Endometriosis and This New Reality

On March 7, 2017 I went in for laparoscopic surgery to remove what was believed to be ovarian cysts and possibly remove my fallopian tubes if they were found to be damaged. I woke up about a short while after going under to learn that my gynecologist was unable to perform the procedure because — well, there weren’t any cysts, but there were tons of adhesions binding my insides together due to a severe case of endometriosis. My fallopian tubes were — are — in fact, severely damaged, most likely scarred from a prior infection which had gone untreated. But they couldn’t be removed due to the fact that they and my ovaries are tangled up with my bowels, my uterus is shoved out of normal position, and my colon is glued to my abdominal wall; such a complex surgery was beyond my gynecologist’s expertise. I’ll have to be referred to a specialist for another surgery. And everything needs to come out.

Which means I can’t have kids.

My mom was the one who broke this news to me. I was still loopy from the anesthesia and was more concerned with how my mom felt over this news that I would never be able to give her grandchildren, rather than wondering how I felt about it. At first I was almost relieved; I’m 33, childless, and always feel under pressure to start popping out kids before it’s too late. Well, it’s already too late, so now I need not worry about it. But as time has gone on the reality has sunk in and I have been having a very hard time coming to terms with the fact that I will never have a biological child. The daughter I used to always dream of having? Gone. She won’t ever exist.

I know I can always adopt. I know things could be way, way worse. My first instinct, upon waking after surgery, was to be grateful that I don’t have cancer, as that was a possibility. That is really good news! And I’m still grateful. But I am also angry and grieving because, ultimately, I still end up losing a lot. Endometriosis in and of itself is not fatal but it can spread to other organs, and that thought scares me. I know if I want to try In Vitro Fertilization they can try to save my uterus and ovaries, but financially IVF is out of the question. I can opt to have them save my ovaries to avoid going through early surgical menopause, but that will require further surgeries as the endo will likely come back and the ovaries will need to be removed in another 10 years anyway. If possible, I would like to avoid further surgery. So I am leaning towards having everything out but am also scared to death to actually have everything taken out as I’ve read some real horror stories on the Internet. Surgical menopause at the age of 33 means an increased risk of heart disease, osteoporosis, possible sexual dysfunction, and other health problems — including possibly a shortened life expectancy. But leaving my ovaries in while having this disease will mean undergoing hormone suppressant therapy that will put me in a temporary  medical menopause (which I read can have hellish side effects just from the hormone suppressant drugs alone) as well as the likelihood that the endo will come back and cause further complications with my bowel and bladder. I guess ultimately it comes down to deciding which is the risk I’m willing to take.

It’s been a little over five weeks since having this new reality thrown at  me, and I am still waiting to see a specialist so I can discuss my options further. A complete hysterectomy is scary, especially knowing that I could be sexually dysfunctional afterwards. I’m only 33, dammit. I’m not ready for that part of my life to be over yet. I’ve been with my partner for 10 years and he’s the only person I’ve been with, and losing that intimacy would be crushing. I’m also worried about the depression I may experience afterwards, as I already suffer from major depression and I don’t know how much worse it can possibly get. I read somewhere that if you have mental health issues they will increase by 100 percent after a hysterectomy that involves removing the ovaries. I don’t know if that’s true or not, but the prospect of sinking into an even deeper depression is certainly not appealing.

I know that whatever the future holds, I’ll get through it. Somehow. But for now I am grieving and angry so I created this blog as a place to vent and express my fears, as well as document my journey as I navigate this new reality. I know there are other women out there — many women — who have gone through the exact same thing, and I’m not alone. But right now it sure as hell feels like I am, like I’m caught in a no-win situation with a choice hovering over my head that is irreversible. I just want to make sure that I make the right decision. I don’t want to do something that I will spend the rest of my life regretting.


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