I traveled to Boston yesterday to meet with Dr. Aaron Styer, a gynecologist who specialises in ednocrinology and issues like endometriosis. He's great about giving me a lot of information, letting me see images, and letting me know what he thinks the pros and cons are of my options.
I've been on Synarel for about 3 months and having a lot of side effects. At the beginning, I was getting chest pain and other pains around my body. I have insomnia and can't sleep without a sleeping pill. I get hot flashes and night sweats. He said that it's working - things look like they are improving according the MRI. But, if I don't stay on the medication then things will just get worse again.
I am a complicated case. Estrogen in birth control medications gives me migraines. I don't do so well on progesterone either. I've only had symptoms since January 2010. I started going to the ER with horrible pain in my side. Sex was painful, and it was painful to deficate. In April or May, I had surgery. Dr. Styer took out fibriods and ovarian cysts and confirmed his diagonosis of endometriosis. He told me that I don't have an ovary on my right side and that it was probably twisted as a young child or maybe even in utero.
I was fine for awhile. But then February of this year, I started having pain again. It got bad fast again. Same symptoms as before. I tried a progesterone only birth control which gave me side effects and made things worse. Now I have hematosalpinx, which translates to blood snake. Apparently my fallopian tube and ovary have attached to each other. When I get my menstrual cycle, the blood goes back into the fallopian tube. It had gotten pretty large and was full of cysts. I also have fibroids again. I saw a doctor closer to where I live who suggested surgery again and Lurpon. I called Dr. Styer who was nice enough to do a phone appointment. The Lurpon would likely give me migraines, and even though I did get one or two on the Synarel, it is likely much less than what I would get on the Lupron.
The Synarel has made everything smaller, but it won't go away. Dr. Styer says that because I'm only 36, it isn't wise to remove the last ovary. I could go on hormone replacement like Prempro, but that might give me bad migraines. I'm probably going to try it and see what happens. I am ready to just feel better. But Prempro means an increased risk of heart disease, stroke, blood clots, heart attack, breast cancer, and dementia. Plus, it might give me migraines. I could also try to stay on the Synarel for a long time - like a year or more. It hasn't been studied long term in people my age, and I worry about what the side effects might be. I can switch at somepoint from Synarel to Mirena, and I'm looking up the side effects and risks of that as well. I haven't been taking a hormone replacement now, but I'll have to take something maybe if I stay on the Synarel. I could have bone loss and maybe other side effects. I'm still looking that up too.
I've gained 25 pounds since January on these medications. I have a family history of diabetes and am hypoglycemic myself, so I really worry about the extra weight. All of the medical options say weight gain is a side effect. I've managed to lose about 8 pounds in the last two months by exercising almost every day and dieting. But if I start a new medication, I might gain that loss back.
It's a lot to take in. I'm not working, and thought if I took 6 months to heal, that I could go back to normal. But, it looks like I'm going to have to deal with this until I naturally go into menopause, which I gather will be around 15 years. I'm frustrated that there is generally a lack of information available, a lack of research happening, and lack of public interest in what seems to be a health problem that affects a lot of women. I clearly have a bad case that is complicated by my sensitivity to the medications. But I doubt I'm the only one. I'm starting this blog to help me keep track of the information and to share it with others going through similar things.
