help me quell my ladyguts
January 23, 2012 8:42 AM   Subscribe

I have interstitial cystitis and my doctor thinks I might have endometriosis. Should I have a laparoscopy?

I have interstitial cystitis (glomerulations verified with hydro/cysto). I have all the usual IC symptoms: pain (a rainbow! of pain!), frequency - my all time high was 70, mostly I'm around 20-30 now, urgency, puss in my urine all the time. These symptoms get really bad around ovulation and my period. My IC has gotten much worse in the last couple of years, ever since I went off birth control.

I've always had really bad periods (heavy flow, bad cramps), and throughout my cycle I have nausea, diarrhea, bloating, pelvic pain, and general exhaustion (I'm having trouble keeping it together at work). About 4 months ago, I was sick for a week, the worst back and side pain of my life, major IC flare, vomiting, not able to get out of bed. It felt like a kidney infection, but the tests were negative. I didn't pass a kidney stone, nor did I get the immediate relief of passing a stone. Since then, I've had issues with tingling and pain in my left side. I can't tell if it's my kidney or my ovary or something else. My urologist didn't investigate further, so I have no idea what made me so sick. I'd let it go, but I'm still having symptoms.

I decided to pursue the gynecological angle and ask about endometriosis and cysts. I explained my history and symptoms to my gynecologist, and she thought it might be endometriosis, and she ordered a sonogram and gave me a prescription for norethindrone. She said the only way to verify diagnosis was to have a lap, but she said that we could try different hormone therapies first to see if they helped. I'm hesitant to take hormones; they make me moody and even more exhausted, and they have lots of gross side effects.

While waiting for the sonogram appointment, I realized that I wanted some answers, and that I didn't want to just take hormones forever without any proof, so I decided to talk to her about the lap.

During the sonogram, she found an ovarian cyst on my left side (could explain the tingling/nausea/etc) and a smallish fibroid (could explain the cramps/bleeding--though I've always had bad periods). The doctor said that I could do the lap or take hormones; it was my choice.

Fibroids and cysts are fairly common and benign; lots of people have them. My doc can remove the fibroid and the cyst during the lap, which will probably make me feel better, but they can come back. The lap may not help; they might not find anything. The might find endometriosis and not be able to remove it. Like any surgery, it's risky and expensive.

I had the same feeling before my hydro, and it was really good/sad for me to get the diagnosis and see what was torturing me so much. I'm glad I did it so I was able to get proper treatment. I had symptoms of IC for 10 years before I was officially diagnosed. I don't want the same thing to happen with endo. A decent percentage of folks with IC actually have endo (or a combination), so it would be good to rule it out, at least.

Also, the hydro set off an 8 month mega flare; I'm scared the lap will irritate my bladder.

I feel like I am diagnosing myself, but all the doctors I see seem so hurried and reluctant. I don't know if I'm being my own advocate or a hypochondriac. The surgery scheduler mentioned something about the surgery being "at the request of the patient." what does that even mean? When I said that I wanted to do surgery, the doctor agreed that it was a good bet...but the surgery scheduler's comment upset me.

I also wonder if this is just me flailing against having IC. I want to be able to wear pants and eat normal foods, but that's probably never going to happen and I need to get over it.

Should I do the lap?
posted by hotelechozulu to Health & Fitness (10 answers total) 3 users marked this as a favorite
For the IC, you should go see a competent Chinese herbalist. You have nothing to lose and everything to gain. Or a homeopath. Seek alternative cures for this debilitating yet nebulous condition.

I had endometriosis and a laparoscopy. I was diagnosed via sonogram. I do not understand your situation. Either the surgeons go in via a laparoscopy and laser out the cysts, or.... What? They're just going to take a peek? This doesn't make sense. Surgery is serious! You don't order it like a pizza!

You seem to be in a lot of pain and your issues are undiagnosed. New doctors. You need a second or third opinion stat!
posted by jbenben at 8:56 AM on January 23, 2012

I had endo surgery after seeing probably 3? Maybe 4? different Ob/Gyns, a gastroenterologst...on and on.

If you're going to have it, find a surgeon who does them very frequently, possibly someone who specializes in endometriosis. You want someone as experienced as possible and someone who is up on new surgical techniques in order to minimize complications, adhesions, etc. I went to someone who pretty much only does these surgeries and on Day 1 after the surgery I felt a million times better than I did pre-surgery! And that's with a bunch of incisions!

