Hi I'm new

[icnow]

Hi everyone

I just want to start off by expressing my deep sorrow and compassion for what you are going through. From what I've read about IC and the stories I've read so far, I couldn't imagine the physical pain associated with what most suffering with IC go through. For the past two months, I have had frequent urination as soon as my montly period starts. Last month it lasted for 12 days, and this month, as of today, I am on my 19th day and I don't know what is going on. Three doctors don't know what is going on because there is no bactrial growth present. I don't have any physical pain, or burning. A nurse who did an ultrasound thingy mentioned interstitial cystitis and suggested I be referred to a urologist and get a urodynamic test done. I won't get in to see the urologist for another 2 or 3 months so in the meanwhile I have changed my diet to an alkaline diet and have been taking herbs that help with inflammation. Nothing is working so far. I barely leave the house because I have to go ''pee" (pardon my language) every two minutes; I must go to the bathroom over 100 times/day. To offset the amount of times I am up and down going to the bathroom, I have resorted to pull-ups for kids! I go through about 5 of them a day. I try not to drink anything after 3pm otherwise I'll be up half the night going to the bathroom. I don't want to stop drinking because I know that is not good for me; however, I am confused as to the appropriate amount of water to drink in a day. I was hoping only two 8 oz glasses/day would be sufficient, that way, I could possibly have somewhat of a normal life and go out once in a while. I usually have 3-4 eight oz glasses/day of water.

I have a lot of urgency when I go, even though small amounts come out. I don't seem to leak (so-to-speak), I kind of have to push and wait for the flow to start but once it starts it is fine. This has just all come as a surprise, I didn't know anything was wrong; the symptoms just seemed to come out of left field. I'm 44 years old and I'm wondering if any of this has anything to do with early menopause or something, although I haven't had any menopausal symptoms that I know of. When I was younger, I wet the bed until I was 14 years old because my bladder was so small so I had to go to the hospital to get it stretched all the time.

Wow, I'm writing a book! I feel good to have found someplace I can feel safe to talk about this. It's kind of embarrassing.

Thank you for listening:)
Lisa

[vm]

:welcome: Glad you found us!

Your symptoms do sound similar to IC. I also wondered about overactive bladder as I read your post, though the small bladder comment made me think of IC.

Has your doctor had you try any of the overactive bladder medications? I have IC and the OAB med I used to use was a big help - but for many ICers it can cause retention. It's worth asking about, though, if you might have OAB.

It is so normal to want to drink less. I so remember doing that b/c I thought if there was less in my bladder I'd have to go to the bathroom less often! What actually happens is that our urine gets way too concentrated when we limit our intake and that can cause a lot of irritation to our bladders. That irritation can cause us to feel like we have to "go" a lot more often - even if there is only a tiny amount of urine in our bladders. So, for many of us, drinking less can actually backfire. :(

I hope you've been able to read through the ICN's online Patient Handbook:

http://www.ic-network.com/handbook

It has so much good information about IC, its treatment, symptoms, and lots of self-help tips.

I hope you can find more answers soon so you can be on the road to feeling better! Most of us DO get there. :)

[leelee88]

Hello Lisa And :welcome: To the ICN...

You should check out the Patient Handbook. If you look here on my Signature you can just click the link and it will take you to it..

But you can check Drs by there are some specialist in there that might could help you out..
You know if you were having your bladder stretched when you were younger then a cysto/hydro might help with your symptoms, this also would diagnose IF you have IC.. So this is something you might want to discuss with your Dr.
I do hope you get some answers..If you have any question please do not hesitate to ask..

[icnow]

:angel:Thanks for your responses!!! I am going to take a look at the IC Handbook!

vm, I was curious what part made you think of over-active bladder initially because I did some research on that and although I forget the other symptoms of oab, I questioned whether or not that was it (I think because I at least have a little bit of control; whereas in oab, it sounds like you may not even have an idea you have to 'go' and then it just comes out). My doctor did put me on Detrol LA (I forgot to mention that) and it didn't work so he stopped. He did however give me a prescription for pull-ups for a year! Do you know on average the amount of water someone with IC should be drinking because even at 4 glasses of water/day, I'm virtually housebound? It's so tempting to have less:bonk: because sometimes it is even less than a minute before the next time I need to 'go'. (I'm just curious, before I read your story, are you able to go to work or did you have to go on a disability?)

hi leelee88, thanks again for your response and letting me know about the Handbook. I also want to read your story and see how it has been for you. When I go to the urologist and I mention a "cysto/hydro", what exactly is that? How come that would let me know if it is IC? And one more question if you don't mind... you mentioned that having my bladder stretched when I was younger made you think of IC, I was just curious as to why? Is there a link?

Thank you sooooo much for your help and support. I really appreciate this.
Sincerely
Lisa:)

[icnow]

leelee88:angel:

I got mixed up on my last post:rolleyes:, I meant to ask not only what a cysto/hydro is, but 'how' a cysto/hydro might help with my symptoms (since I used to have my bladder stretched?), and how it would also help diagnose IF I do have IC...

:pray:Also:bunny:, do you have any idea if IC is caused by not drinking very much water in the first place because, since I have such a small bladder to begin with, I have had a tendency not to drink much so as to avoid the constant bathroom trips?

