Total Hysterectomy, PCOS and PMDD

Recently, I had a total hysterectomy, ovaries, cervix and uterus. I had this because of my PMDD since other treatment options did not work and abnormal bleeding and periods caused by my PCOS. I found out with the biopsy I did in fact also have endometriosis. Talk about fun!

We are done having a family and because of other meds I am on they refuse to give me oral birth control pills and the IUD and I did not get along. It was a long process (well over a year) of trying different things. You may know about PCOS because of my previous post but I haven’t posted about my PMDD before. Premenstrual dysphoric disorder (PMDD) is a severe version of PMS in the most laymen terms but from a personal point of view it sucked ass. It was literally the worst week of every 3-4 weeks of every month. The symptoms are far too numbered to list here, but you can see them on the John Hopkins site. They range from psychological, gastrointestinal, skin, neurological, respiratory, fluid retention, eye, and other symptoms, and you must meet a certain number of them before a medical professional can diagnose it.

PMDD is not widely known about and definitely not talked about. After talking with different types of doctors in the process of getting my diagnosis it was my psychiatrist who wrote me a letter after trying different types of therapies that finally assisted me to get my total hysterectomy. Now, typically if they do removal it is of the ovaries only, but because of my family history of breast cancer and increased risk of cancers due to my PCOS we decided to remove everything. This allows me to not have to take progesterone in addition to the estrogen patches after the surgery.

If you read my blog, you know I am an over sharer, in the interest of sharing information. So you probably want to know what my symptoms were and how I knew there was a problem. Well, after they removed the IUD that didn’t get along with me I noticed the difference every cycle. I started tracking it on an app that let me also track my moods because I knew something was wrong. In addition to having PMS worse than I ever experienced in my life, I was angry, like I wanted to commit violence (though not to worry I did not) and my mood was super low. I was having to take Xanax and then another mood stabilizer the week before my periods just to keep thoughts at bay.

Like most of my other ailments, the cause of PMDD is unknown. They believe it is an “abnormal” reaction to hormone changes, which, with PCOS tracks. Endometriosis is something they found inside and outside my uterus when they biopsied it. Though when it’s inside the muscle it’s called adenomyosis. The thing is, hormone reactions can cause this too. WTF you may say to yourself. Yes, if you have abnormal hormones it appears you are at risk for these other things too. When I had asked my doctor about having endometriosis when my periods were really bad and I hadn’t narrowed it down to PMDD yet she said the treatment for that was oral birth control anyway so at the time they wouldn’t do anything different. Then when they refused to allow me to continue oral birth control my issues were not addressed other than to tell me my only option was an IUD.

So, all of the symptoms tracked, I tried many different treatment options and nothing helped. There’s two ways to go about the surgery, laparoscopic and trans-vaginal. Obviously, if they pull it out through your vagina there’s less incisions to heal and it’s less invasive. Which type depends on each person. Luckily for me they pulled everything out via my preexisting hole. My surgery went off without a hitch and recovery so far has been ok. I will wear an estrogen patch for several years to stabilize my hormones for bone health. If this process has taught me anything it is listen to your body, track your symptoms and talk to as many doctors as you need to in order to find the care you deserve.