Positive KCl test, newly diagnosed

[kellance]

I have been reading the message boards for a few days now and it appears that this is a great place to connect and gather information and support. I would like to share my story and any feedback would be welcome.

My name is Kelly, I am 37 years old, married with three boys ages 4,6 and 8. I have suffered from pelvic pain on and off since my early twenties and have had numerous laparoscopies as well as hysterectomy and both ovaries removed. None of these surgeries showed any abnormalities, but endometriosis was always suspected because my pain was always worse before and during my period (when I had a uterus). I also had a positive response to hormone therapies which included Lupron and Zolodex which put your body into a pseudo-menopausal state. As well, I was pain free during each of my pregnancies and while breastfeeding and for about 8 months after my hysterectomy (which was in May 2006). The doctors have been frustrated that nothing can be found that appears to endometriosis even though it seems that the pain is related to hormonal changes.

I have been suffering this last bout of pain since November 2007. I have been in excruciating pain every day. I have not been able to work, take proper care of my children, or participate in many of the activities I once enjoyed. I was told that I would just have to accept the pain and realize that my life might never be the same as it used to be and that I may have to be on narcotic pain killers forever. I am having a very hard time accepting that.

I have found that I need to remain proactive and I made an appt. with my urologist and asked if he could rule out IC because in discussion we had already decided it wasn't likely. He agreed to perform a KCl Sensitivity test as well as Cystoscopy with bladder distention under general anesthetic. I was awake for the KCl test and at first I didn't feel it and then all of a sudden it started to really burn and then they administered the anesthetic so I would not have to be in pain. When he came to see me after recovery my uro said the KCl test was positive but the hydrodistention looked normal (no glomerulations or ulcers). He thinks that based on this test being positive and given my symptoms and the fact that nothing else has ever been found we should discuss treating for IC. I will be seeing him in about one weeks time. Right now (three days after the testing) my pain level is through the roof and I am taking double the amount of painkillers I did before.

My pain has always come from one very particular place (which I would say was an ovary if I still had ovaries). It is always very severe stabbing on the right side and to a lesser degree on the left side. The last month I have noticed significant lower back pain, but not like a muscle strain. I do pee very often (every 30 min) and get up every hour at night to pee but it never hurts and it doesn't seem to feel better after pee or anything as others on these boards have mentioned. I am unable to have intercourse with my husband because it hurts too much, and I usually end up in ER if we do. I think we've maybe done it twice in the last year...poor guy. (He also had to take time off work to help out because I was so disabled) People here talk about "flares", but my pain is always present and has been for months now.

My questions are:

Could this be IC even though my pain seems different from what I have seen described by other women on these boards and because the hydrodistention was negative?

Can diagnosis be made based on symptoms and a positive KCl test?

Would it be a bad thing to start treatment just to see if it helps? Are there bad side effects to treatment?

Is it possible that I will ever participate in triathlon (the sport that I love)again?

If anyone has any advice/insight please respond because I am very tired of being in pain and quite frankly pretty scared that I am never going to find relief.

Sorry to go on and on
Kelly

[floridamom]

Welcome to the boards:-) This is a great place to post questions, vent or just share whats happening with your life. Everyone here is very nice & supportive.
To address some of your questions...since you have been thru sooo many tests & did have that positive test for IC..it is quite possible you do have it. Lots of people have IC that dont have any glomerations or anything on their bladder. IC is a very very hard disease to diagose, it involves ruling out alot of other things & then realizing that it is prob. IC.
Everyones pain is so different also. I never feel any kind of pain in my stomach area, but i have terrible burning, cramping, & just general OUCH in my pelvic region. The burning is constant for me in my vaginal/uretha area. I also pee about every 45 min. & it hurts like hell.
IMO, i would def. start treatment, it wont hurt to try it & it might actually work. IC pateints often have to try multiple types of meds before they find something that works.
As for the pain, we all know what you are going thru, it is depressing & debilitatiing. I have 3 kids also & am a single mom, so i can totally relate to you.
There is a ton of great info on this site, i would recomment you read the IC handbook for newbies. Just get yourself informed & you are ahead of the game.
As for running in a triatholon, i always say NEVER GIVE UP HOPE!! maybe you wont do it this year, but by next year you might have everything under control or even in remission!!!

Hang in there ! :welcome:

[statesboro]

I decided I would respond to your thread all of a sudden. Oh! I am not a female, but I did notice one had chimed in. Others probably will. I can say I don't know about the KCI test too good. I still would not doubt you have got IC. Of course, I don't have any pain now.(nope) I figured I would never have relief, but I still don't have total relief. That would require me being free of IC once and for all. You can give an update next week if you do desire. (as you stated you will be going back) It seems like you need some prayer as well. We probably all do. I don't know about being in a thriatholon, but I would not sweat that too much. You don't need any more stress right now. Oh! I did not mind you went on and on.(as you had put it) You needed to vent some, and you are not the first one. Besides, I would be quick to give any IC patient a shoulder to cry on. Ok, then. Take care and be good.

[leelee88]

Hello and :welcome:

My worst flares appear around the time of my period AND I hurt in my bladder BUT I also have pain where my Ovaries are!! I know my flares are hormonal because they are the same time every month!. Now I do have other flares from stress and food, but they are a little different.. The hormonal flares are from below my belly button to each lower side and my back! And I feel spasms..And you CAN have IC even if the Cysto/Hydro did not show anything. And if everything else was ruled out then this prob is a good direction to head towards. This way you can get on a treatment plan.

Have you read about the IC diet? I would strongly suggest you check it out and try leaving all the bad foods alone. This diet does not work over night so you might have to stick to it for a few weeks but it has been the one thing that has given me my life back! Also check the Patient Handbook out.. The link is at the bottom of my sig.