Endometriosis referral: Seattle edition
August 12, 2014 1:43 AM   Subscribe

After years of chronic pelvic pain from fibroids, cysts and likely endometriosis, I've reached my breaking point. The UWMC clinics refuse to even consider surgery for any of the above and are prescribing Lupron as my next option (after 2 IUDs, Lunelle, Depo, and The Pill) for probable endometriosis. Help me find a Seattle OB/GYN who will do the surgery!

My story is much like those of previous MetaFilter questions. I had severe bleeding from my fibroids, and was given the Mirena IUD. I'm on my second now, and the bleeding is better. The down side is that the IUD is associated with the increased production of fibroids and cysts, so round and round and round we go.

I've tried many treatment options over the years: Lunelle, Depo and most recently The Pill in combination with the Mirena IUD. The pain has only gotten worse. My ultrasound from last week shows 3 likely endometriomas on my left ovary (all small), nearly a dozen small fibroids, and a significantly enlarged uterus (300cc instead of my normal 200cc). And note that most endometriosis isn't seen on an ultrasound, so I have no idea how bad that is.

My PCP understands my years of suffering and has prescribed me pain meds. Even on 10mg of oxycodone, I'm still experiencing significant pain. I am unable to sleep more than a couple of hours, am nauseous and vomiting, and have started feeling woozy (<< technical term). With these symptoms and that ultrasound, I thought I was the perfect candidate for surgery.

I was wrong.

The OB/GYN I saw for the first time this morning prescribed Lupron -- which basically seems like the worst drug EVER. She didn't bat an eye about prescribing it, and didn't share any of the horrific side effects. After another sleepless night of internet searching, I'm terrified to take this drug. But she said that treatment for endometriosis is no longer about surgery but hormonal treatments (none of the previous ones helped.)

How can I find a doctor who is willing to at least do an exploratory surgery to find out what the heck is causing my pain? The OB/GYN put in a referral to a pain clinic, and I'm grateful for possible short-term relief, but ... um ... can we cut out the fibroids, cysts and endometriomas and give me a blank slate? Or is that completely unrealistic?
posted by frizz to Health & Fitness (6 answers total) 3 users marked this as a favorite
Dr. Roger Shelton in Edmonds is the local specialist that people travel states to see. He looked after me for a really long time, including the return of my endo after a hysterectomy (!!!). Mine was stage IV. On my lungs!

I went to a couple OB/GYN clinics down town and they were more than willing to do exploratory surgery! But they were not very confidence inspiring and they were really crowded. Dr. Shelton was old school and the biggest expert in the land. His colleague, Dr. Lau, was kind of a jerk. If he has retired (he said he might), the Seattle Endo Support Group has a list of local and national docs. I lived in Portland when I saw my national specialist. Totally worth it. I know Dr. Redwine in Bend, OR is though to be a specialist as well - he was my second choice.

Though it's not your question, Lupron is considered the first line of treatment. The sequence is often ultrasound to see endo ----> Lupron ----> THEN a scope + surgical ablation of remaining endo (because there will be less to remove after you do Lupron, thus less pelvic adhesions as a result of removal). Lupron almost killed me because of a crazy adverse reaction, but that's obviously not typical or it wouldn't be on the market; I had a freak experience. Most people with endo do a lot better than usual. Surgery is a lot more risky than medication! If you're skittish, my advice for a first dose of Lupron is as little as you can get -- a month, maybe (because once you get a shot, there's no taking it back). It is highly unlikely you'll find a doctor willing to do surgery and ablations (thus permanent scarring and adhesions, not to mention general anesthesia) before you have tried the more conservative medical route. When you cut things out it leaves permanent nerve pain - I know too well; I have it. Reducing endometriosis with medication before doing surgery makes a lot of sense. I know it sucks. Six hours after my hysterectomy, at age 28, I stood up to talk to my surgeon, because she wanted me up and moving. She said, marveling, she had never seen me stand up so straight because of all the pelvic pain.

If you need a referral for a great general practitioner or gyn, memail me. I hate to hear about anybody else dealing with this crap. There totally are doctors willing to treat this aggressively, but you probably will have to do the hoop jump with trying Lupron unless you have a compelling reason why not. It is strong medicine for a very serious disease. It's there for a reason and will spare you more of this horrid pain. My own hysterectomy was the best decision I ever made. Memail any old time. Go to the best doctor you can.
posted by sweltering at 4:56 AM on August 12, 2014 [5 favorites]

An internist or gyn who is an excellent diagnostician is also called for here. Memail me if you want my team on it. I have some great doctors
posted by sweltering at 5:03 AM on August 12, 2014

Dr. Kathryn Arendt of Washington Urology and Gyne-urologic associates in kirkland. She is absolutely the best and will not hesitate if you need it.
posted by ramix at 6:37 AM on August 12, 2014 [1 favorite]

Dr. Lauren Pray at Northwest Women's Healthcare was great when I developed endo (like, light years better than any other gyn I had gone to). Feel free to memail me if you want more info!
posted by Blue Jello Elf at 6:50 AM on August 12, 2014 [1 favorite]

Unfortunately I don't live in Seattle and so I can't directly answer your question, but I did want to confirm that, for some doctors, getting exploratory surgery to diagnose endometriosis is not an unusual, drastic, last-choice tactic. I had been suffering with what turned out to be endo pain for about fifteen years, but when I had to stop taking birth control pills in my mid-20s (I started to get migraines, and there is a stroke risk issue) the pain became unendurable. After almost two decades of having my pain be dismissed by PCPs, OB/GYNs, and an endocrinologist (including, literally, my last OB throwing up her hands in the air and saying, "I don't know what to do with you!"), I finally demanded a referral to see a specialist.

The good news is, though, that after one appointment with the specialist, I had my surgery scheduled for less than a month later. No IUDs, no shots, no Lupron, no birth control pills -- as my surgeon explained to me, the only way to know what is causing the pain is to go in and look. (I also have a family history, and apparently a description of my pain, that was very suggestive of endo.)

Three things, I think, contributed to my doctor's willingness to get right to it. First, she is also a researcher, and contrary to what your OB/GYN said this morning, she said that surgery is becoming more, not less, recommended for endo diagnosis and treatment. Second, she works in a fertility clinic, where I generally think treatment plans are much more aggressive given that most patients are working on a timescale. Third, and probably most important, is that my doctor has clinical expertise in laparoscopic surgery and does it regularly. It sounds silly to say, but if you want surgery, you need a (practicing, experienced) surgeon.

If you can find someone who fits that profile in Seattle (maybe at a major research hospital or medical school?), and can see them directly without messing around with any more PCPs or general OBs, you might have better luck.

Apologies if this is unhelpful, obvious, or redundant advice. I am at home recovering from my surgery, and I just wanted to commiserate and let you know that what you want is possible!
posted by CtrlAltDelete at 12:33 PM on August 12, 2014 [1 favorite]

Friends who have pursued surgical options over Lupron, for various reasons, have had wonderful experiences with Dr Andrew Cook here in the Bay Area. Perhaps a call to his office would yield recommendations for practitioners with similar approaches?
posted by judith at 7:41 AM on August 13, 2014

« Older Insurance question about out of pocket cost for...   |   Boyfriend anger, one time occurrence? what to do... Newer »
This thread is closed to new comments.