Thanks again:bow:
Lisa

[elamar]

OAB meds don't always work well for those with IC. We don't have "sudden" urges, we have urge all the time! In the meantime, maybe your family doctor can give you a prescription for some sort of anti-spasmodic. Ditropan xl worked for me - there is a generic available. Two other meds to ask about are prosed and urelle. There is no generic for prosed so it can be expensive, there is a generic for urelle called utira-c. There is no reason a family doctor can't give you any of these prescriptions to try until you are able to meet with a urologist. They should help with the constant urge you are struggling with. When my IC first started, I used to pee every ten minutes around the clock for days at a time. Again, my urine cultures came back clean and my gyn just thought I was nuts and it was all psychological. That doctor was a ***! Anyhow, I had to take both the ditropan xl and the urelle to get the symptoms to calm down enough to function again. I would say it took a good two weeks to get results so don't give up to early. I hope this helps. Good luck to you.

[vm]

The OAB meds usually are the antispasmodics - like Ditropan and Detrol LA. Again, they cause retention for some ICers, but not all. Detrol LA helped me quite a bit.

[icnow]

I checked out the Handbook and realized I've read some of it before. It's really informative. I am trying some herbs like turmeric, gotu kola, and horsetail so far hoping they might help till I see the urologist in a couple of months. After trying the Detrol LA and it not working, I thought I'd try a natural solution to see what happens. I think herbs take a lot longer to work than prescriptions do but at least the gotu kola apparently works to help the lining get better on it's own. I've actually changed my diet to strictly organic and alkaline for the past 20 days that I've had this again this month hoping that would help too. I've also got natural organic products for my hair and skin, etc., as well so I can clean my system of toxins if that is causing any of this. I don't know, I'm just getting tired of this. I just feel so bad for the others who have pain with all of this, I just couldn't even imagine what it would be like. I'm so sorry:pray:

[icnow]

hi vm, I appreciate reading your story from the link you have. I has given me hope and I am going to create a record to take to my urologist too, that is a great idea!:)

[Briza]

The cysto/hydro involves two parts:
The cystoscopy, which means basically a cath type instrument with a camera attached to the end is inserted usually along with water or some type of liquid to expand the bladder a bit, so that the uro can inspect the walls of the bladder for growths and inflammation and such.
The hydodistention involves filling the bladder with water past the point that would normally be tolerable while the patient is awake ( that is why the patient is put under general anesthesia or sometimes done with spinal anasthesia, b/c overdistending the bladder without one or the other is just over the top way too painful). The hydro is supposed to allow the uro to see things like ulcers, hemmorhages, inflammation that are usually not seen with just a cystoscopy. Usually biopsies are taken during the hydro to most importantly rule out cancer, but also the biopsies can show inflammation indicative of IC and also if mast cells (which can cause inflammation) are present.
Occasionally biopsies are taken just with a routine in-office cystoscopy, but seems most often it is done under anesthesia during the cysto/hydro.
Bladder stretching around here usually means hydrodistention, and yes it does seem to help SOME patients with their symptoms. Seems to be about 50/50 whether it helps for symptoms but usually the cysto/hydro is done for diagnostic purposes and to check out what is going on in the bladder, tho it is not 100% accurate for dxing IC. Nothing is. IF you happen to get symptom relief, that is an added bonus. Note: most often there is a temporary increase in symptoms AND pain, sometimes bad pain, following a cysto/hydro...or even just an in office cystoscopy. Recovery may take just a few days for some, a week or two for others, and sometimes a month for others. Obviously just an in office cysto is much less invasive and therefore the recovery from that may be just a day to a few days, from what I have seen reported here on ICN. The hydro is SURGERY, so more recovery time is to be expected. I have not had an in office cysto...only the cysto/hydro under general anesthesia...I was stretched a LOT...1275 ml and had a very rough and long recovery, longer than is normal for most patients because I had some complications related to to the surgery along the way.
"They" say that sometimes the hydro helps with symptoms b/c it kinda breaks the bladder lining when it is stretched beyond normal awake capacity and then as the bladder heals and recovers from the surgery new cells and bladder lining is formed and that sometimes helps people. Also from what I have read around here that patients with low bladder capacity seem to get more help with symptoms such as frequency and urgency than patients with larger or normal capacity. Makes sense to me, that part, that lower capacity patients would benefit from having their bladders stretched that it would help with those symptoms. Usually if relief is found, it is temporary. Temporary may mean 1 month for 1 patient, or 6 months to a year for another d. Some report even longer results. I personally did not experience relief from my symptoms.
No one to my knowledge knows the one true cause for IC. Probably there are many causes and it is very individual to each patient. Not drinking enough water may not CAUSE IC, but it could very well trigger IC symptoms.
I know for me, even tho I have normal bladder capacity, drinking plenty of water is imperative to keeping my urgency under control....as was mentioned before concentrated urine can be very irritating to the bladder, that is the case for me, so drinking lots of water helps me with both urgency and frequency. That might sound like an oxymoron, but it is true for many of us with IC. You might try drinking more water to see if that helps your urgency....so that when you go you REALLY have to go, not just a few dribbles. That's the way it works for me.
Yes, with IC we often have to avoid acidic foods. But normal healthy urine IS slightly acidic, so you might want to be careful about going completely alkaline with your diet. IF your urine is too alkaline that is not normal, and you are more prone to UTI.
Would be interesting if you could get a hold of your childhood med records to do some research as to how much your bladder capacity was back then, how much you were being stretched, etc, since you have a history of this. If they were stretching your bladder I would think that what you were having was hydrodistentions, and would be good to find out if they took biopsies or looked around in there, took photos, etc. and what your post op and pathology results were, if you could get access to them.
Best wishes,Bri:)

