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Complex endometrial hyperplasia with atypia

Gynecologic Cancers | Last Active: Jan 3 5:14am | Replies (32)
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@grace58

I am on this journey as well. I have a history of complex hyperplasia with fibroids and polyps. I have had 4 D/Cs over a period of 12 years with negative results. After menopause my symptoms greatly improved, no more polyps or fibroids. Recently, (2022) however an ultrasound showed that I have a thickening of the uterine lining of 12.7. It was suggested that another ultrasound should be performed several months later and at this time the thickness measures 12.1 showing improvement. No explanation was given for why improvement had occurred. Another D and C for biopsy or hysterectomy was only treatment offered. In researching on my own I have discovered that there are at least 3 other treatments using progesterin that was never mentioned to me. I am finding that progesterone levels are symptoms for this syndrome or disease. It was never suggested to have my levels checked. Why is it that the cause of this issue is not even considered and why is such radical treatment prescribed? Fear can wreak havoc, I know, but please do your research and find a physician who will consider alternatives! That is where I am on my journey, looking for alternative treatment and a physician I can trust. I will keep all of you in my prayers and pray for courage and direction that leads us to complete recovery.

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Replies to "I am on this journey as well. I have a history of complex hyperplasia with fibroids..."
emmyelle | @emmyelle | Jan 2 2:32pm

Hi @grace58, @sbt19 I too have been diagnosed with hyperplasia with atypia. One biopsy result confirmed hyperplasia without atypia, the other, taken during a hysteroscopy, confirmed hyperplasia with atypia.

I have had second opinions and all are recommending hysterectomy. I had an IUD fitted at the time of the hysteroscopy procedure and my uterine lining has reduced from 11.67 to 6.15 in 2 months, which is encouraging although atypia can persist even if the hyperplasia reduces.

For the past 11 years, I have had extremely heavy bleeding and have been regularly anaemic. The IUD has resolved the heavy bleeding too.

Excuse the lengthy details, however, I was curious about your non-surgical approach.

I appreciate owing to the high % of people that have concurrent cancer, or go on to develop cancer within 5 years, why the gold standard is a hysterectomy, particularly as for EAH or EIN/ Stage 1A it’s considered ‘curative’.

Worth mentioning, I have none of the risk factors such as: obesity, diabetes, never having children nor genetic history of uterine or ovarian cancer. I am 45 years old which is relatively young for a hysterectomy.

The lack of exploration into the cause (most likely unopposed oestrogen) means there could still be an issue which could impact other areas of the body. One consultant recommended the Dutch + test and exploring BHRT (bioidentical hormone replacement).

I would like to hear how you’re getting on and to how you navigated opting for a conservative approach vs surgery.

It would be great to hear from anyone else who either opted for a hysterectomy (preserving the ovaries) or decided to reject surgery.

Feeling very apprehensive about it and don’t have a long time to make a decision as my operation is scheduled in 7 days time.

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