rid of it. I have brought this up a couple of times on the forum but I didn't get much feedback so I just dismissed it.
I have seen many doctors over the past 2 years and they never tested me for those microorganisms up until just recently. The doctor that discovered it said that I have probably had the infection for so long that it has caused my IC and destroyed my bladder/urethra. I am bitter that they did not find this earlier. I am skeptical to whether this is the cause of all my pain though.
Elamar I feel your frustration! Why can't there be an easy solution instead of trying everything under the sun with no relief? :cussing:

Katie87, do you use anything other than pain meds? What has your urologist/doctor said to you?

Bella Spirit

05-11-2009, 03:34 PM

Is it true to say that we're all under 30 here?
I'm 28.

Dakota

05-11-2009, 03:41 PM

Katie: That's what I get for staying up so late and being half out of it. I see now where you mentioned you are taking Elavil. Sorry about that. I just have to get to bed earlier! Anyway, I also took the generic of Elavil and it was the only thing that has ever had any effect on my pain.

Bella: I would be very upset too if they did not find this out earlier, and then to have the doctor tell you that is what caused IC. Wow! Was this a urologist who told you this? I can understand why you would be skeptical as to this being the cause of pain, however I did look it up because I really did not know what it is, and the site where I read about it said it could be the cause of pelvic pain. Did the doctor explain how it would cause damage to bladder/urethra? Did you have many urine cultures before this was found?

Bella Spirit

05-11-2009, 04:00 PM

Hi Dakota, do you ever sleep :lmao: It must be after 11pm where you are :)

No I have only been dealing with doctors (General practitioners) so far. To see a urologist I have to get a referral from a doctor and they have only just given me a referral! They never thought I needed to see a urologist. I'm not kidding. One doctor gave me a MSU and found nothing so he gave me a second MSU. When the results came back negative again he sent me away and said that I didn't have a problem and that it'll 'heal' in time. In total I've probably seen about 5 doctors who have given me diagnoses ranging from anxiety to pms to 'absolutely nothing wrong'. The lady doctor who had found the ureaplasma gave me antibiotics (doxycycline) and told me to drink cranberry juice and it should heal in time. She said that it has probably created a permanent wound-like lesion along the urethra. Fortunately she has referred me onto a urologist so now I have to wait until they have an opening for me at the hospital (I've been waiting about 6 months)

And yes I've had many urine cultures done. About 7 MSUs, 4 Ureaplasma/mycoplasma and 1 urine biopsy.
I've had an ultrasound, blood tests and allergy tests.

Dakota

05-11-2009, 04:56 PM

Hi Bella, in regards to the age question, lets just say I'm old enough to be your mother. And as far as sleep goes, I would be up for days if it were not for my Restoril sleeping pill. It really knocks me out for a good eight hours. My primary doctor hates that I'm on it, and says I will probably never be able to come off it. I've told him I have no intention of trying to! I'd be running all night to the bathroom.

Sometimes here in the US it can take awhile to get in to a specialist. Especially if you don't have an emergency and it's just routine care. As far as being diagnosed with IC over here, some people see 5 or more Urologists before finding out about IC. The last one I was seeing for over 2 years did nothing for me. I really had to pin him down to say what was wrong and his answer was Chronic Cystitis. He sent me for lots of tests on my kidneys but everything always came back normal. He did do a cystoscopy because he said I was retaining urine, but it did not help with the pain. As far as meds he only offered me Prosed. Funny because both my primary and gyn wanted me on Elavil. I think they know more then he ever did! My other Uro wanted me to take Elmiron, but it's so expensive doesn't always work. So I tried going with Cystoprotek and Aloe caps, but they never seemed to help. That's why I still think this is all nerve related somehow. However, I do have a lot of the white blood cells which of course is caused by inflamation. I think I've really given up trying to figure it all out. I really hope you get to see a urologist soon. Six months is just way to long. I guess I'd better try to get to bed now!

Bella Spirit

05-11-2009, 05:54 PM

I really had to pin him down to say what was wrong and his answer was Chronic Cystitis.

lol obviously. I know the frustration you would have felt after hearing that answer. I was told that too whilst being shown the door.

It sounds like you've had a frustrating time. No wonder you've given up trying to figure it all out. There seems to be no light at the end of that long tunnel.

Hopefully we all can get some real answers sometime before we die. Oh that didn't sound very good! You know what I mean :lmao: :loco::loco:

brice42

05-17-2009, 09:26 PM

hi i'm so glad i found your post. i've been off and on to the ic network but have rarely come across anyone who has my exact situation. i have had or been told i have ic, but it's not typical ic, and my main symptom i constant urethral burning-like a urinary tract infection that never goes away. the only things i have found to work is a compunded cream my pain management makes up for me. it has ketamine, menthol and a few other numbing agents. i have not been able to get a definative answer as to whether it aggrivates the delicate tissue-i insert it up into my urethra. i hope it is not making things worse, but i cannot stand the burning w/o it. unfortunately the relief is very temporary, 15 min or so. so that and heat are the only thing that helps. my life has been turned upside down. i have horrible pelvic and back pain as well. please let me know if you hear of anytning else. best of luck to you! emily

Bella Spirit

05-17-2009, 11:16 PM

Hi Emily

I know how you feel. My present flare, if you can call it a flare, has been constant for 6 months with no real relief. Sometimes I have days that are better than others but the pain is always there.
What else has the doctor said to you? Do you regularly see the doctor?
As far as I know there are no real urethral medications except for the numbing cream you talk about. I'm still looking for a good effective pain reliever too. Nothing has really been working for me so far and I've tried most of the suggestions given on this site by the girls.

I have asked the ICN if they could dedicate a topic especially for urethral pain sufferers, as the pain is quite different from bladder IC and there seems to be quite alot of us.
I haven't heard anything yet :confused:

vtcurtis

05-18-2009, 02:47 AM

I also have urethral paid with my ic flares, which sadly have been more frequent lately. I went nearly two years without a "real" flare just by monitoring my diet and within the last three months I have been a total mess again. Last month I had a trifecta - uti, flare and yeast infection from the medication to cure the uti. It was horrible and lasted for two weeks. This month I got another infection on top of a flare and stopped counting days in pain after 25. The worst is the urethral pain! I told my husband I'd rather have anything else on my body hurt! My doctor said she can insert lidocaine (sp) into my urethra, but I have found heat to be really soothing. To help lessen the pain a little my doctor has given me Prosed. I use that and advil or Tylenol with Codine.

TWINBURL

05-18-2009, 08:53 AM

I am currently 48 years old, but I have had symptoms for 15 years. For about 11 of those years my pain was urethral 24/7. I also had spasms that I could feel. I told the docs that if I could just get my vaginal spasms to stop I think I would feel better. They always looked at me like I was crazy, even had one doc tell me that I was not having spasms, I just burned always. One night after eating pizza I felt this horrible burining pain, but this time it was in my lower pelvic area. I knew it had to do with the pizza but I never thought it was my bladder. I went to my gyno who then sent me to a uro. Well the spasms were bladder spasms (who knew) not vaginal and I was put on 2 1/2 mg of valium per night. What a relief not only was I sleeping better the spasms had stopped. After having those spasms for years after 1 week on valium theyalmost stopped all together and with that the burning pain was better. So part of my pain was due to pfd I am sure of it. Also I read as much information as I could find to educate myself. I went to another gyno and asked for estrace cream, it is a estrogene cream. This gyno told me that the bladder is made up of the same membrane as the vaginal area and that estrogene also help improve the health of a womens bladder. He gave me the estrace cream to apply twice daily to the urethra area and I am telling you it has made a big, big difference in my burning pain. I am not saying that every young woman should or could use estrace cream but it would certainly be worth some research and asking some questions. I do know that some younger people with IC get better by taking birth control. It has changed my life, just wish I had had it sooner.

Dakota

05-18-2009, 09:43 AM

Hi Bella Spirit: I think that's a great idea you've come up with. It does seem there are a lot of us on here with the same problem. Sometimes I'll be reading what others have to say, and then then in the middle of the thread come across a few with these symptoms. It would be great if we knew we had a special place to go to. This thread is still right here so maybe if others find it we can keep it going for awhile.

All the best,
Dakota

Bella Spirit

05-18-2009, 12:30 PM

...Interesting :)
Thanks for everyones take on the subject.

vtcurtis - that definately would have been a painful time. I'm glad it's over for you. The meds you talk about, are they just pain meds/narcotic type meds. I'm unfamiliar (Australian!)
I'm going to try and look for a heat pad. One that you warm up in the microwave alright?

Twinburl - I have stopped taking birth control. The doc said it would be best for me??? hmmmm... I haven't noticed a difference to be honest. I'm going to ask the pharmacy about that 'estrace' cream.
And as for valium, I don't want to go down that road again :lmao:

Dakota - I absolutely think we need a urethral topic but it's out of my hands. All I know is that it I would love to congregate with all of you and talk freely about it at an easy to find location. Urethral sufferers are coming out of the woodwork and I reckon there has got to be alot more of us out there but it'll be hard for them to find this tiny little thread. Hopefully ICN can look into it.

DenySue

05-18-2009, 01:03 PM

May I join the club? My flares always feel like intense urethreal spasms with burning and the constant urge to pee.....whether I need to or not. I never burn when I go, always afterward. I was told when I was a teenager that I had a "congenital narrowing" of my urethra and I had it dialated several times....I don't know if it helped or not. I have always been prone to bladder infections. I currently take urelle (actually, the generic form, Darpaz) and it does help, and I take oxybutnin also. I tried Sanctura but it kept me awake. I am going to talk to my Uro about Elavil. I am scheduled for an in-office cysto, but I am not sure I can do it right now. I am afraid it will put me out of commision for a week or so, and I really can't afford to be out of work that long.....plus the little thing about being terrified of having anything put in my urethra!! Sometimes I can just be sitting with no pain and a spasm will grab me and it feels like my urethra is being twisted in a knot....then it goes away. I probably have PFD, too. Glad to know others understand what it feels like.

Bella Spirit

05-18-2009, 02:03 PM

Ha! you sure can join the "club" :lmao:
Yes, I too burn afterward. The best form of relief is pressure I find. This can be a little embarrassing :(
I am really "grossed" out by the whole thought of anything entering into my urethra. I'm going pale just thinking of it :(

Mary Ann Maurer

05-18-2009, 02:40 PM

Bella Spirit

05-18-2009, 02:55 PM

No I haven't. My doc hasn't suggested them either. I will look into this. Thanks :)

vtcurtis

05-18-2009, 02:59 PM

Prosed is a prescription medication that both is supposed to help with pain associated with UTIs and IC. I find it helps with mild flares, but for moderate/bad flares it's not that great. Heat is the only thing that works for me. I use a electric heating pad and have used the heating pads that the IC network sends in the "introduction kit". Both really help.

I have the same pain. No pain urinating, but afterwards it sometimes brings me to my knees. I had a cysto a few years ago. I was in pain the first day and discomfort the second, but could have gone back to work the next day.
It is so different for everyone though. I have heard some people say they go back to work the next day and some say they were down for a week. The good news is I felt great for weeks after!

DenySue

05-19-2009, 01:52 AM

Yes, I did read about the instillations into the urethra in The IC Survival Guide by Dr. Moldwin....sounds promising, but is it hard to hold it in long enough for it to work? I use to get some kind of suppository after my dilatations (a hundred years ago:))and I couldn't get out of the office without going to the bathroom! I find that heat helps most, too. I am going to talk to my doctor again about the cysto. It is scheduled for the 28th, but the thought makes me sick.

TWINBURL

05-19-2009, 09:41 AM

Bell Spirit: I'm not exactly sure what you mean about valium and not wanting to go down that road again but I think i am fixing to find out. I have been taking valium for at least a year every night and I have been doing so well since adding the estrace cream, I am thinking of slowly taking myself off of the valium. Since I have only been doing 2 1/ mg I am going to start taking it every other night. I do understand that it has to be done very slowly and do have to support of my doc but I have to admit I am nervous about the withdrawl effects.:dizzy:

chasingbliss

05-24-2009, 08:44 AM

Hi ladies - Just found this thread and so glad I did. I agree there should be a space for those of us dealing with urethral pain. I have IC and also have very bad urethral pain. I too was diagnosed with a ureaplasma infection and treated with antibiotics as well last year. I have also had several rescue instillations but I cannot handle the catheters, the pain is so severe. Plus, they don't do much to improve my IC symptoms so it is not worth it. Right now my uro has me on Flomax - 2 pills a night which is working at present. I had to go up from one pill b/c it stopped working after a couple of months. I don't have burning as much as pressure and pain with urination. I also use lidocaine jelly as a numbing agent when it gets really bad, especially after I've had an instillation. I am interested in learning more about the suppositories as I've never heard of those before. Hugs to everyone here.......:)

DenySue

05-24-2009, 09:31 AM

Hi Jen,
Dr. Moldwin mentions in his book "The Intersitial Cystitis Survival Guide" that sometimes bladder instillations aren't as helpful to those of us with urethral pain because the medication isn't in contact with the urethra very long. So he does a urethral instillation instead. You may want to read this book if you haven't already. You can get it from the ICN shop.
It's interesting how our symptoms can vary. I have no pain when I urinate, it's always afterward that I feel the burning, stabbing or spasm type pain in my urethra. It's always more pronounced when I sit down, too.