[ICNDonna]

:welcome: to the IC Network. I hope you'll find some answers here. You can read about cystoscopy and hydrodistention in the Patient Handbook --- there's a much better description there than I can give. And if you scroll to the top of this page and click on "Diet" you'll find some helpful information there.

Most ICers need to drink six to eight cups of water daily to keep the urine diluted. And it's never good to strain to urinate. It will only make it more difficult to urinate.

One important thing to remember is that most people with IC do find treatment options that work well for them --- and most of us feel good most of the time. For every individual posting here that they are in pain, there are literally hundreds out there who have IC, but are not posting because they feel good and are busy getting on with their lives.

Sending warm welcoming hugs,
Donna

[icnow]

Hi elamar, yes, I know what you mean about the urges... it's a constant. I'm sorry your doctor was not able to be sensitive and compassionate when you were first figuring out what was going on with your symptoms. Not something that is helpful during a stressful time!

Briza, thank you so much for your thoughtful post in trying to help me understand what a cysto/hydro is. It's certainly obvious you've been down that road. I did check out the Handbook like ICNDonna suggested and found it helpful as well. I realize how important drinking lots of water is now w.r.t. the concentrated urine in the bladder. I'm going to make sure I drink a lot of water, at least 6-8 cups like ICNDonna mentioned. I might have a hard time trying to find my medical records from when I was a child, and I wondered how you thought they may be of help. I wonder if the doctor would have told my mom that there was more to my small bladder than meets the eye or if he would have not said anything because they may not have known what it was?

Hi ICNDonna... Thanks for your words of inspiration! I appreciate knowing there is hope at the end of this tunnel I'm finding myself in. Today I started to drink 8 glasses of water but I drank them all between 1:30pm-4pm and I wondered if this is safe or advisable. The reason I did it is because I had an hour long meeting at noon and I didn't want to drink anything in the morning otherwise I would have to 'go' every two minutes in the meeting, and, the reason I stopped at 4pm is because if I stop at 4pm, then I can at least go to bed at midnight every night and get some sleep and be on a schedule. ICNDonna, I was wondering too about when you said if a person strains to urinate it will only make it more difficult to urinate. I don't know what to do in that case because my urine won't come out if I don't give it an initial nudge. And also, once it starts flowing, if I don't gently strain, it doesn't come out, or if it does, the stream is so slow and stops before I feel like I got it all out and then the next urge comes even quicker (within seconds) versus at least a minute or two. I would constantly be dribbling, while at the same time having to have that initial push, so-to-speak.... or even if I didn't initially gently push at all, it doesn't seem to want to come out. I'm confused as to what to do.

[icnow]

:woohoo::woohoo::woohoo:

I just want to share some great news. I haven't had the urge to 'go' for over 3 hours now!!! I am in shock and so ecstatic! I can't believe it!! The only thing I did different was go to a holistic practitioner who gave me some herbs that she made a tea out of. I had 2 cups when I got home. We talked about some fears that I've had because apparently the bladder and kidneys form a system, and if either the bladder or the kidneys are imbalanced in any way, it is related to fear.

The herbs she put in the tea are:

uva ursi
pipsessina
yarrow
cornsilk
st johnswort
angelica seed
lavender flower
alfalfa herb

I also took 2 pills each of gotu kola, and turmeric with some horsetail tea not long afterwards. I researched on line for these last three herbs and was usually only taking 1 pill at a time (I got the powdered form and some capsules from a health food store and made some pills).

The only other thing I did different that may have helped was I tracked a holodyn (I've been taking an online course.
I hope this is permanent, although I am definately going to continue to take the tea especially.

[leelee88]

I am glad you are feeling better! BUT let me CAUTION you! PLEASE be careful with ANY herbs! They are not regulated and can cause harm.
Also many can have a bad reaction if taken with other meds or your body could have a reaction to them if you take to much!

Not saying this is not working for you, Just advising you to be cautious!!! And other members!!!

[yarnia]

The utira-c has dramatically helped me with frequency, tho my frequency is nothing like yours.

My IC is finally at a point where it's sort of in the background - enough so that I can tell when I have a dietary trigger. That would include vinegar, soda, citrus - particularly juice, coffee and or chocolate/large amounts of any sugar.

I have almost completely given up coffee in any form which has made a big difference - and avoid tea, etc...

For me, estrogen replacement (patch and vagifem suppositories) has made a big difference. I take a couple of utira-c every morning whether I feel a twinge or not - and plan to keep doing so for some time.

I probably don't drink enough water - I believe in drinking a comfortable amount, not shooting for some set number. I do think it's very important to have a full glass of water with any med or supplement.

