Hi Margaret,

This is my first time posting here. I had a similar diagnosis to yours in early 2019 and was recommended surgery but opted to keep my uterus and see if hormone therapy would work. I took Megestrol for about two years (although I did not like the side effects, they were mild), and had remission for almost 5 years. After the cancer was no longer detected in my biopsies, I opted to take (body identical) progesterone (no more megestrol) to keep the endometrial lining thin, which I loved because of how it helped me sleep. You can also take progesterone and progestins together, and I wish I had known that at the start.

In late 2025 the cancer recurred in my uterus and I was again put on megestrol. Despite the hormone therapy, it continued to spread to my ovaries. Initially it looked like simple ovarian cysts and then endometriosis, but it turned out to be a recurrence. I quickly pivoted and decided to opt for whatever treatment was recommended. Now I am almost 4 months post radical hysterectomy and just finished my fourth chemo treatment of 6. I often ask myself if I could go back would I opt to keep my uterus again? I'm not sure of the answer. I did have 5 years of feeling like I was doing the right thing, and a lot of that time feeling quite healthy on the progesterone, and maintaining the benefits of functioning ovaries. I do imagine that if I had opted for surgery then, I wouldn't be experiencing what I am now (chemotherapy and a Stage 3a diagnosis). But if I could go back, would I do it differently? I'm still not sure. I was proud of my counter-culture choices, and I'm proud of how I was able to let go of them when it became clear that it was no longer working.

My best suggestion is to be sure that you are monitored very closely. I was going in for regular biopsies, and because I had a stenotic cervical canal, it was painful every time until I finally found a gynecologist who would partially sedate me like for a colonoscopy. Best of luck in your decision moving forward!

Thanks for that info Sarah. I'll look into it.

Hi Margaret. I was on the same track as you with my thinking about the hysterectomy. It did seem that my oncologist grossly underrepresented the side effects. One thing to consider if you are in doubt would be a hysterectomy that spares your ovaries. I believe it's the ovaries that produce the estrogen and progesterone that prevent the future problems. One more thing I suggest is to look into the work of Dr Lara Briden who gives a well researched and nuanced discussion of hormones and women's health and also look into the benefits of progesterone supplementation which I believe could be supportive in your case. She and Dr Jerilynn Prior both suggested I take progesterone only for it's systemic effects while I still had my uterus. Wishing you all the best!!

Thanks Sarah for your information on your experience. You have been very helpful. The hormone therapy I am on is an artificial progesterone, leveonorgestrel, as an IUD. I've had it in for almost two months now. I am due for a 6 monthly check up in November, which will involve a hysteroscopy, d&c, biopsy and replacement of the IUD. So that will be the decision time for the next course of treatment. If the biopsy shows no further spread, I will be staying with the hormone therapy. You did so well to keep it away for 6 years.

I am resistant to a hysterectomy because I have read articles on the long term side effects of hysterectomy including heart problems, stroke, bladder problems and impaired bone health due to no oestrogen with removal of uterus. I feel as though the oncologists treat the cancer at the expense of the rest of your body.

Thanks again for your perspective. It will help in my decision making.