Pain Relief

[Bella Spirit]

I am so happy that we have our own 'hang out' now :lmao:

I thought I'd start my topic again in here (I don't think the other thread is going to be moved).

What pain do you experience and what do you do/use for pain relief?

Any advice on the subject would be great :grouphug:

[Dakota]

Yeah Bella! :woohoo: I'm hoping others who have these symptoms will start coming here, and we can get lots of feed back. Thanks to Jill for responding to us, and :welcome: to those who join us.

[Bella Spirit]

I'm very optimistic that this entire subject will get heaps of replies just like the 'urethral pain' thread (that thread had over 80 posts now, WOW).
There are so many of us.

I feel a huge sense of relief just knowing that I have support and a place to come to for reassurance :)

I'm very happy :woohoo:

[Dakota]

It's possible they may move that thread over here. I think I've seen where they have done something like that in the past. Doesn't matter though because I have a feeling this one is going to get popular. :smile tee

[Bella Spirit]

What is everyone's pain like?
Mine is simply BURNING! After urinating I will experience extreme burning for about 30-45 minutes then the pain subsides for a little bit before increasing and starting the cycle all over again! This vicious cycle never seems to end and I am now on my 7 month of daily pain :(

Diet change and direct pressure on the area I have felt to be the most effective relief so far!
Bi carb soda works for me too and I am about to start on Endep (Elavil). Other than that I haven't really found anything else that helps. Exercise and pfd therapies don't seem to work for me.
I am going to see the doc next week and I will see if I can try out some of the meds that have been described here (urethral thread)

[Briza]

hi girls,
I don't suffer from urethral issues myself, but just want to say hi and that I am glad that those of you who DO suffer now have a place to chat about your experiences and such. Never know...I might be posting about the same at some point in the future even if I am not dealing with this issue right now. :flower: Take care!

[Bella Spirit]

Thanks Briza :flower: that's a lovely thing to say :) I'm happy about this place too :)


Gee, I have been posting so much this morning. I really should get on with some chores! Fun, fun, fun :bonk:

[VickiB]

Hey, this is new? Or have I just been oblivious?

I'm with you on the vicious cycle of burning Bella. Of all of the IC symptoms I experience I'd have to rate that as my worst one.

My pain relief measures include AZO or Uristat, baking soda in water, sitting in the bath, and rinsing the urethra with cool water. Other than that it's a grit my teeth and bear it 'til it passes sort of thing.

Vicki

[jul2873]

Good topic. I have managed to keep flare-ups almost completely at bay by using an estrogen cream once every night, washing my vagina with a weak solution of tea tree oil and water every morning, and drinking lots of water, esp. when I feel the first twinge of pain starting.

I'm seeing my uro-gyn in two weeks, and will check to see if I can start cutting back on the estrogen cream, which makes me very nervous.

I think it's really interesting that, for almost all of us, the defining symptom is burning pain after urination. It's very comforting to know that I am not alone in this odd sympton. It does make me think that there is something distinctly medical going on (rather than psychological). I am also allergic to a ton of things, and have asthma and skin that will get a rash very easily (haven't used a commercial deodorant in years, have to keep an antibiotic and/or anti-fungal cream in my outer ears or they get infected, etc.) I wonder if it is all related--if my urethra gets inflamed like my lungs, skin, ears do?

Anyway, best to everyone dealing with this baffling, horrible condition.

[Bella Spirit]

Hi Jul
I have allergies too - eczema, mild asthma, hayfever, penicillan allergy, mould allergy, rubber allergy, cat allergy...and that's what I know about! I am going in for a skin prick test next month. How strange would it be if they could link our IC to allergies :confused:

Does anyone experience bad nocturia with their condition? I do. I can get up anywhere between 3 - 8 times everynight and this has been my life for years. I don't really feel the pain at night but it must be something of an irriatated bladder as I have the sensation of being full all night long.

[sgoodrow]

Hi everyone, I'm glad they added this thread for those who have this particular problem. I just wanted to add something as well. My main symptom is burning, down low, and always after urinating but will come and go during the day too. How do you know that it is inside your urethra that is burning and irritated? I had a cystoscopy a couple of months ago and the doctor said it looked red in the trigone area, area right above urethra. Though the burning feels like it is down low, like in the urethra.

