No, you may not have my uterus

I have known since I was 15 years old that I was not going to be a mother in a biological sense. I was already having periods from hell and was taking a medication called Anaspaz because the cramps were so bad. Without it, I couldn’t even make it to school in the mornings. I remember having Biology first period and praying that we would have a lab day, because I could stand and not have to try to sit as spasms rocked my special no-no place, feeling like someone had shoved tweezers up my twat and was pinching as hard as they could.

I knew then that i likely had endometriosis, but no one wanted to saddle a teenager with that diagnosis back in the 1990s. Instead, they told me to just try these different pills and I carried on.

I tried various OB/GYNs within my doctor’s practice. Now, I loved the doctor that I had when I was a teenager. My pediatrician had retired and we started going to an osteopath. He really spoke to my natural healing side that I didnt realize I had. But the “female doctors” were a different story.

My favorite was the female OB/GYN in their group. I think I only went to her once or twice. I will never forget her words to me when I was describing the horrid pain, discomfort, and flow: “All of us get cramps. Suck it up.”

Yes, she told me to suck it up. The immediate thought in my head was “Fuck you.” But being the good kid I was, I just stayed quiet. And I didn’t go back to her.

Fast forward to my college years. My regular doctor was the one who told me to try birth control pills to calm the pain and chaos on my nether regions. They helped, but also gave me horrid side effects like wicked migraines and mood swings. I remember one day during my student teaching year, I accidentally pinched my finger in the door between our room and the nap room. I cried so hard for so long, and definitely unreasonably so, that my lead teacher pulled me aside and told me I needed to go home for the day. But she was not going to let me leave until I called my doctor to make an appointment to discuss getting on something else, because these side effects were clearly getting in my way. The other teacher in the room had been a nurse before getting her training, so she knew it was a reaction to the meds and held my hand while helping me describe in detail to the doctor via phone what was going on.

Soon after that, my doctor’s practice got a new OB/GYN who was a male. I felt a little weird going to him at first. He was older and had a very childish kind of voice. But when he told me, “Don’t worry, honey, we will get to the bottom of this,” I burst into tears and let him hug me.

But then I randomly moved to NY. It was a spur-of-the-moment thing. I didn’t want to leave the one doctor who was finally listening to me, but too many other factors in my life were dictating that it was the right move.

I made it a couple of years without incident. So I blamed it on stress. When periods started getting rough again, I used an ex telling me that his new girlfriend possibly had an STD as a fast track in to be seen. (I was clean of everything, thank you very much.) Oh hey, I had issues. Maybe meds would help. And still so young, so taking it all out is not even on the radar. Again, I was put on birth control and wished the best of luck.

Then came the infamous Bob Dylan concert. We were all excited because we were taking my “nephew,” my best friend’s son for his birthday. I was also sort of being set up with the son of a friend of a friend. My period had just, ended, or so I thought. All of a sudden, in the middle of the show, I felt this tremendous release and realized I had just exploded blood all over the place. I was humiliated. I had nothing with me, because it was over. I couldn’t leave, because I didn’t drive to the show. I had to freeze while tying my hoodie around my waist and use creative means to keep myself clean. And needless to say, I never did go out with that guy again.

The hemorrhaging continued over the next couple of days, and I realized that I was becoming anemic. Out of desperation, I called a couple of parents in my class who I knew were OB/GYNs and finally got in with one, luckily one parent that I knew pretty well and liked. She knew me well enough to know that I was not okay and that I wasn’t over-exaggerating or making up any of my symptoms. She put me on medication to stop it all and ran a bunch of tests. We determined that I needed surgery. I was panicking that I was going to be told that I was going to have to have a hysterectomy. People were already starting to tell me that perhaps that would be a good option. But there was no way I was even going to consider that in my early 30s.

