Is a medical system fair if you have to be proactive and intelligent in order to get better care?
When I called my doc's office a few weeks ago to describe my symptoms, I had a good guess about what the problem was - endometriosis and endometrial ovarian cysts.
For those of you who don't know, endometriosis occurs when the cells that line the uterus grow outside the uterus too. The cells grow and shrink in unison with a woman's menstrual cycle and unlike the cells that grow inside the uterus that get shed each month when a woman doesn't get pregnant, the cells that grow in the wrong place have nowhere to go. Women with endo essentially bleed internally each month. The cells can grow anywhere in the pelvis and often attach to the ovaries, outside of the uterus, on the bladder, bowels, and sometimes even higher up in the lungs. It's really nasty stuff but usually is not cancerous. It is, however, graded like cancer to describe its severity. So, someone could have stage 3 or stage 4 endo. Severity of symptoms is not correlated with severity of endo. It causes pain and cramping (more than the usual menstrual cramps that women get), diarrhea, pain with intercourse, fatigue, and infertility. Not all women who have endo have symptoms.
I do. And - it sucks.
After speaking with my doc's nurse, I got orders to go get "monkey wanded" in the language of the iVillage discussion group I've been reading. That means I get to lay down in a dark room half naked while an ultrasound technician moves a gizmo around in my vagina that looks more like something you'd see in a sex toy shop. She showed me the 7x6x5 cm cyst on my left ovary and pointed out that my uterus is seriously catawampus. It's supposed to be pointed up at about 11 o'clock and straight. Mine is C shaped with the top part of the C pointed at about 4 o'clock. This kind of retroverted uterus is common in women who have endo. The uterus can get mishapen due to adhesions of endo scar tissue that attach the uterus to something else.
I got sent to a specialist the very next day who told me absolutely nothing new. That's because I had already researched my options - go on drugs that put me into early menopause with all of the well-known side effects or have a surgery, either laparoscopic or a laparotomy. Another option is to go on birth control pills or get pregnant because both make the endometrial tissue regress.
All of these are temporary solutions because there is no cure for endometriosis - not even a total hysterectomy and removal of both ovaries will make it go away forever. The only solution is to have all of the endometrial tissue surgically excised - removed completely, down to every last microscopic cell, which is of course, impossible in practice. Getting pregnant or taking drugs to stop ovulation only holds the growth of endo at bay. Surgical removal of the endo results in good prognosis for pain management and fertility. Women with moderate to severe endo (stage 3 or 4), have a 40% better chance of getting pregnant in the year after the surgery compared with not having one.
She wanted me to go on the menopause drugs. No thanks. I'd like to keep trying to get pregnant. Having the surgery may be my only way to achieve that. Besides, going on drugs just postpones that and doesn't remove the endo. I want the surgery I told her.
Then she told me that it would have to be a laparotomy due to the size of my cyst. That would mean a sizable incision and at least 6 weeks recovery time. I told her I want to have the surgery done laparoscopically and explained my situation with needing to finish my dissertation in the next three months. I don't have time for a laparotomy - especially when it could be taken care of laparoscopically, a procedure with a one week recovery and fewer risks. Plus, through my research I found out that the success of surgery is completely dependent on the skill of the surgeon and his/her experience in recognizing endometriosis. If someone was going to open me up to scrape out the junk, I sure don't want a small town hack doing the job.
I insisted on a laparoscopic approach. She called Seattle Reproductive Medicine and got me hooked up with a surgeon who is experienced at laparoscopic surgery for this problem. My surgery will happen in February a few days before my birthday. It will be an outpatient procedure and I should be able to go home the same day.
The only reason I am having the better procedure in more experienced hands is because I was proactive enough to research the options, smart enough to comprehend the medical terminology and weigh it, and confident enough to assert my choice. If it hadn't been for that, I'd be having a laparotomy in Walla Walla.
I am very fortunate to know enough to insist on going elsewhere for medical care - and - am even more fortunate to be able to go to an expert in Seattle and have insurance that will cover 80% of the cost of the procedure. Not everyone is so fortunate.