[icnow]

Hi leelee88, Claredale, and yarnia

Thanks for the advice on the herbs. I did start to notice a bump on the side of my upper lip yesturday but it's gone today after not taking any herbs since I noticed it. I will start back again, but really slowly.

I was so excited when my symtoms were gone but it only lasted for 1 1/2 days and then they came back again when my husband and I went on a small trip yesturday. I sure didn't expect it to come back so soon! Once again, it started when my period began. I was so sad, I actually started to cry and realized I needed to grieve because I wondered if this would really be something I may have to deal with this for the rest of my life. I am so careful with my diet and don't drink any coffee, sugar, well actually anything acidic. I think it was stress. I was having a hard time dealing with my husband's sudden outbursts and not being heard! But later that night before going to bed, I tracked my holodyne (what was bothering me) and the next morning, today, I don't have any frequent urination. I am just so thrilled. I wondered if it was a fluke though. When I began to have frequent urination three months ago, the first time it lasted for 12 days and it was then that the doctors knew it wasn't a uti because there was no bacteria, but they still didn't know what it was, and even now my doctor doesn't know. But anyway, once I realized that the doctors didn't know, I realized that it was up to me to figure out a way to solve it so I did an energy healing on myself when I was in the bathtub. I had never ever done it before but I was desperate and figured it was up to me to solve it. So I became very present and trusted and I put my hands on my stomach where my bladder is and I just accepted it in it's brokeness and invited the wholeness of it in. I know it sounds kind of funny, but I was desperate and then forgot all about it because I never dreamed in my wildest imagination that anything would happen. Then went about my night. Then I suddenly realized that I wasn't going to the bathroom anymore! And that was the only thing I did different at that time. When it came back the second time, I was very scared because I knew the doctors didn't know and when I went back my doctor still didn't know. I tried to do the same energy healing thing on myself at different times during the 23 days it was here, but I was always in fear and I couldn't be present when I did it. I tried a hot bath, thinking it may have been the heat, then I tried a heating pad, but nothing worked. Then, like I said before, I tracked my holodyne and it went away again. I couldn't believe that would help and thought it must have been the herbal tea I got since I also had a new herbal remedy that I got that day and had two cups. Since it went away that time, I tried it the 3rd time I had the symptoms (yesturday) and it worked again! So, I'm not going to question it at this point but if it comes back again and it doesn't work, I suppose I will need to try another allopathic remedy. Detrol didn't work, maybe something else will, if I can't do it myself. I just don't want to have to go the allopathic route with medications if I can help it because of all the side effects.

I just have a question about pain medications. I think I read that motrin is not good for the lining of the bladder. Does anyone know what would be good for a headache? I don't want to take something that will irritate my bladder. I am going to track for my headache as well tonight to see what happens for now I have motrin but I don't know if I should take it.

[ICNDonna]

I take tylenol when I get a headache. I can't take ibuprofen.

Donna

[ICNDonna]

If you are having to strain to urinate, please talk with your doctor. There are several different medications that will help to relax those muscles so you can urinate easier. It's also possible you could have pelvic floor dysfunction, which can be helped by physical therapy.

And I totally agree that your physician needs to know about all of the herbal remedies you are taking --- "natural" doesn't always mean "safe"

Donna

[leelee88]

I also take tylenol when I have a headache.

[icnow]

:angel: Wow! Thank you for all (everyone's) your help:). I feel like a burden has been lifted just to be able to talk about this with people who understand. My blessing to all of you and thank you thank you thank you. I'm just sorry it is under these conditions that we are meeting. I'm still feeling okay today. I'm drinking lots of water, and trying real hard to eat well. Stress does seem to be a factor though, I've noticed, because each time I've had a flare (albeit although it has occurred each time my menstrual cycle begins), something has been stressful for me and it's almost like stress could be a factor. I don't know if anyone else has noticed that or not?

[icnow]

yarnia, I forgot to ask you about your estrogen replacement because I did read somewhere that IC sometimes gets worse around that time of the month because of the estrogen levels changing at that time. Is that why you take it? My symptoms seem to start each time right when my period begins. I wonder if hormone replacement would help me too.

ICNDonna, yes, I do think I must have pelvic floor dysfunction. I didn't realize that there was any medication that was available for that.

[icnow]

I want to start becoming more active to help prevent my symptoms from coming back and I read in the IC Handbook that some exercises may not be that good. I was looking into something I could do at home in the house and found a product that looked good because it prevents the body from bouncing even though you jump up and down on it like a mini trampoline. I don't what to say where I saw it if we are not suppose to mention any other websites, but what it is called is a, " Rebounder ". Would anyone recommend this??

[leelee88]

Never heard of this one.. But I do know that Pilates are pretty safe for ICers..

[icnow]

I have an appointment with the urologist on Jan 22nd and my doctor told me that I will be having a cystoscopy. I feel nervous about that because I read that sometimes the test itself could create the development of "glomerulations" which of course would just make IC worse:loco:this doesn't make sense to me. Plus, the anesthetic, I found out, is a contributing cause of cancer. Not only that 1/3000 people die from anesthetic. I feel there must be a better way to diagnose IC than potentially create more problems:rolleyes: I'm starting to wonder too, that, if I don't have the pain that most ICers have, and that I only just have very, very, very, very frequent-urgency symptoms, that possibly it may not even be IC in the first place:pray::pray::pray:

[ICNDonna]

If your appointment with your uro on Jan 22 is in the office, they will very probably not be giving you an anesthetic for a cystoscopy.

