Severe atypical hyperplasia

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So I had been bleeding for the last 5 months now (it took me over a month before I finally managed to get to see a doctor) which for me had not been an abnormal thing as I was diagnosed at the age of 12 with PCOS which has several times since then swapped between that and DUB, I have always had very irregular bleeding which can last for long periods of time. Every time I’d been to a doctor they said the same things blood test, ultra sound, it’s (either) Pcos or dub they could never make their minds up, here is the pill that will stop the bleeding. I recently moved and changed doctors and had the problem again so went to the doctors who again blood tests and ultrasound but this time they gave me an internal ultrasound which showed a thickening of the uterus. I have since been for a hysteroscopy, where they found multiple polyps which they removed most or all of them not sure if she got them all, took a biopsy (and had the coil fitted all at the same time - boy what a day that was)

Got a phone call to go in to discuss the results today and they said I have severe atypical hyperplasia. They are now sending me for an MR scan to check for any cancer, the biopsy didn’t show cancer but can’t be ruled out that it’s not deeper in the womb.

My worry is I am only just 34 and did want to start a family this year but I am now facing the possibility of having either a full or partial hysterectomy. They have said depending on the results of my scan they may leave the ovaries so I don’t go into menopause. But do I risk not having the surgery and trying for a few months to get pregnant (which I’ve never managed to conceive as of yet and I know my partner is fertile as he has a child) or do I go ahead with it?

When I spoke to the nurse today she said that the coil is a good way to keep cancer from forming or getting worse if there is any there that hasn’t been seen yet, but if I want to get pregnant then surely I’d have to have that removed which then puts me at higher risk? All depending on my MR scan results if I do delay the hysterectomy that also means I have to have a biopsy every 3 months and an MR scan 6 monthly.

I also wonder if this had been detected on the countless other times I had been to the doctors before could this have all been prevented and treated years ago before it got to the severe stage?

Thanks for any advice. I apologise for rambling on.

Shelly

Fairycake over 1 year ago

Hello Shelley. I’m sorry to hear about the problems you’ve been having. I haven’t any relevant experience to share but I noticed you hadn’t had any replies so thought this might boost your question back to the top. It sounds like you have lots of questions which your medical team should sit down and talk with you about. If you do have to make decisions about surgery and whether to try for a baby now or later, you might find it helpful to discuss with them whether or not your eggs can be harvested and frozen, and whether they can refer you to a fertility specialist should you need help conceiving/having a child. Gather as much info as you can and take time to ask all your questions so that you can make informed decisions. I hope that you get all the help and support you need and that you will have peace about the decisions you and your partner take.

Cakenport over 1 year ago

Hi Shellyrose . I too had Atypical Hyperplasia and it took a good couple of years of frustrated to-ing and fro-ing to find this out, so I understand. But nothing we can do about that now - at least you have found out now and the fact they have found hyperplasia, not cancer is the best of the bad news. This suggests even if you have staged cancer it's early days. Womb cancer is slow-growing initially.

When I was told about this, the consultant noted I did not have children and said there were options for me to go on some kind of pill (that would allow you to get pregnant) to give me time if I wanted to have children. However, I didn't want to explore this and shut him down, so I don't know the full facts- I don't even have any notes for what it was called. I just wanted to know where I stood and have a hysterectomy so didn't go into any more details. Just know it seems there are options and I'm sure you'll be able to have this conversation once you have your MRI results back.

A biopsy every 3 months sounds really full on - but if you did this with a coil on the same day, you are made of solid stuff! I'd hold on tight until you get your results, know exactly where you are and have a really full and frank conversation with your consultant. I think only you can come to that final decision.

Hang on in there for your results!

Tricky1234 over 1 year ago in reply to Cakenport

I too have this and waiting on a MRscan

Mrsk06 1 month ago

Hi Shelly,

I have also been diagnosed with severe Atypical Endometrial Hyperplasia, how are you getting on? I'm 34 and not ready for a hysterectomy hoping it can be reversed but can't find much info online about this! I am currently on 20mg of Provera daily and the bleeding is horrible and passing large clots. The consultants have stated they want to put me on 400mg of Provera and a repeat biopsy in 3months time. I am hoping to see some success stories about reversing the hyperplasia.

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