This problem started last year, spring of 08 and has consumed my life. I just finished 3 long years of nursing school and now as I'm trying to search for a job I'm also trying to find ways or medications to stop this burning so I can actually work without any pain. Well good luck to everyone, I look forward to coming to this thread often and reading the posts.

current meds: elmiron 100mgs 3xday, trying prosed for a month -kind of helping I guess,
diet restrictions, my gyn doc gave me progesterone birth control to try,
but not sure about it yet, want to try cystoprotec.

take care, Stephanie

[Dakota]

I have to say the only thing that has even touched the urethral burning for me has been Elavil. I've tried Elmiron (only for three months), Atarax and was taking Prosed DS four times a day for months. They did nothing for me. Elavil has helped, but does have it's side effects. I have Sjogrens Syndrome and it is very drying for me, and I've also started to gain weight. But I keep taking it because if I don't I'm dealing with non-stop burning which has been going on for three years now. I've also tried Dessert Harvest Aloe, Cysta-Q and Cystoprotek and Glucosamine, but they did not help.

Bella Spirit: I think I mentioned to you before that I would be up all night running to the bathroom if it wasn't for my sleeping pill. Strange, but I don't have so much frequency during the day.

[Bella Spirit]

Hi sgoodrow - I know how hard and frustrating it is to try and find work with the ongoing pain. I hope you find a suitable job soon :)
Has the doc said that you have Trigonitis?

Dakota - I am usually worse at night too. Well, it's more irritating anyway. So you think Elavil is the way to go? I have heard a lot of positivity about that drug from a few urethral pain sufferers.

[Dakota]

Bella Spirit - If I were you, I would certainly give it a try. As I said it's the only thing that has even touched the burning. The thing about Elavil is that it's also sometimes used for sleep problems so it might help you at night. It's also one of the old antidepressants. You just have to be carefull about the weight gain thing. It makes me hungry about two hours after I take it. I have absolutely no appetite during the day and eat next to nothing, but I'm taking the Elavil about 7:00 in the evening and when I should be going to bed, I'm looking for something sweet to eat, so just be aware of that if you decide to try it. It's also a very cheap med if you get the generic form.

[Bella Spirit]

Bella Spirit - If I were you, I would certainly give it a try. As I said it's the only thing that has even touched the burning. The thing about Elavil is that it's also sometimes used for sleep problems so it might help you at night. It's also one of the old antidepressants. You just have to be carefull about the weight gain thing. It makes me hungry about two hours after I take it. I have absolutely no appetite during the day and eat next to nothing, but I'm taking the Elavil about 7:00 in the evening and when I should be going to bed, I'm looking for something sweet to eat, so just be aware of that if you decide to try it. It's also a very cheap med if you get the generic form.

Yeah that's what my doctor said too - kill 3 birds with one stone (depression, IC pain and sleep problems) with the Endep/Elavil. I will be starting on them as soon as I have had my allergy test at the specialist. I am a bit worried about the weight gain though. I suppose there is always a down side with these magical fixes!

On another note, I have found antihistamines to be really unhelpful. They make my pain worse :( anyone else find that?

[sgoodrow]

Bella spirit: Thank you for the kind words about job hunting. My urologist did not say I had trigonitis, only that it looked red in that area, so I looked it up on the internet and figured it might be that, and maybe something else (IC). She didn't verbally say I had IC, but the diagnoses in my chart is IC. Every time I go in for an appointment with my uro, I feel like I have to rush. I wish I could offer her $100 just so she would sit down and discuss this disease and tx in detail with me.

Dakota: I'm glad the elavil has been working for you. Do you find that the weight gain is from eating food alone, or could it be from the med itself? Also have you had any problems from high blood pressure, I heard that could be a side effect as well.

