Trigger Warning: This post contains open discussions of severe chronic illness, PMDD, medical gaslighting/trauma, anatomy, and major surgical procedures (hysterectomy/oophorectomy).
I was humbled today by my hormones. I have something called Premenstrual Dysphoric Disorder, also known as PMDD. After 8 years of being gaslit over it I finally got a diagnosis. Within 2 years of being diagnosed, I was offered surgery. I chose to have my ovaries and uterus removed because my family history has a lot of uterine cancer, and this way I was able to avoid getting uterine cancer by just getting rid of it. I was only 26 when I had surgery, and it took me a lot of fighting to get them to even think about it and it wasn't considered until I was married and almost lost my job. It didn't matter that I never wanted to be pregnant. It didn't matter that I was not interested in having a biological child, for multiple medical reasons or that I had tokophobia (phobia of being pregnant). All that mattered was whether or not I was capable of functioning in society and also being capable of being pregnant.
It has been almost 3 years now since I had surgery. And it's been a long windy road of finding out all these other medical problems that I have, but I don't know what I would do if I had to do all of this all while dealing with PMDD. I think the part that probably pissed me off the most is that I'm positive I was experiencing uterine prolapses. It was never documented because nobody ever believed anything I said, and by the time that I found a doctor who did believe me, I was already not having a period because of chemical menopause, so everything looked normal. I was only experiencing the prolapse during my period.
I have to take estrogen every day for probably the rest of my life but to me it's a very small price to pay because I'm able to function much better and my other illnesses are not so aggressive because of premenstrual exacerbation, also known as PME. When I was on progesterone, before surgical menopause, I had a lot of problems, but what I've noticed is that in the community for people who have PMDD after surgery, hormone therapy looks very different across-the-board for everyone. Some people take estrogen and progesterone, some people only take estrogen and some people take testosterone, everyone has it in different versions, whether they are pellets or gel or oral medication. I personally take oral estrogen because I felt that I could trust my body the best knowing how fast it was being digested rather than trusting my skin to absorb at the same speed every day.
I make sure I take my hormones at the same exact time every single night. It has been like this for years. The last time I tried to change what time I take my hormones, I ended up with an 8 day migraine that had me in urgent care, 3 days in a row. That then led to getting an MRI and learning about other health issues I have. Last night for the first time since the incident where I had the migraine, I messed my hormones up. I managed to not take them out of my pillbox when I took my medication, and I did not notice that until today.
Now let me preface this hate, for peanut butter that I have. I have always hated peanut butter. I can't stand the smell of it. I don't like looking at it. The smell of Jif alone is enough to make me gag. I can't even handle kissing my husband after he eats a peanut butter and jelly sandwich. It literally makes me sick. But when I was hard in the PMDD, on the dot cycle day 14, Take5 bars was all I wanted, I wanted to eat all of the Take5 bars. I wanted spoonfuls of peanut butter, I wanted to eat Reese's cups. I just wanted peanut butter, everything, everything peanut butter. Even Jif was acceptable.
We had to go to the store today and while I was at the store I bought Nutter Butter cookies, Ritz Bits Peanut Butter crackers and also cherry tomatoes. Now, the tomatoes might seem like an odd one out in this situation, but they're related at least in this situation. I spent probably 20 minutes eating cherry tomatoes by dipping them in peanut butter like they were apple slices and that was like my snack and it was pretty decent. I was kind of disappointed, I thought that the tomatoes would cut the peanut butter a little bit better than they did, but it still satisfied me in what I needed. And I'm probably going to eat some more of it later. I’m eating some of the Ritz now and they’re great but they don’t slap the way the tomatoes did.
I just find it absolutely crazy that even though I've been, you could say PMDD-free for years. All it takes is me missing my hormones for 1 day and I'm in the kitchen damn near in cahoots with peanut butter. It’s like someone just saw my name, the all-known peanut butter hater, has been found on a list for the Peanut Butter Lovers club. There’s probably only 2 things that I hate more than peanut butter and it’s glitter and confetti. I certainly don’t have hormone driven wants of glitter or confetti in my life. Instead peanut butter is needed to dip tomatoes in it for whatever reason I don't know because it's good, I guess. I remember I would get mad that people would ask me, “Are you sure you aren’t pregnant?” Yes Rick, I’m positive I’m not pregnant and that I just want a sandwich with only tomatoes and pickles on it and the pickles better be the deli stacker slices from the 5 gallon bucket or you can f*** right off son.
