Interstitial cystitis anyone? Dr says there is a link to endo...

Stacie M · 02-14-2006, 05:10 AM

I went to my RE today for a follow up on my PCOS and suspected endometriosis. I will be having surgery when my next cycle starts. Also, in our discussion I mentioned my urinary symptoms (mostly frequency and urgency, as well as some pain). She said that it sounds a lot like interstitial cystitis and gave me some brochures on it. Wow, it sounds just like me! She also said that there is a link between IC and endometriosis, or at least that is the theory. She said that not everyone with IC has endo, and not everyone with endo has IC, but she said a good guess is that 50% of IC patients also have endo. I was reading online tonight and found an article stating that in one study close to 65% of the patients had both instead of one or the other. My RE says that the current theory is that they are both immunologic, therefore go hand in hand.

Anyway, I just thought I would throw this out here to see if anyone else has it. If so, was a cystoscopy done to diagnose it? How painful is it? She wants to refer me to a urologist for diagnosis, but we are waiting until after my laparoscopy is over and done with. I don't want too much on my plate at once. Between PCOS, endo, and now suspected IC, I am a walking time bomb LOL :-)

Stacie M

Tiggamoo · 02-14-2006, 05:31 AM

I have endometriosis but haven't been diagnosed with interstitial cystitis. Before I had laproscopy to diagnose and remove the endo, I felt a urgency with needing to go and I went more frequently. I later learned that I did have endo growths under my uterus and bladder. Since having the lap, I haven't had anymore problems with that. I wouldn't doubt there being a link to endo. Are you having your lap soon? I'm sorry that you are having to deal with all this.

ABumpyGal · 02-14-2006, 04:50 PM

I'm sorry you're having to deal with this as well

I have Endo, have had one lap and removal in 2000 (it was mostly in the cul-de-sac behind my uterus), but I know it's grown back since then. I'm having symptoms again, but I'm putting off the lap as long as I can!

One of my symptoms are bladder/ urinary symptoms very similar to IC. I haven't been diagnosed, yet, but I want them to look into it. Sometimes, as my period nears, it gets so hard to urinate I have to find just the right position to sit in for things to even work! I know that isn't good, obviously

As far as how painful the cystoscopy is, I've heard it compared to being cathaterized. I've been cathaterized and it didn't hurt at all, just felt a bit odd. They can also do this during your lap, while you're under anesthesia. Then you won't have to worry about that at all.

I wish you luck hon

Dana

Stacie M · 02-14-2006, 05:42 PM

Thanks Tigamoo and Dana!

My lap should be whenever my next cycle starts, probably about 4 weeks from now or so. My RE is so sweet and she seems so up to date. She gave me some brochures on IC and told me that she couldn't believe my PCP had never sent me to a urologist.

I definitely have urgency like nothing else. When I have to go, it hits me and there is no waiting. I can't imagine having to hold it. I literally hurts if I can't go right away. I am with you Dana, when my period is close it literally hurts to pee and sometimes I have to sit there for a while for it to happen (but I have a lot of sharp pain then). It's nice to know its not all in my head though.

In one of the brochures it listed foods to avoid and it looks like everything I eat is bad for IC. :-( Things like aged cheese, sour cream, yogurt, fruit juice, etc. are all bad for IC apparently.

Stacie

willow77 · 02-15-2006, 08:09 PM

My sister has IC. She was Dx about 7 years ago, but that was after many years of trying to convince her doctors that it wasn't all in her head. She would have intense pain during her af, so they at first assumed she had endo. (She didn't.) It turned out that every time her uterus would swell it would press on her bladder and cause pain. She had already had her two children, so she told her doctors that she wanted a hysterectomy. They refused for 2 years before finally giving in. I don't think they would have done it at all except that she is a nurse who works in the same hospital as they do, and she nagged them constantly! That was 5 years ago, and she's doing great. Of course, her diet is very bland, but she says it beats the alternative of losing her bladder because of all the scar tissue and having to wear a bag for the rest of her life. I don't mean to scare you or anything--she had a very bad case of IC, probably much worse than you are experiencing. I just wanted you to know that there are women out there who are dealing with it and living normal lives. GL!!

SnowFlower · 02-15-2006, 08:15 PM

I have heard there is a link and the Dr suspects I may have one or both but for right now I have decided not to have a lap.

Stacie M · 02-16-2006, 04:18 AM

Quote:

Originally Posted by KimberlyHeidi

I have heard there is a link and the Dr suspects I may have one or both but for right now I have decided not to have a lap.

If you don't mind me asking, is there a reason who are opting to not have a lap? I am just wondering in case you know something I don't, since I will be having mine soon. Are you doing any treatment for either IC or endo w/o a definitive diagnosis? I think my doctor would treat me even w/o a lap, but I am having it done just to be completely *sure* (but I am very anal like that!).

Stacie M

Stacie M · 02-16-2006, 04:21 AM

Quote:

Originally Posted by willow77

My sister has IC. She was Dx about 7 years ago, but that was after many years of trying to convince her doctors that it wasn't all in her head. She would have intense pain during her af, so they at first assumed she had endo. (She didn't.) It turned out that every time her uterus would swell it would press on her bladder and cause pain. She had already had her two children, so she told her doctors that she wanted a hysterectomy. They refused for 2 years before finally giving in. I don't think they would have done it at all except that she is a nurse who works in the same hospital as they do, and she nagged them constantly! That was 5 years ago, and she's doing great. Of course, her diet is very bland, but she says it beats the alternative of losing her bladder because of all the scar tissue and having to wear a bag for the rest of her life. I don't mean to scare you or anything--she had a very bad case of IC, probably much worse than you are experiencing. I just wanted you to know that there are women out there who are dealing with it and living normal lives. GL!!