I also had urinary frequency/bladder issues which were solved by the surgery. Turns out I had endometrium on my bladder and nearly completely blocking one of my ureters (among other things.)

Good luck.
posted by the young rope-rider at 9:42 AM on January 23, 2012

I had a lap for an ovarian cyst, and the doc was surprised to find extensive endometriosis. Had I been prepped properly, she could have zapped most of it off (some of it was stuck to the bowel, and due to contamination worries, you need to do a total cleanse of some kind before surgery). Endo is like little pieces of sticky glue scattered all around in your abdomen; one of my ovaries was stuck to a fallopian tube, for instance. I felt a lot better after I healed up from the surgery, but I also did start taking a low-hormone BC pill which helps the cysts not grow and calms the endo, somehow. (Have you tried LoEstrin?)
Also: The decision whether or not to have surgery came down to my gyno asking me, "how much pain are you in? Is it tolerable, or is it affecting your day-to-day life?" For me, the answer was the latter, so I had the surgery.
posted by chowflap at 9:50 AM on January 23, 2012 [1 favorite]

It is at the request of the patient due to malpractice risk. Any uterine surgery (lap) can produce adhesions and any surgery CAN impair fertility. They want you to go in and make with a conscious mind that you understand this risk.

I was in so much pain, on birth control, and I couldn't take it anymore. Talked with my ob and then went to our RE to see what to do/chances IF I wanted a 2nd child.

They both agreed that unless I was on the floor dying in pain daily, to put it off if I wanted a 2nd child. So I got off birth control instead (I was going to switch from LoEstrin; it wasn't doing it for me). Pain stopped even though it's supposed to control the endo flare ups. Flip side--baby #2 is a less than 1% chance for me due to diminished ovarian reserve. That news makes the decision for surgery easier.

It seems you are pretty aware of the facts about lap and endo. The other choice is Lupron but to me, I rather go on another birth control than Lupron. Stuff seems nasty.

Good luck and sorry you're in pain. Endo sucks.
posted by stormpooper at 10:15 AM on January 23, 2012

More anecdata: I had the lap for endo, too, to diagnose (they didn't see anything with an ultrasound), which I had to decide to do. It turned out to be a great decision - not only was I conclusively diagnosed, my surgeon was able to remove all of the endo while she was in there, and I've seen a dramatic reduction in pain. That said, I'm in Canada and didn't have to worry about paying for any of it, which obviously made it much easier to decide to have surgery.

The other thing to consider is that you may have to take hormones anyways...My surgeon told me that generally (and obviously this is very general, since there's not a lot of good data out there about endo) if you don't go on the pill, you'll have to have surgery again in a year or so, whereas if you do, you can go for quite a bit longer (5 years or so). I went off the pill last year for about 5 months, just to see what would happen (I'm really resistant to being on hormones, too - I actually hate it, but I hate not being able to function because of menstrual pain more), and I did really start to notice an increase in pain, so went back on again. I'm nearly four years post-op and would say that I haven't noticed much increase in pain since shortly after the surgery.

Good luck with whatever you decide. Sounds awful with the combo of things you're having to deal with.
posted by sabotagerabbit at 10:21 AM on January 23, 2012

I had similar symptoms for years, and doctors suspected endo but no ultrasounds confirmed it. Finally I opted to have my ovaries removed to reduce a genetic cancer risk (at the recommendation of geneticists). When the doc went in with the lap scope to get the ovaries, he found "extensive" endo. So there's one more anecdotal point suggesting that a lap is the definitive diagnosis.

For what it's worth, the oophorectomy was an outpatient surgery, although it required general anesthesia. Although the surgeon didn't do an extensive endo cleanup, by taking out the estrogen-engines, he stopped the stimulation, and my life improved a bajillion percent.

