Feeling Alone with Endometrial Hyperplasia

I am not medical. I never had aspirations of being a doctor, a nurse, or a vet or anything like that. I do like understanding what’s going on with my body. When I was diagnosed with PCOS in 2010, I turned to the internet for information and even back then I found plenty of articles and websites devoted to helping women with that diagnosis, and understanding what potential complications it carried with it. Years later I found Facebook support groups that I joined, there were plenty to choose from and I joined a bunch and left some because of drama, or too many differences of opinion, and some I stayed in because of the connections I made and the value I felt it added and that I could add to the group.

When I lost Lily, I didn’t look for support outside of family and friends. I thought that second trimester pregnancy loss was such a rare thing that there wouldn’t be a group of people like me. When I was pregnant with Anika, I realized that I wasn’t alone and that other women, many other women struggled with the loss of a baby in the second trimester and I realized that I wanted to connect with them. I made a facebook group for us.

When I found out about the TAC, I found the Abbyloopers community and their facebook group. I even found other people who had the surgery performed by the same doctor as me and at the same hospital as me and with similar intervention plans for their pregnancies with the TAC. I found people who had Ureaplasma I found information that was relevant to me as well as other women who had experience with it and who had carried babies to term in spite of it.

So here I am with endometrial hyperplasia. Something that mostly affects post-menopausal women, and where the best form of treatment is a hysterectomy. In most of the literature I have found, pre-menopausal women like me are mentioned as a footnote. I tried googling bleeding during progesterone treatment for endometrial hyperplasia and found nothing useful. This one says that progesterone treatments can cause period like bleeding, but not how much or how long is normal or when or if you should become worried. To me, period like bleeding sounds like maybe up to a week of spotting, light flow, moderate flow, maybe heavy for a day, and then tapering off… That’s not what I’ve had. This one is a study of different treatments for hyperplasia and did nothing to reassure me. I understood only enough of the information presented to become more worried as it states that for women on medroxyprogesterone (what I am on) there was a decreased risk of persistence and progression, but that it was not statistically significant. This one only mentions abnormal bleeding as a symptom of the hyperplasia and not as a side effect of treatment. It also got me worried that I might not be on a high enough dose of progesterone. This one was about preventing hyperplasia with hormones. I didn’t even bother reading it. And this one was about causes of abnormal bleeding in pre-menopausal women. Those were the top results on Google and they sucked. I gave up on Dr. Google

I reached out for community within the other groups I am in, I found one woman. It took almost a month of searching different wordings in facebook to find a support group for pre-menopausal women with endometrial hyperplasia. I was accepted into a group with five other members. But even there I didn’t immediately find answers about bleeding.

I spoke with Doctor M2 on Friday (today as I write this) after calling a couple of times about my concern. I explained to her that for two weeks now I’ve been having period like bleeding and it’s been pretty heavy for the past week, saturating a pad every 3-6 hours. Doctor M2 said that it sucks that I’m bleeding so much, but that it means the cells aren’t having a chance to proliferate so the medroxyprogesterone is doing exactly what we want it to do. She is going to run a haemoglobin test on me on Monday to make sure that I’m not depleting my iron reserves or anything like that. She said that eventually the bleeding should taper off, but as long as I’m not saturating a pad in an hour it’s nothing to worry about. If the bleeding doesn’t taper off she may do a D&C to help clear it up, but she didn’t see that as being necessary yet. She didn’t give me a time line for how long “eventually” is. So I’ll keep you guys posted if we reach that point.

If you are reading this and you have hyperplasia of the endometrium. Whether it’s complex or not whether it is atypical or not. There is a community for you. It might not be big, it might not be well known, but it exists, and I am a part of it too. We can help each other through this.

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