Managing adenomyosis after menopause without hysterectomy, is this possible?

[CateyeKate]

I’m 53. After suffering from awfully heavy periods for decades I decided to opt for a uterine ablation in 2022, I was 49. I had been in perimenopause since around the age of 45.

Having the ablation proved to be a huge mistake as I ended up swapping very heavy periods for very painful ones (In retrospect I should have gone for a Mirena but turned it down due to negative online reviews). A year after the ablation I pushed for a pelvic mri and it noted endometriosis and diffuse adenomyosis. I was transferred over to an endo specialist gynae who said I should never have been a candidate for an ablation as a previous ultrasound just a year before the ablation did show a small area of adenomyosis - my regular gynae failed to mention this.

So I have limped along with very very painful periods each month since the ablation and not sure what to do as I had lost faith in the hospital tbh but the pain was getting so bad that I opted to go on a waiting list last summer for a hysterectomy, my pre op has just come up for the end of this month.

I am now having second thoughts for a couple of reasons, the firstly I am genuinely terrified of surgery, especially as I put so much faith in my previous gynae, asked him endless questions about the ablation which he even laughed about turning to his nurse and saying “Ah, this is the lady who asks sooo many questions lol!”. Laugh he did but the ablation did go wrong for me and I can’t guarantee the hysterectomy won’t too.

Also, the pain has now stopped. Over the last few months I appear not to be having much of a cycle and therefore no ‘periods’ (I say that because post ablation there was no bleeding but I still had a regular cycle). At 53 I think I am on the way to my menopause and eventually post menopause journey. I am loathe to go through such a big surgery when the only real reason was due to the pain which, hopefully has abated.

So I paid this week for a private MRI scan which has detected no endometriosis. The report stated bulky uterus with mild adenomyosis, no infiltrative plaques and no invasive organ disease. Also no avert features of malignancy. I am hoping my out of whack peri hormones are now settling and, hopefully also settling the adeno and endo.

I am also a very very anxious person and have been under a lot of stress over the last few years and major surgery will push my anxiety over the edge, I have been unwell thinking about it all since my pre-op appointment came through.

I have sent the images and report over to my gynae and hope to hear from him this week but I know that I genuinely can’t go through such a big surgery right now unless it’s essential and tbh, I don’t want to if I am no longer experiencing the previous awful pain, that was the only reason I had decided upon getting everything out.

BUT I am also an over thinker and worried that I may regret it.

Is there anyone on here who is now post menopausal with adenomyosis and managing it well without surgery and if so how do you do it?

Sorry you have had such a a journey.

To be honest if you are almost post menopausal, there is no point having a hysterectomy, is there?

Your womb lining (adeno is when the womb lining grows into the muscle walls of the womb) won't grow once you're post menopause. It's stimulated by estrogen, as I'm sure you know. So once your periods stop, that's it- it won't exist.

The ONLY reason would be if you experience bad menopause symptoms and then want to use HRT.

There are many women with endo and adenomyosis who use HRT, it just needs individual prescribing.

I have some adenomyosis and use HRT.

This is exactly the reason I've been holding off over the last few years, hoping that I would have gone into menopause sooner but it does now seem as though I'm on the full path to menopause and as I don't have any issues with prolapses or large fibroids etc I'm hoping my reduced oestrogen levels will lessen everything, I'm not sure if such major surgery would benefit me now, it will certainly not do my mental health any good!

I've also put off taking hrt as I have been concerned the oestrogen may kick start everything off again.

Can I ask how you manage with your oestrogen and adenomyosis? Has it caused you any issues?

An Hysterectomy will not stop it.
I am 68 .. scince being 28 l had PID...endometriosis.. and adenomyosis .. plus PCOS.. Had 28 surgeries.. l was first person in my NHS trust to have an endometrial resection ( now called ablation).l went on the programme " The Time and Place " with Anna Soubry in 1987 with other women with same condition.. we were all setting up local support groups.
Age 38 l had total hysterectomy.. scince then l have it on my bowels/ colon/ intestines/ bladder/ pancreas.. my surgeon even saw it on my Gallbladder 3 years ago when he removed it.. and bits on my liver. I am following the young lady who was recently on TV waiting for a lung transplant due to it being on her lungs. I don't know what the solution is.. but some people say it's like a non cancerous disease and spreads worse than Japanese weeds..
I am on weekly morphine patch.. but other than that it's a question of managing.. if you have already had ablation then at least you won't have periods.. that's the only good thing.. if a surgeon leaves even a teeny tiny bit.. it can spread. ( Lately it's been all over the media and women campaigning for time off work).. l wish you nothing the but the best and lots of love.. luckily and healing thoughts.🌹
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I only knew I had adenomyosis once I was using HRT (through a private consultant gynaecologist and had scans for other reasons.)

I'd never had any issues with adenomyosis (very painful periods in my early teens but they improved a lot and never any more issues.)

When I was using a strong progesterone as part of HRT (Norethisterone which is in patches or as a tablet) I had painful withdrawal bleeds. Now I'm using micronised progesterone and it's much better.

I've chosen to use sequential HRT post menopause (giving a withdrawal bleed) for various reasons.I have some slight discomfort but not much at all.

If you use HRT post meno you would normally use combined continuous HRT which is both hormones daily = no withdrawal bleed as the womb lining is kept thin.

It probably all depends on how extensive the areas of adeno are in your case.

@SuitcaseAndSecrets Does using progesterone every day not control the endo? If it's estrogen that causes it to grow, and progesterone 'combats' the effects of estrogen, is it something that's prescribed?
Or some of the drugs that cause a chemical menopause by blocking estrogen?

I don't know- I'm just asking.

Thank you.

I'm so sorry you are still struggling post menopause, it really is a nasty insidious disease. My sister has it too. My friend has lost part of her bowel and a kidney to it and is being treated for a heart issue which the surgeon now believes is linked to her endometriosis. My son's gf is only 22 but having her eggs frozen tomorrow, she took has severe endometriosis and adenomyosis. I don't understand why there is still such little understanding of the disease when so many suffer with it. My DD18 has issues with very heavy and painful periods and I am hoping and praying it's not endo but as it runs in families I fear it may be the case. I'm moving her over to my GP surgery tomorrow, I took her to another one 2 years ago and explained to the doctor that I was fearful DD may have endometriosis, the GP refused to refer her to a gynae and told me I was just passing on my own fears and experience over to my DD and there is nothing wrong with her (obviously this GP must have been blessed with x-ray vision!).

My endo specialist has told me only 5% of women still experience issues post menopause and I've been hoping and praying that may be the case for me although I live in fear it may not be. I am sorry you still have such issues. Has progesterone only not helped? I was hoping I may be able to try that to keep it at bay and avoid surgery?

Oh gosh I'm sorry to hear this.. same with my two daughters.. funny l have four sisters and non suffered ..although one had 13 miscarriages.. my Mum went through the menopause very early as did my sisters .. around age 46...l loved having HRT ( estrogen only) for the fact it gave me lovely skin/ hair/ nails etc and my libido went through the roof.. but unfortunately most sex was painful... so I've not progesterone.. l am now on estrogen cream to help with prolapse bladder.. vaginal endometriosis and UTI's. Looking back would l have had the hysterectomy? No l would not.. it didn't do anything .. It's really not the answer. X

Have you watched this? Was on last month.

British broadcaster Emma Barnett. She investigated the condition in the landmark BBC documentary titled Emma Barnett: Fighting Endometriosis.

I haven’t, thank you for that, I will watch it tonight.