I have never heard of anesthesia being a cause of cancer --- and while it is remotely possible to have complications from anesthesia, it is extremely rare for someone to die from an anesthetic. I worked in a Nursing Administration of a large hospital for 25 years and would have seen reports of any problems.

During an office cysto, the bladder is not stretched --- they do instill sterile water in order to view the bladder lining because when the bladder is empty it collapses, much like a balloon when the air is expelled.

If you're scheduled for a cystoscopy with hydrodistention, then an anesthetic would be given, but those are done in a hospital or surgery center.

Donna

[leelee88]

Another route you could go is to have the less invasive test which is the Potassium Sensitive Test (PST) This is where they instill a solution into your bladder and see if you have a reaction to it..So here is another option..

[icnow]

Well thanks leelee88, the PST test sounds a little less evasive and good enough to figure out if it is IC. I noticed in your signature lines that you had a ruptured bladder when you had had your cysto/hydro. I'm really sorry that you had to go through that. Are you okay now?

ICNDonna, would an office cysto help to diagnose IC? I don't know exactly what the plan is. My regular doctor just said I would be getting a cystoscopy but when I got the appointment from the urologist's secretary, she did not say anything about it. So I think the first visit will be to take a history and possibly talk about options such as the cystoscopy. I want it to be a joint decision, not something they just do to me and I'm just along for the ride.

I'm starting to wonder about 'hormones' since I am 44 and since the only times my symptoms come is when I have had my period for the past 3 months. Each time the symptoms last a different length of time but it does start when my period starts. I was thinking about taking a non-estrogen herb. I think it is called, Macafem, since estrogen is lowest at the start of the menstrual cycle and my estrogen levels are probably depleting because of my age. Does anyone know anything about this?

Right now I am so happy I don't have any symptoms and I continue to proceed with my IC diet to make sure I don't trigger a flare.

I don't know what else this could be if it's not IC. What else would cause flares and remissions, all of a sudden at this time of my life, right when my estrogen levels are low at that time of the month? I have no pain, only frequent-urgent urination when I do 'flare'.

p.s. I just realized that I have started this thread under the wrong category because I have not actually been diagnosed yet with IC; I was just told, it could be, by a nurse who did my ultrasound, plus, I had already thought it could be after I did some online searching when I realized the doctors didn't know what it was when they couldn't find any bacteria.

[ICNDonna]

The office cystoscopy does not usually diagnose IC, but it can be an important part of the "ruling out" other possibilities, which can be a part of making a diagnosis. The office cysto takes only a few minutes and if you can manage to relax, it isn't bad. I have learned that if I concentrate on breathing slowly and evenly and consciously relaxing it really helps.

Donna

[c2miracle]

Just wanted to say WELCOME. This is a wonderful support group. Hang in there and think positive!:smile tee

[NancyB]

Dear Icnow -

I sent you a PM about using Estrogen as an IC Treatment.

If anyone wants to know more about this, access my thread, "Estrogen as an IC Treatment" that I posted back in December 2007 and updated today.

NancyB:)

[Goldfinch]

Howdy icnow, a rebounder looks like a mini-trampoline but it is not as bouncy as one. I had one. It is designed as a relatively low impact way to exercise--relatively being the operative word. It is very good if you have knee issues. I'm not sure it would be low-impact enough, however, for a tender bladder. It involves a certain amount of your feet leaving the surface; in other words: jumping. Not really high, but jumping, nevertheless.

You were asking about the in-office cysto. Mine was not painful, just uncomfortable and it doesn't last long. They will give you a numbing agent and wait about 15 minutes before the catheter goes in. The big thing it rules out is bladder cancer. It also gives the uro a chance to see into your bladder and get the lay of the land, so to speak. Some measure of irritation might show up, but also nothing might show up. Mine looked like a healthy bladder.

I got a UTI afterwards, and it was suggested by someone on these boards that this is always a possibility after any invasive test. You might ask your doc if he will give you levaquin or other short-course prophylactic anti-biotic to take afterwards.

Since IC is mainly diagnosed by a combination of symptoms and by exclusion, some doctors don't believe a PTS is worth doing, nor do they believe a cysto with hydrodistention is necessary for them to diagnose IC. I was diagnosed without either of those tests.

[icnow]

Thanks ICNDonna for your encouragement and the tip about relaxing with the office cysto:)

Thanks for the welcome c2miracle:angel:, I like your pics; you seem like a fun person!

Hi NancyB, it is funny to me that you are responding to my post about hormones because I actually saw your post somewhere else on this forum (when I did an online search about hormones and IC) where you mentioned your other post, "Estrogen as an IC Treatment", but I couldn't find it yesterday. I still can't find it. I must be blind. On the other thread you mentioned it was under the 'success' thread and I still couldn't find it:confused: It does seem like maybe my symptoms are to do with IC when they only occur when my estrogen is lowest:rolleyes: I don't know what other dis-ease could be causing my symptoms at that particular time?