Namaste to you as well!:pray:

Dakota

05-24-2009, 09:54 AM

Hi everyone,
I find this thread so interesting and hope we can keep it going for awhile. I've noticed several of you have mentioned that using heat helps. I have been doing the opposite and use ice. Maybe, I'll try the heat and see if it makes a difference. I have also used the Estrace cream, but stopped because it seemed to increase frequency. I'm thinking I might try it again.

DenySue

05-24-2009, 10:04 AM

Dakota,
I have been using Estrace cream for about a month now, and I think it does help some. I went into menapause in my early forties, and had heard about Estrace, but my gyn only recently suggested I try it due to some itching I thought was yeast....but a culture was negative. I only use it a couple of times a week now.

Dakota

05-24-2009, 12:12 PM

Hi DenySue
Thanks for the reply. I know what you mean about the itching. It's rare, but when it does start up I always think yeast infection. My doctor suggested using it a few times a week, but as I said I felt that it increased frequency. Maybe my imagination, who knows. Anyway, I was wondering how much do you use? I always have a hard time deciding if I'm using to much or not enough whenever I use any type of med in a tube form. Do you just apply it to the outside? I once tried using it internally, but it caused me such pain trying to use the applicator tube. I really tried it to see if it would make a differance in my pain and ended up with more.

DenySue

05-24-2009, 01:33 PM

Dakota,
When I first started using the Estrace I put 1 gm (the insertion applicator should be labled) into the vagina every night for two weeks...then went to two-three times per week. I insert the applicator VERY carefully, making sure I am avoiding the urethra. I don't worry about inserting the applicator very far, either. Use a mirror if you need to.
DS

jul2873

05-26-2009, 01:32 PM

Hi Everyone,

I've just joined and this is my first posting. Thanks so much to everyone for all of the good help and advice I've seen while browsing the last couple of days. What a great site and community.

I think a bad UTI about four months ago triggered my urethral pain. After several rounds of antibiotics, I was referred to a urologist, although I insisted on seeing a uro-gynocologist instead. He told me the opening to my urethra was inflamed and twisted, and put me on Eustace, which helped some, but I was still in pain a good deal of the time. Then about two months ago I read in another posting on another site (I've lost the link; sorry) that tea tree oil was helpful for this. I don't have much faith in alternative medicines, but I was desperate, as everyone reading this thread will understand. So I tried it. Within a couple of days I was pain-free, and remained pain-free until a few days ago when I went swimming and sat around in a wet bathsuit for an hour. Big mistake, resulting in a bad flare. So, instead of using the tea tree oil only once a day, I started using it every time I used the bathroom, and within two days I was again completely comfortable.

I'm not a doctor, and would not presume to give advice to everyone. This has just been my experience. But the urethral pain is so terrible, and so debilitating, that I wanted to share this experience. I don't know if it will keep working, but for now I feel like it's given me back my life. One caution is that it is very strong. I just put one or two drops in a small dish of water, and wash myself with it. I also looked it up in Wikipedia, which said it had analgesic, antibiotic, and anti-fungal properties.

Best to everyone.

Dakota

05-26-2009, 03:09 PM

jul2873: Welcome! Yes this is a great site, and more people seem to be posting on this particular thread. I'm very interested in the tea tree oil. Where would I go to get it? My urologist told me to try using anything natural or holistic. I've never been a big fan of alternative medicine either, but the fact that you can wash with this sounds appealing, and you're right we all do get desperate at times!

jul2873

05-26-2009, 03:26 PM

Hi Dakota,

You can buy tea tree oil at a natural food or health store. I just got mine at a little health store down the street. They also had it as a cream, but the nice lady there said probably the pure oil was better, as there were no additives. Just be sure to only add a drop or two to a little water. I just wash my vagina area with it. It should sting just a little, I think, so you know you got some of the oil. If it stings a lot I figure I didn't dilute it enough and I just wash myself again with plain water.

Good luck. I hope it works for you. I like the fact that it's just topical, not systemic, like a pill. And it really works for me, which makes me think that the inflammation the doctor saw was really some kind of bateria or fungi, which this oil apparently helps control. My urine tested negative for infection, but I don't think those tests pick up everything. And if the infection is in the wall of the urethra, perhaps the urine doesn't pick it up.

Anyway, good luck. I hope it works for you. Give it a couple of days, anyway. If you are really in pain now, you might try using it throughout the day. When I am comfortable I go back to just using it just once a day, as I am always so cautious about using anything.

ethnograph

05-26-2009, 03:52 PM

Just want to join in and say I too have a lot of urethral pain. It always hurts after I pee- not during. That seems so strange to me. It seems to me that must mean that it's a nerve thing rather than that the pee is burning our urethras. Don't know. It's driving me crazy though. The only thing that helps me is Pyridium which can't be taken very often. Just wanted to chime in as I figure the more of us that speak up the more likely we can get this as a topic on the forum.

Linda

brice42

05-26-2009, 05:12 PM

Nice to meet you, I joined this site a while ago but never started posting until recently. I will try the tea tree oil. Nothing has worked for me except heat(i have horrible burns on the inside of my thighs) and a compounded cream which my pain doc prescribes. it has menthol, ketamine, clonidine phenytoin,and mexiletine. i have not gotten a definite answer as to whether or not it is making things worse in the long run, but it is the only thing i have found to help the burning, which is 24/7 and never stops. it feels like the worst UTI that never goes away. best of luck to you!

DenySue

05-27-2009, 01:06 AM

Hi guys! I saw my Uro yesterday and we talked a good bit about this urethra thing. She thinks I should try PFD therapy. From the way I described my symptoms she thinks PFD could be a cause. She also offered to instill lidocaine suppositories whenever I feel the need, and gave me a presciption for elavil if I want to try it.
The tea tree oil is interesting. Dakota, let me know if you try it, too. I know different things work for different people, but that could be an easy "treatment"! That is the great thing about networking isn't it? We have the opportunity to try and help one another if we can!:)

ethnograph

05-27-2009, 08:23 AM

Hi, About an hour ago I tried washing with tea tree oil. I put 2 (or maybe 3) drops of the oil in 8 ounces of water in a perineal bottle and sprayed it all over myself after I peed. An hour later it still feels like I mentholated that whole area. It's calmed down a little bit as I just put some calendula ointment on my labia. Does anyone know if I made the solution too strong or is it normal for it to feel that way?

Thanks,

Linda

jul2873

05-27-2009, 09:12 AM

You may be very sensitive to it, and you used a bit more than I do. Usually I try for just one drop. If you try it again, and you get more than a very mild burning that lasts more than around five minutes, I think you should yourself with plain water.

Good luck. If you continue to get so irritated by it then you probably shouldn't use it. I'm so sorry that you felt that discomfort. It's been wonderful for me, but everyone is different.

ethnograph

05-27-2009, 09:40 AM

Thanks, Jul. I probably just used too much (3 drops). Didn't realize it was so strong. I'll give it one more try using just 1 drop. It'd be so great if it helps.

Best,

Linda

ethnograph

05-27-2009, 06:27 PM

I tried again with just one drop of tt oil in 8 ounces of water and it felt fine. Too soon to know if it will help. I've got my fingers crossed!

Linda

jul2873

05-28-2009, 12:04 AM

I have mine crossed for you too!

Jul

krisillis

05-28-2009, 11:06 AM

Hi Ladies!

I hope that you'll let me join in the conversation too! I've been suffering from urethral pain for a year now. It's been very persistant. It's abeen pressure in my bladder and an aching pinching pressure from my urethra. Plus pelvic pain. Fortunately my Pain Management Dr has been a Godsend. We've been managing the pain with steroids, dilaudid, and belladonna & Opium suppositories(I am on other meds but those are working best, oh and my sleeping pills I don't know what I'd do with out them). My GP has been hardly sympathetic. I'm not sure if you all have tried this but I have found that sometimes when I am in spasm that sitting on a heating pad can be really helpful.

Christine

Dakota

05-28-2009, 03:21 PM

Hi Ladies

Well so far we've kept this going for four pages, and we're picking up more of us as time goes by.

DennySue: I have not found the tea tree oil yet, but by my research today I've found a store not to far from me that may just cary it. I'm going to check it out. I've thought about the PFT too, but it kind of scares me. Are you going to try the Elavil?

Christine: So you are another one who feels heat helps. I posted before about how I've tried ice and so far almost everyone here says that heat is the way to go. I really need to go and buy a new heating pad. Mine died last year. I'm also on sleep meds and without them I would be awake for days on end. I am so thankful because I would be insane without them.

ethnograph: Please keep us updated as to how the oil is working for you.

Bella: Four pages! I hope that someone notices the need for this particuliar topic.

Best wishes to all,
Dakota

Bella Spirit

05-28-2009, 03:36 PM

Bella: Four pages! I hope that someone notices the need for this particuliar topic.Dakota

Yes, I know! I'm hoping too.
Everytime I visit the thread I see someone new popping their head in, it's great :) There are so many of us and more are coming out of the woodwork :) I don't feel so alone anymore!

I hope you all can find relief. I'm still searching.

:grouphug:

krisillis

05-29-2009, 06:34 AM

Hi Dakota!

yes, heat really helps me. I've tried ice and that has helped on occasion but for me heat works better. I can relate to the heating pad thing, I've killed 2 this year. My friends are all "how can you kill 2 heating pads in a year?" I answer "persistance". LOL! I did find a little relief once when I went to physio but I had to stop because it was too expensive. Anyway I hope all of you feel better soon.

Christine

vtcurtis

05-29-2009, 01:06 PM

Hi there,

I just saw my MD and she put me on Elavil. I'm on week two, but it really seems to help. I've only been on it for a week and a half so I'm not sure. It makes me really tired though, does anyone else have that side effect? I also find myself really hungry lately (which is a great thing for me).

Does anyone know if it's safe to use during pregnancy? My MD says yes, but the notice on the box said no. I asked my pharm. and she said to talk with my doctor. I'm just curious to see if anyone else has talked to their MD about it. I'm not pregnant, but we're trying.

DenySue

05-29-2009, 02:42 PM

I am just getting ready to start Elavil, but I have read many posts here from others that say that it can make you sleepy or tired at first....some say that goes away after a few weeks. How much are you taking? My uro told me take it around 7-8PM, so that I won't feel so sleepy in the morning. I have heard that it will increase your appetite also. Did your OB/GYN say it was okay, or was it your urologist? I think I might get a second opinion on that, but I hope he/she is right! I am glad to hear it is making you feel better...I hear that a lot.:)

Hannah13

05-29-2009, 03:29 PM

Hannah13

05-29-2009, 03:30 PM

sonjalynne

05-29-2009, 03:47 PM

Hi ladies! I guess I'll chime in here too...when I finally saw a uro 2 weeks ago he did a cysto and holy cow...my urethra was SOOOO inflamed!! I had no idea, I thought it was just my bladder, but he told me that my urethra was as much to blame as my bladder.

Oh yeah, before I forget, I buy tea tree oil at Wal-Mart in the pharmacy area. Just ask a pharmacist where it is, they may also keep it behind the counter.

Elavil did nothing for me personally, but I know it is great for some. I'm now on Lyrica and Flomax, as well as Elmiron, Ditropan XL and Celebrex. I use the "good stuff" (Percocet) for flares, which is way too often! It is hard to tell what is actually working right now, but I think it is Lyrica and Celebrex.

I love hearing that others wear out heating pads too! I have a couple in my home and one in my office (luckily I have a desk job and most people don't notice). This is a great thread, hope it keeps going.

jul2873

06-02-2009, 10:54 AM

Hi Everyone,

You probably all know this, but during my last flare, in addition to the estrogen cream and the tea tree oil, I drank really a lot of water--so much so that I had to go to the bathroom every thirty minutes. But by the next morning I was completely pain free. And the next day or two, when I would feel a little twinge, I started forcing water again, and the twinge went away.

So thank you very much to everyone who recommended water. Hope everyone is fine.

Bella Spirit

06-02-2009, 10:52 PM

I'm glad water worked for you Jul.
If I drank too much water I'd be on the loo literally every 5 minutes!

jiriji

06-07-2009, 07:38 AM

Oh hai!! :cat:

I'm another one of the urethral symptoms sufferers.

I can go for hours without needing to pee, and in fact i often avoid it because i know what will follow. As soon as my bladder is empty i get spasms and what feels like someone shoving rusty, jagged razor blades into my urethra. It usually lasts about half an hour and is worse if i bend over and then stand up again. The weird thing is sometimes it doesn't happen at all and other times it hurts the whole time until i pee again, but then won't hurt for a few more hours.

Other times sitting still for too long, like in front of the computer, will cause the pain.

Here's what i've found works: using a scent-free baby wipe after every time i pee, then dabbing a drop or two of tea tree oil (undiluted) on the entrance to the urethra, drinking weak ginger and lemon tea with bi-carb (baking soda) added to it, and taking codeine (usually Mersyndol) for pain relief, and also an antispasmodic.

Bella, i notice you're in Australia. I'm originally from Sydney and now living in Canada, and what i used to buy in Australia was Periactin, which is cyproheptadine. It's an antihistamine but different to things like Benadryl, and i don't know why it works - it just does. Also if you can get some Donnatabs, which are for diarrhea but work on any smooth muscles in the digestive tract and urinary tract. They are an antispasmodic containing hyoscyamine and atropine.

Periactin and Donnatabs are both available in Australia without prescription and so is Mersyndol.

