New and seeking IC support

[chinson]

I was recently diagnosed with IC in Sept '06. I tried PT for 4 months with no improvement followed by 6 instills with no success. Now I am on elavil (not working for me-severe side effects worse than the pain), elmiron, an antihystimine, darvacet, xanax and lunesta. My question is this: my primary complaints are burning vaginal pain and right side pain. Does anyone else have these pains? Of course, I also have frequency and urgency. I had many tests done before diagnosis and went through rounds and rounds of antibiotics: ultrasound, xrays, CT scan abdominal and pelvic, blood work and finally cystoscopy/hydo- which did not show any lesions or anything else significant.

This right side pain thing really bothers me. I started having bladder problems when I was 19 - 1971 and even had some instills way back in the early 1990's. Finally, out of exasperation, my urologist noted a non-functioning duplicate kidney on my right side that could be part of my problem but should not even be related. So in 1999 he operated and I was symtom free for 5-6 years until this last Sept. Any thoughts?? I sure could use some IC companionship right now.

[ihurttoo]

I dont know....I have several thoughts, but am not a Dr. or any kind of medical person at all, but I will throw out what I am thinking. First, I wonder if it is possible for the 3rd kidney to grow back or any portion of it? That is the first thought I am having b/c your pain went away after the operation and has come back now.

Another possibility is adhesions. Adhesions can occur after surgeries or any other kind of trauma (like endometriois). Adhesions generally form on an area that has scarred internally from disease, infection, or trauma (like from surgery.) Adhesions cause tissue (and even organs) to stick together. I had adhesions when they found my endo and I had lower right side pain for YEARS and no one had a clue what was causing it. They blamed all my pain on the IC. Luckily, when they did laproscopic surgery, they found the endo and adhesions that were causing alot of my pain.

A history of having abdominal or pelvic surgery is one of the things they look for diagnostically. Another thing, many (but not all) patients with adhesions describe the pain as a pulling pain, (probobly b/c when you move, it tugs on the adhesions) The pain also varies in intensity with different positions.

A Gyno would be the best one to diagnose adhesions. Make sure you tell them about your surgical history.

As for the burning vaginal pain, it could be from a variety of things, (like a chronic yeast infection, vulvadynia, or other things.) Once again, a Gyno is the best one to d/x this too.

Meanwhile, there are several things you can try for the vaginal burining and pain until you get in to see your Dr. First, you can start the Low Oxalate Diet for Vulvadynia patients. You will find it (along with alot of other great infor), in the Patient Handbook. It is located here: http://www.ic-network.com/handbook/ Also, most Drs. would advise avoiding soaps or bubble baths on that area, as most are very irratating. Also, switch to white cotton underwear and solid white toilet tissue. Some women find a barrier cream to be helpful to use to keep urine from having contact with the skin, since urine is so acidic and usually is irritating to the raw tissues. Plain ole Crisco shortning is used by lots of ladies with good results. You can also ask your Dr. to call in some topical Lidocaine 2% Jelly to apply topically to help numb the area to give you some relief.

I am sure others here will have more and probobly better ideas. But I hope that someone thinks of something to help you. I sure do hate hearing about all you have been thru and are still suffering with.

If you ever need a friend, feel free to pm me anytime. I remember when I was new here, I also would have loved to talk to someone who actually had IC and vulva issues and could understand. So, feel free to PM me anytime! Though I may not have any answers, I sure do understand!

Hugs,
Amy

[tigger_gal]

you diffently came to the right place for support. I have a lot of side pain, usually on the left side. I hope you start feeling better soon.

[leelee88]

[L. Thomas]

I'm glad you found this site. Support is here.

[bikingjudy]

Oh for a good night sleep

I have been diagnosed with IC since 2002. I'm taking Elmiron 4/day. Have tried instills (only one kind) and it hurt like hell so stopped that. My pains are aggravated of course by diet but seems like most everything you eat can cause it. But I'm really having problems sleeping since the prone position seems to cause me to awaken 6 or 7 times a night to pee just 1/4 cup. About the 3rd or 4th night I'm so tired that I actually sleep good.

I had a hydrodistension almost a year ago and it really helped for about 9 months. I'm getting ready to have another. But some of the posts are scary about pain being worse after subsequent hydros.

I notice that in a previous questionnaire 2/3rds of those replying said that cystistat bladder instillation helped. I'm not sure what that is so will ask my urologist but would be helpful if some of you have had success with that one.

I also have at least one Hunners Ulcer in my bladder along with those veiny clusters that make up interstitial cystitis.

I am 64 but empathize with all of you who are a lot younger, sexually active, and are still child bearing.

I know at least one friend who has been pain free by just taking the 4 Elmiron/day. I see that is not the normal reaction from most of the rest of you.

Anyway, any suggestions for my sleep issue would help -- I tried Elavil and it didn't work for me.

Bikingjudy

[ICNDonna]

Bikingjudy: If you were helped by hydrodistention previously, it may very well help again. It's been working for me for 32 years now.

Fellow senior citizen Donna

[L. Thomas]

Rescue instillations are basically a bladder wash that you retain for a time (my urogyn told me to hold it as long as I could). Mine contians lidocaine so it numbs the bladder. He think that calming the bladder allows the bladder to return to normal function. The way he explained IC to me sort of sounded like a heart attack of the bladder and when it was "shocked" by the instill it allowed the bladder to return to normal function isntead fo shaking.

I was referred to a urogynecologist for inconsistent symptoms and my gynecologist was stumped. I had extensive pelvic reconstruction and the symptoms of urge and stress returned less than 3 months after the surgery. The urogynecologist happened to be a specialist in IC and he had seen my combination of symptoms in about 25-30 patients out of the 100’s he had treated. He tried a instillation and it worked the first time. I do home instillations as needed. My first sign that I need an instillation is getting up more than 2 times a night. I have been doing this for more than 3 years and have had no problems at all. It did take some time learning when I needed an instillation because not all of the symptoms always occur when it is time for one.

When I was diagnosed with IC I didn’t have a clue what it was. I just happened to be referred to someone that happened to know a lot about IC. I think the Lord was taking care of me. My symptoms do no include food sensitivities or severe pain. I think that was what was so confusing to my gynecologist.

There are a lot of recipes for instillations. It may be that the recipe that you had was one that contained something you were sensitive to or that the amount that was instilled was more than my recipe. I know that instillations have taken care of all my problems

I hope that if you try instillations again that they are as successful for you as they are for me. I have covered my experiences more throughly in my sucess story. Just click on the link in my signature.