Hi Goldfinch, thanks for the info about the rebounder. I did wonder if the impact could be too much for a sensative bladder although it did seem like a good option. I'm assuming you did not have yours when you had IC because I imagine even the little bit of jumping would trigger a flare. I wonder if just walking on it during a flare would be helpful or maybe not even worth it. Thanks for sharing your in office cysto story. I feel a little more comfortable with that and the reason for it and the precaution about a potential UTI. And I am actually very grateful you were able to be diagnosed without any other invasive tests. It is a relief:bow: knowing that. Do you mind me asking how the doctors were able to diagnose you while it appears others need to go through these other tests that you mention?:cat:

Thank you everyone so much for all your support:angel: I am deeply gratedul:pray:

[Goldfinch]

icnow,

I can only give you my own story. As you have heard a zillion times now, each of has our own personal IC; no one has the exact same symptoms and no one seems to have the exact same treatment. Doctors are different too--good ones and bad.

I am 61 and have never had bladder issues or pelvic pain until a year ago thanksgiving. I had all the symptoms of a classic UTI--stinging, burning pain, frequency. Over the course of the last year my pcp ruled out OAB (detrol for two months didn't help much.) I kept testing negative for infections. I started doing research and found this network and I went on a really strict diet. It worked. All the symptoms went away. I started eating everything and figured I was out of the woods. But then it came back. I saw two uros before I settled on the one I have now. The second one did a cysto, which showed nothing but a healthy-looking bladder, and gave me a tentative IC diagnosis. The third one listened very carefully to my story and agreed.

This uro is not an expert on IC, but he is kind, thoughtful and smart, and he likes to talk. He knows all the major IC heavy-hitters and has opinions about their approaches. He has schedule me for a CT scan to rule out stones outside the bladder or other structural stuff, although he doesn't think it will show much of anything. He believes the PST is going out of favor and doesn't think it is useful enough. He does not feel that the hydrodistention will help me, at least not at this point; he finds it therapeutic for some patients, but since I do not have a lot of pain now he thinks it would be too invasive and not necessary. I take Urelle as needed, and that, along with a strict diet, really help keep my symptoms under control. I still have some bad days, but no serious pain or burning, only discomfort and frequency and often not bad at all. He believes that I should try Elmiron, so that's what I am doing now.
He also suggested possibly going on Atarax as well, but respected my decision to wait on that. I don't like anti-histamines and I don't usually have trouble sleeping, even if I have to get up a couple of times to pee.

So that's it. It is pretty much agreed that IC is a diagnosis by exclusion. If my cysto had shown a lot of irritation or possible ulcers things might have gone differently. The fact I respond well to the IC diet is also indicative. This doctor is a good fit for me at this time, and that counts for a lot, I think. I hope this helps a little!

[NancyB]

Dear Icnow -

You can find the thread, "Estrogen as an IC Treatment" by clicking on my name, then clicking on "View Public Profile," then clicking on "Statistics." You will find a link there to click on which says, "...threads Started by NancyB". You click on that and you will see, "Estrogen as an IC Treatment" OR you can go to the thread, "Success Stories" and go back to December 2007 and you will find it there.

Hope this helps.

NancyB

[icnow]

NancyB, that sure helps knowing about the estrogen and how it helped you. If I do have IC, it sure looks as though it's hormonally related like your's seems to be. I'm still watching my diet, as I imagine you do (I actually just cheated tonight and had a clementine, an orange type fruit that my husband bought and I just wanted to taste it and it was so good I ate the whole thing, gulp, hope I'll be okay!--my first cheat!). Anyway, I am thinking along the lines of taking herbs instead of allopathic drugs. I researched herbs and found Macafem. It's a non-estrogen herb in that it helps the body manufacture it's own estrogen. I would imagine I would need to go to a gynecologist for that, versus, a urologist though. I have a question about the estrogen. I'm wondering if a person would only have to take it when they need it like in my case just prior to menstruation.

Goldfinch, I hope I can get a diagnosis with just an office cysto like you did. I am glad you found a uro that you can talk to. That is really important I think. Thank you so much for sharing.

I am actually curious about gluten because I was looking up "clementines and IC" and I happened upon a celiac disease forum, on a thread where many of the people who have celiac disease were realizing that they also have IC. Since they are both an autoimmune dis-eases, I'm wondering too if there is a link. Many of their IC symptoms were going away using the gluten free diet. Interesting!

[NancyB]

Dear Icnow -

I have no IC symptoms and can eat whatever I want.

If you have urogenital atrophy that is causing your symptoms, you cannot just use the estrogen before your period. You have to take daily oral medication and/or 2-3 times per week vaginal estrogen.

Hope this is helpful.

NancyB:)

[icnow]

Hi NancyB:hi: I meant to send you a pm, but I think I posted on your profile page, oops

[NancyB]

Dear Icnow -

No problem. I got it.

