I got my surgery results last week and have hesitated to write about them. My hesitation stems mainly from frustration, sadness and probably a little bit of denial. I won’t lie, I’ve had a few breakdowns and I’m sure there will be more in the future.
What follows is some excerpts from emails to friends about what I have been feeling and what my next steps will be. Rather than type out my feelings again I figured it was best to post them here, in raw form.
The doctor found endometriosis, which was not a surprise to me at all. All the symptoms I’ve had over the last 15 years were consistent with the disease. I just needed a doctor to take me seriously and want to make a proper diagnosis. The growth is mild, (although he did note that it doesn’t mean my symptoms are mild).
Unfortunately because of where the growth is, he couldn’t remove any of it. Doing so would lead to further health problems and so I am left with it, where it is, for now. I think this was the most depressing part of the news. I was of course hoping he would be able to take some of it away. I feel as though my U was hoping so as well. We got our hopes up, only to be disappointed. I hate knowing that I have this scar tissue sitting in places where it shouldn’t be and that every month when the estrogen rises, it sends this little signal to the tissue that basically says: ignite the pain and nausea.
A bit of a health lesson, for those not familiar with endometriosis, what happens is that after you ovulate your uterine lining thickens (otherwise known as your endometrium) in preparation of nourishing a baby. Hormone levels increase and if not pregnant, then the lining sheds, also known as your period.
However, for me (and sadly so many women around the world), the lining grows both inside and outside of the uterus, leading to scar tissue. Because the doctor could not remove it, it’s just going to sit there, causing problems, and quite potentially getting worse.
I should note that it may also get better. May…
To treat this you basically need to stop the growth of endometrium (stop ovulating) and so getting pregnant, going on birth control or trying a progestin drug can help. There is actually a new drug on the market for endo called Visanne that is about a year old (in Canada). Their website’s imagery is especially welcoming, what with the young women hiding behind the curtain and all. I’m a bit skeptical, mainly because the company (Bayer) who makes Visanne had a birth control pill I was on in the past, which has since been recalled and now has about 4,000 cases against them, due to blood clotting.
I’m a little disappointed. I get that there are options, but I don’t really see them as options for me. If my body could handle synthetic hormones, I probably wouldn’t hesitate to try Visanne, but because I’ve had such a hard time with them in the past, I don’t feel that going that route is right for me. I guess I was hoping he would be able to take care of this somehow, without drugs or me getting pregnant. I should add that having endometriosis can make getting pregnant more difficult, which is hard to hear, even if you are not wanting to have kids today, tomorrow or a few years from now.
I’m glad I had the surgery. It confirmed what I already suspected and now I just need to decide if I’m willing to take a risk with a drug, or if my husband and I want to start a family. And so I’ve done what I always do… checked out books from the library and begun my research. I may have an incurable disease, but that doesn’t mean I can’t be informed and maybe even a little empowered with new knowledge and hopefully some natural remedies that work. I may even sport a yellow ribbon during the month of March. Although referred to as yellow washing by some, wearing the ribbon may encourage and educate. And when 1 in 10 women struggle with its effects. educating people about endometriosis is importnat.