atypical hyperplasia with Mirena - provera?

I am waiting to go in for hysterectomy also having appendix out I am grade 1 cancer also got thickened thyroid gland in throat with a nobule on about an inch and half. So while I wait and have test I have been put on generic  provera side effects smelly wee increased fluids, wind sexy lol, a bit short tempered nothing else. 

I need hysterectomy due to cancer large cylinder  mass at base of womb, another mass some fluid , cyst in right ovary and various follicles also got muscle of appendix its filled with muscus and git bug things are pressing on my bladder so I am always going to loo I have severe pain in my stomach and hot water bottles are my friend 

Hi Vonnie

I am sorry to hear that you have been diagnosed with atypical hyperplasia. 

Atypical hyperplasia normally needs treatment as in some people, given time it has the potential to become cancer. So it is a thickened womb lining where some of the cells have the potential to cause issues. 

First line treatment is normally hormonal and involves repeat checks to see if there is an improvement. 

I) Mirena coil is put in place to release a type of progesterone directly to where it is needed. There can be side effects but for most ladies on here they do seem to settle. Provera is an oral progesterone medication and this means it can potentially cause more side effects as it is not acting just directly where it is needed. 

I can understand you wanting to avoid a hysterectomy if the mirena can treat the hyperplasia. I have not come across anyone on here who has experienced bowel or bladder incontinence as a result of their hysterectomy. It does not mean to say that it does not happen but in my own experience and time on here, I have not come across it. My own hysterectomy was in 2022 and was pretty straightforward and I have no long term effects from it. 

2) Provera and the alternative tablets can have side effects and there are ladies on here who have taken them. It is good that you are doing ok with the mirena and this may be because the dose may be lower and it is directly treating the endometrium rather than traveling through your body and potentially having a systemic effect. 

To be taken off the oestrogen would be expected and wise- the oestrogen could potentially contribute to the hyperplasia increasing and risks the atypia becoming more of an issue. 

3) There have been ladies on here who have had their cancer successfully treated by the mirena. It is only used in certain circumstances eg; to treat atypical hyperplasia/ precancer/ or a low stage and grade endometrial cancer. 

4) The vaginal swab from my understanding is something that is fairly new and the hysteroscopy/biopsy is normally done when an ultrasound scan indicates a problem. The current system used is a biopsy and/or hysteroscopy. The hysteroscopy is a camera test. The biopsy takes cells from the endometrium to see if there is any cancer present. 

It may be worth giving the nurses a call on the Support Line and talking through your medical questions with them. The Support Line is there from 8am-8pm daily. 

Hope this helps a bit.

Jane

Hi,

I had grade 1 endometrial cancer and am now cancer-free at my last biopsy as a result of the coil. It did take over a year though and I have been advised to keep the mirena coil in for now and have ongoing monitoring. So in my experience, the coil has worked insomuch I have no sign of cancer now and have now reversed to simple hyperplasia. However, it's my goal to clear the simple hyperplasia too - though there were only a few cells of this left apparently and my womb lining is now just over 3mm....

It may be different for others though and not everyone can get along with the coil. Some women just have the coil in temporarily whilst trying to lose weight but others, like me have it longer term if they are unsuitable for surgery.

You may be lucky in trying to reverse the atypia but there are no guarantees and it can return in the future, so ongoing monitoring is vital. Good wishes!

I'm on the mirena coil - but I am allowed oestrogen cream, I took tablets for 2 weeks before going on the coil as I was going on holiday and could stop taking tablets if I had bad side effects,  easier than having a coil removed. I came back from holiday a couple of kilograms heavier but whether this was water retention or eating more I dont know. I lost the 2k slowly.

Some people talk about an enhanced sense of smell as a side effect, some mention bleeding. Unfortunately my almost non existent sense of smell has not improved and I havent had any bleeding. I'll be going back for a hysteroscopy in a few months, after yours. I may have some extra wind. I slept well the first night on the pills but that unfortunately didnt last.  I already have major problems with fatigue, that didnt get worse and may actually have improved a little. 

People do seem to have their atypia reversed. The mirena delivers progesterone where it is needed and can therefore use a lower dose, less likely to cause side effects. You shouldnt need both. 

Thank you very much for your response. 

I am really surprised you are allowed the oestrogen cream.  You have atypia?  I was told I can't have it as they can't be sure whether there's already cancer present and oestrogen would feed a tumour. I don't know if the medics know what they're talking about sometimes though.  Do you get it from GP?  I  have some cream from previously.  Decided to start using it just twice a week but not sure if this is safe tbh.

Unfortunately I think my coil may have come out, so that makes me nervous of using the oestrogen at all.  Might have to stop it again until I can get confirmation re the Mirena.

since coming off HRT in June I have many hot flushes all day and night.  Terrible trouble getting any sleep.  Brain fog/pains in head (suppose that's my brain shrinking due to lack of oestrogen). 

I am going for this WID Easy test soon, I think it will become available on the NHS in time.  This will hopefully give me some reassurance about whether i'm already growing cancer in there.  They kept pushing me to have a hysterectomy, I hope I made the right decision to try the Mirena first,

I wish you all the best and hope the Mirena continues to work for you. 

Sorry I thought I'd replied but must have missed pressing reply. It's only a small amount of cream twice a week.  I havent used oestrogen before and I'm quite old so maybe they think the risk less significant. Initial diagnosis was hyperplasia without atypia but the biopsy of the polyp showed cells with the potential to become cancerous. 

I was told to go to gp for a coil check if I couldnt feel the strings, you could do that. I wouldnt use any oestrogen if I hadnt been prescribed it.

I hadnt heard of the WID Easy test before,  thank you for mentioning it. I'm due to go back in May and depending on what I'm told then I may pay for that test.

Hi, I think that the WID easy test is very expensive! Googled it and it was over £1,000, so I wouldn't be able to afford that on a regular basis...

i was told £500 in Glasgow, so it's worth checking your nearest clinic.  I won't be having them regularly, once a year maybe

actually probably every 6 months, it will avoid at least two hysteroscopies and general anaesthetics.  It is expensive I know.  My NHS gynae told me he knew about this test and thought it would become the norm for NHS at some point, wish they would hurry ujp.  WID easy test or a holiday, that's my options, so not easy for me to afford but for peace of mind and less intrusive surgery it is worth it to me.  

The problem may be getting the test without needing to see the gynaecologist first.  This clinic charge £450 for the test https://www.london-gynaecology.com/the-wid-easy-test-for-abnormal-uterine-or-post-menopausal-bleeding-and-endometrial-cancer/  so if I go for it I'll shop around and consider if a day return to a cheaper location would save me money.