IC & Endo - is there a link?

[tjackson]

I have just been diagnosed with IC, during a lap for stage 3 endo. My gyn noticed that my bladder was inflammed while removing adhesions, decided to look inside my bladder and made the diagnosis.

I am amazed at how many of us seem to have both IC and Endo. Does anyone have the statistical figures on this?

I know that endo causes a toxic environment and that recent studies have shown that women with IC have a certain toxin in thier urine - is there a connection here? Does anyone know if this has been explored?

If you have IC and Endo, please give a quick "yes" reply just to satisfy my curiosity. And please comment further if you know about any of the above questions.

Perplexed, :hmm:
Tish

[Katrina]

Yes!
[icnmgrjill] Dr. Kahn, one of things that patients ask about all the time is if there is a relationship between IC and endometriosis. Could you please give us your thoughts on this?? Let me qualify that by saying that some patients feel that their endometriosis may have contributed to the onset of their IC, while others have been mistakenly diagnosed with endometriosis only to discover that they had IC instead. Talk about confusing. Your thoughts?

[DrBruceKahn] I think the relationship between endometriosis and IC is pain. I further believe these syndromes are different manifestations of the same problem - visceral pain.

Endometriosis is a painful syndrome diagnosed mostly by gynecologists that includes symptoms of cyclic pelvic pain related to the menstrual cycle, pain with intercourse, and the presence of endometrial tissue outside of the uterus - on the lining of the pelvis, on the ovaries or fallopian tubes. Endometrial tissue is usually found only on the inside lining of the uterus. The presence of this tissue type outside the uterine lining is what "defines" endometriosis.

Many gynecologists currently think the only way to correctly diagnose endometriosis is through laparoscopic surgery. The problem with this model is that many women with severe endometriosis have NO pain whereas women with very little endometriosis can have severe pain. Yes, the treatments for endometriosis do work. But perhaps they work in ways we do not yet understand… I personally doubt that the endometrial implants in the pelvis are the cause of pain. I think pain is the problem. Pain can be manipulated with hormones or with surgical treatments. I usually favor medical therapy over a surgical approach to chronic pain.

IC is "defined" as the presence of abnormalities in the bladder wall that can be seen during cystoscopy. Many urologists feel that the only way to diagnose IC is through cystoscopy with hydro-distension. However if the diagnosis of IC is restricted to women with surgical evidence of disease, then a lot of women with IC will be missed. I think that this model of IC has the same problems as the model for endometriosis described above.

Personally, I believe that the findings that gynecologists observe in the pelvis at surgery (endometrial implants) are about as significant as the findings of urologists at cystoscopy (petechial hemorrhages) for IC. In other words, I don't think that they really matter. What matters is the PAIN. These women feel pain. The pain is visceral pain - pain that is mediated through the nerves of the visceral (abdominal) organs


http://www.ic-network.com/guestlectures/kahn.html

Has a link been studies...yes....and still is....some docs call them the evil twins. I don't know if you will get a lot of replies but I know I know so many ICers with Endo that I couldn't count and that many people have endo without knowing it.

[1tuffcookie]

Hi Tish,
Yes, there are many women with both endo and IC! (I'm one!) I'm currently working on an article about it for the Endometriosis Association. I recently interviewed Dr. Vicki Ratner, head of the Interstitial Cystitis Association. She said the research is lagging behind what we know--that many women have both. But she also stated that there are several large studies underway right now that are looking at this issue. There are stats on how many women have both, but they vary. For example, one small 2002 (15 women) study found 67% had both. A larger study on 60 women w as done by Dr. Maurice Chung in 2002. It was widely reported on, and he calls IC and endo "evil twins." He says 70-90% have BOTH endo and IC. Of his 60 patients, 56 had endo, and 58 had IC. Fifty-four of the 56 patients with endo also had IC. Dr. Chung said the overlap in his group was a bit higher than the 40-70% reported by other investigators.

About the toxin you mentioned--I don't know of any connection there. However, there is another link between endo and IC that's fairly recent: mast cells. It's been known for a while that some studies have shown many ''activated'' mast cells in IC bladders. When they're activated, they dump out irritating substances like histamine. The more recent finding was in Boston at Tufts University. Dr. Theoharides and colleagues found mast cells IN ENDOMETRIOSIS IMPLANTS. They are doing a follow-up study, he told me. Anyway, it's a very fascinating area. I'd better go now, because I need to work on my article!!