My doctor did exploratory laparoscopic surgery to see what all was going on. The results were devastating. I was finally officially diagnosed with endometriosis, which I had pretty much known that I had since I was in high school. She affirmed that I had ovarian cysts and had even removed a chocolate cyst (one that never burst, but was filled with old blood). That explained some of the random pain I had been having at times. And I was diagnosed with something I’d never heard of before, called adenomyosis. Basically, my uterus was starting to fall apart because foreign growth were infiltrating the walls.

In a nutshell, I wasn’t going to be able to have children.

Or at least I could possibly conceive, but the chances of me being able to carry to full term were slim to none without a lot of assistance.

The news was devastating. I remember calling my parents with the results and my father cried like a baby, thus making me cry. Mom was in the beginning of her Alzheimer’s and didn’t really understand what was going on. I was only 32 and had always wanted to be a mommy. I didn’t know how to take that.

About a month later, I got distracted from this pain because my beloved grandmother passed away. The last bit of advice that she gave me the last time I saw her, less than two weeks before she died, was “Don’t have a vaginal hysterectomy.” She would not elaborate and no one in the family really understood what she was talking about. But I tended to listen to my grandmother.

Time moved on. Mom went into a nursing home for her Alzheimer’s. Dad passed away. (Longer story for another time, and has likely already been mentioned in the past.) I basically lost three generations that year. But I was feeling better.

Fast forward several years. Stuff is starting up again. I know I am having cysts again, because I have that pain at times. I was diagnosed with fibroids a few years ago, and I’m starting to be able to feel them. (Hello, fourth diagnosis in the female system.) I lost my insurance when I left teaching a couple of years ago and only just got it a few months ago in January. I know that things are likely to get worse. I know that I’ll have to suck it up and go in for more testing. I know big decisions will have to be made. But I can’t deal with it this spring. I have to wait until summer when work calms down and I can think better. I’m coming off of a very brutal year.

But the thing is, I am going to work with my doctor to make whatever decision needs to be made. I am relatively open about my problems with my friends. And all I keep hearing from so many people is, “Why don’t you just get a hysterectomy and be done with it? I want one, but they won’t let me have one.” Um, I’m glad you’re good with it, but I’m not.

Yeah, taking someone’s uterus is not something the doctors take lightly. It’s not exactly elective surgery. The consequences will last you the rest of your life. Plus, even though I am almost 42, I am still relatively young. I know that I cannot birth children. That ship sailed long ago. But I do not want to be in menopause any earlier than I have to. Following that laparoscopic surgery all those years ago, I had to be in a medically induced one, and it was awful.

Will it make my problems go away? Yeah, for the most part, though some of the problems could continue. Endometriosis can sometimes still be present even after the uterus is removed. If I keep the ovaries intact, I could possibly still develop cysts. There are no guarantees either way.

Plus there is the whole psychological aspect of it all. Once you remove that fundamentally female organ from me, you are cementing that my childbearing years are truly over. The slightest sliver of a dream is going to be completely gone. Menopause itself can be traumatic enough for a woman, let alone being forced into it. And just that whole thing about removing an organ is a lot to tolerate. I would prefer to try other options first and put it off as long as possible, or better yet, still have it occur naturally. I don’t want to deal with surgery. I just had kidney stone surgery a few months ago in the fall. I’m claustrophobic and putting me under sedation gives me massive panic attacks. My body has also been through a lot in the past nine months or so. Why make it worse?

Now, if and when I go in, if I were told that I have cancer or something like that, it will be a no-brainer. I just lost my aunt this fall to ovarian cancer, so that is always on my mind. But otherwise, it’s just not even on my radar right now.

For those people for whom it would be an easy choice to just take it out, more power to you. I’m just not wired that way. And I know my doctor knows this and respects that. I just wish that people I knew could also be respectful of my wishes and not try to belittle me or lecture me for wanting to make the choice of keeping my uterus if I can. I’m not belitting you for wanting to have yours out. I guess we shall see what happens when the time comes later this year.

Thanks for “listening.”

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