Bella Spirit

06-07-2009, 01:09 PM

Thank you jiriji, I am writing all this down in my diary now :) I really appreciate that :)

DenySue

06-07-2009, 02:10 PM

Hi everyone!
Just wanted to give an update. I have been on 10mg of Elavil for nine days, and it is really helping. I feel much better; most of the time I would say I am symptom free. I know that 10 mg is a small dose, but I only weigh 98lbs and I am pretty sensitive to most medications. I felt just a little hung over the first few mornings, but it didn't last too long. I make sure to take it by 7:00 every nite. Now I am waiting to get started on pelvic floor therapy, but all in all I am doing pretty good:woohoo:

jul2873

06-07-2009, 04:07 PM

Bella Spirit

06-07-2009, 04:44 PM

I just found an article on the internet (http://www.wdxcyber.com/nurine09.htm) that suggests that urethra pain can be caused by the infection of tiny glands at the mouth of the urethra. Here's the relevant part:

"It is not fair to say that urethral syndrome is not due to infection because many physicians believe that it is due to a low grade infection of the Skene's glands on the sides and bottom of the urethra. At least symptoms often respond to antibiotics. The Skene's glands are embryologically related to the prostate gland in the male, thus urethral syndrome may almost be a type of chronic prostatitis in a woman. Treatment of acute urethral syndrome is antibiotics just the same as treatment for a UTI. For chronic urethral syndrome a long term, low dose antibiotic treatment is given on a continuous basis or after intercourse each time if that seems to be prominent in relationship to symptoms occurring."

Anybody been on antibiotics for a long time? I wonder if that's why tea tree oil works for some of us, since it has antibiotic and anti-fungal properties.

It's funny you mention this because I was reading a similar article yesterday on 'Women's Prostatitis' and they say that unlike IC, it isn't a long term thing and can be curable. Interesting.
I have heard of antibiotics being able to 'fix' the problem. I too would love to hear from someone that has tried antibiotics and what type of antibiotics?

Deny Sue it's good to hear that you have some relief. I have been prescribed the same medication but can't take until after the 7th July (because of allergy reasons)
I am looking forward to taking it :)

WOO HOO, it feels like we're starting to get somewhere with this problem, ladies :grouphug:

Montie

06-08-2009, 02:28 AM

Hi Jul & Bella Spirt - I have the same problem with urethra pian and buring...not when I pee but afterwards, it feels infalmed, hot like and open sore wound. I have been on 100 mg of Microbid for almost two years to prevent UT infections but it has not helped my urethra pain. I have tried every thing I know to try and any suggestons I read on the board, my pain doct. just switched me from elivil to tofranil...not much difference. I have tried the tea tree oil and it set me on fire! I stated taking marshmellow root a couple of days ago and I think it may be helping some. Im at wits ends with this....If someone told my carrying dog poop in my pocket would help I would do it LOL!

I would also love to hear from anyone else on daily anitbiotics and if it has helped them or anything other things that might have helped.

Daily - 100 mg Microbid, 800 mg Nurotin, .1mg Estidol, Estrace cream, 10 mg Tofranil, Benadryl, Fish oil 2xday, Marshmellow root 3xday

Thanks,

Hannah13

06-08-2009, 04:52 AM

You might find some releif with pfd therapies, stretches, myofacial trigger point release and a LOT of thermacare. I'm making some progress with this. Luck to you!

Hi Jul & Bella Spirt - I have the same problem with urethra pian and buring...not when I pee but afterwards, it feels infalmed, hot like and open sore wound. I have been on 100 mg of Microbid for almost two years to prevent UT infections but it has not helped my urethra pain. I have tried every thing I know to try and any suggestons I read on the board, my pain doct. just switched me from elivil to tofranil...not much difference. I have tried the tea tree oil and it set me on fire! I stated taking marshmellow root a couple of days ago and I think it may be helping some. Im at wits ends with this....If someone told my carrying dog poop in my pocket would help I would do it LOL!

I would also love to hear from anyone else on daily anitbiotics and if it has helped them or anything other things that might have helped.

Daily - 100 mg Microbid, 800 mg Nurotin, .1mg Estidol, Estrace cream, 10 mg Tofranil, Benadryl, Fish oil 2xday, Marshmellow root 3xday

Thanks,

Montie

06-08-2009, 06:26 AM

Hannah, has pdf therapy helped you with urethra pain?

Bella Spirit

06-08-2009, 01:29 PM

I have found that pfd therapies do nothing for my pain. I believe my urethral pain problem is an entirely different problem to problems that can be soothed by pfd therapies.
Just adding my 2 cents...again :)

Montie

06-08-2009, 02:25 PM

Thank you Bella - Im just trying to gather all the info I can before I go to my uro appt. on the 25th. It gets so confusing to know what to do next...not to metion the out of pocket cost on meds and co-pays for doctor visits.

I cant belive how many other ICers suffer with urethra pain, hopefully if it is this common they will be some knowledge or something avalibale soon that will help all us.

mpizze619

06-08-2009, 02:44 PM

I've been on 50mg of Macrodatin (antibiotics) for over a year now for my severe urethra pain - and it really has not helped at all. I'm afraid to stop it for fear the pain will get worse. The pain feels like a razor is sticking out of the area - I go through lidocaine jell by the tube. The only time it doesn't hurt is when I'm urinating. I have had a few weeks during the past year and a half when the pain hasn't been as bad - can't figure out why or what I did different - but then all of a sudden it gets severe and unbearable. Sitting at a desk for work becomes unbearable at times. (I sit on a donut and wear large pants during the really bad days). Anyway it helps to know I'm not the only one like this - now if the dr's can only figure out a way to cure all of us!!!!

jul2873

06-08-2009, 03:00 PM

Montie, I really dilute the tea tree oil; otherwise it does burn. I put a drop or two in a little dish or water, soak a piece of toilet tissue in it, and then wash myself.

I'm fascinated with this theory of an infection of the glands in the urethra causing the pain. I know at at first I was treated with a sulfa drug, and I felt fine while on it. When I quit the pain came back. Then I was treated with cipro, and the same thing happened. Fine while on it, and then five days after stopping it the pain came back. Then I was given, I think, Bactrim, and it did nothing for me. (All of these antibiotics were because the doc thought I had a UTI at first). Then the doctor said my urine showed no sign of infection and he put me on Eustace. But just because there is no infection in the urine doesn't mean there is no infection in the glands. Plus the infection may be one that the test is not screening for.

Anyway, remember what happened with ulcers? For years we were told they were caused by too much stress,etc. Now we know they are caused by a bacteria in the stomach, and are being successfully treated with antibiotics. I think sometimes doctors are too quick to dismiss pain as being caused by stress or problems like that--esp. when women are involved.

I really do appreciate everyone sharing their stories and treatment. I've learned about the two things that have really helped me the most (lots of water and tea tree oil) from internet discussions. I'm sure lots of people are being helped by everyone's stories.

Hannah13

06-08-2009, 03:18 PM

Hannah, has pdf therapy helped you with urethra pain?

I think the PT has given me the tools that will eventually help me to manage it better and therefore lessen it. I also sit on thermacare pads just about all the time. Lol. Between that and relaxation techniques I'm making very slow progress. I hope you find something which works for you!

Bella Spirit

06-08-2009, 03:50 PM

Anyway, remember what happened with ulcers? For years we were told they were caused by too much stress,etc. Now we know they are caused by a bacteria in the stomach, and are being successfully treated with antibiotics. I think sometimes doctors are too quick to dismiss pain as being caused by stress or problems like that--esp. when women are involved.

That is so true.

I'll also report back when I have tried tea tree oil. I'm a little nervous about this because I don't want to have the experience Montie had! I'll make sure to water it down a lot.

mpizze619 thanks for letting us know about Macrodatin.

Has anyone tried Elmiron for urethral pain?

Bella Spirit

06-08-2009, 04:02 PM

Oh and before I forget, I just wanted to share with you all that a dramatic change of diet can be beneficial.
I do not eat any wheat or gluten products now.
I do not oversalt or use any MSG products (as much as I can anyway)
Absolutely no vinegar or salad dressings.
No junkfood, cola or overly fatty foods.

I have seen a positive change in my pain. The pain is duller and less 'screaming at me'

I still have a hard time with pain and my period though. I think that will always be inevitable no matter what I do :(

Ok I'll love you and leave you all now :)

Montie

06-09-2009, 01:58 AM

Mpizze619 - I can totally relate to your symptoms, I too sit behide a desk for 8hrs a day and it gets so painful and I also have an IC chusion but its not much help, also use a ton of lidocain jelly. My pain also starts after I pee - not during. Has your uro given you any insight on what could be cause the urethra pain???? Mine just says its from the IC...and the pain is coming from the bladder because it and the urethra is all connected, but I dont think I buy that.

Hannah13

06-09-2009, 05:35 AM

Bella Spirit

06-09-2009, 12:24 PM

ICN has accepted our request for a urethral pain topic/forum.
You'll find it under Related Conditions to IC (about half way down the page).
See you over there :)

Thank you Jill :grouphug: and thank you ladies for speaking up :grouphug:

Dakota

06-09-2009, 01:18 PM

Hi Bella Spirit

Wow I just read this great news! Thank you Jill, and thanks to you too Bella Spirit. I'll be visiting this forum a lot!

Best wishes,
Dakota

mpizze619

06-09-2009, 04:08 PM

jul2873

06-09-2009, 04:24 PM

Here's the link to the new forum on this topic: http://www.ic-network.com/forum/forumdisplay.php?f=196

Thanks to Bella Spirit for starting it, as well as this thread!

Bella Spirit

06-09-2009, 04:53 PM

Montie - My doc says its not listed as a form of IC and PAINFUL BLADDER SYNDRUM - it has something to do with the nerves in the urethra - they could be damaged - they could be getting crossed signals from the brain, or a number or other various reasons. She seems to thinks these may be the problems in my case. She has been doing allot of research in this area to try to figure what wouldl work best for me - she has given me valium suppositories which do seem to help somwhat, the lidocaine ointment and soma which is a muscle relaxor that I take in the evening. Good luck to you - most of these remedies are trial and error.

Your doctor seems really helpful and knowledgable. She says it isn't a form of IC, does she give it a label though or does she say it's entirely nerve related?

I'd be interested to know everything she says (ongoing) about this topic. If you wouldn't mind sharing. It's interesting...
I have similar symptoms to you guys. The longer I sit at a desk, the worse I am. The burning is worse just after urination too - not during.

Here's the link to the new forum on this topic: http://www.ic-network.com/forum/forumdisplay.php?f=196

Thanks to Bella Spirit for starting it, as well as this thread!

It was a joint effort :lmao:

mpizze619

06-10-2009, 02:01 PM

Bella Spirit

06-10-2009, 02:10 PM

Im sorry guys - I was really tired when I typed that response - my urogyno says it IS a form of IC and painful bladder syndrome - sorry about typing it wrong. I should have re my response before I posted it.

Hey, No worries!
I thought we might have been onto something there :(

Oh well. We'll just keep cracking away at possible treaments and so forth :)

chelsea0705

06-11-2009, 04:44 PM

I've been taking Lyrica for about 5 months. Seems to help a lot. My primary MD prescribed for me. Seems my urologist is just tired of dealing with me. Seeing a pain MD. She helps and prescribes Percocet but is trying to cut back. It's impossible!! I wish for just a day they could feel what I feel!

Dakota

06-11-2009, 06:54 PM

mpizze619 - Like Bella Spirit I kind of thought wow this is might be something new to think about, but then read your correction. I had to laugh because Bella Spirt knows that I stay up very late after taking my sleep meds and boy I've posted some weird stuff myself. Then when I read it the next day I'm like holy cow where was my brain last night....lol. So I can totally understand.

jul2873 - Your right we owe a lot of thanks to Bella Spirit because she was very helpful and it was her idea to see if we could have our own forum. We need to get everyone on this thread over to our forum, because we can share so much information, and help each other.

chelsea0705 - I have read of so many saying that the Lyrica is helping. I plan on asking my primary doctor if he would let me have a trial period of it. I will have to print out all of the posts about it and bring them with me to my next appointment, because I'm going to have a hard time convincing him about it. I just know I have to be prepared before I go. I don't think my so called uro will go for it because when I brought it up to him, he said he has never heard treating IC with it. Sometimes, I just can't figure these doctors out. I thought at least the uro would be up on the latest!

Bella Spirit - It's now 1:00am in the morning and here I am still at it! ha ha We need to get everyone over on the new forum.

Bella Spirit

06-11-2009, 08:53 PM

Bella Spirit - It's now 1:00am in the morning and here I am still at it! ha ha We need to get everyone over on the new forum.

Yes, I have noticed you are always online when ever I'm online and I always
think to myself "does this woman ever sleep?" lol. I always calculate to myself what time it is over there whenever I'm online and it's got to always be around 10pm-12pm surely.
I'm used to going to bed at about 9pm everynight so who am I to judge lol.

