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?
posted by hotelechozulu to health & fitness (10 answers total) 2 users marked this as a favorite
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?