Hyperplasia with atypia

Hi LozMcD

Welcome to the Womb group.

I am sorry to hear of your bleeding and the time it has taken to actually have a diagnosis. 

Hyperplasia can be of different types but is not cancer. Hyperplasia simply means that the endometrial lining is thicker than they would like it to be and this is likely why you had such heavy bleeding.  Where it occurs with atypia it means that there is a higher chance, in time, in some ladies it could lead to a later cancer diagnosis. That is why you have been offered treatment. Its to try to deal with it now, rather than risk it becoming cancer in the future. 

The hormone coil is normally the first choice for this and it can work well. The progesterone will hopefully reduce the hyperplasia. it would be normal to have continued monitoring to check whether it is working. If it does not then there are still options such as a higher dose of progesterone - sometimes tablets alongside the coil. Hyperplasia can happen when the hormones are out of balance so the progesterone should help counteract the oestrogen. Although I understand losing weight is not that easy- it will help reduce the overall oestrogen. 

I can understand your worries about having children but the treatment that is being tried is to hopefully deal with the hyperplasia- before there is the need for considering a hysterectomy. Although a hysterectomy can be offered as a treatment for some ladies, it would normally be for ladies who are older and have children. The hormone treatment they are offering is sometimes offered to ladies who have actually gone on to develop early stage and grade cancer- to give them time to have children. Yours is still very much at the stage where they are trying to deal with the hyperplasia- in case it went on to cause problems later on.  

I would expect them to fit the coil fairly soon and then for you to be offered a repeat scan; biopsy in 3-6 months to see how it is doing. 

Fingers crossed it will work well for you. There are several ladies on here who have been on the same treatment as you and hopefully they will see your post and be able to share their own experiences. 

Do give the Support Line a call if you feel like it would help to talk it through with one of the nurses. They are there from 8am-8pm each day. 

Jane

Thank you so much! 

I am aware that it’s not technically cancer but when I heard abnormal cells it was quite scary and the gynaecologist did refer to it as pre-cancer. I hope it’s still okay that I have posted in here. 

I appreciate how much information was included in your response, it’s comforting to know that it doesn’t mean I won’t be able to have children. 

I’ve been feeling so low and deflated and scared I didn’t really know where else to turn to

Sorry to hear of your experience to date, it must have been so difficult for you when nothing was being done. You’ve done the right thing in reaching out here, and as Jane says hopefully some other ladies who have been through same treatment as you, will be happy to share their experiences with you. Wishing you all the best for now getting this sorted. 

Absolutely the right place to post. And please continue to post here whenever it helps. Yes- hyperplasia atypia is a pre cancerous condition- that is why they want to treat it- just in case it could become cancer in the future. It is scary but hopefully with treatment the hyperplasia can be treated and then having children may well be possible in the future.

The hormone treatment is sometimes used for ladies who have an early stage and grade cancer to enable them to preserve their fertility for a while to enable them to have a child.

There have been ladies on here who have endometrial cancer and have been using the coil and the cancer has been reversed. 

That's really positive thank you so much 

Hi I'm so sorry that you're going through this right now, it can be very stressful getting such a diagnosis. 

My experience is a bit different to yours. But please don't be alarmed! I was diagnosed with hyperplasia without atypia last year after a hysteroscopy on the back of an urgent referral after an adnexal cyst was found on a non gynae related MRI and had a TVS.

Already having endometriosis,I was frustrated at having another gynae diagnosis as wanted my endometriosis dealt with. They told me I had a less than 5% chance in 20 years of it becoming cancerous and was placed on hormonal tablets. I declined the mirena coil due to previous bad experiences and didn't feel it helped my symptoms. I am overweight but was never told to lose any weight and with the stats I was given, cancer was not on my mind at all so when I got the diagnosis of endometrial cancer I was very shocked. Unfortunately I didn't have a lot of options due to progress on hormones and due to my single status.

You may wish to request to be referred for fertility to keep your mind at ease but since you have your diagnosis they well be on top of it to treat it and will monitor it often with biopsies and amend your treatment accordingly as necessary. 

Wishing you all the best!

Hi, 

I hope you don’t mind me responding to you but what you have been through is so similar to what I am going through now. 

Firstly, I am so sorry to hear you are going through this too. It’s an awful time and there are no words to how worrying and terrifying it can be. 

I was diagnosed 2 days ago with severe pre cancer and the possibility of invasive cancer already being present. I have been referred for an urgent MRI to confirm this. I am also a similar age to you at just turned 34 and also have a desperate want for children. So I really felt your post touched me in this regard and I hoped by reaching out we could provide some support to one another? 

I hope you are doing ok as I realise you posted this 6 months or so ago and I hope that the hormone treatment is working for you? 

I was also fobbed off by my doctors initially. I feel we have a very similar journey so please reach out if you would like to talk.

Take care, Frankie x 

Hello, 

I'm sorry to hear that you're also going through this. It really is such a nasty thing to try to deal with. 

I have been on high medroxyprogesterone dose since I made this post (200mg a day). I was supposed to have a biopsy 3 months after the initial diagnosis, but I had an infection which meant they could not complete it. So I had my first biopsy since diagnosis 2 weeks ago, just waiting for the results of this before considering the next steps. 

If the medroxyprogesterone is working then we won't need to fit a coil, but if it is not then I will need another hysteroscopy and they will fit a coil there while I am numb. 

I wanted a referral to fertility but they will not, they said my BMI has to be between 19 and 30. However, because I have PCOS my free testosterone is 16, when it should be 4. Meaning that I am really going to struggle to lose weight. 

Such a nightmare 

Happy to talk if you need to

Hi,

Thank you for responding to me. 

We seem to be very similar with age and what we are going through. It is a comfort to speak to you and others on here, it makes it feel a little less lonely. 

I have been recommended the coil but feel I would prefer the tablet version but I was advised due to my cells being severe I would need such a high dose of it that the coil is the best option. I am anxious about having the coil fitted though. 

I also like you wanted to speak to fertility but I have too high of a BMI to be seen or assisted through this route at the moment. It is so frustrating isn’t it but I am going to go on to mounjaro soon which I hope will help to get to a weight where they will help me. 

However also like you I have also been diagnosed with PCOS last year and as you said, it makes things more difficult :( 

I wish you all the best for your biopsy results, keep me updated :) 

I am now just waiting my MRI appointment.

Take care, Frankie x

I will say with everything I’ve looked at the coil is probably the best bet if it it enhanced, it delivers the hormone directly into your womb and you don’t get the side effects that you can get with very high doses of progesterone. 

I would have had the coil at my last biopsy but the biopsy itself was too painful so I said no. I have had the coil previously though and while the insertion was painful if I had to have any birth control in the future that would be what I chose 

obviously this is just my experience and it’s your body your choice ️