I'll use my magic and see if we can shift this thread over to it's rightful section...

pixiechick

06-15-2009, 06:28 PM

baaaby11

06-16-2009, 03:18 PM

I know this is not tha case for most of you because you have been through extensive testing and have probably ruled out the simple things like this but I have some tingling in my urethra that sort of comes and goes and I was wondering if anyone knows if a yeast infection can cause tingling in the urethra area? I know they are more commonly felt in and around the vagina instead but it was just a thought.

bamagirl

06-16-2009, 04:30 PM

I am so glad this is now a topic because I suffer from urethritis along with IC. I think that most people with IC have urethral pain. Thanks goes to Bella.

chelsea0705

06-18-2009, 02:03 PM

The worst thing about all this is that there are so many people hurting and no one helping :(

I keep hearing the term "urethral spasm" thrown around - which kind of fits what I feel I have. I don't have a constant burning pain, it just kind of - well I use the word "twinges" every few minutes after my first morning pee, for 45 mins or so. some days more intensely than others. Some days I have no pain at all. Reading this forum has scared me a bit about what can go wrong. . . I'm really hoping my pain doesn't progress any worse. As I said in another post I'm going to the chiropractor to explore that option of misalignment of joints pressing on nerves. . . I live in Australia and I feel like whenever I try to explain this to doctors they've got no idea what I'm talking about. If they spent one minute on a forum like this one they'd realise they've really got to get their act together.

What options have people explored in terms of homeopathy/herbs? I've found that marshmallow (the herb - not sugary mooshy delight - although that helps in it's own way :P) can be really soothing. I took some when I had a UTI and it realllly helped alot. It helps somewhat with the "spasms". Horsetail, slippery elm and cornsilk (although I find cornsilk is impossible to get your hands on - at least here in australia) can be quite helpful.

Pix. :angel:

Do you find it is impossible to get your MD to believe you have a UTI. I went in KNOWING I had a UTI but my MD said NO. 2 weeks later I went to Uros office, they said my urine was clear. I know it wasn't, I could feel it. The next day called MD to see if I could leave a sample to check for UTI. They called back and told me to see my pain MD because it was probably a flare. BS!!! I went to the ER later that night and was diagnosed with a moderate UTI! Really! Does this happen over night?

Then when I finished antibiotic I still wasn't better. My MD said the antibiotic took care of the infection. I insisted they check my urine again....sure enough there was still infection present!!!

WHY CAN'T THEY JUST LISTEN TO ME!

DenySue

06-18-2009, 03:01 PM

My Uro always does a culture, because even a low level infection that does not show up on a simple urinalysis can be big trouble for people like us. If you can insist on a culture, do so. Some doctors are just more educated about IC than others, and unfortunately there are some that can't be bothered. Those are the ones that treat every patient the same way...and we know that IC patients do not fit into that mold!

pixiechick

06-18-2009, 04:27 PM

Do you find it is impossible to get your MD to believe you have a UTI.

Actually - I find it's the opposite. I go in with problems and my doctor always immediately assumes UTI. I have test strips at home so i'm usually 90% sure there is no infection . . . but my doctor wastes days and days sending things away to be cultured when there's nothing.

Going to buy some glucosamine today as recommended by BellaSpirit - I've also started taking omega-3 fish oil which supposedly reduces inflammation . . . too early to tell how that's going to turn out.

Pix :cat:

Bella Spirit

06-18-2009, 09:12 PM

Pix - Another Aussie friend of mine has mentioned Chrondroitin with Glucosamine is really good too. Chrondroitin supposedly forms part of the GAG layer. It's also found in Cystoprotek.
I had a look in my local Grocery store today and you can get Glucosamine, Chrondroitin and MSM in powder form. That would be really good to try.

Chelsea - I have had a similar experience to you. I went to the doctors many times to be told that there was no infection. 2 years later they finally found an infection from an atypical urine culture. I have no idea why he didn't test me for that specific infection instead of re-testing me for the typical/common infections over and over.
Doctors can be extremely annoying. I am still searching for that perfect, compassionate doctor (if there is one):flower:

cardave

06-19-2009, 02:41 PM

I have been reading all of the posts re the urethra...I think this may be my problem...about a month ago I started feeling like I had to pee all the time and now it is just about constant..the only relief I get is right after I pee for about 15 min and then the feeling like I have to go again bad comes back. I also feel like it is burning at times in the vaginal area. I have no pain in my pelvic region but do have pressure on my tailbone. I try to go out to shop and I feel like I have to run to the bathroom and when I do just a dribble comes out especially if I just peed 15 min ago. I cannot think of anything else, this has consumed my life...I dont want to go out or do anything. I do have relief when I lie or sit down but as soon as I start to walk around, the urgency starts again. I have been tested for infection three times, I have just had a cystoscopy and the urologist found nothing..he didnt mention looking at my urethra (i hope he did) How do you find out if you have some sort of infection in the uretha..would it not show up with a urine test? I am on Celexa 15 mg now and it is helping me cope along with ativan. I am seeing a chiropractor who thinks this may have something to do with the nerves that go from the bladder to the spine. If I have a fungus or something like that, would washing with tea tree oil help..would it get up into the urethra? I know I am asking lots of questions..you gals seem to know a lot about this. I look forward to hearing your responses.

DenySue

06-19-2009, 03:03 PM

cardave,
Did your Urologist do a urine culture? That's the only way to know for sure if you have an infection. Some do not show up on a simple urinalysis. Also, did he/she mention anything to you about IC? It can't usually be diagnosed with an office cysto. Also, pelvic floor dysfunction can cause some of the symptoms you mention. If your Uro is not very educated on IC you may want to try and find one that is. You came to the right place for support and information!:welcome:

Bella Spirit

06-19-2009, 03:03 PM

Hi Cardave

I can empathise with you :)
Firstly, there are a many tests that can be done to show up different microorganisms and bacterias in the urethra. A standard test (MSU) isn't always enough. Hopefully your uro has given you these tests.
I have learnt, especially from this site, that there are a lot of different problems that can occur in and around the urethra that causes all these sorts of problems.
There are many posts in this section with people that have similar symptoms as you (tailbone pain, nerve pain etc). Hopefully those people can chime in and give you some advice.
Have you tried or are trying pft? I have heard this to be really good.

jul2873

06-19-2009, 03:06 PM

Hi Cardave,

I can only tell you my experience with tea tree oil. I also had your symptoms, and my uro-gynocologist put me on Eustace. After about three weeks it was helping a little, but I was still very uncomfortable much of the time. I read in a posting about tea tree oil, and was so miserable I decided to try it. I bought a little bottle at a health food store, put a couple of drops in a dish of water, and cleaned my vagina area with the mixture. I did this once a day, and after only a day, I felt much better. By the second day I pain free, and have remained so, except for one brief flare when I let myself get dehydrated. I forced water for 6 hours and then was fine again.

I'm now only using it every other day and am still pain free. Actually, I'm better than pain free. Even though this whole thing just flared up suddenly about four months ago, now that I'm better I can see that I've had a very mild version of it for years. The tea tree oil, and Eustace have made me more comfortable that I can ever remember being

I see my doctor again next week, and am curious what he will say.

Good luck to you. Even though my symptoms were the same, causes might be different and it might not help you. But I hope you find something that does!

Dakota

06-19-2009, 03:20 PM

Hi cardave: I've just read your post and wanted to let you know that we now have a forum for urethral problems. If you're on the forum home page it's about half way down on the Conditions Related to IC. It is the result of this whole thread turning into the seven pages, and since there are so many of us, Bella Spirit asked if we could have our own forum, so we have her to thank for this.

To answer some of your questions here, I have had constant urethral burning for the last three years, but like you no real pelvic pain. For me it started after some procedures for kidney stones. I also have the sore tailbone. I also had one dilation and cystoscopy with biopsy. I've been seen by four urologists who always send for the urine cultures. They show a high WBC count, but never any bacteria. I would think if you had an infection in the urethra it would show something on the urine test. I'm inclined to agree with your chiropractor that some of us have nerve problems. I've always believed that something went wrong and caused some nerve damage when I had the three procedures for the stones. I have not tried the tea tree oil yet, but maybe someone else here will chime in. As far as frequency goes, mine varies from day to day. Somedays it's like every 30 minutes and others I can go for about two hours. Anything more then that will cause me to go severe burning pain.

cardave

06-19-2009, 03:31 PM

Thanks for all of the input..I am going to try the tea tree oil for sure. Is Eustace creme estrogen? I do have estrogen creme, but have not used it because I have a big cyst on my ovary and the doctor said it would make it bigger. The urologist only told me to try vesicare or detrol and that I had to retrain my bladder...I have no idea why, I was always able to hold my urine for a long time before this happened. I just called a centre call Bowen who does PT. I am going to try that as well...I am supposed to go to a wedding tomorrow but dont know how..when I have this constant urge to pee..I am supposed to be referred to a gyno but have not heard anything yet...the other gyno I saw just told me there was nothing wrong and was not worried about the cyst...so many opinions..I just want this to STOP! so I can start living again...my gp is useless..I am finding out we have to be our own doctor...I am so glad for this site for the support and info

jul2873

06-19-2009, 03:45 PM

Hi Cardave,

One caution: the tea tree oil can burn if it is not diluted enough. I'd start with only one drop in about 6 or 8 ounces of water, and if you tolerate that, perhaps make it a bit stronger. I think to do any good, you have to feel a slight burning. The slight burning only lasts a short while. And it is nothing compared to the pain and burning I felt before using it.

Dakota

06-20-2009, 07:58 AM

Hi Bella Spirit

I just realized last night that our whole tread did get moved over here. :smile tee When did that happen? Sometimes I think I'm really loosing it. :loco:
Anyway, I'm so happy everyone is over here now. :woohoo: I'm so hoping we can continue to share thoughts and ideas.

Wishing everyone the best
Dakota

baaaby11

06-20-2009, 09:52 AM

Do you guys have these problems when you are sleeping? I will have them before I fall asleep, but as soon as I fall asleep, I never wake up because of them. This does not just include my nightly sleep. This also includes any naps I take. It can be TERRIBLE before I go to sleep and sometimes harder to fall asleep because of it (my sensation is more of a tingling or a tickling, rather than a pain) but it never bothers me once I am sleeping.

pixiechick

06-21-2009, 03:15 AM

Bella Spirit -

Can't thank you enough for recommending the glucosamine. Couldn't find the chrondroitin (spelling??) but I've been taking Glucosamine + MSM for three days, and today I was almost totally pain free. Amazing!!!

Interestingly I finished my exams yesterday, and today I'm feeling better, wonder if my being stressed made it worse. If stress is a factor - that's kind of annoying because the thing that stresses me out most is my health lol. Irony. . .

Am feeling much better overall. - Quick question: I have UTI test strips at home, and often they show a low WBC count. I kind of assumed this was from *ahem* vaginal discharge (sorry gross . . . ) as I read that it can show in females urine quite often. But reading another post, someone said they often had a high WBC count in theirs. . . what does the presence of WBC in the urine indicate? Is it just inflammation? I notice on days when my pain is lessened, the WBC is almost zero. Obviously there's a link there. . .

Thanks again to everyone on this board - I've only been here a week or so and you've helped me alot! :D

Bethany2v

06-22-2009, 10:09 AM

Hi everyone!

I'm so glad I found this thread, most of the other ones don't really talk about urethral burning which is my main symptom! I tend to have a less sharp burning before I go to the bathroom and then afterwards it turns into an intense, knife-like stabbing, on fire burn! This often keeps me from going to the bathroom because I'm so afraid of the pain I know is coming, but holding it in probably just makes it worse. I've only used heat a couple times, i mostly get a glass of ice water and soak some TP in it and then press it against my urethra to try and numb the pain. It seems to be a more effective relief than heat but maybe i just haven't used the heat enough.

Right now the meds I'm taking are Flexeril, Tramadol, Pyridium, and Zoloft (for depression). I've tried Prosed, Lidocain gel and patches, and Sanctura but none of those have seemed to help. When they did my Cysto they did it without any anesthesia and it was the most painful thing ever, seeing as they were shoving a tube up my urethra which is where i have all my pain.

I went to a Physical Therapist for several months and she worked on my Pelvic Floor Muscles. It seemed to help alot. My pain is still bad but it's not as crippling as before. She also gave me an inferential stimuator (like a TENS unit). I've found that while it doesn't really take away the pain it helps distract from it and i'll take any distraction i can get!

I'm curious about the tea tree oil, estrace cream and marshmallow root some of you mentioned. With the oil you're just putting it around the urethra? And do you know where I could find the marshmallow root? Is it a tea or pill?

It's nice to know that i'm not the only one experiencing this urethra pain! Hopefully doctors will start to look into this side of IC more.

Dakota

06-22-2009, 11:13 AM

Hi everyone,
Well I finally found the tree tea oil today. Thanks to whoever it was who mentioned that Walgreens carries it. I will be trying it soon, and I will post back about my experience!

Pix - My last two urologists told me that high WBC in urine indicates inflamation in the bladder and it's very common in IC patients. My burning pain is constant, and I have not had a urine test or culture without the high WBC in three years. I also test at home and the results are always the same.

jul2873

06-22-2009, 02:19 PM

Hi Bethany2V,

Just remember to dilute the tea tree oil. I put a drop or two in a dish of water, and then wet some toilet tissue with it and clean my vagaina area. Since I started using it, a couple of months ago, I've only had one flare-up and that was due to being dehydrated. In fact, I've been so well lately that I've started drinking real tea again. What a pleasure!

Best of luck.

Mary

pixiechick

06-22-2009, 06:56 PM

Went to Chiro today and so far, no pain at all :D my urethra feels totally normal. Amazedd. I had the same problem as another user - back out of alignment and one hip muscle was really twisty/tight, shortening one leg. She evened out my legs and cracked my back a bit, and now i'm in no pain. (except for where she pushed my back really hard lol!) Hoping it lasts, but I'm seeing her again on Saturday. Definitely recommend seeing a chiro of some sort to see if your pain might be related to your spine.