Andrea

[tjackson]

I went and read the link to the article Katrina posted and really, it doesn't make a lot of sense to me. Specifically:

[DrBruceKahn] I think the relationship between endometriosis and IC is pain. I further believe these syndromes are different manifestations of the same problem - visceral pain.

So is he saying that the nerves feel pain, and therefore "cause" these diseases to develop??? It sounds a bit Eastern rather than Western medicine, and I'm not completely opposed to that. But it seems like putting the cart before the horse - the pain causes the disease which therein causes more pain. :hmm: umm.... So the initial/"head domino" pain or nerve sensitivity came from where? An injury from my past, which caused a manifestation of both IC and endo.... I'm having a hard time buying that.

I am interested in the toxicity that endometriosis creates and if it could contribute to the onset of IC.

I am still interested in the statistical figures of women with Endo who have IC, and conversly the number of women with IC who also have Endo.

:hmm: :idea: :hmm:
Tish

[redmowii]

I just wanted you to know. I have both endometriosis and IC and am just as lost as everyone else. Don't have any new info. Just a poor little lost soul. Thanks for asking the question, because now some of my questions are right in front of me.
Redmowii

[1tuffcookie]

I wish I had better answers for you.But there just aren't very many studies on endo/IC, and the ones out there are small. I already mentioned the best studies. I think many of us would like to know how many women have endo and IC! I take comfort in the fact that several large studies are underway right now that will give us some answers. You seem interested in which comes first, the endo or IC. Alagiri et al. did a large study (2, 682 IC patients) in 1997 that found those patients got endo FIRST, and then got IC. So you may be right that something about endo makes us susceptible to IC. Both endo and IC patients have immune system abnormalities, which I think is fascinating, too. Alagiri et al. also found the rate of endo in the ICers was about the same as in the general population of women. I think that's because endo still takes a long time to get diagnosed--some studies say up to 9 years!! Isn't that ridiculous?? It really hacks me off. Anyway, Alagiri et al. also found that more than twice the number of women diagnosed with endo were symptomatic of endo. How are your endo symptoms now? Are you feeling okay?

Andrea

[1tuffcookie]

P.S,

Another thing about Alagiri et al.'s study--it showed that ICers get many other conditions more than the general public, such as lupus, allergies, inflammatory bowel diseases, etc. Women with endo also get some of these more than the general public.

Another problem with diagnosis: I'm sure you know, the symptoms of endo and IC can be identical. I think if a woman has pelvic pain and they're going to do a laparoscopy, they should do a cystoscopy at the same time to check for IC. That's what the researchers recommend, too.

I know what you mean about Dr. Kahn's comments. They are rather unclear. But I think he's right that the endo implants are not what causes the pain in endo--otherwise, why are there some women with horrendously severe endo with no pain?

[tjackson]

Thanks everyone for taking the time to reply. The "evil twins" are an enigma I guess, but it just seems obvious to me that there has to be a link. I'm glad to hear of these studies. Perhaps they will draw research attention, and perphaps advancement toward cures. I hope I hope I hope.

It's hard to say how my endo is at this point, as I only had surgery 4 weeks ago. The surgery took 3.5 hours, I lost 60% of an ovary, had a huge pear-sized cyst removed, my appendix was covered in endo and also removed, and tons of endo removed from everywhere (bladder, bowel, outer uterus, abdominal wall). I have had one period since, and I did cramp a lot, which was disappointing. I start Lupron next week, so no more periods for a while. This is my first go with Lupron, and I'm a bit apprehensive. Rimso treatments begin the same day.

I was in a lot of pain last week, which progressively got worse over 4 days or so. I called and went back to my gyn, and he thinks I either have an infection or it (the surgery) caused an IC flare. So he put me on an antibiotic and Neurontin, to cover both bases.

And btw, while doing my lap, when he diagnosed the IC, he did do the cystoscopy and a distention, since I was under anesthesia already. My doc seems to be on the ball with both conditions.

Thanks again, to all who have replied,
Tish

[rhea]

Yes! I had (say had cause had a TAH in 01) endo and IC. Katrina thanks for the article. Very interesting.

[holles]

my gyn told me both are auto-immune and are related. i also have graves disease which is another auto-immune disease. apparently, if you have one auto-immune disease, you likely have another.

my doc thinks they're connected. the endo was dx first. IC developed while on lupron to treat endo after my first surgery to remove endo.