Hi, I'm new. Possible IC - Here is my story

[MasterAli22]

Hi,

I've been meaning to join this forum for a while now, and I've finally gotten around to it. I hope I can find some support here. Thanks in advance for any feedback and advice.

Here is my story (sorry it's long, please bear with me if you can):

I am a 29-year-old woman that has been suffering from IC-like symptoms for just about a year now. It all started after I had my first baby in January 2009. About five weeks after giving birth I had a horrific UTI. It started in the morning, but evening I was in horrible pain and could barely leave the bathroom. I had the shakes, was feverish, etc. I went to urgent care at my regular clinic and yep, it was a UTI -- too many white blood cells to count. I was nursing at the time so I was given a sulfer-based antibiotic. It seemed to help, the bad symptoms went away in a few days. But weeks later I still didn't feel quite right.

I just felt like there was this constant irritation and urge to pee. So, I went back to my GP, they did a urine culture and there was nothing. So that was that. Well... a couple months go by and I still feel the same. It wasn't horrible, just an annoying feeling like I always had to go to the bathroom. I never had horrible urgency... just the sensation. So I then went to see my OB/GYN and she checked out a few things: my bladder hadn't dropped, culture was fine and I was emptying my bladder fully. She gave me Pyridium to see if that would help -- it didn't. She referred me to a Urologist and so I got an appt in July 2009.

At the Uro appt I had a full exam and explained all my symptoms. I didn't have any pelvic pain, just that constant sensation that I need to pee and just an irritated feeling. She gave me some info about IC -- thinking that could be the issue, but then gave me some more antibiotics to try. They did nothing. Now it was see if things changed and come back in three months.

So now it was October 2009. I was no longer nursing so I was giving another stronger antibiotic and Prosed to see if that helped my symptoms -- still nothing. I called the doc back after two weeks as my symptoms seemed to get worse on the antibiotics and Prosed. After that they wanted me back in to do a Potassium sensitivity test. I was very nervous about it as I had read horror stories online.

Well, the potassium test was positive. It burned! Wasn't horrible, but definitely uncomfortable. I was really upset as this pretty much meant it was likely IC. I just cried that day. It was somewhat relieving to know what it could be, but devastating to know this is something I will probably have to deal with forever now.

So after the potassium test I got my first Heparin treatment. And, after a couple treatments I started to feel normal again. It was heaven! From about mid-October to the New Year I felt good. No symptoms or barely symptoms.

I had a cystoscopy mid-December (it had been scheduled for months). They wanted to check me out to make sure nothing else was going on. It was not enjoyable so say the least. Luckily there was nothing evidently wrong with my bladder, but the aftermath of the procedure was awful. I have never felt so terrible. Luckily I felt back to normal after a few days. I had two more Heparin treatments (total of 8) after that.

But, then a few weeks later my symptoms came back. A constant irritation and the sensation to pee. It sucks!!! I have been feeling so off since mid-January. It affects my mood and my happiness. I don't feel like myself. I get really down. I just want to feel normal again -- especially knowing I felt good there for a few months. I have a one-year-old who I love with all my heart, but it gets tough to handle him all day when I am feeling bad. I work part-time as well, and luckily I don't feel too bad when I work because I'm sitting all day.

I notice my symptoms most when I am standing and up and about. I know pelvic pain is a huge part of IC, and luckily I haven't had that, but this constant irritation and sensation to void is horrible. I feel like I am going to leak at any moment. I don't think I have -- but I feel like it could. It's a daily struggle to keep myself feeling good and happy. I have a good life, a wonderful husband and an amazing little boy, but sometimes when you feel bad, you just can't help but get down about things.

I was never officially diagnosed with IC -- my Uro said she'd have to do a biopsy to determine that and there is no need to do that at this point. It's a matter of treating the symptoms right now. I have a follow up in a couple weeks and another one in 3 months. My issue right now is that my husband and I are trying for another baby so I am unable to take Elmiron or even Cystoprotek to see if they would help. It's very frustrating and I'm worried about how things will go if I get pregnant.

I also had some other health issues last year -- which all started after having my first child. I was healthy and normal before getting pregnant. I don't know what happened. Maybe the pregnancy triggered things? Maybe it's just age?

I had Iritis twice (inflamation of the iris of the eye -- horrible thing!). Had bloodwork done and turns out I have a genetic marker (HLA-B27) that makes me more prone to getting specific kinds of autoimmune/inflammatory diseases, one being Iritis. So far that is no connection I have found online anywhere between IC and HLA-B27, but who knows. It's just curious to me. I'd love to know if there is anyone else out there with similar issues.

Alright, well thanks for reading. If you have any thoughts, suggestions, or advice I would be greatly appreciative! I look forward to being a part of this forum and finding some new answers and information.

-Alison

[lovemyalliebug]

After I had my baby is when my symptoms started. I went to my urologist and he scheduled a cystoscopy. I was diagnosed with IC.I have a feeling that pregnancy might cause it. I'm pretty sure it's okay to be pregnant with IC. Your symptoms will probablly be worst during your pregnancy though. I would talk to your OBGYN. I know that IC is very common in people with lupus. I'm not sure if any doctor has mentioned that to you. I have many eye problems. My obstetrician can't figure out exactly what it is. I've also had PID. I've had several other symptoms hair loss, joint pain and inflamation, etc. My doctor suggested testing me for lupus. I'm sure there is some kind of help if you want another child. I hope this helps.

[ICNDonna]

First of all I'd like to say to the IC Network. I'm glad you found us.

One thing I have learned is that it doesn't matter what test, treatment, or medication out there, there will be at least one horror story.

Some ICers experience remission during pregnancy, others have a difficult time --- which is the case for people who don't have IC too. I hope you'll be in the remission group.

Have you tried the IC diet? If not, I suggest you begin today. Some find that single step helps more than any other. You'll find the link to the latest food list in my signature below. It's printable and makes an excellent reference.

Sending warm healing thoughts,
Donna

[lovemyalliebug]

Thank You

I am definently going to start the diet. I haven't had any medical treatments. I would love to possibly not have to take medicine. I was diagnosed almost 3 years ago. Up until about 4 months ago it wasn't too bad. Now I am desperate for some relief. Thanks for welcoming me. I hope your in remission also.

[cmclien]

Hi Alison,

I think pregnancy or illness or surgery/trauma do often trigger autoimmune diseases. My hashimoto's thyroid started after my 2nd child was born and I had a terrible case of strep that wouldn't go away. Someone mentioned lupus along with IC. Sjogren's and IC also go together though at this point there is no conclusive evidence that IC is autoimmune.

Anyways, lots of people here get pregnant and many of them go into total remission during pregnancy and breastfeeding so I don't think getting pregnant should be an issue for you.

Are you on any meds right now for the frequency? There are a couple that might help you. One is a group of anticholinergenics that relaxes the bladder muscle so it quits spasming. Can you feel spasms? You mentioned you feel like you might leak sometimes, that often happens when your bladder spasms. Standing is always worse for me too in regards to spasms, I can be walking along and wham I feel like I've been poked in the bladder (when it first started happening I thought it felt the same as when I was pregnant and the baby would kick or hit you in the bladder, its that kind of feeling for me). I am currently taking vesicare which REALLY helps frequency and that annoying feeling of constantly feeling like I have to go. I have to say it doesn't help everyone and can cause retention in some people but if it works for you its wonderful. I don't know if you can take this or the next one while you are pregnant, your doc would know.
The other drugs that help people with frequency is elavil or pamelor low dose tri-cyclic antidepressants. In low doses (not for depression doses) they help "deaden" the nerves that are bothering you. Thats the only word I could think of.

The fact that its gone away is a good sign. Donna is right, the diet really helps too especially the biggies like avoiding citrus and citrus juice, (including cranberry), chocolate, coffee, black or green tea, alcohol, carbonated beverages and tomato products. Whether you have IC or OAB this diet is the same and very helpful.

Good luck!

[MasterAli22]

Hi Everyone,

Thanks for your replies and suggestions. I do know about the IC diet and I really do need to try it. It's just so hard for me. Everything that I love is on the bad list. I drink a lot of diet soda (Diet Coke, mostly caffeine-free). It's a really bad habit, I know, but I'm slightly addicted so it's really really hard to go without. It's probably the biggest culprit because of all tha acidity. I know I need to try. It's just difficult. I don't drink juices so the citrus wouldn't be hard, but the chocolate, tomato and soda would be a struggle. I know I should think about the grand scheme of things. A few months without these foods is nothing compared to long-term... but if they reduce my symptoms then it would be worth it and hopefully over time I could get used to avoiding these foods.

[lovemyalliebug]

I'm so sorry I think that message was for you from Donna. I had an email that linked me to that. I wasn't thinking. Good luck, and I hope you can get the help you need.

[lovemyalliebug]

Giving up diet coke is a challenge. I want it more cause I know I shouldn't have it. But I gotta do what I have to do. I never have had a restricted diet. I'm going to give it a try and see where it gets me.

[JZIC]

Hla-b27 & ic

Hi Alison-

I've never posted on here but thought I'd respond to your post after seeing your comment about HLA-B27. I was diagnosed with IC at the age of 24. I just turned 53 so it's been a long road. I think I've earned a merit badge or two along the way! I'm also part of the 10%ers (men) with IC which are probably not heard from as often. During the first 15 years with IC I had all of the usual symptoms (not pain through) including frequency and urgency. Suddenly at the age of 38 it appeared to fizzle out and go into remission for about 2 years. Unfortunate at 40 it came roaring back and I've now been battling it ever since and it has been somewhat of a progressive condition the 2nd time around.

At the age of 45 I came down with a bad case of iritis after inadvertently looking into the sun for a few too many seconds. After hearing this, my urologist suggested I get tested for HLA-B27 and sure enough I had the marker. That was the first I had ever heard of it. Over the years since I first came down with IC, my sister has been diagnosed with fibromyalgia and my cousin was diagnosed with lupus. When I got the news on the HLA-B27 I suggested they both get tested and guess what....they both have the marker. It would seem that there is clearly a link between HLA-B27 and autoimmune conditions (beyond just AS) and IC most certainly falls into the autoimmune category. Unfortunately so little is know about autoimmune diseases, their triggers and how to turn the "switch" off. HLA-B27 is even more mysterious.

If nothing else I would say that the length of time that I've dealt with IC shows that it can be done. It’s a matter of managing the condition rather than letting it manage you.

Good luck with things!
John