I began this blog already trying to come to terms with not having biological children due to a whole combination of factors including endometriosis and fibromyalgia. I thought I’d started to grieve and that I was moving towards a place of acceptance. However, recently, my husband and I had our hopes raised and then sunk as described in my last post. Now that our hopes are nearly entirely gone, the finality has brought a new level of grief as I realized how much hope I still had and how much it meant to me to carry our own biological child. Beyond that, we have new decisions to make that I was not expecting to make so soon.
We learned last month that we were extremely unlikely to ever conceive on our own and that my ovarian endometriomas are too large and that we can’t retrieve any eggs even if we were going to try IVF.
Then we went back to my surgeon, and we got a recommendation I really wasn’t prepared for even though I’d been worried that one day it would come. My surgeon recommended that I have my ovaries removed, a bilateral oophorectomy, along with excision of as much endometriosis as possible. He recommended keeping my uterus. Removing the ovaries will put me into “surgical menopause” at the age of 38. I have recurrent severe endometriosis that keeps forming large endometriomas on my ovaries. A lot of damage has been done to my ovaries as a result. They say there’s a very, very low chance of success with IVF at this point, even if we were going to try it (and we’re not in a position to do that). And there’s a strong likelihood of the disease coming back and forming cysts yet again, causing me more and more problems.
The doctor would have me start hormone replacement therapy for several reasons – one, to keep my uterus viable in case we later wanted to pursue IVF using a donor egg (not a very realistic option for us); and two, the health benefits outweigh the costs at my age. Still I guess there would be a major adjustment and I’m worried about all of this. Still gathering information about options, hormones, risks, benefits, etc.
I’m so sad to be facing the real end of my fertility and to learn there’s no real chance I will ever have a biological child of my own. Even though I thought that was already true, I now will not get to even have my irrational hope of a miracle. Although I will continue to hope for other kinds of miracles that I believe will ultimately happen for us. We’ll find a way to have a family somehow.
I’m nervous about the surgery even though it’s basically the same as the laparoscopy I had before and they took such good care of me and it wasn’t really that bad.
I’m afraid of endometrial cancer, but I guess this surgery reduces my breast cancer risk and, obviously, my ovarian cancer risk.
I’m so scared to be facing menopause and what comes along with it. I’m worried about hot flashes and “urogenital atrophy” and loss of libido and worsening migraines and vaginal dryness and depression and mood swings. At the same time, maybe I will feel much better than I do now! There’s just so much uncertainty. I think what scares me the most is if my depression were to get worse and if my sex life with my husband were to suffer. We’ve only been married not even two years yet and I’m just not prepared to give up our happy sex life too. And I don’t know what would happen if my depression got worse. I’m so sad over this whole situation, but I’m trying to keep taking it all one step at a time and trusting for better times ahead.
So the decisions before us… I need to have some kind of surgical intervention because my cysts are getting larger and my endo is uncomfortable and painful, and the disease will just keep progressing without intervention. The cysts could burst basically at any time, which is extremely painful, and the disease is also more likely to spread if I do nothing now. I could have a conservative surgery like I did before and keep my ovaries. However, I would very likely be back in this same predicament a few years from now needing surgery again. And, even if I keep my ovaries, the chances of successful conception are very, very small at best even with IVF.
If I have the ovaries removed, it is more likely that my endo would be successfully removed with a lower chance of recurrence. I don’t really expect a cure at this point, but maybe I wouldn’t need another surgery after this? Or at least fewer. The fewer surgeries I need, the better. I take the risks seriously and do not want to have any more surgical intervention than necessary.
The next decisions are about keeping my uterus and what kind of hormones to try.
I’m going for a second opinion at the end of the month and then back to see my surgeon in June. I’m scheduled for surgery in July. I figured why put it off, and I think the answer will be clear by June. None of these are options I would have wanted. There are so many uncertainties and we just have to make the best decision we can and do the best with whatever happens. I don’t know what else to do.
This was tough to write. I’ve been meaning to, but dreading it at the same time. I don’t want to admit these things are truly happening.
If you’re reading this and have experience like this, any advice on hormones, surgery, etc. or experience you’ve had would be most appreciated. Even just advice on how to make big decisions when the options are all far from ideal would be great. I know one thing I am trying to do is stay grateful for the good things in my life and to just keep breathing and taking one step at a time. It’s really tough when I feel so heartbroken. I’m not even sure what to say.
Image: Droplets by Lacasse, Wikimedia Commons
Text copyright Snowdroplets 2016