Bella Spirit

06-25-2009, 07:34 PM

Dakota - Lol. I think the thread has only been over here for about a week. You are not losing it :lmao:
I kept forgetting that the thread had been moved as I'd aways go into the "Share Your Story" section. I think I've done it about 8 times --- now that's losing it :loco:

Pixiechick - I'm so happy that glucosamine is working for you. I honestly reckon it works wonders.
I went grocery shopping the other week and they had the whole glucosamine/msm range on special. And I mean ON SPECIAL. Usually they cost around $30 for 200 tabs but they were marked down to under $10! They were just having a huge clearance and I was in the right place at the right time :rolleyes:
Also Pix, how much are you paying for your chiro? ...and how many times do you have to see him/her?

Thanks everyone for recommending tea tree oil. It actually works excellent on my eczema (still waiting for the dilation pain to calm right down before I go about using it down there :))

pixiechick

06-25-2009, 11:21 PM

Ooh I'll defs check out the store and see if I can get some glucosamine on special too :) My chiro I pay 35$ p/session. It's usually 50$ but with medibank private it comes down to 35. I saw her last week and pain has improved, (First day after I saw her it was totally gone, but it's creeping back slowly.) seeing her again tomorrow. She recommends I come in about once a month following tomorrow's treatment.

leela

06-26-2009, 03:49 AM

Hi everyone :hi:,

Finally I found a thread, where I can totally relate to other people's symptoms!
I've been having urinary problems for more than a year now (I'm 21) and have no idea what's causing them. The initial trigger was intercourse and since then I've had many flare-ups. For a while I've assumed they were UTIs (and so did my numerous doctors), but having read about IC, I think it could be the case.
I've had a cystoscopy recently, which showed I had a healthy bladder and urethra, but then I found out on this forum that without hydrodistention cystoscopy can't tell you if it's an IC. Now the frustrating thing is, the hospital records are vague and nurses can't tell me if the doctor did a hydro! :loco:

I think my main problem is burning and general discomfort in the urethra ( and maybe lower part of the bladder). I think I go to the toilet quite rarely and can hold large amounts of liquid, but sometimes, for unknown reasons, I feel like I need to pee much more often. Also, though it might seem crazy, it's annoying that I'm always aware of the area down there, that's it's not necessarily painful, but I still feel that it's always, even a little bit, sore.
I was wondering, how many people here have been diagnosed with IC and do you follow IC diet?
Bella spirit, you've mentioned glucosamine in the thread, but I can't find your original post. Could you please please tell me how to take it? :help:

Bella Spirit

06-26-2009, 11:05 PM

Hi Leela

Sorry to hear about your frustration :(

Glucosamine comes in tablet or powder form. Powder form is quite good as you can add it to your food.
You can get Glucosamine with Msm and Chrondroitin (Chrondroitin supposedly forms part of the GAG layer and is also found in Cystoprotek).
I have found some relief in using Glucosamine.

I consider diet to be very important. You should try examining your diet just in case there is one particular food causing your pain. My 'flare' food is bread...who would have thought :)

pixiechick

06-27-2009, 02:22 AM

If i don't have any urgency or frequency issues, does this mean I don't have IC? I just have urethral pain. I should probably just go to the doc and ask but I'm scared of what they are gonna tell me, or if they're gonna make me do a cytoscopy (i'm really freaked out that this could make my pain worse. . . ) and also I don't have any money at the moment. help :(

Bella Spirit

06-27-2009, 02:46 AM

Hi Pix

Don't be scared :)

It is important that you get it all checked out by a specialist and because I am also Australian, I can give you some info and advice on how to go about it. Ask your GP for a Uro referral through the public system. It can take a little while to get to see someone but at least you know it's covered on Medicare and it wont cost you anything.

Who knows, you may not have IC at all :)

leela

06-28-2009, 03:46 PM

Bella Spirit,

Thanks a lot, I'm definitely going to try it! :) How often do you take it? It reminded me of D-mannose, which I used last year. It seemed to help, but now I'm not so sure, because apparently there are so many factors that could affect bladder/urethra.
I really have to start the IC diet, but I don't want to give up coffee and tomatoes :( Is it just bread that causes the flares for you?

Bella Spirit

06-28-2009, 04:21 PM

Hi Leela

I take it twice a day which equals 1000mg of Glucosamine a day. It's worked wonders for all my joint aches and pains too. It took about 4 weeks to see an improvement though.
All you can do is try it and if it doesn't work for you then at least you've eliminated a potential treatment.
It's a start and a relatively cheap starting point too :)

Wheat is the main cause of flares for me but I'm still in the trial and error process. Luckily for me I don't like tomatoes!
Coffee (1 weak cup a day) is alright but I will still experience frequency/urgency.
Some other foods I can't eat are: MSG, vinegar, Coca Cola, diet shakes or any sort of 'meal in a drink', soy sauce and cheese.
Just try giving up coffee and tomatoes for a week and replace them with something similar but less acidic (tea etc) . You could find that they are not the cause of your flares :)
We are all different so you may want to start your own food diary :)
Hope this helps a bit :)

rosehill

07-01-2009, 05:51 AM

Another gal here - with only urethral symptoms too. I went to a uro over a year ago who did a cysto and said my urethra was very inflammed, but my bladder was fine (small, but fine). I never got a real answer from him about what is is, nor any real coping stratiegies, so I stopped going when my insurance ran out and I'm still waiting for my new insurance to kick in. (Hopefullt I wont' get the "pre-exisiting condition" stuff.)

I am SO relieved to see there is a place to go to talk to others about this. I am reading everyone's remedies and I'm feeling better that I have some options to try because I'm sort of "flaring" right now and I'll do just about anything to make it stop! Normally, it just comes and goes. Sometimes I'll be completely fine, sometimes it will be a day here or there with mild burning and other times like now, it's been 2 weeks of almost non-stop burning. And I have the cycle thing too. It seems the less I go the better I feel - the burning starts a bit after I urinate!

UGH!!!! I's so sorry that you all feel this way too. But I appreciate all the advise and info you have given. it's been more helpful that that uro.

leela

07-01-2009, 11:37 PM

Hi Bella Spirit,
Great, I'm going to start it soon and I'll tell you how it goes :) And if it doesn't help, at least it's not harmful or expensive. Reminded me of the times, when I used to shove down my throat any medicine the doctors gave to me (including half a dozen various antibiotics) in a vain hope that they would help. How naive :)

Wow, I didn't expect dairy or bread to cause the flares, I thought it was more like chili peppers. It's going to be a bit difficult for me, given that I don't cook, and my diet consists entirely of crisps and coffee :)

Hi Rosehill,
You're right, it's so much easier, when you have people to talk to, who are going through the same. My friends are sympathetic, but sometimes I feel like they think I'm just whining all the time. Most of them never had a usual UTI, let alone constant discomfort down there, so I don't really blame them.

It's interesting that a lot of people (including me) seem to have more soreness after they urinate. The way my doctor explained is that the walls are inflamed and after urinating, they rub against each other - he was talking about bladder, but I think it could be possible with urethra, too.

Also, do you feel like your urethra "twitches" sometimes? I feel like mine sometimes contracts or opens up a little; it feel like I'm about to pee, even though the bladder is usually empty.

rosehill

07-02-2009, 04:28 AM

Hi leela!

Thanks so much for your nice reply - it is gso much better to not be alone in this (but I'm very sorry you're going through this too).

You know, I don't really have the twitching... I've experienced it a handful of times, I think when I was having an AWFUL day. While the bad days have been high in number lately, the twitching isn't happening very often.

I'm planning in getting some glucosamine and tea tree oil in the next few days... hope it works!!!!

laura917

07-02-2009, 09:15 AM

Ladies,
I'm so relieved to read these threads. I was diagnosed with mild I.C., adenomyosis and PFD. My urologist believes the I.C. is not causing all my constant pain. She believes its the PFD. I am currently going to a Physical therapist. I was skeptical at first. however, within the first 3 weeks, I saw a huge improvement in my symptoms. My main symptoms were the frequency,pressure and urgency. The pressure and uregency was there 24/7. I thought I was on the road to recovery but my symptoms flared up when I got my period. I've been done menstrating for 3 days and I still have my symptoms. I just saw my PT yesterday and she said my pelvic floor was very tight and my hips were not aligned. she adjusted my hips and massaged my pelvic floor. I felt better for a couple hours but my symptoms returned. I'm trying to relax my pelvic muscles but it's hard. I take motrin and urelle. The only thing that seems to work is sitting in a bath tub. If anyone finds a medication that really works for the urethra, let me know. I believe my urethra is the problem. Like someone mentioned, I feel like if I put pressure on my urethra, the pain subsides a little. I see my urologist in a week, so I'm hoping she has something new to prescribe. Any advice is appreciated. I also get that pinchy feeling in my urethra.
Laura

DenySue

07-02-2009, 02:58 PM

Hi all,
I have been super busy with work and haven't checked in on you ladies lately. I am getting ready to change jobs so please pray for me!
I have been using the tea tree oil for a couple of weeks...not really sure if it is helping... certaintly isn't hurting and I will say that I find it very soothing. I will keep using it for sure. I am up to 25 mg of Elavil a night and am having very few symptoms. The Elavil has helped me tremendously. I have stopped taking oxybutnin, which is for OAB, which I am not sure I ever had anyway! All and all I am doing very well. I am going to start PF therapy later this month, and I truly believe that PFD is playing a big part in my symptoms. We'll see. Anyway, it's good catching up with you all, and have a great 4th of July! I will let you know how my new job goes. I start Tuesday, the 7th. It is more money and better benefits, so :pray:
Thanks!!

Bella Spirit

07-02-2009, 05:54 PM

Hi rosehill and laura917 :welcome: welcome to the club. I hope we can help you as much as possible :grouphug:

leela - crisps and coffee lol. I absolutely loved crisps and coffee too. Giving them up was hard but I definitely noticed some relief. I know it's hard but at least try and have a break from them for a week or two and see if you notice a difference.
I have been doing some recearch into MSG (monosodium glutamate). What a nasty little ingredient that is and it's in so much processed food. You also may want to watch out for that leela.
I stopped all MSG intake and I feel a lot better for it.

Denysue - It sounds like everything is going excellent for you. I'm very happy for all your success. Go get 'em girl :dance:

pixiechick

07-03-2009, 05:55 PM

Leela - I have the "twitching" pain you describe, usually starts a few minutes after I pee (though usually only in the mornings, when the urine is most acidic...) It could definitely be the walls of the urethra rubbing against each other, that seems to fit.

Went to the doctor and she gave me a real low dose antibiotic - she said there are multiple things that can inflame the urethra and that often it responds to antibiotics. I responded with my usual eye roll, but I've actually found if I take my antibiotic before I pee in the morning (like a couple of hours before) I don't get any pain . . . I think this may be related to the fact that the antibiotics alkalize the urine though . . . Even so, I'll finish the course and see what happens. I fear when I stop taking them the pain will return along with acidic pee. . . *sigh* it's such a bummer. Still, I've had a good few days on these antibiotics, but cramming in the probiotics as well to try and fend of yeast infection, which may be inevitable . . . I'm finding that diflucan isn't working as well as it should for my yeast infections - does anyone know any good home/herbal remedies?

Thanks guys for your continuing support :)

Bella Spirit

07-03-2009, 10:25 PM

Hi pix

A nurse once gave me a really good idea to rid yeast infections. It may sound horrible but it works!
Soak a tampon in tea tree oil (diluted of course) and insert. Tea tree oil is a natural antifungal.
Tea tree oil is also good for eczema and ringworm.

Dakota

07-04-2009, 04:23 PM

Hi Ladies

It's been awhile since I've checked in here. I know I told you I finally got the tea tree oil and I've used it several times so far. So far I will say that I do find it soothing. It's weird, but for some reason I like the smell of it. Strange! The other thing I've done is I've gone back on Atarax. For some reason Elavil worked for about a month and that was it. I have increased the Atarax from once a day to twice. One in the morning and one before bed. I think it's working better with this higher dose. Hope everyone is doing well.

Dakota

leela

07-08-2009, 10:04 AM

Wow, this thread is getting bigger! :)

Bella Spirit, oh yes, I know this MSG ingredient. It's not very healthy, but it makes food so delicious. Lol, seems like tea tree oil can cure pretty much everything :)

Pixiechick, Antibiotics didn't help me much, but I still continued to take them. There was one time half a year ago, when I didn't have any pain (I'd just started another course), but as someone explained to me on this forum, it's probably due to the fact AB have anti-inflammatory properties. Is there another way of making urine less acidic? I think that AB messed up with my body, and now I would only take them for a real reason, not in case they might help.

pixiechick

07-09-2009, 04:49 PM

Hi guys,

Have some interesting news. I switched to a physiotherapist (I've previously been seeing a chiropractor) and he's been helping me with my back pain, my L5 vertibrae and my sacro-illiac joint are apparently inflamed from bad postured and weak abdomen muscles. He's also helping me become more educated about anatomy, and that the bladder and pelvic area are largely affected by what's going on in the spine. Anyway - he suggested I take Voltaren which is an anti-inflammatory to soothe my back muscles - but it's also hugely helped with my urethral issues. I'd probably say 75% improvement. Most of the day I'm pain free at the moment, really minimal pain after urination, sometimes none at all, still noticing some twinges during sex or if I "push" on those muscles down there. But the Voltaren is really good. I've had no side effects from it, and it's $12.25 for a pack of 20 (I'm taking two per day.) I'm hoping that if I can keep the inflammation down while I fix my back (as I _think_ it's all tied up together) then i should be able to settle down that inflammation permenantly. We live in hopes :)

Has any one else used this drug? (I'm not sure what it's called in america - but the actual drug is called Diclofenac and voltaren also includes potassium.)