PMDD in my experience was so debilitating that I was missing probably almost 8 days a month of work. And now I'm able to work my job for the most part. I do still have some issues with all my other illnesses, but I am not plagued with the emotional burden of being completely dissociated from my body in an out of body experience for 2 weeks at a time. I no longer have those moments, but I often take a long time to make decisions, because I question if I can trust myself, because I'm so used to only being able to trust myself 2 weeks out of the month. I think that's something that people don't realize. Not only is PMDD very debilitating for those that are around you, but it's also extremely devastating to the person that it is affecting directly. And I think the worst part is that you just watch it all happen and there's nothing that you can do about it, and then you just have to try and fix it, and sometimes it can't be fixed.
If you or someone you know suffers from PMDD just know that they have been in the trenches, and unfortunately, they will be in the trenches again next month. And then just 2 weeks later they'll be in the trenches again. And then 2 weeks later they'll be in the trenches again and it'll repeat until perimenopause and then s*** really hits the fan. This is the moment where you find out you’re severely traumatized from the medical gaslighting (in my case I also have DID, C-PTSD) and are neurodivergent (in my case Autism and ADHD). And then finally, menopause happens, and apparently you're supposed to feel normal after that. For me, menopause has been a blessing, but I know that not everyone has had that experience. If I were to make the decision again on whether or not I would have surgery, I would always say yes. Being in recovery from a major surgery where they went into your body and sewed your vagina shut would still be better than dealing with PMDD for 2 weeks out of the month every month. Apparently I would rather have my vagina sewn shut than deal with PMDD again.
In my journey with being on HRT there have been some other things I never thought I would experience. More than once I have been told I’m no longer a woman anymore. My own uncle told me, “I hope you kept a sample of the uterus you fought so hard to dispose of. It was the only thing that made you human. Or a woman for that matter.” Albeit, he was in a heated argument with me after I have been essentially no contact for several years due to his acts of violence. That lore is for another day though. I’m going to share a list of all of the debilitating symptoms I experienced from PMDD/PME.
Symptoms That Completely Resolved Post-Surgery
Some symptoms were never experienced again or experienced minimally:
Tremors 24/7 (must’ve been induced by hormones)
Extremely painful periods (missed work)
Feeling like I'm vibrating
It felt like my uterus was going to fall right out of me on my period. It would feel like it was literally hanging on by a thread. I would be swollen shut and it was hard for me to pass blood because of it. By the time any blood came it was old and clotted
Extreme bloating where my breathing is labored and I can’t bend over (general GI bloating remains)
Decidual cast
"Knife-like" vaginal pain
Depression
Anxiety (still experience but it is minimal)
Mood swings
Extreme and weird food cravings
Breast pain
Night sweats
Hormonal Acne
Likely PME
These symptoms were present during cycles but remain "constant" or have shifted in nature now in surgical menopause:
Leg spasms: Not as intense
Numbness/tingling/prickling in hands and arms: Improved with physical therapy (could be caused by my Thoracic Outlet Syndrome)
Dizziness: Experiencing still but only when I get up or change posture fast, much worse in the morning (unknown culprit)
Brain fog: Not as intense (unknown culprit)
Joint Pains (Lupron induced): While on Lupron I was absolutely miserable from joint pains (elbows, knees, wrists, hands, etc) even with HRT. Didn’t go away until it was out of my system, which was about a month after surgery. I still hurt but I was back to my baseline pain level so it was manageable
Headaches: Pressure headaches/coat hanger pain (getting better with medication)
Nausea: Now occurs daily and is managed by electrolytes, ginger chews or Emetrol (zofran didn’t work at all) - rare unless I don’t do electrolytes
GI Issues: Digestion even worse after hysterectomy. Seems to be a full recovery with dairy and probiotics
Joint Instability: While the Lupron caused "horrible joint pains," the actual instability (shoulders/pinkies slipping) remains a structural issue
Again as you read this list, this is a reminder that this is my experience. I also have several other illnesses that I am still trying to figure out yet. Some people can take birth control for PMDD but I could not. Some people can take SSRIs for it. I was able to take 12.5mg Zoloft for 2 weeks at a time to help with some mood stuff but still it did nothing for the physical stuff. I was still miserable, but I wasn’t crying about it. I hope everyone gets to a point that I have. I hope people find peace with this disorder.
