Possible diagnosis of IC but not so sure?!

[domsmom8]

My name is Jessica and I am 27. I have an amazing fiancé and a wonderful 8 year old son! August of 2010 is when my problem started. Before then I was a healthy 27 year old although I suffered from many UTI’s since childhood and in 2007 started getting kidney stones. I would get about 2-3 UTI’s a year. As many, I have seen multiple doctors who couldn't help me. In my quest to find a doctor who understands my symptoms I have been tested for all STD's which were all negative, BV and Yeast... Negative. I was admitted into the hospital in September because I was dehydrated and couldn't even keep water down. I had lost more than 20 lbs. While I was there they did a urine culture and said I had a UTI/Kidney Infection. I was shocked because I've had many over the years and didn't have any symptoms of a UTI. My only complaint to the doctors was that I had a constant burning sensation in my vulva area, no pain with urination or the frequency/urgency associated with a UTI. The burning was limited to the left side although the pain radiated I guess and made it feel like it was everywhere. The pain was only the burning sensation and felt like it was above the urethra. After being released from the hospital the doctor called and said the culture grew group b strep and said that my symptoms may be due to this and gave me a 7 day antibiotic. I thought Group B Strep was a problem in pregnancy, which I am not! Although it helped relieve the burning sensation slightly, this didn't help completely. It doesn't hurt to use the bathroom and I do not have any pain in my bladder either. I don't use the bathroom more often although I do wake up during the night to use the bathroom, 90% of the time only once. I don't have the urgency to go like you do with a UTI, and only in the morning do I struggle slightly to urinate. Almost as if my bladder is super full and it makes it a little harder and feels like I have to push.
On December 20th, I saw the specialist at the UNC Women’s Center in Chapel Hill, NC for the first time and I was given the possible diagnosis of IC. I’m currently taking Elavil and an antibiotic (Macrobid) daily. I was given a prescription for elmiron but my insurance doesn't cover it , and I can't afford to buy it at full cost. I have been taking the Elavil and antibiotic daily since the 20th and have no relief yet. I am also taking a low dose of vicodin as needed for the pain. I know my pain is nothing compared to the stories I've read during my research but I'm also worried that this possible diagnosis isn't correct. I don't feel any pain when I first wake up in the a.m. but as the day progresses the burning starts and gets worse. By the end of the day I am miserable. Urinating doesn't cause any pain and doesn't worsen my symptoms. I don’t have any pain with intercourse either. I've noticed that sitting and tight pants/underwear cause the burning to get stronger. And the only time I find relief is by lying down. It may take a while to subside but eventually does. However spending my day lying down is next to impossible as my 8 year old son is all over the place!! I am wondering if anyone has had any symptoms similar to mine who has a correct diagnosis of IC? Is this what it is like at the beginning of this disease? I've only been suffering for about 5-6 months but it's felt like a million years! Any info would be so appreciated! I want my life back!!

[ICNDonna]

I do think it's possible you have IC. What kinds of tests were done to make the diagnosis? Are you following an IC diet? That can be very important to help keep symptoms controlled.

If you have concerns about your diagnosis, you may want to seek a second opinion. That doesn't mean you need to change doctors.

Warm healing thoughts,
Donna

[domsmom8]

Well, I haven't had any actual tests done yet. I would like for my doctor to do the cystoscopy, that may help give us a clearer answer! I have also looked into PNE and was wondering if this may be what I have. At the start of this my gyn also did a biopsy of the vulva and from the local anasthesia I found relief for almost 3 days. It may or may not be because of the anasthesia, I just know I had absolutely no burning for the few days after the biopsy. Maybe a coincedence.. I dont know. I am waiting for a call back from my doctor and am going to ask him about doing the testing. Do you recommend any particular tests other than the cystoscopy? Thanks for you response

[ICNDonna]

At the time I was diagnosed in 1975 a cystoscopy with hydrodistention, after other testing to rule out other problems, was usually the procedure. Now there is a potassium sensitivity test --- and some doctors make a diagnosis based on ruling out other things plus responses to some specific questions. An office cysto will not necessarily diagnose IC, but is a part of the ruling out process --- my bladder looked healthy and normal during my office cysto.

Donna

[delfin]

Have you been examined and checked for pelvic floor dysfunction? Just wondering because you said that your symptoms worsen during the day, and mine do too.

