Recurrent Endometrial Hyperplasia with Atypia

It has taken me a long time to be able to write this because I had a lot to process and to come to terms with. It has been a long road to some form of acceptance and I know that I have a long way to go, but I’m trying and I’m working on it. Because it’s been such a long road, a lot of the details are a bit fuzzy but I know I can give the broad strokes.

It was July of 2020… We were settling into our beautiful new home and I could not shake the feeling that the best thing to really complete our home would be a pregnancy. I was so hopeful for and so heartbroken that I hadn’t already had a spontaneous pregnancy. To make matters worse I had started having weird bleeding again. I made an appointment with Dr M2 and she did another biopsy. I remember saying out loud that if the hyperplasia was back I wanted a hysterectomy. As I said it, I knew that wasn’t truly how I felt.

I can’t remember how long it was between the biopsy and the results, but I was in the livingroom when I got a call from the hospital. It was a male doctor that I had never spoken to before. He introduced himself and explained his role but, honestly, it didn’t stick. He was very matter-of-fact as he said “You have recurrent Endometrial hyperplasia with atypia… blah blah blah cells… Are you ready to book your hysterectomy?”

I was crying, my head was spinning and I was MAD! How dare this man speak so flippantly about my body! How dare he suggest I remove the only home my daughters had ever known! I was not ready, there had to be another way! Out loud I said “Well, that is a complicated and difficult question.” He asked me if I wanted to speak to Dr M first; I said yes.

By the time I hung up, Malcolm was in the room with me. I didn’t need to say anything, he figured it out. He held me and I cried. He asked me why I was this upset about it and I said that I couldn’t let go of the idea of being a mother to at least one living child.

I don’t know how long it was before Dr M2 called me. She spoke softly and with a more compassionate tone. She said that the fact that the cells came back while I was on a preventative regime of taking progesterone every 3 months to induce a period and clean things out wasn’t good, and that we had to take action because this was a big problem. She recommended a hysterectomy, but said they would not do that without my consent and that while I processed, she could give me an IUD to provide constant progesterone locally and hold the hyperplasia in place (without damaging my mental health as much) while I take the time to weigh out my decisions. She also offered to do another biopsy to make sure that the first one wasn’t just a weird sample. Finally she gave me contact info for a reproductive counsellor to help me process my very limited options.

It was August 30th when I went in for the repeat biopsy and to get the IUD placed. Early in September, Dr M called me with the biopsy results. Prolifereative cells, hyperplasia with atypia, pre-cancer that stood a good chance of mutation to cancer. I asked her about future fertility treatments, and if we could be more aggressive than we had been in 2019 before I tapped out. She said no. She said that with my IC and TAC, the uterine infection, and now the recurrent hyperplasia she was not comfortable with continuing fertility treatments. I asked her in an ideal situation where my hyperplasia was pushed back again what would be the best course, she said IVF but that that was still not a good idea because of the chance it could cause a recurrence and mutation of the cells. I didn’t really listen to that last part, I just latched onto the idea of IVF and that I just had to get the cells to regress and I could do IVF. I began researching that and corresponding with the counsellor.

The counsellor waned me to really consider the risks. To really listen to what Dr M2 had been saying. She let me tell my story and explain my reluctance for a hysterectomy and also helped me to see that there were a lot of risks involved with keeping my uterus. I was very lucky that my hyperplasia had been detected twice before progression to cancer and that I did a good job of advocating for myself when I had the abnormal bleeding in the summer. We talked about whether or not the discussion of a hysterectomy was related to my off hand comment at the time of the initial biopsy; it likely wasn’t. It’s the common next step with recurrence. Fertility meds could cause it to come back again and the potential for getting pregnant is not worth the risk of losing my life to endometrial cancer, a cancer with a high probability of metastasizing and not great survival rates, plus having to endure cancer treatments which can be worse than the disease.

Basically, my uterus is no longer a benefit to me. It is not a safe home for a baby and it is not a safe piece of my body for me to keep. My counsellor asked me if my unwillingness to let go of my uterus was because I wanted to raise a child or because I wanted to be pregnant again. Because those desires are not the same thing.

I had a follow up Dr M2 for another biopsy half way through December, I let her know that despite treating the hyperplasia, I was still bleeding most days. She said that was concerning, but that I shouldn’t be worried and we had a serious discussion about a hysterectomy. We agreed that a partial hysterectomy that leaves my ovaries intact and part of my cervix is the best option for me. There is a chance that when they get in there they could find reasons to remove my ovaries as well and I consented to that because if they have to remove them they would be doing it for my safety. The hysterectomy was going to be done through oncology so that it could be done as soon as possible and I agreed that was for the best.

A couple of days later I got a call from Dr M2 that my biopsy showed complete cell regression and that the request for an emergent oncological hysterectomy had been denied because there was no reason for this to be deemed an oncological emergency. So, I have to wait for a gynecological hysterectomy, which just means a longer wait time for surgery but the surgery itself will be exactly the same.

My hysterectomy will be done laparoscopically and they will cut my uterus into small pieces to remove it. My TAC will not cause any issues with this type of procedure. I am disappointed that I had the TAC placed and never got to put it to use, but it just goes to show that we can’t see all ends.

I am still struggling with radical acceptance of what will come. I am still struggling to find the good in any and all possible outcomes. I know how I would like this all to turn out, and I also am trying to process a happy life where things don’t all go to plan.

In many ways I am at peace with what’s happening. I know that I am okay now and I will be okay later. I have an amazing support system and I trust my doctor and her team.

2 thoughts on “Recurrent Endometrial Hyperplasia with Atypia

  1. Oh, dear! Big hugs! I thought a lot about you since your last post. I am very sorry! I really hope you’ll be better with your health! I send good vibes to you!

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