Complex atypical endometrial hyperplasia in polyps

Hi Poppy,

A warm welcome to the forum. I don't have the relevant experience myself to answer your question, but I think we might have a couple of ladies on here who might.

I'm thinking you could speak to Tracy Miles from the Eve Appeal https://eveappeal.org.uk/

They deal with gynaecological cancers and everybody says they are great. I think that would benefit you greatly. You can also email them and tell them what time to call you, giving them your problem.

Hope this helps 

Lots of love 

Alison xxx 

That's good Poppy, let us know how you get on 

Alison xxx 

Hello Poppy and welcome. I'm sorry I can't help either but Alison has given you some great advice. It sounds like you may face some tough decisions and I hope you'll be able to access the help and support you need. I know nothing I say can make facing the possibility of not having the family you long for any easier, but as a Mum my heart goes out to you. Hugs x

Hello there  ,

welcome to the community, I see there other ladies have already started to introduce themselves. It’s unfortunate that I too don’t have the same experience you have. But I can offer you a link https://community.macmillan.org.uk/cancer_experiences/ask_the_expert/ it’s longhand but I would recommend you asking an expert who I am sure can give you a more experienced explanation to what your going though. I was diagnosed with womb cancer and had a hysterectomy and being young too not having children is something I regret and i always say that if they can persevere fertility and it not compermise your health then that is at least some good news. i know from my own experience that we like to make our own decisions on whether to have children or not but yeah having that decision possibly taken away is hard and I hope you will always have that decision. I have heard that sometimes the cells are contained to the polyps, so hopefully they are and they can remove them without having to have a hysterectomy. I am happy to learn you have a good consultant this really helps with the anxiety and I have my fingers crossed for you that you get good news from all the tests. I can understand the shock your in, it’s like your watching someone else being told. Sending you gentle hugs.

Thanks so much GBear, it’s so kind of you to provide the info and your story. I hope you’re feeling well at the moment. You’re right it’s such a huge decision and also a very strange feeling at the moment - I’m going back and forth between being ok and then upset. I think from the initial conversation I’ve had that I’m very lucky in that it was only found in the polyps and I’m hopeful that will mean less drastic action. 

Appreciate your thoughts and thank you for the guidance xx

Thank you Fairy your kind words are really appreciated xx 

Hi Poppy,

welcome to the group, I'm 36 and had a hysterectomy last August, I don't have kids, we were leaving it to fate and were not that bothered that nothing happened. That being said now that the choice has been taken away from me I've been thinking about it more, I never asked about preserving my fertility before my op, but I've been told since that in my case it wouldn't have been possible. I do regret not asking before my op though, I was in a get this out mode lol. 

Good luck with your treatment and lots of love, also please let us know how you get on and what you decide to do.

Xxx

Hey Poppy,

Sorry to hear you've had this diagnosis, but I'm glad you've reached out to this site and have a good relationship with your doc.

Arla suggested I pop in to this discussion, as your story is very similar to mine!

I'm 36, coming up for 37, and in roughly October last year I finally got people to start listening to me about the menstrual bleeding I was having and it not being normal. I had an ultrasound and then a hysteroscopy, and the ultrasound found that the lining of my womb was 15mm thick and there was something growing in there. So on the hysteroscopy they took some samples of the lining and saw that I had 4 'juicy' looking polyps that weren't touched as she worried they'd bleed everywhere. They found that the lining of my womb was all showing as atypical, so I was booked in for a pipelle biopsy. They did this and removed the whole of the lining of my womb, as well as the polyps. When they tested it all, they found that the polyps had crossed over into actual cancer, while the lining was all atypical.

So in essence, I'm one step further down the progression than you are.

What you'll find when Ask Eve get back to you - because I called them too to check a few things - is that there is a new procedure for people at the stages we are. Where it used to be an immediate hysterectomy, they now are tending to go for suppression instead. This involves having the Mirena coil fitted, and then also taking oral progesterone as well. What these do, is tell your body you're not going to be releasing an egg, so there's no point in growing the lining. This works, because it's the endometrial lining where the cancer normally starts from - so no lining means no cancer/atypical cells.

You have this implanted, and take the pills needed for 3 months, and then they do another hysteroscopy to check the lining and see what's going on. They do hat every 3 months until they get a few clear results, then the checks are stretched to every 6 months, every year, etc.

By doing it this way, they no longer subject women to unnecessary major surgery, don't put them through he menopause, and it also preserves their fertility should they want to have children in the future. Because to have kids, they just remove the coil and you stop the tablets - have your baby, and then go back on everything again.

The problem is, it's a really new way of thinking, and not everyonein the country has heard about it and started prescribing it as a treatment method. But if you tell your doctor about it and ask they look into it, then they'll see it is a totally valid option.

So right now, I've had the coil in and I'm on the tablets. And I'll have my first hysteroscopy check in the middle of March to see what's going on in there and if it's working.

Hope that helps, and feel free to ask any questions you might have. I'm more than happy to help where I can!

Lass

xx

Hi Lass,

Thank you so much for taking the time to post (and arla for suggesting it!). I’m sorry it’s taken me a while to come back, it took a week or so for me to get my head around everything. 

Speaking to Tracey at ask Eve was so useful, as you suggested. 

I’m so sorry you’re having to go through all that but really glad to hear you have a plan and thank you for sharing the info on new treatments. 

Currently I think my consultant wants to do another biopsy in 2 months and we’ll make decisions from there based on the outcome. I’m hopeful I’ve been lucky and that it was contained in the polyps but obviously I want to make sure. 

Appreciate you sharing and wish you all the best in your journey xx