[Dakota]

sgoodrow - That's what I'm trying to figure out. I don't eat a thing all day (I know not good) but I just don't have an appetite. I am guilty of eating junk before I go to bed. So it may just be that I have to really make an effort to eat something during the day, and start walking more. I think it's possible that it just could be the Elavil itself that causes weight gain in some people. I was on Evista for about four months and gained a ton of weight from that alone. Needless to say I stopped taking it because I just couldn't handle the weight gain, so I think it's possible to gain just from certain meds alone without a change in eating habits. I just am so reluctant to stop the Elavil because it does help with the burning. I don't quite know what to do about it.

[sgoodrow]

Dakota: About the weight gain I was also giving some thought to the other side effect, that of high blood pressure. I know that during nursing I learned fluid retention can cause a rise in blood pressure because of the extra fluid and as a result there would be weight gain. So maybe elavil causes fluid retention, which attributes to the weight gain. But you did say that you had some drying related to Sjorns disease. I don't know, I'm just guessing.

I'm tempted to try elavil though. Have you ever thought of trying topamax? I think that is another antidepressant that works like elavil. I'm not sure about it's side effects.

[Dakota]

sgoodrow - I think you may be right about the fluid retention. I have not had a blood pressure problem from the Elavil, but I feel so bloated in my stomach area. And the Sjorgren's Syndrome makes my mouth so dry as it is, so taking the Elavil is really tough. Sometimes I cannot swallow because my mouth and throat are so dry. I think that's why I have no appetite during the day and I have to force myself to eat dinner.
I still think that even though I may have to stop taking it because of the dryness problem, for anyone else it's well worth giving it a trial.

I believe Topamax started out as an anti-seizure med, and they found that it was very helpfull for migraines. My daughter has been on it for about five years now for her headaches. I have not heard of it being prescribed for IC, but I will look into that. I do know that it can cause weight loss in some people.

[Bella Spirit]

Every time I go in for an appointment with my uro, I feel like I have to rush. I wish I could offer her $100 just so she would sit down and discuss this disease and tx in detail with me.

I absolutely understand what you are saying. I am so sick to death of having to make added appointments because doctors don't have the time. I am paying so much in the first place so I think I'm entitled to some sort of explanation on everything. It is so frustrating! I would be happy if they sat down with me once for a couple of hours and went over everything rather than me going back every few weeks for them to just brush over the surface of the topic once more.
Sorry, just having a vent :cussing:


On another note, I'm pretty sure antidepressants cause fluid retention and not just Elavail but most of them. I'm not sure how to tackle this or the weight gain in general. I suppose you guys could ask yourself what is more important - weight gain or pain relief. It's a tough decision :(

[DenySue]

Hi guys! Nice that we have a little "home" here!

When I have a flare I have some burning after I urinate, and my urethra feels as tho it is going into spasms...it's very painful and I feel as tho I have to go almost constantly....like a bladder infection...but all the sensation is in the urethra. Sitting is worse, even when I am not in a flare sitting can be uncomfortable if I sit too far forward. The good news is Elavil is helping me a lot. I have been taking 10 mg a night for 2 weeks and feel almost normal again. I also use estrace cream two or three times a week. I have Urelle if I need it, but thankfully haven't in a couple of months now. I am not too diet sensitive....I can eat and drink some of the no-no's if I take Prelief without any problem, and some things just don't bother me at all. My doctor has ordered PFD therapy. She thinks urethral syndrome can be aggravated by PFD, especially since I notice the urethral twitching and twisting feelings more when I sit. I will start that soon and let you all know how that goes.
But, I am really glad we have our own space now!! Some of us have been chatting for a while, but welcome to all of you that are joining us!:welcome:

[Bella Spirit]

Hi DenySue
I'm really happy you have found some permanent relief! :)

What mg of Elavil is everyone else on?
In Australia Elavil is known as Endep. I think Elavil and Endep are exactly the same but I am not sure :confused: I will be starting on 25mg which is quite a low dose. The normal dose is 50-75mg per day. A max of 150mg can be taken daily if necessary (usually for depression though)

[DenySue]

Bella Spirit,
In the US, Elavil is the brand name for Amitriptyline. 25mg is a standard starting dose, but I am pretty sensitive to meds, and on the small side, so my doctor thought 10 mg would be enough for me.