I am so sorry your sister had such a bad case of IC! I sure hope mine doesn't get that terrible. I am glad to hear that she has had such luck with her hysterectomy. Mine is definitely worse during AF, but maybe it helps that I have a tipped uterus, so if mine swells it is probably pushing on other stuff, not my bladder.

Stacie M

SnowFlower · 02-16-2006, 04:32 AM

Stacie- Honestly it just scares me. I used to have bladder infections one after another and they never felt better even after it said it was gone. I have a lot of very bad pain and pressure by my ovaries esp my left one and if I press on it or suck in my stomach when I am in pain its a feeling I cant even describe. I had that kind of pain for weeks on end. Sometimes it was constant pain for days and weeks sometimes just for a few hours. Sometimes it would last and keep coming back and sometimes for months at a time it would go away. Since my last period which was a few months ago I had about 5 very bad days in which I took pain pills and felt like crap. Before that period there was a time last Xmas where I couldnt do anything for over a month it was so bad. I went to the ER many times thinking it was cysts and they did internal ultrasounds and found nothing. They said it could be pain from PCOS, pain from crowding or IC and Endo. Unless a lap is my last option right now I am opting not to have one. Too scared of being put under I guess. Also have heard even if they remove the endo a lot of times it comes back so I figured if I can get by with pain pills (when I actually take Vikodin I can live with the pain although it still hurts and the Drs wont give it to me I had to take what I had left from my wisdom teeth pain!)

SnowFlower · 02-16-2006, 04:34 AM

Also not doing any treatment. I havent even had a chance to talk to any of my new Drs about the pelvic pain. My old Dr gave me Naproxen and something else for pain which I had to take a ton and still just laid in bed all day with a heating pad

Stacie M · 02-16-2006, 07:24 AM

Quote:

Originally Posted by KimberlyHeidi

Also not doing any treatment. I havent even had a chance to talk to any of my new Drs about the pelvic pain. My old Dr gave me Naproxen and something else for pain which I had to take a ton and still just laid in bed all day with a heating pad

(((HUGS))) I hate to hear your pain is so bad. Hopefully it will start easing up, and maybe your new doctor can prescribe something more effective.

Good luck!
Stacie M

ABumpyGal · 02-16-2006, 02:29 PM

I don't want to derail your thread Stacie, but with all of this talk of laps and such I can't keep my mouth shut!

I was also scared to death when I had my first and only lap. Scared. To. DEATH!!! I had never been under anesthesia and I was afraid of what I might experience. I was so desperate by then to do something about my pain and symptoms though. I took the plunge and I'm now oh so glad I did! My procedure was amazingly easy. Getting my wisdom teeth pulled was more difficult IMHO. While I didn't have massive amounts of Endo or adhesions removed, I did have some, and I recovered completely in a week. It relieved my symptoms for about five years. The only lasting complication I experienced is a "pulling" sensation in the main (bellybutton) incision when I lost a lot of weight or do a lot of work on my abdominal muscles. No biggie, though.

The only reason I'm putting off my second lap is because the more often they go in, the more risk you have for adhesions. Now that's something I could live without! I know they'll have to go back in some day, I just want to put it off as long as possible to minimize how many times they go in over my lifetime; to minimize that internal scarring.

Didn't want anyone thinking that my lap was scary or anything! It really wasn't, and I'm a medical wuss

Dana

Stacie M · 02-17-2006, 02:01 AM

Quote:

Originally Posted by ABumpyGal

I don't want to derail your thread Stacie, but with all of this talk of laps and such I can't keep my mouth shut!

I was also scared to death when I had my first and only lap. Scared. To. DEATH!!! I had never been under anesthesia and I was afraid of what I might experience. I was so desperate by then to do something about my pain and symptoms though. I took the plunge and I'm now oh so glad I did! My procedure was amazingly easy. Getting my wisdom teeth pulled was more difficult IMHO. While I didn't have massive amounts of Endo or adhesions removed, I did have some, and I recovered completely in a week. It relieved my symptoms for about five years. The only lasting complication I experienced is a "pulling" sensation in the main (bellybutton) incision when I lost a lot of weight or do a lot of work on my abdominal muscles. No biggie, though.

The only reason I'm putting off my second lap is because the more often they go in, the more risk you have for adhesions. Now that's something I could live without! I know they'll have to go back in some day, I just want to put it off as long as possible to minimize how many times they go in over my lifetime; to minimize that internal scarring.

Didn't want anyone thinking that my lap was scary or anything! It really wasn't, and I'm a medical wuss

Dana

Oh, don't worry, you aren't derailing anything! I know that before I had my gallbladder taken out, I was completely terrified. I had been under before, but it had been years (when I was about 7 years old). I couldn't remember much about the other surgeries I had had (tonsillectomy and eardrum repair), so I didn't really know what to expect. Other than a nasty (puking!) reaction to some pain medicine, it went really well. I couldn't believe that it wasn't as scary as I expected.

Stacie M