NancyB:)

[icnow]

Hi Everyone, I'm feeling a bit bummed because my symptoms came back yet again with this month's period. I think mine is definately hormonally related since it only comes at this time of the month. But it does stay longer than the duration of my period. I go to the urologist on the 22nd. I started to keep a log as of today just to show him how much I go to the bathroom. Just in one 3-hour stretch, I counted 139 times! I stopped writting it down because it just seemed ridiculous. It's already bad enough that I have to go that much that counting each time is so time consuming. That's all I did for three hours straight. I just don't think that many times is even normal for IC. I've read that people can go up to 6o times a day but, mine is actually, it works out to 46.3times/hour. I don't know what other disease or problem could cause me to go that many times per day. I'm just getting so fed up.

[SharonA]

That does sound rather odd. Are you just dribbling or do you actually have a stream when you go each time? I am glad you are keeping the journal. Make sure you put down what you are eating and drinking. The doctor needs to know that, also, along with amounts of liquids. I hope you are able to find out what is causing this excessive amount of bathroom trips.

[icnow]

Hi SharonA, I wrote down everything I ate and drank yesturday. I started writing a log today but it consumes my whole time because I have to go so often therefore I just gave up. I actually do not do trips to the bathroom anymore, I wear pull ups for kids. If I wasn't humble before, I sure am now:smile tee Most times, I only go a little dribble, other times it's a little more, and other times even more, but rarely over say 1/4 cup. Once I let my bladder completely empty before bed after no drinking for at least 6 hours, I usually don't have to wake up during the night, and in the morning I just have a regular void (my bladder is not big to begin with, ever since I used to get my bladder stretched many times as a kid, so at the best of times I don't have a large capacity. I can go less often, but it's hard to ignore and resist the urge when the brain is signalling, "I need to go- Now". My body must be saying, get this urine out and out fast for whatever reason. Is the lining of my bladder irritated? I don't know? It would appear that way.

I don't understand, I've been on the IC diet since mid November. I couldn't be more on it than I am and I only eat all organic foods, use all organic products; I drink 8 glasses of water a day. I guess it needs time to work. My diet wasn't even that bad before I changed. I've uped my maca root herb to 4 pills a day now hoping that will help too.

[yarnia]

honestly I think if i had a very small bladder and your frequency issues I would not drink 8 glasses of water a day. I don't know who came up with that "one size fits all" recommendation but it's just not doable for me.

I have trouble taking any vitamins or supplements.

Estrogen has worked wonders for me. I have vivelle dot and also use vagifem tablets every day.
I still get pretty bad vestibulitis when I take the progesterone tho.

[icnow]

Hi Yarnia, it sounds like you must get a lot of burning with the vestibulitis. I had never heard of that before. I want to try the natural herb maca root for now for mine hoping that will help build up my hormones that I need. I guess it has something to do with the lining of the bladder in that the estrogen help protect it, I'm not sure but people seem to supplement with estrogen.

As far as the water goes, I tried having less water, but it was recommended on the forum that I stick with 6-8 glasses so that's what I've been doing. Life would be so much easier if I could just have a couple of glasses a day, then at least I could go out, if I planned my outings several hours after my last glass. As it was, yesturday, my husband needed me to sign the papers on our vehicle insurance so we could sell our truck; therefore, I pretty well had to go into town. All we did was get there, fill out the papers which didn't even take that long and get home and I had to change my pull up. And even then, I was panicking that whole time I was in the insurance place because I was going to the bathroom every minute and didn't know if I would make it home.

I don't really know what the best thing is to do.

[icnow]

I'm feeling so depressed right now. I don't mean to be a downer especially when I know so many of you are going through a worse time than me because I don't have the pain that you all have and I just couldn't imagine how hard and devastating that must be. I'm so sorry you have to go through that. I just don't feel an end in sight at this point and I guess I'm just feeling at my wits end and I can't take it anymore. I keep having to miss everything I want to do. I start to wonder why I'm even here. What is the purpose of me being on earth when I can't even go anywhere or do anythihg Maybe I'm just going through a stage where everyone does at the beginning when they don't know what is wrong and they're trying to do everything in their power to help themselves. I just feel like I'm at my witz end. I appreciate being able to write here and I would understand if this is too depressing of a message and the moderators take it off. I'm just really scared. It doesn't seem like people understand how devestating this is. I don't really tell them how hard this is for me to deal with so maybe they don't realize how hard it is. I try to be positive but I think it is really getting to me when I keep missing all the things I want to do and all I can see ahead is more of the same. I am so tempted to stop drinking anything and that would solve everything. Please know that I am not usually this depressed.

[SharonA]

With everything you are experiencing, I am sure you are feeling down. Please don't give up on yourself. Keep asking doctors questions and trying to get some answers as to why you are having these problems. Meanwhile...

I have been thinking about how you said that you are trying to drink 6 to 8 cups of water a day. Maybe you should back off to 5 to 6 cups of water a day? Not everyone needs that much water. Especially if you are not being very active. Remember that there is a lot of liquid in vegetables, potatoes, soups, stews, even meats. That liquid also counts when you are tallying how much liquid you are taking in. Try drinking 4 to 5 cups of water slowly throughout the day...a little at a time along with the other sources of liquid for a couple of days to see if doing that makes the frequency less. I really don't know if that will help, but if it were me, I would try it. If it doesn't help and you begin to feel like you need more liquids, then go back to the recommended 6 to 8 cups.

