Atypical Endometrial hyperplasia

Hmarw5 19 hours ago

3 replies
56 subscribers
56 views

I struggled with getting support for years. Suffered with terrible pain daily and extremely heavy bleeding for months to no period for months, this was ongoing since i was a teen. (Im now 30)

My gp refused to refere me to a gyno because i "wasnt there yet" and "only had pcos". They tried me on provera, acid tablets, the pill so much stuff and it didnt work. I finally begged for the referral so i could go private.

I finally got seen privately and i had MRI, tests and finallt i got diagnosed with endo, ando, pcos and a cyst on my left ovary.

During surgury to remove the endo they tested and found i had significant atypical endometrial hyperplasia.

I declined the hysterectomy as i have been trying for babies and really hope i get the chance too have one with my partner. Currently im on the coil but 3rd biopsy came back and its still showing no improvments.

Im really starting to lose hope, i keep being put on the 2 week list (3 times now), but they are just being careful because of the risk.

With everything going on im in alot of pain, on codine nearly daily because of other issues and feel like im hopefully due some good news soon i hope...

I would love to connect with people with similar experiences and hopefully some success stories.

Frankie26 17 hours ago

Hi,

I have just accepted your friend request. I am in a similar position to you having gone through 2 biopsies I am diagnosed with severe complex pre cancer (complex aytypical hyperplasia) I am in my early 30’s and like you had heavy bleeding for most of my life since the age of around 14.

Im sorry to hear you are also going through this. There’s no words for how this makes us feel is there. I’m so sorry to also hear that the coil hasn’t made improvements.

I have recently had 2 coils fitted, it didn’t work for me and they self expelled in under 2 weeks. It was heartbreaking as like you my husband and I also want to start a family.

I have been currently recommended oral Megace treatment by my oncologist so am currently exploring this.

Please feel free to private message me, I have been wanting to connect with others too in a similar position. It’s tough but having someone to relate to, maybe we can support each other..

Take care,

Frankie x

LolaBear 3 hours ago in reply to Frankie26

Hi, I am a lot older than you but I have been given the all-clear from grade 1 stage 1 EC after having the coil for a year. It can be done! I replied earlier to ask whether you might just have one coil in, which would be less likely to be expelled - and the Megace perhaps? Other women have had success with hormone treatment and I've never heard of anyone having 2 coils, which sounds difficult to cope with.

It took me just over a year to get the all-clear result and I hope in your case that you find success to try for a baby. Liaise with your team to find what works for you. Sometimes it can take time. Good wishes.

LolaBear 3 hours ago

Hi, as posted to another lady, I am a lot older than both of you and post-menopausal but have had success in clearing early stage endometrial cancer with the coil. It took just over a year - but recently I was informed that there is now no sign of disease so it can be done. It was on my second biopsy after having the coil fitted. Some women take a while for it to work and apparently, losing weight can help too, because it reduces excess oestrogen. I hope you find success.

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