Post menopausal endo?

[MiniTina]

Does anyone have any experience of going through the menopause and finding relief from endo?

My current GP wants me to come off the pill due to high risks at my age (I have been on the pill for 31 years - purely to keep endo symptoms at bay somewhat). They tell me that they won't know if I have gone through the menopause if I stay on the pill - I'm 46. But they don't have a support plan for me.

I'm scared of life off the pill, I'm open to considering a hysterectomy, but I know that isn't a cure.

I had excision surgery in 2007 to remove stage 4 endo, deep infiltrating, one of the worst cases many specialists in London had ever seen. I was told it would return, and my best bet was to stay on the pill - which I have done.

I just wondered whether anyone had any similar experience?

[curlyjo]

I'm not sure (considering the risks to you) why your GP would suggest this. The pill is preventing your endo from growing further and you were told to stay on the pill. So she is asking you to swap one set of risks for another. I had surgery for endometriosis and adenemyosis at 45 and they put in a mirena coil during surgery. This was to reduce pain and prevent my periods. I remember thinking this would get me through to menopause. But you can tell menopause symptoms without having regular periods. There are many signs and markers and most of the significant ones didnt happen til I was 50 eg hot flushes, mood changes, night sweats etc so I went on HRT which really helped. The average age for a woman to have menopause is 51 and is marked by your last period. You are considered post menopause a year after your last period. So I would say you may well still be having periods as you are only 46 and these could carry on for quite a few years yet. So your GP is in my view putting you under too much risk exposing you to periods again. When I had seen changes to my body shape from reduced oestrogen (HRT cant stop this) I had my coil removed at 52 and I was a little anxious and wondering if my pain would return. They offered to put in another but I felt I was ready then to be without it. Fortunately I was fine and no endo pain returned. But of course I had to deal with menopause and those symptoms and am now under the care of the hospital meno team (who are also experts in endo too). If your GP has concerns with you being on the pill has she stated what the risks to you personally? Is it purely your age or are there other factors? I wasn't allowed the pill cos I have migraines and a history of breast cancer on my mum's side. However the mirena coil was offered as an alternative and did stop my periods (which for me was key in preventing pain and spread of existing endo they couldn't remove during surgery). Have you been offered other options such as this? Your GP may not have enough knowledge of the risks to you of your periods returning and shouldn't be pressuring you. If you have no signs of peri menopause you are probably still having periods (if you weren't on the pill). So perhaps you could say that having periods return is not an option and as you are 5 years away from the average age of this happening, what alternatives does she suggest? You mentioned hysterectomy but that sounds quite an extreme thing to do when you are close to menopause now. Perhaps you could consider the merina coil? Or perhaps ask for a GP referral to a gynaecologist who understands both endometriosis and menopause. We all understand that balancing the hormones in women with endo going through this transition in life requires skill and knowledge so do ask for that help if needed. You shouldn't have to suffer or face the worry of it and there are safe hands out there. I hope you find them and get the care plan you deserve. Please let me know how you get on.

[MiniTina in reply to curlyjo]

This is exactly what I am fighting for - a structured plan if they will not continue to provide me with the prescription. I have no other risk factors, other than age. I am not overweight, I have no family medical history concerns and I am fit and active. I am currently going through the 'process' they want me to go through, which hopefully will lead to a referral, but they want some regular monitoring of my blood pressure first (my blood pressure has historically ALWAYS been on the low side, but with all this stress, it was a little high during my recent visit. Sadly my GP is a HE not a SHE (part of the problem) - we only recently have females at my practice, so I willy try and change GP if I have to. I have recently returned to a rural area where I grew up, so options to change surgery etc are very limited. Thank you for sharing your experiences though. I will be back to share how I get on after my next appointment!

[curlyjo in reply to MiniTina]

Thank you for replying and I do hope you get somewhere with this. It is so hit and miss finding a GP who has knowledge in both these areas. I once had a melt down with a GP (a very stoic older lady) in her surgery and this seemed to get her to listen 🙄. I hope you manage to get your gentleman doctor to understand the enormity of this and how anxiety inducing it is for you or at least you find someone who does. Yes, please let me know how you get on.

[Starry1977]

hi I’m 45. I’ve just recently gone back on the pill to help with my stage 4. I wasn’t allowed the combined pill but I was allowed the progesterone only. As far as I’m aware this carries less risks fir our age. Unfortunately though I’m bleeding every 21 days. I’m gonna give it 6 mths then consider something else if I’m still bleeding.

[Moonglo]

Hi, it doesn’t sound like your GP quite understands your condition. If the pill is working, why introduce an unknown risk to the equation? I suggest asking for a referral/second opinion if they’re very insistent.