June 13, 2011 11:30 AM Subscribe
Just diagnosed with endometriosis. Seeking information, experiences, and advice (about one aspect in particular, but I'll take any you have to give.)
posted by anonymous to health & fitness (8 answers total) 5 users marked this as a favorite
Long story short, I had an ultrasound to check for fibroids last week and instead they found what appears to be a 5cm endometrioma (i.e., a "chocolate cyst" - surprisingly not as delicious as it sounds!) on my left ovary.
I subsequently visited a gynecologist, who told me that the cyst is just barely at the point where she'd like to remove it via laparascopy. But just in case it's not actually an endometrioma (surgery is the only way to definitively determine the nature of the cyst and the presence and severity of endometriosis), we made the following tentative plan: insert a Mirena IUD after my next period ends, do another ultrasound in a few months, and see if the cyst has gotten any smaller. If not, I'll get surgery.
I was feeling pretty good about this plan, but I had a conversation yesterday with a friend's mom which really freaked me out. She has endometriosis and had surgery for it around 27 years ago. She said, quite vehemently, that once there is good reason to suspect endometriosis, it would be foolish to make any decisions at all about treatment before obtaining an immediate laparoscopy to determine its status.
My friend's mom is not a doctor and did not even know what an IUD was, and if a few months of delaying surgery might actually have huge repercussions for my fertility I am sure my doctor would not have recommended it. However, it does make sense that I should have all the available information before making any decisions, and honestly, I have no trouble being skeptical of a doctor's decision-making.*
I would love to hear input from those who also suffer from endometriosis - how did they find it? What did you do about it? How are you doing now? In addition, do you think this Mirena business is a good plan, or should I push for surgery? I am 27 and not wanting babies for at least five years. I'm also female, btw.
*Optional Supplementary Information: The aforementioned wariness is based on my own experiences and those of my loved ones. I have suffered from horrendously painful, debilitating periods approximately every 23 days since age 12. Whenever I've shared this with a doctor/medical professional - and I've shared it with at least a dozen over the years - they've been utterly dismissive. The few times I summoned up the courage to explicitly ask if there was anything to be done, they shrugged and recommended acupuncture. I didn't even know that an ultrasound was an option until three weeks ago when I visited a second doctor in as many months because I was concerned about my recent unusually heavy periods. She (prior to the gynecologist, obviously) recommended the Mirena, and gave me the option of an ultrasound to check for fibroids, if I happened to be "the type of person who likes to know what's going on."
I've found that these kinds of experiences are pretty common among women with gynecological disorders. While I do, of course, acknowledge the superior knowledge and experience of medical professionals, a lifetime of this kind of treatment creates an almost adversarial relationship between doctor and patient. This is all to say that it's not out of the realm of possibility to me that by taking her sweet time to operate, my gyno is not taking me seriously and may be screwing my uterus, just like nearly every other doctor I've seen.