Finally Diagnosed! 5 doctors and 2yrs later

[mcs0425]

I have been getting severe pelvic pain for over 2yrs. It is a relief to be be diagnosed finally so I don't feel like I'm losing my mind anymore! I had actually given up after the 4th doctor, 2nd surgery and 2 rounds of PT. I had surgery to be checked for IC before and the result came back negative. Then I had laproscopic surgery to check for endometriosis, negative as well. My husband saw a billboard a month ago that said "If you have Pelvic Pain call this number". I thought what the heck and gave it a shot. On the 3rd visit I was diagnosed. The treatments seem to be working well thus far. I don't know how people keep from going crazy having IC. My lastest flare up was a couple days ago and I seriously thought my insides were going to come out!
This is a great site to have people going through the same thing you are to get there perspective. I really need to find help with pain management. The only think non-narcotic that helps is a warm bath. I took 3 the other night and almost went to the ER but they seem not to know jack about IC. If anyone has any secret remedies for the "flare ups" please please let me know!!
Michelle from TX

[Marisol]

Hi Michelle, :welcome:

I am happy that you have finally been diagnosed and your questions answered. I am interested in knowing what type of back pain you are having and how severe is it? I am suffering from horrible back pain that is almost crippling. I am under the care of a neurologist now and she put me on Neurontin for the back pain. It helps me but I am still having pain. What kinda treatment are you under I am interested in knowing if its something different than mine. For the flare ups I would recommended that you read about the IC diet available here. I felt better in a couple of days after starting it. Just be warned that it will mean giving up some of your favorite foods, but it is all worth it. I dont even miss chocolate anymore. I am glad you found this forum where you can find others who understand what you are going through. I wish you the best. Kodos to your husband for seeing the number to call:woohoo:

[mary124]

Glad to hear that you finally got a dx, but not happy to hear that you have IC. You are in a good group of people here, as they give really good advice.
Back in 1992 when I was first dx with IC it took me 3 doctor (or about that many) and 5 years to find out what I have! Of course, I didn't go to the doctor continiously(?) but at least a few times per year whenever I couldn't take the pain, frequency, etc that goes along with IC. In fact it was another doctor who told my doctor at the time that I might have IC but I would need a hydro/cysto to find out. that came back negative, but the biopies were positive. This other doctor couldn't believe that as he told us that I was too young to have IC (I was 32 at the time). Now of course, here i "see" other people with IC who is a lot younger than that.

[mcs0425]

I'm 29 and have had symptoms since 27. I have been following the IC diet since my first visit with this doctor. I have also completed my 6th resue treatment as well. I am doing a total of 9. He diagnosed me with Chronic IC. I was prescribed the Elmarion, Vesacare and Elavil. I can't take he Elavil, it makes me feel like I'm in lala land and I had gained over 20 lbs on it previously. The Vesacare really seems to be working for the frequency.
I have not noticed any back pain occuring from having IC, so I am thankful for that! I have the chronic pelvic pain, frequency and pain with sex. I use to suffer with back pain years ago but then had a breast reduction done.
I really do like this forum! It's so nice to see that we are not Alone! I wonder if there are any support groups that meet up to discuss what they're going through. That would be interesting and helpful.
I do thank God that my husband saw that billboard and I will be symptom free soon. As we would like to start trying to have babies.

[Marisol]

I am also doing the resue instillations for nine weeks, I will be on week four this week. I can honestly tell you that I don't feel any difference after the meds are in. I also have chronic IC. I am happy that you don't have the back pain that I do. Good luck with the baby making plans. I have faith that your wonderful husband will make it happen. After seeing the sign he is a hero haha. Best wishes!!!