Anyone with endometriosis and/or adenomyosis? Especially later in life?

[Picklemeyellow]

I am 50 and after suffering for decades with awful periods, a terrible digestive system, very painful ovulation each month, several years trying to conceive and years of anaemia I have just discovered I have endometriosis and quite severe adenomyosis.

I am really annoyed that I have only found this out only because I pushed for the tests due to my sister being diagnosed with endo in her mid 40’s.

I have had so many tests over the years which were probably all unnecessary (2 colonscopies, gastroscopes, 4 hysteroscopies, iron infusions due to severe iron deficiency……). I am genuinely upset that I have reached this age and been under gynae for years and not one gynaecologist suggested my issues could have been due to endometriosis. I’ve had so many years of awful gut issues which has held my life back and during my last appointment my gastro basically suggested it was all in my head.

Has anyone else been diagnosed with this? What has been you treatment plan and has it helped to ease any of your issues?
My regular gynae has referred me to the endometriosis team but he did say it could all disappear when I go into menopause?

I got diagnosed with adenomyosis late last year (aged 55) after a weekend of severe pain spent mostly in A&E where oramorph didn't even help. I guess I was lucky to have it diagnosed so quickly. In hindsight I'd had it for a long while but the symptoms were mostly mild (bloating and weird sharp pain in the evenings) so I just ignored.

I had had very heavy and often prolonged periods in the run-up to the diagnoses, so also anaemic. I'd already started on HRT to try to regularise things.

I had a hysteroscopy, biopsy and mirena coil fitted in January. That seems to have done the trick and hopefully menopause will happen soon (though I presumably won't notice, with the coil).

Do you think the HRT is helping? I read last night the hormones in HRT can aggravate endometriosis but good to know if it doesn’t as I would like to try it.

I was hoping to have a Mirena but I spoke to the gynaecologist last night and he advised against it as I had a uterine ablation last year and he said it’ll be tricky to insert because of the scarring. He has advised the mini pill and will write me a prescription.

I was diagnosed with adenomyosis and had a hysterectomy last year (aged 41)

https://www.mumsnet.com/talk/womens_health/4880151-adenomyosis-support-thread

I have adenmyosius, I can’t do HRT but they have me on Slinda a progesterone mini pill. I skip the sugar pills, I’m 48. My body rejected the mirina and I had a lot of pain. I still have low energy. I was told to have a hysterectomy or wait it out and it should pass So I’m waiting

itsgettingweird are you anywhere near menopause? My gynae said it will all ease post menopause and as I’m 50 now I’m hoping to limp along until that time. Tbh, I’m petrified of a GA and also care for my mum and run my own business, I just can’t afford to take lots of time off, I’ve heard recouping from a hysterectomy can take up to 3 months. How long did it take you?

Thank you Ashemark

Sydney1012 my gynae has just prescribed me the mini pill, I’ve got to pick it up later this week. I too am hoping to limp along until menopause.

Can you not have hysterectomy?
I had total hysterectomy for both these conditions.
I do have adhesions though.. on my bowels/ bladder/ intestines/ vagina.
Can't understand why your gynecologist didn't do a laparoscopy.. that would have caught it sooner... my daughter is 31 and has got it.. obviously too young for hysterectomy but because of hereditary she's trying to push for one... so so much pain.
I used to run an Endometriosis and Adenomyosis help group in my city along with the Well womens centre.

Diagnosed with adenomysis aged 35, after having 2 children, decided to have a full hysterectomy, been on HRT since, hysterectomy was in 2010. Best decision I made, my family was complete, I had horrendous periods before that, started at the age of 10, every month was a nightmare, I have 2 daughters and one is heading in the same direction as I did , bless her.

Digestivechocolatebiscuit this is why I’m getting more and more angry the more I think about all of my wasted years in pain and with horrible gynae and digestive issues. I’ve been under gynae since my 20’s and I have seen various gynaecologists and not once did any of them suggest that my issues may be due to endo.
My sister was diagnosed at the age of 44, she is now 48. She too has had years of pain and gut issues and the only reason her endo was detected was because she had emergency surgery to remove a mass on her ovary, which they were concerned was OC but when under they found it was all endometriosis. My mum is now 80 and had years of gynae issues too, chances are that she probably had endo. I’m now concerned that my dd15 may have it or develop it, she has very heavy periods, no pain though. Although I never had period pain but was in agony for a full week every time I ovulated.
I can’t have a hysterectomy just yet as I’ve only recently started my own small business, if I’m laid up for weeks/months I’ll lose income and clients. I’ll know more when I see the endometriosis team, my gynae said he’d refer me for an appointment asap. He said they will perform a lap to see the exact extent of it all.

likestoski my dd15 has awfully heavy periods, I’m going to get her checked out, I certainly don’t want her suffering as long as my sister and I have.