Dakota, I have takenTopamax for my migraines for about four years. Works great that, but can't tell that it helps the IC. I take 100 mg at night....it may affect my weight just a little, but not more than a few pounds.

OK...off to work! Have a great day:)

[ICNDonna]

I couldn't take Elavil, but my husband takes it for arthritis pain --- he takes only 10 mg and has for several years.

Donna

[icbop]

Yup, this is my issue too. I can be FINE in the morning, but after the first pee--watch out. Usually I can tell what kind of day it will be from that first one.

Somebody mentioned spasms. I have wondered that too. Urised, UTA, etc. are no help to me. Some exercises help a little, as do some positions I lay in while going to sleep. What the ---- is this?

[pixiechick]

Hi Everyone, I have just joined here :) I actually don't think I have IC - but who knows. My only symptoms is urethral burning/twinges after I urinate, worse in the morning when I first pee. It "twinges" for about 45 - hour after I pee. To me, this means inflammation, as it reacts worse to the acidic morning pee than throughout the day. Some days, I'll have pain in the morning and then none the rest of the day. I don't have any real urgency or frequency problems, and no other pelvic pain except for my urethra. I don't get up in the night to pee (or very rarely). My pain started after I had a UTI (definitely was a UTI) which i didn't get cured for a while because my mum decided anti-biotics were evil. (Don't even ask..) then after a while, it just went away. I had a couple of other UTIs that DIDNT result in months of random pain afterwards. Then, a few weeks back, it started up again.

I read in another post that chiropractic problems can affect it - if your spine or hips are out of alignment, they can press on nerves that hurt the urethra. I do have a history of spinal issues - but i'd never connected the two. I'm going to the chiropractor later in the week to see if she can help. :) Anyway, I'm really glad I found this network, even if I don't have IC, it's nice to talk to people with similar issues.

Sorry for a bit of a rant !

[pixiechick]

Posted this over in the old thread - my mistake.

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. Is this a spasm?

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 the 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.

[Bella Spirit]

Hi pixiechick

Firstly, have you approached your local Naturopath? In Perth we have a naturopath that can help with IC and/or urethral symptoms. He tailors a suitable treatment plan and uses specific herbs and supplements depending on your specific symptoms. I think I wrote a bit about it in the 'Beer Garden' under the Australian section. I am sure your state would have something similar.

Have you tried Ural? I find that to really help with my pain, especially first thing in the morning.

Glucosamine has been working for me too. Woolworths/Safeway sells glucosamine and msm really cheap :)

[Dakota]

Hi Bella
I am still taking the Elavil 25mg. Only differance is I cut them in half and take it in the morning and the other half at bedtime. I found this seems to be helping. Have you decided to give it a try yet?

[Bella Spirit]

I'm glad the Elavil is working for you Dakota.

I have tried Dothep which is very similar to Elavil. It seemed to work but unfortunately I've had to come off due to another health issue.

[IC/IBS Hopeful]

When I went in to have my bladder removed on Sept 29,2008 I expected to have my bladder and urethra removed. 2 minutes before he wheeled me in the OR he said okay you have 3 options. We do a bypass like we tried with the tubes hooked to the kidneys and by pass the bladder and leave your bladder in. I said no way. Then he said we remove 95% leaving your urethra and we will not have to reconstruct your vaginal area less recovery and if they ever come out with a new bladder we can hook it up. Then he said or we can do 100% he made this sound like a nightmare. I was alone scared and had no time to think about this so I choose the 95%. That was a bad mistake. I still have burning and spasms in my urethra area only. no pain where my bladder was. I finally talked him into removing it. it will be done Sept 1, 2009. wish me luck
Lynn

[Dakota]

Hi sgoodrow - I know how hard and frustrating it is to try and find work with the ongoing pain. I hope you find a suitable job soon :)
Has the doc said that you have Trigonitis?

Dakota - I am usually worse at night too. Well, it's more irritating anyway. So you think Elavil is the way to go? I have heard a lot of positivity about that drug from a few urethral pain sufferers.