Bella Spirit

07-09-2009, 04:53 PM

Leela - You should be able to buy an effervescent powder from your chemist to make your urine alkaline. The brand in Australia is called Ural, I'm sure you have something similar.

Dakota - Welcome back. How's your sleep going? I have started taking Diazepam for my sleep too. It's the only thing that works for me.

Pix - Glad you are getting some relief. I haven't tried Volaren yet but I have heard it's really good for inflammation. Let us know how you progress with it.

pixiechick

07-12-2009, 01:51 PM

Had a bit of a rough morning - pain is back but have taken my Voltaren and it's kicking in well :) I think my pain may be related to the fact that I snacked on milk and biscuits last night right before i slept. I'm wondering if maybe I have a milk allergy. . . I drink a lot of it. I'm experimenting now by not drinking milk for while! Does anyone else find that milk flares up their symptoms?

Pix:cat:

duana

07-12-2009, 02:34 PM

hi,i'm new here and happened to find your messages.i thought i was the only one dealing with this problem,urethral burn.mine started more then 10 years ago.it was the only symptom i noticed when it started.i happened to notice this very uncomfortable urethral burning upon sitting which i thought was odd.it got better and later more symptoms came,the frequency,the urgency,the tender bladder,backache.everyone speaks of pain,is a burning feeling considered pain?i thought i had a uti especially since the burning was bad upon urination and lingered afterward,but there was no bacteria only micro blood.i notice that drinking a half teaspoon of baking soda in a glass of water really helps.for me,prelief isn't working as well as it once did.my gynecologist said she'd prescribe elmiron but i'm not sure if it would help and worry about side effects.does anyone else have hematuria in a urinalysis?
hugs to all.i know what you're going through!

duana

Dakota

07-13-2009, 03:26 PM

Hi duana

Welcome to our club, and as you can see, you're far from alone. I can't believe how big this thread has gotten. To answer your question if burning is considered pain, I would say yes it is. I know when I first tried to explain this to friends or family members, they just couldn't understand it. I always have high amounts of WBC or luekocytes in my urine, but never any bacteria. I've never had hematuria, and from what I've read about it, some people just do and a cause is never found. Have you had any recent tests done on your bladder or kidneys? Also, I'm sure you already know, but be carefull with the baking soda treatment. It's good for an emergency when the pain gets really bad, but not too often because of the sodium. Are you or have you taken any meds for IC?
You can learn a lot about the different treatments available. Are you following the IC diet? It's a good place to start, but I don't know if you've done any of these so far. Let us know, and I'm sure others will respond too.
Best,
Dakota

duana

07-13-2009, 04:12 PM

Hi Dakota and thank you for your reply.I've been in a flare for almost a year with the exception of about a month.It started last Aug. and I did get relief for about a month or so in the spring.I think stress started it flaring again.I try to watch caffeine and spicey foods but where can I find more info. on the IC diet?Do you take Elmiron?I've read lots of literature on Elmiron and the side effects scare me.Do any of you have IBS or fibromyalgia?I've has IBS for years and have been suspecting fibromyalgia for a couple years due to the joint pains.I couldn't believe it when I started doing searches about interstitial cystitis that these 2 other illnesses sometimes can occur with IC.As if IC is not enough to handle!

Hope everyone is doing well!
Duana

Dakota

07-14-2009, 09:29 AM

Duana if you go to the top of this page and click on patients, you will see how to get to the IC diet. There is so much info there for you to read and learn about what foods to avoid and which are considered safe. Stress is one of my worse triggers, and is very hard for me in particuliar to control. I have been offered Elmiron several times from my Urologist, but because of the cost I've turned it down. I am reconsidering that now that my insurance has changed again. I did try it once about 3 years ago, for a few months. I found that I had no side effects, but of course everyone is different and won't know how it will effect them until they try. There are many other things to try besides Elmiron, and there are other conditions associated with IC. For instance, I have Sjogren's Syndrome which is also an autoimmune disease. Many here with IC also have IBS. Are you seeing a Urologist at this time? Are you on any meds? I hope you will explore this site because there is so much information here, and very nice people too. You've come to right place!
Best,
Dakota

duana

07-14-2009, 12:40 PM

Hi Dakota,
You mentioned you took Elmiron a few years ago for a few months.Were you on the meds.long enough to see any improvement?One of my biggest problems is frequency and next would be burning.There are patient assistance programs out there that if someone doesn't have insurance they may qualify for free meds.which I am checking in to.I thought I'd mention this on here in case there are some people who may not know this.Check into it on the internet.

Duana

Dakota

07-14-2009, 01:20 PM

Duana it seems like you really want to try Elmiron. Have you read much on the forum for Elmiron? If I remember right I was on it for only about two months. I only stopped it because of the cost. This was not nearly long enough to say if it would have helped or not. I know some have had great results with it, and others stopped taking it because of various reasons. If there's one thing I've found out here it's this. No one can say for sure how any individual is going to react to a med. You can only try it for yourself and see how it goes. There are some here who take Glucosamine because it is supposed to have a similiar effect of the Elmiron. You may want to look into giving Cystoprotek a chance. I took it for a few months, but stopped because it seemed to increase my frequency. Others have had great success with it. I hope you have some luck with the patient assistance program.

pixiechick

07-17-2009, 06:13 PM

Hey guys . . . Woke up this morning with an actual UTI, so annoying. Tested myself and is full of nitrates so pretty definite infection. Luckily I have some antibiotics on hand so I'm just praying i'm still sensitive to this type. . . grrr. Pain isn't too bad so that's something. Hope everyone else is doing well.

Pix :cat:

duana

07-18-2009, 11:05 AM

hi pix,hope your antibiotics help and you'll soon feel better!try to keep well hydrated with 8 glasses of water or so.

take care.
duana

nickyboy

07-19-2009, 08:15 AM

hello all....im new here, so bare with me.....,.i had bariatric surgery eight years ago.,.,,of course a catheter was used for me to urinate..,..,i remember the first time i urinated without it in the hospital br...,i sreamed so loud the old man in the bed next to me , thought i was dying lol.....,anyway when i was discharged..there was aburning a the tip of my penis.,.,.,very annoying.,.,,doc said it was a uti...gave me antbiotics, and it went away..so it was an infection...fast foward.,,,3 yrs later ,,back in hospital for reconstructive surgery for skin removal.....I TOLD SURGEON NO CATH...he said impossible....welll after an 8hr surgery...i was really out of it...,it must have been 3am,,,nurse came in to put new foley in.....well, she screwed up..couldnt get it in..caused bleeding..she calledon duty doc.,.,he couldnt do it either..2 dummies lol....,,they had to call the uroligist at 3am....,man was he ******...i cant repeat what he said lol................anyway ;;ive had burning pain at the tip since then...,.,,,,went to my local uri.,,he tried anti biotics 8weeks.,.,nothing..,,then elmiron3months nothing.,,,,,then went to one of the top docs in jersey.,,,,,,he gave me one of those bladder holding tests.,.,.,when he put the tube through my uretha..i screamed like i did the first time after my bariatric surgery,,,he diagnosed me with chronic pps...prescribed nuerton..didnt work...,.,had been taking percet for yrs. and needless to sayi got addicted....,been seein a phych..for dependence..has me on subutex for 13months..its a miracle pain free 99pct of the time...............but still get pain when having an orgasmm or urinating..................whew lol..............anyway i know that nerve was damaged,,thats why im at this site...,has anyone had similar problems...,ty for reading my poorly typed blog

Dakota

07-19-2009, 10:46 AM

Hi nickyboy and welcome to the ICN. Sorry to hear about your surgery and catheter experience. You say you've been on Elmiron and I'm wondering if you're still taking it? Some people take it for up to a year before it does anything. Good for you for taking care of the Percocet addiction, and I wish you contined success with that. You mentioned that you have seen one of the top doctors in NJ. I was wondering if you could tell me the name of who you saw? I'm in the area, and am searching for a new doctor myself. It's always good to hear of someone else who has had a good experience. Wishing you the best, and again welcome!

nickyboy

07-19-2009, 01:38 PM

hi dakota and thankyou for thhe welcome....,.,i took the elmiron for 3 months, and discontinued it...i think my bladder is fine, but uretha or the puendal nerve are damaged....,.the subutex helps with pain, and also my depression...plus i do not need percs...it has a ceiling effect, and you cant build a tolerance to it, ive been non 12 mgs for 15 months...............my urologist name is dr. walmsley..he in montclair,,he was in nj monthly mag...very nice dr,....caring and compassionate...........just google him up..i think his first name is constantine...hope this helps...nickyboy

pixiechick

07-20-2009, 02:46 AM

Hi again. . . am feeling much better except I now have a yeast infection . . . I don't know whether to keep taking the antibiotics or just to stop . . I've used the teatree oil internally all day today and it has worked a charm, (thank you Lindsay!!) . . but it's 10 day course of antibiotics so it might get worse . . . I really hate all this I thought I was over the UTI phase - at the beginning of this year I had one every month for 4 months which was just awful, but then they stopped for 3 months . . . now i have one again . . . I think all the UTIs are the cause of my continuing urethral pain as the inflamation doesn't get a chance to heal and also maybe the infections have scarred my urethra. . . I'm thinking of taking cranberry pills but I worry that the additional acidity might increase my day-to-day pain . . .

I could really use some suggestions or just some hope i'm feeling pretty low right now :(

duana

07-20-2009, 10:59 AM

hi pix,i'm glad to hear you are feeling better with the uti.i tried the cranberry pills last spring and found out the hard way that cranberry pills caused more problems.it made all my ic problems worse.maybe that's not the case with everyone but that is how it worked with me.i'll never take them again.if you are sure you have a uti and not a bad flare then i'd think you should still continue with the antibiotics to get rid of the uti infection.have you tried monistat or does it cause more burning?i hope someone else can reply with more suggestions.

i wish you well!

duana

jul2873

07-21-2009, 02:48 AM

Don't forget the acidophilous pills for yeast infection. They are a concentrated form of the culture in yogurt, and help replace the friendly bacteria that antibiotics destroy. I found that four pills a day, spaced out, along with the tea tree oil got rid of the yeast infection I got from the antibiotics. I still take one a day now, just to be safe.

leela

09-23-2009, 11:29 AM

Hi everyone, haven't been here for a while :)
I've been to a urologist today and he said that the results of the cystoscopy I had in June were normal. They did a hydrodistention, the capacity was good and there were no abnormalities in the bladder or urethra. He had referred me to a gynecologist in the same hospital. I'm so confused.
I was wondering how many of you had a cystoscopy and how did it go. Also, do you feel that the pain can get worse before period?

duana

09-23-2009, 02:48 PM

my frequency gets worse before my period and during ovulation.

duana

Lemur

10-24-2009, 07:21 PM

I'm going to try to chime in. had skene glands checked for those rare bacteria and none found. but I have pain solely in urethra. I have not been able to SIT since this started 2 yrs. 10 months ago. I have been so far down the opiate track that I became suicidal from them. afraid to take them again. only temporary, have to keep taking more due to tolerance and eventually they'll kill you on their own.

as in constant pain unless lying down to LESSEN it. I'm only able to walk about 20 min day very slowly some days. I now need pressure mattress to keep the bony prominences of my body from disaster and horrible pain all by themselves from time spent in bed. trying to get it from govt as cost over 1000 dollars. I'm in Australia where there are no drugs and I'm now impoverished financially and the pubic drs. are VERY bad and no one is helping me. I'm seen as a pariah because of the intractable nature of this disease. they keep thinking gabapentin will solve my pain problems in my urethra.

I have no life. My husband's mental illness which causes him to become very aggressive toward me and terrify me had gotten much worse because he can't handle caring for me though he tries, but he terrorizes me. I have no family and all my friends bailed on me when I got ill. my husband is starting to make suicide attempts but minor ones, just a few pills. his psychiatrist is a cruel quack who won't even help him with something for SLEEP. he's not helping him at all and my husband doesn't open up anyway.

the only option "the system" has for me is go to a NURSING HOME PERMANENTLY. I was a very young 54 and still in what spirit I have left I would die very torturously in a nursing home. there would be no one to talk to, no internet to connect me w/ the world, no doctors who would give a blank about my condition, NO special diet, govt. run abusive nursing home. I used to volunteer in them, I know what they're like. I'm so scared. husband needs help. won't be pro=active for himself. I've become so weak from pain, now using only tylenol and ice and heat packs and trying to find an acupunct. I can afford as it was the only thing that helped, long story why can't see that one again. I need so much and can't take care of him much. just tell him please get a better psychiatrist. guy let him go for nearly 2 mos. w/ next to no sleep AS A FULL time CARER.

I'm going to try the tea tree. I've tried everything. You name it, cept interstim and botox. other main issue is debilitating pain from retention. everything causes me retention and it ups my pain very badly. the opiates did this to me when I was on a lot, but they never let me sit for more than 10 min. on pillows. they never gave much relief at all.