[domsmom8]

When I saw the specialist he did an exam but Im not really sure if the doctor was looking for possible pelvic floor dysfunction. During my first visit I will say that I wasn't exactly as prepared as I should have been! I am waiting for him to call back, hopefully sometime today, and I can ask him if he considered that during his exam. Do you have any other pain, urgency/frequency, etc? Or is your pain only the burning sensation to? He did say that I dont quite fit the "profile" like many other IC patients do because of the lack of other symptoms, but he suggested that I try the medications to see if I find relief. And of course I have not yet felt any relief.

[meResque]

I say give the Elavil a little more time to fully kick in. It has helped me more than anything else, (and obviously the diet!!) and it took a full three weeks to kick in for me.

[domsmom8]

I say give the Elavil a little more time to fully kick in. It has helped me more than anything else, (and obviously the diet!!) and it took a full three weeks to kick in for me.

Thank you for your reply! I am going to stick with the elavil... I'm curious though, what does it reduce your pain to? The doctor asked me if I was looking to reduce my pain to tolerable levels or to eliminate it all together, which to me kind of sounded like a dumb question! Of course I want the pain eliminated, but I'm wondering if maybe I am expecting to much? And did the drowsiness of the elavil ever calm for you? I have the hardest time getting up and going in the mornings. After dropping my son off at school I can barely stay awake and usually end up falling back to sleep! That has been the only problem I've had with it.

[meResque]

Here's a run down of how is went for me:

Severe pelvic floor pain starting July 2010.
When I say severe, I mean I couldn't get out of bed most days, it hurt too much to move. And when I did, I had to stop and squat every 10 minutes to relieve the pain enough for me to continue. Could barely sit in a car, couldn't function without my heating pad. This was my only IC symptom, and has remained so. It alternated between pain in my butt area, and a burning that sounds exactly like what you have.

Diagnosed IC October of 2010.
Started Elmiron, diet, muscle relaxers, and physical therapy November 2010.
Pain decreased by about half after four sessions of PT. It was a big improvement, but I still couldn't sit for long periods of time without a lot of pain.

Started hydroxyzine mid November. Didn't really do anything.

Started Elavil December 2010. Didn't notice anything at first, then I started commenting that I was having way more good days than bad days. Then I started commenting I was ONLY having good days. Then I started forgetting I had IC altogether! It really was like a lightswitch for me. I'm sitting here, at work, no heating pad, no muscle relaxers, no pain.

As far as the sleepiness... what dosage are you at? I only take 25 mg. I take it around 6pm, and go to bed at 10. I find that if I take it that early, any grogginess I have is gone by morning. I did accidentally take an extra dose of it one Sunday morning. (Meant to take hydroxyzine, oops...) I slept All. Day. Long.

[domsmom8]

Thank you for sharing your story with me, although I hate knowing there are other women going through similar things it's nice to know I'm not alone too! I am glad that it is working for you!! I will give it some more time. Hopefully soon I will start to notice something. I am taking 25mg of the elavil as well, I'll just try taking it earlier in the evening. I haven't been working because of the pain I have been in but I'm anxious to get back to work! Do you know if the elmiron has made any difference? My fiancé and I were worried about the cost as my doc said it may or may not do anything. And with the current meds and PT, is that to treat the problem or is this just to control the pain? I am going to ask the doctor for a referral to a PT as this sounds extremely helpful, but I guess I'm looking for the "cure" rather than to control the symptoms! Sorry for all the questions and thank you again!

[meResque]

I don't know for sure if it has made a difference for me or not. I'm extremely lucky in that my copay for it is $15 a month. My doctor told me it would be at least 3 months before I might begin to notice it helping, and I'm not quite there yet. I have seen some people say it has taken 6 months, and even a year. I know that the longer you stay on it, the better it works, if it does work for you. I haven't had any side effects, other than a slight increase in hair loss, so I'm pretty much just going to stay on it... forever? I don't know.

My physical therapist does believe the PT will "cure" my pelvic pain. NOT my IC. I'm sure you know there isn't, at this time, a cure for IC. She does also tell me that I'll probably need to do some stretching, yoga, etc for the rest of my life to make sure I stay "cured," but she only feels like I need to come back 3 more times before she thinks I'll be able to maintain on my own.

Many people do go into remissions for long amounts of time. I always see people on here reminding those of us who are newer that for every person on here posting in pain, there are hundreds out there who don't need the board because they're doing great, and out living their lives. I find that thought really comforting. I know that in my case, 5 months ago, I never would have imagined I could ever again feel as good as I do now.