The thing is, waiting for menopause can be a very long wait. At 55 I was definitely peri-menopausal (at long last) but still having periods (albeit prolonged and therefore irregular). Now I've had the mirena coil fitted, I dont know what stage I'm at.

I'm not sure if the HRT has helped with the adenomyosis. I think it's the mirena coil that's made the biggest difference.

I would ask about zoladex injections, it would put you into chemical menopause and a course or two of that could see you through the natural menopause.

I had both and a hysterectomy last year and I wish they’d done it 10 years ago. I’m in my early 40’s and started having menopause symptoms in my 30’s. They hoped zoladex would see me through but sadly it didn’t.

I have it. I went into early menopause at 41 and started HRT which I’ve been on since.

My daughter started her periods at 15 1/2 and immediately heavy and beyond painful - straight to GP straight on t acid to absorb it and painkillers - worked for two months and then not so effective - she’s on the pill continuously now and it has stopped them. Waiting for gynae appt now should be 12 months. But she will be seen before 18.

I was diagnosed in my early 30's after TTC since I was 26. Had a mirena coil fitted age 37 once I'd given up all hope of conceiving.

My painful and heavy( flooding) periods stopped immediately and I haven't had one since. I'm now 53 and a big fan of the mirena - now on my fifth.

Started getting menopause issues ( hot flushes , anxiety and insomnia) when I turned 50 and when it got too much I started HRT and that has sorted most things out. The anxiety isn't quite sorted - I take magnesium glycinate and CBD oil to help
with that.

The mirena is now part of my HRT treatment so I've just had a new one fitted as it has to be replaced every four years if used for balancing hormones.

It seems as though the Mirena is a good option for endometriosis.
I opted for a uterine ablation last year, it is causing me a lot of extra pain during my period which I didn’t need, gynae now says I have Post Ablation Syndrome and I can’t have a Mirena now because of the scar tissue, it would be tricky inserting it.

I'm in my mid forties and recently diagnosed with Stage 4 endo and adenomyosis. I've also a fibroid outside my uterus and two large endometrioma cysts on my ovaries. Getting diagnosed has taken six years and multiple hospital admissions. I'm on the list for radical hysterectomy and can't come quick enough.

I'm in my 40s with endo. When I was ttc I went gluten free and it did help a lot with pain / gut issues and I would recommend. I don't go gf anymore but I'm on the Mirena and it's helped me a lot.

My energy is still low and I go to bed at 9.30pm most nights.

I can understand your frustration. It shouldn't have taken this long to find out. I hope you start to feel better now you know the underlying cause.

I bled for 2 years straight - coil didn't stop it - so had a hysterectomy at 46. They confirmed adenomyosis then, never been told I had it before and had had issues since starting my periods at 10. I was very upset also, all those years of pain, painful sex, dreadful bleeding, anaemia etc and there actually was a reason for it all despite the medical profession telling me to basically shut up and get on with it.
ETA: just seen your post about months off work - not necessarily, I had 2 weeks off then went back to work - the tiredness was hard and obviously I couldn't lift etc and had to look after myself but definitely didn't feel I needed to be off longer. Took about 6 weeks to feel more like myself (but without pain and bleeding, so better!)

happyasaseagullstealingchips it’s just terrible that women are allowed to limp alomg for so long with these health issues. My sister was 44 and a tumour was found on her ovary, the thought it was oc, turned out to be endo.

vincettenoir good to hear the Mirena has helped you, I really wish I’d been diagnosed earlier as I would have chosen that instead of a Mirena. I have been gf and dairy free for years, maybe my pain would be worse if not?

Peepshowcreepshow my job involves a lot of lifting as I’m a PA for a disabled client so I’d probably need more than 2 weeks off but hopefully not too long.