HELP!

I just found an article on the internet (http://www.wdxcyber.com/nurine09.htm) that suggests that urethra pain can be caused by the infection of tiny glands at the mouth of the urethra. Here's the relevant part:

"It is not fair to say that urethral syndrome is not due to infection because many physicians believe that it is due to a low grade infection of the Skene's glands on the sides and bottom of the urethra. At least symptoms often respond to antibiotics. The Skene's glands are embryologically related to the prostate gland in the male, thus urethral syndrome may almost be a type of chronic prostatitis in a woman. Treatment of acute urethral syndrome is antibiotics just the same as treatment for a UTI. For chronic urethral syndrome a long term, low dose antibiotic treatment is given on a continuous basis or after intercourse each time if that seems to be prominent in relationship to symptoms occurring."

Anybody been on antibiotics for a long time? I wonder if that's why tea tree oil works for some of us, since it has antibiotic and anti-fungal properties.

zoejane

11-07-2009, 08:20 AM

Bella Spirit, I find that my symptoms relate to your symptoms more than anyone elses that I've been reading. I am so glad you mentioned that you have to put pressure on your urethra after you go to the bathroom because I do the exact same thing after I go to the bathroom to relieve the pain. I wonder why this gives us relief? Also, the doctor seems to think my problem is frequency and urgency but my frequency and urgency only started because the constant burning feeling that I have makes me think I have to pee. I wish I could pinpoint the the cause of the burning. I'm not sure if acidity is my problem because even when my urine is so dilute that it's almost clear I still have the burning feeling. I know a lot of people use Prelief which is an acid reducer but unfortunately for me we can't get it in Canada. I'm going to my urologist in a couple of weeks and I'll let you know what he says and if (hopefully!!) he prescribes me medication.

I have exactly the same issue! Sometimes, when I'm finishing up with urinating - I can't get the tissue in time to wipe and the pain is so intense. Putting pressure on the urethra with the tissue helps to decrease the pain - but only enough so that I'm not crying out in agony.:cussing: My urine is also dilute and clear. When I test for acid in my urine - it always is acidic.

As far as Prelief, I use it when I get it (I too live in Canada) and it does help. I get it on Ebay - look up herbsproonline. They sell it for around $20 for 300 tabs - and I believe that is about half the retail value. The shipping is $20 so I buy about 3 bottles of Prelief and pay $20 for shipping. Hope this helps. Prelief is certainly worth a go. It says to take 2 with meals - but depending on what you are eating - you will need more. I think the 'Prelief' website has a graph of how many tablets deacidify certain foods.

I just had another dilation to stretch my urethra - hasn't worked - although, I only had it done a week ago. Urologist says I don't have IC, but I wonder if one can have IC in the urethra and not the bladder.

Take care, Zoe

DawnR

11-21-2009, 09:25 AM

I am so glad I came across this discussion. I too have burning after I pee and the only thing that helps is pressure. I have been going for Heparin instills and didn't think they were really working because being catheterized is excruciating. I suffered from many many utis when I was young and had my urethra stretched when I was 18. I wonder if that can cause scarring on the urethra. I do have bladder flares and i follow th ic diet, but my main pain is the burning and spasms in the urethra. I am going to the dr. in hopes of getting something for the pain. Has anyone tried Desert harvest aloe? I just ordered it, desperate I will try anything. It is so good to know I am not alone!!! :)

dmking1964

12-14-2009, 12:06 PM

Hi my name is Michele, I share so much of what you wrote, If you will look under the vulva and infection you will find how I've found some relief,I really hope that helps,will e praying for you.Sincerely, Michele

dmking1964

12-14-2009, 12:30 PM

another thing about , I have found that BLADDER BALANCE works,take 2 each morning and nt.until you start going less,It's on Amazon.com for 35.00 a bottle, FREE shipping. Also my dr. tried me on something new Gelnique its not covered by my ins its around 200.00 but she has lots of samples. Seriously,I've cut my trips in half Does anybody have trouble sleeping? I have been on Lunesta for about 2 yrsI hope I have helped somebody. I don't want to seem like a know it all or anything I've been dealing with this over 8+yrs, I've had alot done.Many procedures so if you have any questions just ask. In a question s'one asked about liquid valium. There are valium suppostories but you can't get alot b:ecause you will start to depend on them. They helped some,but not always.:hi:

dmking1964

12-15-2009, 09:14 AM

one more thing, if u use Aquaphor on your lips and the opening after u pee it acts as a barier to the next time u have to pee, it minimizes the stinging. TRY IT!,what do u have to loose? I carry mine in a lttle pill keychain,more discreet that way, yes it's a pain in the ass ,{pardon the punn** to have to do it, ut it's worth it to me.

Shaelyn

01-05-2010, 08:25 AM

Interesting thread...
I had severe burning in my urethra for months with no positive test results for a urinary tract infection. It was also sort of a sudden onset, with no sexual contact and no bladder infection for months before. I went to a new urologist who said I had "urethritis." She put me on 30 days of Augmentin 875mg 2 x per day. This cleared it up. Not saying this is what your problem, but it might be worth looking into. Also, before I found out what was causing this severe pain, I would put diaper rash medicine(something like desitin) on my clitoris and around the opening of my urethra. This helped immensely with the pain and burning and it's safe enough to use on a baby. ;o)

To those of you who take sleeping pills...have you tried Trazadone 50-100mg at bedtime? This was orignially used as an antidepressant, however, it put people to sleep so they don't use it for that anymore. I take 50mg at night and it knocks be out far better than any sleeping pill out there. It's also non addictive and a non narcotic. It requires a prescription; even so, I highly suggest you look into it.

Shaelyn

brosey123

01-08-2010, 04:25 AM

Wow! I feel like I have stumbled in a international sisterhood! I'm new to this site and I too have specific pain in the urethra. Because it's really not something that you normally discuss in a crowd - I have suffered silently for around 10 years. I have had many UTI's in my 20's and 30's and was always given a course of antibotics. The meds would work for a while and then I would have pain again. After many years and urologists not giving me the answers or relief that I needed, I turned to some holistic approaches. I'm not sure that this will work for everyone, but it is giving me some relief. I read on one of the blogs that some tried Almond Milk. I bought some and I do feel that the "tugging" "twisting" "chewing" feeling subsides a bit. I have also been taking Olive leaf capsules. Olive leaf is a natural antibiotic so if there is any infection in the urethral area that should take care of it. I also take Quercertin with Bromilin. Quercertin is an anti-inflamatory and provides relief for me. I also, because of the early menopause, use Estrace cream a few times a week. The urethral and vaginal atrophy adds to the problem of IC. I drink 32+ ounces of water a day and hold it until I really have to go. I guess that this is something that we all have to learn to live with. I'm just really glad that I found this support group!

Tracy 2920

01-26-2010, 01:28 PM

Have either of you tried urethral suppositories I have been doing them now for over 4 years they are compounded they are inserted urethrally 3 times a week for 4 weeks and they are compounded with a steriod and antiobiotic. they do help
Hi Mary Ann, I was wondering about this post of yours. I just started urethral suppositories last week for inflammation of the urethra and I see you said that you have been doing for 4 years and it helps. I am finding it extremely painful. Is is painful for you and how long does it take to start working? How long do you go symptom free before you have to start the suppositories again? I mean do you get several months of no pain? I can't imagine doing these for 4 years. Unless it gets better over time. Please advise thanks I also want to thank you all for posting. I hate the thought of anyone going through this like I am but it is nice to have support.

brosey123

01-27-2010, 04:03 PM

Hey there! Thanks for the info. To be honest, I can't imagine putting anything inside of my urethra! The thought of that really doesn't sound good to me. I'll stick with my Olive Leaf and Estrace Cream and watch my acid. I drink alot of water with lemon. the lemon juice alkalizes the urine for some reason and it brings relief fairly quickly. The key is not to go the bathroom for a while and hold it until you have to. I hope to hear from others too - thanks for responding - it's nice to know that I'm not alone!:pray:

duana

01-28-2010, 06:15 AM

brosey123,i can't eat anything with lemon in it.it causes an increase in frequency and other symptoms.do you use fresh lemons?how much do you put in water?

duana

brosey123

01-28-2010, 02:28 PM

Hey there! I know it sounds strange! I use fresh lemons when I can, but I mostly use lemon juice from a bottle. I just squirt a little in my water - about 1/8 tsp per 8 oz of water. The lemon actually neutralizes the bladder. I read about this tip a few years ago in a magazine. I'm always interested in anything regarding IC since I really don't like alkaselzer, baking soda or apple cidar vinegar. It works great for me - of course everyone is different - what works for me doesn't necessarily work for everyone. I like sharing information with others - you never know what might provide the relief that you need. : )

cindydi

01-28-2010, 07:17 PM

Hello everyone:
I also feel all of my pain in the urethra it is like a stabbing, burning feeling and it is worse after peeing. I am now in a major flare and am looking for ideas to help ease the pain. Does anyone do installations for the urethral pain? My doctor wants to start them (DMSO), but I am afraid because everytime a catheter is put in I flare for weeks of unbearable pain. Has anyone had the same problem?

Tracy 2920

01-29-2010, 03:43 AM

Well, I did my 6th urethral suppository last night and this one wasn't as nearly painful as the previous 5. I mean I would burn for two hours pretty badly then it would be kind of a stinging feeling through the night and most of the day the next day. My doctor said to try a couple more and if I still can bear it he would start antibiotic/steroid injections on both sides of the urethra, once a week for 3 weeks but last night it didn't hurt nearly as much and so far "knock on wood" today I am feeling pretty good. I will keep you all posted as to whether or not this works. As far as pain relief goes I am on some narcotic pain relievers, and I also use lidocaine and I have cut anything like coffee, caffeine, citrus, spicy out of my diet. The other day I drank 4 cups of coffee and boy did I pay for it. Hoping this works and hope you all find relief from this devastating disease. :smile tee

Tracy 2920

01-29-2010, 03:48 AM

oh, I wanted to say that I also burn not while urinating but after I go. I find that kinda significant that alot of women with this same problem experience this as well. I mean I will be feeling pretty good and then I will make the mistake of going to the bathroom and then the burning starts right after I go. I wonder why that is? Anyway, haved a super day!!:smile tee

cindydi

01-29-2010, 04:13 AM

Tracy
Please keep us posted on your treatments and how they work. I am starting on pyridium today and Motrin. I was off IC meds because I hadn't had a flare for 2 years. Now I am back to square one. My urine culture was negative so it is my old friend IC. The pain is all in the urethra.

ICNDonna

01-29-2010, 06:06 AM

cindydi, Motrin is a trigger for many ICers, including me. I know some can take it, but just wanted to alert you to the possibility.

Sending healing thoughts,
Donna

cindydi

01-29-2010, 06:11 AM

Thank you for the heads up!
What is a good pain medication? Should I go for Tylenol?

brosey123

01-31-2010, 02:10 PM

Yeah, I don't know why it hurts after peeing and not during. that's why I hold off as long as I can and drink lots of water throughout the day - so that my bladder will be full. It seems to be happier when it's full. I know that my bladder does not empty out all of the way - so the doctor think that I probably keep an infection which could explain why I sometimes feel like it's an infection instead of just an IC flair. The Olive leaf really helps with that. I take that now after sex instead of macrobid.

mew

02-03-2010, 04:10 PM

Has anyone gone on Social Security Disability because of there problems??? The pain has gotten so bad for me how could I go back to work? Does SSD recognize IC as a disability?

Tracy 2920

02-03-2010, 04:20 PM

That is a seriously good question. I actually lost my job because of the economy and am looking for one right now but with my severance pay I am able to take some time off and focus on treatment but it won't last forever. I have to tell you that I am not looking forward to going back until this is over. I don't want to sit all day because it is painful but then again standing and walking for long periods of time bother me as well. I would love to hear from somebody on this as well. Stay strong ladies. I did my urethral suppository again today and I think it might actually be helping. I seem to be getting along better and the treatments themselves are getting a little easier. Although they are still pretty painful. :puppy:

nyeema

02-11-2010, 05:16 PM

Wish there was a section (sextion!) just about sex cuz i have to know if other women with IC have the same probs i have. I have a very sensitive and painful urethra (and bladder). my urethra makes sex torture so we don't do any vag penetration any more. and during oral sex, i feel like i am peeing too much before i orgasm. i know that women ejaculate, but i have smelled and got a good look at the fluid coming out and it is mostly urine.

This is so embarassing that it is hard for me to get any satisfaction unless i just do the job myself (with good use of a towel underneath me).

does anyone else go thru anything like this. if you prefer you can send me a personal email. but i think it's good for us to share our experiences cuz i feel like i am going crazy with all the life adjustments i've had to make due to IC.

Sorry if i have shared too much (TMI!). But any experiences, info or suggestions anyone has is much appreciated.
In the spirit of Love and Healing
Nyeema

nyeema

02-11-2010, 05:19 PM

i just got my first state disability check. my doc is hard to deal with. he has little compassion or understanding of my symptoms. but i know what i can do and what i can't. so just stand your ground and get the time off you need. anxiety makes my symptoms so much worse. i can't imagine going back to work with all the pain, frequency and retention that i have right now.
good luck
nyeema

KaraLynne

02-13-2010, 05:43 AM

I get urethral pain as well. I'm so glad for this thread!