Hi Bella
I have been rereading this thread, and just noticed that you had asked sgoodrow if her doctor had mentioned Trigonitis. A few weeks ago I called the Uro I have been seeing for about two years, and asked for copies of all my records and test results. He mentions Trigonitis in the results of my cystoscopy and dilation. I was angry because he never brought it up during my followup visit or any of my other appointments. :cussing: The info I've found on it is very vague, and I'm wondering why you asked her about it. Can you fill me in on anything I might be missing here? :confused:

Thanks,
Dakota

[Bella Spirit]

Hi Bella
I have been rereading this thread, and just noticed that you had asked sgoodrow if her doctor had mentioned Trigonitis. A few weeks ago I called the Uro I have been seeing for about two years, and asked for copies of all my records and test results. He mentions Trigonitis in the results of my cystoscopy and dilation. I was angry because he never brought it up during my followup visit or any of my other appointments. :cussing: The info I've found on it is very vague, and I'm wondering why you asked her about it. Can you fill me in on anything I might be missing here? :confused:

Thanks,
Dakota

Hi Dakota

The reason why I’m trying to find out more on Trigonitis is because my uro has finally concluded that my trigone area (the section where the urethra meets the bladder) is the problem. He says that my bladder seems to be ok even though it can only hold 400ml fully stretched, but my trigone area is very scarred and inflamed. It has only been in the last couple of months that he has come to this diagnosis (the diagnosis came after I started this thread). I have always had a suspicion that the trigone area might be the cause of my pain so that is why I’ve been interested in finding out more on it.
He wants me to get the area cauterised to make it less sensitive. Apparently this is a very outdated procedure and is not guaranteed. I’m unsure whether to go ahead with the procedure or not.

I can’t find much information on Trigonitis anywhere which is a shame. Like you, I find the information to be very vague. Maybe I'll start a thread?

Uros and doctors are so annoying aren't they. I understand your frustration. If I didn't poke and prod I wouldn't have got any answers either.
I'm still angry that they gave me a dilation when I was under without my consent. It did absolutely nothing for me.
Anyway, there is no use getting angry I suppose. It is what it is :)
* Lynn I wish you luck with your procedure next month. Please let me know how you go :grouphug:

[ICNDonna]

It's not unusual at all for an IC patient to have first been diagnosed with trigonitis.

Donna

[jodi.b]

Hi Dakota,
I was cauterized in that same area in June 07. It seems to have worked quite well until 14 th June this year, I have been sore since then. Had a 2 week space of no pain and then Monday this week it came on like a tornado.I am on holidays at the moment and I am so annoyed that I am like this.
I have Endep arriving Sunday night. I have not had his before My Dr just wants me to take 10 mg at night as I am very sensitive to medication
My pain is in the urethral area so god I hope this works.
Regards
Jodi b

[jodi.b]

I absolutely understand what you are saying. I am so sick to death of having to make added appointments because doctors don't have the time. I am paying so much in the first place so I think I'm entitled to some sort of explanation on everything. It is so frustrating! I would be happy if they sat down with me once for a couple of hours and went over everything rather than me going back every few weeks for them to just brush over the surface of the topic once more.
Sorry, just having a vent :cussing:


On another note, I'm pretty sure antidepressants cause fluid retention and not just Elavail but most of them. I'm not sure how to tackle this or the weight gain in general. I suppose you guys could ask yourself what is more important - weight gain or pain relief. It's a tough decision :(

Have people on as little as 10mg a day found that they put on weight too.
Do the drugs make you put on weight or is it because the drugs make you more hungry so you eat more.
Would appreciate you thoughts.
Regards Jodi.B

[sully02]

I can understand what all of you are saying with the burning. Right after I pee I rinse with cool water and then it starts burning. Elavil did help with that and my gyn had me on clobetosal steroid cream long term along with difflucun for yeast. I really did not have problems until about 2 weeks ago I went off all 3 because of the weight gain (20lbs) Yesterday I had a bad IC flare attack and I went to my uro-nurse who gave me an instill. She told me the VV was coming back. I have noticed some ithcing recently. Now I have to go back to my gyn. I did take one difflucun, 1 1/2 elavil and used the steroid cream and I feel a little bit better today.

Has anyone used topamax for pain?

sandy suly