I had the surgery in my early 40s when I was already veering into menopause. Because my ovaries were already checking out, the instant menopause that resulted from the surgery was less dramatic than it would have been when I was younger. Of course, I face the problems associated with menopause, such as possibly decreased bone density, but the decreased cancer risk and relief of endo symptoms outweigh this for me.
posted by ceiba at 11:01 AM on January 23, 2012

Personal experience: I don't have the IC problem, but I've been through the thousands of dollars worth of researching and scans/tests/ultrasounds for trying to help my tummy issues combined with menstrual issues. Was literally unable to eat a single bite of food without getting sick, was balled up in the fetal position during my period, all of that crap for 3 years plus. Last year I had the lap done, after my original gyno said there was NO endo present and basically said to me "I can't help you, this is GI related" which, of course, was already ruled out. My current gyno listened and wanted the lap surgery done, found both endo and a benign cyst, both of which were attached to areas of my outer colon. Insurance paid for the majority of the surgery (FWIW, I live in the US and have pretty bad insurance coverage, I was shocked!) and the Lupron shot has not bothered me in the least with the exception of an occasional hot flash. I was on NuvaRing for about 5 years until the time of surgery, and intend to be back on it after the Lupron shots are through.
Long story short..I recommend it. I don't have the same conditions nor the same area of experience as yourself...but the lap surgery has made my life liveable again. I wish you the best of luck in whatever route you choose, hopefully it's solved soon!
posted by PeppahCat at 8:36 PM on January 23, 2012

I just want to toss in a word for the BC option. I suffered, for years, with horrible horrible (horrible!!) periods. Ridiculous flow, vomiting, nausea, agony -- all the stuff you describe. Barely able to function one week out of the month, etc. My doctor also wanted to do BC before doing the lap thing for suspected endometriosis.

I tried two different BC options before hitting on number three (microgestin FE 1/20), which was like a miracle. The difference is just life changing. The first two BC options I tried were, yeah, totally sucky, but man, has it ever been worth it to finally find the third one that does work for me. Obviously YMMV, but I was only doing the BC to get it out of the way, since my doctor was insisting and I'd had no luck with it previously, but now my life is so much better! I urge you not to write it off unnecessarily. Especially since, as others have mentioned, I think you need to have fairly regular surgeries to keep the endo at bay without hormones.
posted by Arethusa at 5:16 AM on January 24, 2012

From a physician's perspective, we don't like to do tests (especially invasive or expensive ones) just to find out what's there if it is not going to change our treatment plans. This is why not everyone who has back pain or a knee injury gets an MRI. Because in most cases, you just give it some time, rest, and pain medicine, and it heals up. So as much as people want to know 'what's going on', sometimes it just doesn't make sense to find out. Plus, when you do more tests, you tend to find more incidental things that can result in further unnecessary procedures (or cause complications that result in more medicines/procedures/etc).

So what I would suggest is talking to your doctor about how the lap is going to change treatment. If the lap is done and endo is not found.... are there other options you're going to have aside from hormones? If the lap is done and endo is found... are you still just going to end up taking hormones? Given that you might find a hormone that, like Arethusa's, would make a big difference without causing side effects, would it make sense to try that before resorting to something that could have major complications, stuff that would be a lot more serious than moodiness? Those are the questions I would consider. Sounds like you are doing a good job of thinking this though so far, though.
posted by treehorn+bunny at 6:59 PM on January 24, 2012

Follow up:

I had the laparoscopy a few weeks ago and I'm really glad I did it. I had endometriosis in 5 places in my abdomen and adhesions behind my uterus. She found endometriosis on my bladder, which was probably contributing to my bladder pain and frequency. My gynecologist was able to excise what she could and it has already helped my pain level tremendously. I'm not cured, but I no longer have the stabbing side pain. My doctor said that I would probably need to have surgery again with any future flare ups and I would need to see a fertility specialist when I decide to get pregnant.

I'm trying out norethindrone--it's making my IC flare quite a bit, so I may move to Lupron shots in a few months. I would not have committed to Lupron shots without an official (surgical) diagnosis--the side effects are life changing. Yes, the official diagnosis didn't change my hormone treatment much--I'm still taking the norethindrone she prescribed before surgery--but the surgery was able to knock it down. The only way to get rid of endometriosis is to cut it out and prevent new growths.

It was really helpful for me to get an official diagnosis for something that was greatly impeding my quality of life. There's a lot of value in that. I've been suffering with this for about 20 years.
posted by hotelechozulu at 9:08 AM on March 19, 2012 [1 favorite]

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