I usually have some sort of urethral pain every day...although recently I went four days without having pain (it was amazing) and yet all that time I felt like it could come back at any moment. Generally, I don't have a lot of pain in the morning and then it gets progressively worse during the day. Peeing doesn't generally help, though it does sometimes. Generally the whole time I pee, it hurts a ton...I'll put off peeing because of it, which I know isn't good, but what can you do?

I do get really bad flares around the time I ovulate. It makes me think I have a UTI. Unfortunately, no one was ever culturing my urine for the past couple years, so I just got diagnosed with UTIs every time that happened and no one had answers about why I had less severe irritation the rest of the month.

In the last several months I started going to a good uro-gynecologist. I had a cystoscopy and they didn't find anything besides a little irritation. Since then, I've had one really bad flare (felt like I was peeing razors, it never stopped for days, and there was a little blood) and it got cultured as a UTI, but my uro-gynecologist said that since the urine wasn't taken with a catheter, it wasn't necessarily a UTI (unfortunately, my uro-gynecologist is 1.5 hours away, so when I feel like that, I'm not highly motivated to get there to get catherized, but I really need to do that next time). I have a feeling I have IC though, but she's not willing to diagnose me until she finds out whether I'm getting frequent UTIs or not, which is understandable.

In the meantime, I'm trying the IC diet, which is difficult because we eat at other people's houses a lot. I'm not sure that's helping, but I'm not sure I've done it for a long enough period of time. I am also taking: aloe, cod liver oil, probiotics, liquid calcium/magnesium. I think it may be helping, but I still hurt almost every day, just not as severe. Also, I find I feel better if I eat my homemade yogurt every day--if I forget, I think I'm in more pain. I do take Azo if it's really painful, or if I'm traveling.

The other thing I'd like to add is that sex hurts a lot. Most of the time, my urethra is just too irritated to even think about having it. But the other thing is, is that my vagina itself often hurts during/after sex. I'm not sure if I've just been in so much pain down there, that I'm clenching up and making it worse, or I actually have a related issue with my vagina. But, there's that too.

Anyway, thank you all for all you advice! I've really appreciated these boards.

KaraLynne

02-13-2010, 05:45 AM

Also, I added this on another thread, but I thought it was relevant and hope it helps you all.

I'd like to add something that helps me. Along with a peri bottle, I use cloth wipes instead of toilet paper. Basically, I cut up some flannel fabric (I just got some cheap stuff to start off with since I was experimenting, but I plan on buying some organic, dye free cotton flannel) into 7x7 squares. I keep them folded in the cabinet beside the toilet. Then, instead of using toilet paper when I pee, after using the peri bottle, I use the cloth wipes (I'd use them for number 2 as well, but I just don't do laundry often enough...maybe someday when I have kids!). Then, I stick the used wipe in a plastic basket in the cabinet and every couple days dump that into my laundry basket and do them in the laundry and reuse them. There is absolutely no smell or anything.

I originally came up with this idea after reading some eco-friendly blogs--there are other people that do this. Apparently, this is similar to what they do in Asian countries like India and people there have lower rates of UTIs, which I thought was an extra bonus. But, the best part for me is that it is a ton less irritating than toilet paper (it occurred to me that my eye doctor said not to wash my glasses with tissue because the wood fibers can scratch...and yet I'm supposed to use that on my vagina?!). It's also really inexpensive. It feels really soft and I feel much cleaner. I'm really surprised that more people with IC don't do this--I think it's a great idea.

I just explained my system for doing it. If you google 'family wipes' you can find out how other people work it out and might find a way that works better for you--or at least find out more info on it.

Tracy 2920

04-24-2010, 05:36 AM

I am currently seeing a very good doctor in Chicago Illinois. I live 5 hours away from there near Hannibal Mo. Does anyone have the name of a urogyn or urologist that they think is really good in this area that they could suggest for me to get a second opinion? I would be willing to travel somewhat for a really good doctor. I have made strides with my current doc and I know he is good but I really feel like it might be time to see what fresh eye's might think. I am currently doing urethral suppositories on my 4th month now and I stopped for 1 week and one day and had a super week but then it all started back up again. I am kinda getting the feeling I will have to do these suppositories for the rest of my life and I just cannot believe with all the people who are having the same problems that there is no cure or more docs with knowledge in this area. I have alot of burning in the urethra, ureathral polyps which my doc right now doesn't think means anything, burning after I urinate not while. I have anemia because all urine tests show blood in my urine but no infection. No sex as it is to painful to even attempt. this is contolling my life and I am sick of it. Has anyone ever been cured? I mean cured? I am sure if they had they wouldn't feel the need to come back to this board but are there any doctors out there who are reading these posts who can offer up some help. Please please please help!! Thanks so much in advance.:puppy:

KaraLynne

04-29-2010, 11:16 AM

I may actually be finding answers about my urethral pain.

I read the book Heal Pelvic Pain by Amy Stein and it is a must-read book. You can read portions of it on google books, if you want to try before you buy.

Secondly, I saw a physical therapist who diagnosed me with pelvic floor disorder and she said that is causing all my urethral pain and also all my painful sex as well. Apparently my pelvic floor muscles are very tight, have shortened and are also very weak. We are doing exercises to stretch those muscles and then to strengthen them later. So far, after about a month of doing exercises, I think my pain is getting weaker and also it doesn't last as long. I still have pain every day, but I think it's getting better. My physical therapist says that it will get 100% better--here's hoping!

Someone else on this board recommended the Amy Stein book and I'm so glad they did, so I would definitely recommend it to everyone.

Dakota

04-29-2010, 11:42 AM

KaraLynne thanks for telling us about your success with this and I wish you continued luck and hope you get to that 100%. I'm planning on ordering this book soon. I think a lot of us have pelvic floor dysfunction and don't realize it. It came as a shock to me when I was diagnosed.

KaraLynne

04-29-2010, 12:32 PM

Thanks Dakota! I wasn't completely surprised to be diagnosed, as I had read the book (which is what prompted me to get the physical therapist appointment to begin with), but I will say that I can't even begin to tell you how it felt for someone to tell me "this is your problem and this is the solution"--its like I could finally exhale for the first time in almost three years!

I kind of get the feeling that urologists are just starting to get educated in IC and that pelvic floor dysfunction and its connection to all this isn't really part of the mainstream training (which isn't to say that everyone is clueless or anything), as its a physical therapy issue and not a bladder issue. Hopefully more and more urologists and gynecologists will become informed in this (along with all other IC-related stuff too!). At least, this has been my experience--every doctor told me I didn't have a problem, so I kept having to be an advocate for my health as I knew that this kind of pain was not typical!

Also, for everyone: to find someone that specializes in pelvic floor dysfunction such as a physical therapist, check out this website: http://www.pelvicpain.org/providers/find_provider.aspx .

shawnster

05-03-2010, 04:00 AM

KaraLynne,

How did they diagnose you with PFD? Are there certain tests for it? I'm just wondering if that could possibly be my problem, but wondering how I ask the urologist to go about testing for that.

shawnster

KaraLynne

05-05-2010, 03:27 AM

Shawnster,

First of all, it's my experience that urologists aren't always quick to suspect PFD, which is due more to lack of knowledge about it among non-physical therapists than anything else. So, if they aren't, don't be afraid to fight for it.

Secondly, I was diagnosed by a physical therapist specializing in pelvic floor issues. You can find such a person on this wesbite: http://www.pelvicpain.org/providers/find_provider.aspx . Basically my PT did an external skeletal exam checking for any skeletal issues that could be causing PFD (such as uneven legs) and then an internal vaginal exam. In the external exam she found that I have uneven flexibility in my hip muscles and in the internal exam, I was so tight that she couldn't finish the exam. Based on this, and in listening to my symptoms and medical history, she diagnosed me with PFD, along with IC and vaginismus. From what I've read, some PTs also use biofeedback and electronic machines in order to see how tight your muscles are in order to diagnose, but mine didn't do that.

Hope that helps and good luck!

dmking1964

05-12-2010, 08:43 AM

Dear Tracy, You need to find a pelvic floor therapist. The reason we burn a and sting is b'cause when we pee, our muscles relax then afterward they 'the muscles' kink up and start spasming! I used to get trigger shot inj. in the muscles every week, but my ins. has put a stop to it only 3 times a yr.After I see the pelvic therapist I see a guess she's lie a phicitrist however she talks to me about how to deal with pain. u can't e in so much pain for 15 yrs and not have it do harm emotionally to. Hope this helps! another thing i do is after i pee i put Aquaphor inside and on the lips. I order it in ig jars its cheaper that way- then carry it small pill or some other plastic container carry it in your pocket

Mytita

05-28-2010, 04:11 PM

can you tell me more about these suppositories? thnaks!

dmking1964

05-29-2010, 01:22 PM

Hi the one's that r subribed for me r valium suppositories. I take one at nt. before I see the therapist, then after. The truth e known I save the one's for the day until nts. where it hurts so much. they don't give u except 16 of them, b'cse they don't want u to get addicted to them. they work for awhile until u have to pee again. my neighbor's sister has cancer of the vagina I just found out today, anyway for her urning and stinging they washed her with 'regular SHAVING CREAM' I said what/ Anyway what have I got to loose to try it? will report later. hope this has helped.

Tracie

06-01-2010, 08:09 AM

Hi everyone! Just thought I would chime in on what works for me-

I too have been a long time sufferer of burning AFTER urination. Years ago I always thought it was some sort of infection and never tested positive for one. 3 years ago I had a hydro/cysto and trigger point injections. After that the uro dx'ed me PFD. The injections were awful and did not work. So I felt helpless. Over time I have found some solutions-

-Pyridium as needed
-cold packs after intercourse
-not wearing underwear
-epsom salt baths
-vaginal dialators (have not use recently)
-noticing what food/drinks increase the problem (sauces and dressings do not agree at all. ex: bbq sauce, kethup, vinegarettes)
-hydro-cortizone cream for instant relief (rec. by my gyn. He thinks I have VV)
-lots of water

I know that everyone is different, these few things have been helpful to me.
I have tried the elavil,stopped because of side effects. Did the percocet and valium thing but I have an addiction issue so I stopped taking those. What I also found interesting is the food problem. If my husband eats lets say Hot Wings and we have intercousre, they next day is awful for me.

It has taken me over 3 years just to figure this out. I guess all this is part of my life journey! Who knows. I am so thankful for this site and all of you!

tandem

06-04-2010, 12:10 PM

Has anyone gone on Social Security Disability because of there problems??? The pain has gotten so bad for me how could I go back to work? Does SSD recognize IC as a disability?

Hi mew, I have been raising the same question - I have ended up with 7 surgeries in the last few years - total misdiagnosis - from removing epididymus, testicles/both to TURP to Prostate removal which all have made things so so so much worse to the point I can not work. I had one feedback from woman that knew of a person in San Diego that it took years and with a lawyer but not until the local congressman got involved did it get approved.

At the same time a drug or an alcohol addict claims to be now depressed and have mental issues and gets on disability no problem - go figure.

I spoke to a Urologist that said that he knew of quite a few cases where men with chronic prostatitis and individuals with IC had committed suicide and to say that IC does not affect once state of mind.

I hope we can open a support forum on this subject or a section on the website to support those with IC that are unable to work and need to be on disability - I personally would trade less pain with being able to go back to work -

I am glad most of the IC sufferers can still maintain a degree of life and be able to work but there are others that just can not.

So please post anything you find out in this regard - also for those who might loose their job and insurance - will they be able to find insurance on the open market that will accept them or will they say IC is a pre-existing condition and therefore not cover them.

Ironic - on one hand the government is very eager to say you are OK and you do not qualify for disability but on the other hand they do not seem to care if the open market says you have a pre-existing condition and therefore we will not insure you so you end up loosing everything you own and end up on the street.

Only if you are under 18 will you be able to get coverage with pre-existing condition.

I would be nice to know more of the progress in this regard as I know this issue has been on the table for some time - but now there is some discussion in changing the IC/PBSname so by doing so we could be at square one. Please push this issue.

Tracy 2920

06-09-2010, 12:24 PM

Dear Mytita,
My urethral suppositories are a combo of antibiotic and steroid. They are made by a compound pharmacy. I first have to use lidocaine in the urethra to numb it (doesn't really help) then insert the suppository into the urethra and hold it there until it melts. About 10 to 15 minutes. I take pain medicine 30 minutes before I do this then typically have to use more later that night. It is quite painful but I have noticed over time that my pain is better controlled and usually now mostly associated with doing the suppositories themselves. The problem is that when I stopped doing them the pain was back. Start doing them again and I am not pain free but better. It just doesn't seem worth it too me anymore. But my doctor said this works for 70% of his patients. I have urethral polyps and blood in my urine everytime they test. I also have PFD but I feel I can tell the difference between the pfd pain and the urethral pain. I went to a new urologist and he is going to do a cystoscopy under anesthesia next week. He is going to look for anything unusual, and the polyps then biopsy. I donated urine yesterday and they are doing a FISH test. I know that sounds bad but it actually stands for Fluorescence in situ Hybridization, it tests for cancer. He said they would somehow compare the DNA in my urine to DNA of known cancer results and compare them or something. Anyway, I don't think that is an issue (hopefully not) but better safe than sorry and my other doctor never did that. The new guy said I have irritative issues and so he thought this would be a test that would be prudent. I will post and let you all know what happens. I am confident (today I am) that we will figure this out and someday we will all be cured. Please, please, please. Sorry took me so long to get back on the suppositories. Thanks :grouphug: