IC after c-section

[pdxmom]

Hi all,
This all began for me when I had a repeat c-section on June 20. When the surgeon tried to move my bladder out of the way to get to my uterus, she ripped scar tissue (from my first c-section) that was adhering the bladder and uterus together. She thought my bladder itself had ripped, so I was open on the table for 2 hours while they called in a urologist to check everything. He made an incision in my bladder to check nothing had been blocked my the stitches and then finally they removed my daughter and sewed me up. I had to have a catheter for 10 days and needless to say the bag was full of blood until the day before I finally had it removed.

The problems began after I returned home. I felt like I needed to pee even though I had a catheter in. I told the doctors but they didn't think that was a concern. Then I stopped being able to sleep. I felt like I was having seizures as I tried to fall asleep--I kept jerking awake with the need to go to the bathroom. If that sounds bad, it was. I was already exhausted from pregnancy and the surgery, I had a new baby and a 4 year old at home, and now I couldn't sleep more than an hour at a time. I started feeling psychotic. My doctor thought I had postpartum depression and put me on anti-depressants. Well, that didn't work.

I started searching the Web for help and found out about interstitial cystitis. Diet seemed to be affecting some of the symptoms, so I tried eliminating foods. It took several months before I realized I can eat hardly anything--no fruit, a limited range of vegetables, no soy, and so on. Unfortunately, my daughter has a milk-allergy, so I also haven't been able to have any dairy. But with strict food elimination (I call it my "prison food diet") and some pyridium, I was able to calm thing down somewhat. Finally, after I'd suffered from sleep deprivation for 4 months, my doctor reluctantly wrote me a prescription for Ambien, which really helped me at night.

I went to a completely useless urologist and then finally to a urogyn. She prescribed me Estrace cream, which significantly helped--she believed vaginal dryness from breastfeeding was exacerbating everything. She also guessed that I had IC and that the 10 days with the catheter and the trauma to my bladder had kicked off the inflammation.

It's been almost 9 months and I'm now officially diagnosed with IC. My bladder *looks* fine, but I tested positive to the potassium chloride sensitivity test. I realized I really have 3 problems: There's the IC. There's the vaginal dryness. And, there's scar tissue.

Since my symptoms are so much worse when I go to bed, my (good) urologist thinks there are adhesions on the outside of my bladder that pull on it when I lie down. I did pelvic floor therapy, which was pretty good. (I got a home TENS unit, which helped to break the pain.) But I started see a PT who specializes in "visceral manipulation" about a month ago. She's fantastic and I'm now able to lie in more positions without severe discomfort. I'm very hopeful about this treatment.

Since I've been breastfeeding this whole time I haven't been able to take any IC medications. I've had a few rescue instillations, which feel great while I have the medicine inside me, but haven't done much past that. I did start taking Cystoprotek which has improved the internal burning, but seemed to make my vaginal dryness worse. I'm now using a vaginal moisturizer between my Estrace treatments to help with that.

I have my prescriptions for Elmiron and hydroxyzine (the antihistamine) ready to go next week when my daughter is fully weaned. I also have most of the set up for weekly home rescue instillations. I've yet to find a place where I can get LoFric catheters (suggestions?). I'm hopeful that starting medications will help me make another leap with my recovery.

What I'm wondering is if you guys recommend trying Elmiron in instillations instead of taking it orally. Most of the posts I found about Elmiron use seem to be from 2006. How are most people taking it now? I have a very flexible urologist and I'm sure she'd be amenable to me doing it in instillations if there are some convincing reasons for that.

Thanks for listening!

[SharonA]

Oh my Gosh...I am so sorry this happened to you.

If you will scroll toward the top left of this page, you will see that Lo Fric Catheters are in the "Our Sponsors" list. You can click on it there or here is the link to it also. http://www.astratech.com/

[JenG]

So sorry you had to go through this! I myself had similar problems. I had two c-sections and had built up a lot of scar tissue that connected my bladder to my uterus. After many years of pelvic pain, I visited many doctors and noone connected my pain to my bladder. They all thought it had to do with my uterus, so I ended up having a hysterectomy. They had to do a complete abdominal inscission due to the fact that my uterus was still attatched to my bladder. Three months latter, and my pain had not gotten any better, that is when I finally got my IC diagnosis. I had the hysterectomy for no reason.

So it is a good thing that you have linked your pain and bladder issues to the IC, that way you can avoid having any future unnessesary surgery. As for the scar tissue, it is a no win situation. Even after the hysterectomy had cleaned out a lot of the scar tissue, most of it has grown back and I still have the same issue you do, with the scar tissue pulling on my bladder. I have yet to find a good answer for this problem... so sorry.

I have, however, found installations to be a tremendous help. I get them every two to three weeks. I also take elmiron orally (have done both for four yrs. now). I think it is a combination of the two that help.

As for the diet, I do try to stick to it as much as possible and notice when I have too many of the triggers. I am struggling right now, though, because a yr. ago, my 12 yr. old daughter was diagnosed with IC as well and keeping her on the diet is difficult. She really tries, but she is just a kid who wants her soda, etc. but deffinitly pays for it.

I hope my rambling helped somewhat. Sometimes it helps just to know you are not alone.

Best of luck to you!
:grouphug:

[pdxmom]

JenG, that is so messed up. I'm sorry you had to go through a hysterectomy needlessly. SharonA, thanks for the link!

[vm]

My IC started after my second c-section, too. My symptoms hit out of the blue one month after. I had a 3 year old and my newborn - it was awful so I really do empathize. I hope you find treatments that help and am so glad you found the ICN. :)

[BT2008]

Okay ladies...I see a similar pattern here:

I had a partial hysterectomy in 1985 with no subsequent problems for many years.

In 2002 I started having some pelvic pain that gradually got worse over several months. The pain extended from above my belly button to my pubic bone, and across the diameter of my tummy to both sides. When I finally convinced a gyn to go in and look around, my abdomen was full of adhesions/scar tissue from my hysterectomy so many years ago. The scar tissue had wrapped around my bladder, my colon, my appendix, and my only remaining ovary was totally buried in scar tissue. Plus, the scar tissue had attached itself to one side of my abdomen and stretched all the way over to the other side. The doc said he had never seen a worse case of adhesions! He actually shared some of his pictures with me, and they look bizarre!

Even though I was not hit with the severe pain of IC until this past June (2008), in hindsight I am pretty sure that I have had IC since that adhesion surgery in 2002. After that surgery, I had an extremely difficult time peeing for several weeks (several times I thought for sure my bladder would burst before I would pee!), and over the next few months I developed a serious problem with frequency/urgency. Although I didn't seek medical attention for this problem, I think this was mild IC.

Then, six years later, after leaving the mild IC untreated, the disease progressed to the point that my bladder is now pretty much ruined.

So, I am definitely thinking--that at least in our cases--the "trauma to the bladder" theory is a pretty safe bet! Just think about how they have to go about removing those adhesions...my pictures show the 'razor-like' instrument that have to use...egads!

~Beth