Sending you (((hugs))) and hope. There is always hope. :):):)

[leelee88]

I know you are trying the alternative route, but it might be time to talk to your dr about another method of treatment.. There are so many other things that could possibly help your quality of life.

I truly feel for you..I hope you find something that works..

[icnow]

Thank you so much SharonA and leelee88 for your compassion. I'm feeling a lot better. I think I just needed to talk about it and then I had a good cry to let it out and I'm feeling better now. I never thought about the amount of liquids in foods, I thought when they said 6-8 glasses of water, that is what they meant. I'm going to go down to 4-5 glasses to see if that helps. At least it won't be an all day event. I'll try it slower too since I won't be drinking as much. I've been drinking fairly fast so that I can finish it all by mid afternoon so I can go to bed by midnight and not have to have any urges. I had soup for dinner and then I had a really, really hot bath and then I didn't have to go to the bathroom all the time anymore. Just a regular void about 2 1/2 hours later! I'm starting to wonder if heat is what helped me when my symptoms went away before. The first time they went away, I had a hot bath. I don't quite remember the 2nd time, but definately the third time, I was on a short trip with my hubby and my period started and I got cramps so I bought some 'hothands 2' hand warmers and put 4 of them on my stomach for my menstrual cramps because I didn't want to use ibuprophen. My frequent/urgent symptoms came back again like usual with my period that day, but that night I fell asleep with my warmers still on my stomach against my skin (inside the pull-up) and the next day, I didn't have symptoms anymore. That was the first time my symptoms only lasted (1) day. The thought never occurred to me that it may have been the direct, continuous heat applied directly to my stomach that may have helped decrease the inflammation if this is in fact a inflammatory disease. I'm feeling hopeful anyway and I am going to see how I feel tomorrow and if my symptoms come back, I'm going to go to the store and get some to see if it works. The hothands2 that I used are only suppose to last 10hours or something but mine lasted almost 24 hours that day. Thank you again for your much need support:angel:. I want to avoid the allopathic route as long as possible because I don't want to put any toxins in my already compromised system (if I can help it anyway:pray:) Hugs...

[SharonA]

I thought when they said 6-8 glasses of water, that is what they meant.

It is what they mean and water is very important to keep your body functioning at its best level. We all need to drink enough water during the day to accomplish this. It just might be that some people need more than that amount because they are very active...like runners. Those of us, like me for instance, do not require as much because we are less active. I also want to remind you that the water amount is not a glass full. It is 6-8 cups...8 ounces per cup. I have drinking glasses that hold only 4 oz and those that are more like 10-12 or 16 oz. I factor that in my total amount, also.

I don't think I did a very good job last night in explaining what I meant about solid food being a source of fluid. I mentioned the liquids in foods because they should be considered extra liquid on top of the optional amount of water for you that you drink per day...not replacing it. If you are a patient in a hospital and the doctors order an Intake/Output Log, all measurable liquids will be measured, including that in soups. Even ice is considered because, when it melts, it turns back to water.

Remember...If you cut your water intake back, listen to your body. If it seems that you feel more thirsty or if you notice that your urine seems to get stronger and less diluted, drink more. If you are more active one day, drink more.

[icnow]

Hi SharonA, thank you for the clarification. I understood what you meant before and I do understand about the 8oz glass vs 4 or 10etc. I've measured my cups and drink accordingly. What's funny with me, is I don't really even get thirsty in the first place, I am only drinking all this water because I feel it's important for this problem I have.

Before these symptoms came along, I didn't truly understand the importance of actually drinking a fair amount of water; therefore, I rarely ever drank anything. I think the reason being, is, because I have such a small bladder in the first place and I naturally would have to go to the bathroom many, many times per day and I think, unconciously, I began drinking less and less without even realizing it, just to shorten the time I spent going back and forth to the washroom. Another "no, no" I did to prevent the amount of times I had to go to the bathroom was to 'hold my urine in as long as possible'.

I bet 'both' of these factors probably exascerbated the problem I am having now because I now understand that is it not good to have concentrated urine in the bladder in the first place, let alone for extended periods of time. Unknowingly, I bet I contributed to my own dilemma.

In fact, I'm just now realizing, I bet I had a mild form of IC for a long time, because I've always had a small bladder capacity, even as a kid. I had to go to the hospital to get my bladder stretched countless times because I wet the bed until I was 14. During the day, I always had to go 'pp' alot (even as I got older). When I've looked back on my childhood, I always thought it was just nerves because I was so afraid of my mom, that, sometimes it took all I had, doing the 'pp' dance, sitting on the heel of my foot, etc., just to stop the 'flow' to prevent an accident on the way home from school, just before I turned the corner to get to my house where I pictured my angry mom, and countless other times when she would yell.

I'm just remembering now what I've read recently about, how, when a person is stressed (or traumatized) in some way, that the pH of their body/system becomes acidic and can cause things like cancer, etc. I'm wondering, if, the possible reason people who have IC have small bladder capacity (not necessarily an actual small bladder--unless of course, over time, they never fill their bladder up because of their symptoms, and hence, the bladder naturally shrinks and becomes more ridgid), is because, or caused by, an acid environment in the first place brought on by a stressful (to that person) event or circumstance, and progresses due to the lack of a supportive environment, be it nutritionally and/or psychologically/spiritually?