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View Full Version : Help please! Probable diagnosis of IC


Aimeekim
02-18-2010, 02:17 PM
Hi everyone,

I was hoping someone could give me some insight into what is going on with me.

I first had painful urination, urgency and frequency 10 years ago ( I was about 8 years old). They did a urine test and I was positive for UTI. Since then, i've had on and off painful urination and also severe pain after urinating for hours which has lasted for maybe an hour to nearly a week at a time. I've been back and forth and back and forth to the doctor in that time. Sometimes I tested positive for a UTI but most of the time I didnt. Also, I find intercourse very painful.

Last year, a doctor FINALLY said to me, you may have IC. So I researched it, followed the diet etc etc and nothing worked. So I decided I wanted to see a urologist. I got my doctor to refer me. The urologist said I had Painful Bladder Syndrome and recomended I have a cystosopy and hydrodisention and prescribed me codeine and zopiclone (sleeping medication). I had the surgery on the 11th of January. They found nothing, everything looked normal. I found it helped with the urgency and the frequency and the pain for a while. After the surgery I was prescribed codeine and tramadol and long story short, I ran out of the medication and I went through a withdrawl which was not helpful at all.

I went back for a Post op consult with my urologist and he suggested getting a Pelvic MRI done, so I had that done about 3 weeks ago. All they found was some kind of unidentifiable scar and that I had polycystic ovaries. I have another appointment with the urologist this monday.

In the last couple of days, the painful urination has been very severly painful and I am still in pain after going to the bathroom nearly 3 hours ago.

I don't know what to take in terms of pain meds because I don't want to touch opiates again because i'm so scared about going through another withdrawl. I have been taking Nurofen but with no relief.

On top of all of this, this is affecting my relationship with my partner. I miss being intimate with him and he misses it as well.

I really hope someone can help. Sorry for the long story!!

Aimee:)

Aimeekim
02-18-2010, 02:31 PM
Also! I went back to the original doctor who thought I may have IC a couple of weeks ago to get some help, and she read the report from the urologist about the cyso/hydro and she said there were no signs that I had IC and that I definetly didnt have it. Then I asked her about help with the pain during intercourse and she said I should go to a sexual health clinic!!!?!??!!?!!
Why couldnt she just have prescribed me some muscle relaxers or at least given me some advice?!? It's just so frustrating waiting 10 years for an answer and then it's taken away from me.

ICNDonna
02-18-2010, 03:59 PM
Are you still following the IC diet? That can be very important. I know of some people who have interstitial cystitis, but it didn't show during hydrodistention --- not the usual response, but possible. I think seeing a different urologist for a second opinion is a good idea. I don't know if a potassium sensitivity test is available in New Zealand, but it's worth asking.

Sending healing thoughts,
Donna

statesboro
02-19-2010, 03:45 AM
I was just figuring it sounded like IC to me. I can't say for sure. I did notice you are going back to the urologist on Monday. Anyway, I have never been to New Zealand before. Oh! We don't enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Yep! You might need to see anothrer urologist after all.

Aimeekim
02-22-2010, 12:21 PM
Hi everyone, thank you for your replys! :D

So I went to the urologist yesterday. He said he was not quite sure what was going on since my cysto/hydro and MRI scan were clear. He is referring me to a pysiotherapist for Pelvic Floor Excersises and to a Doctor who specialises with pain in the vagina. Sorry! I forgot to ask about the potassium sensitivity test, I will next time.

He also mentioned he could do urodynamics (I have no idea what that is) and he could put local anesthisia directly into my bladder via cathader. Does anyone have opinions on these things? Are they helpful for you?

Lastly, he gave me a prescription for my sleeping pills (Thank goodness) and a cream called Emla. I asked him about some kind of numbing gel to use in preparation to intercourse and he suggested the Emla cream for the time being until I see this other doctor. The cream is in a tiny 5g tube, it has no instructions and comes with these patches so I am very confused about how to apply it!

Things seem like they are going okay in terms the way the uro is helping me. He is trying to find a solution whether I have IC or not!

I hope everyone is having a great day.

Aimee