Entrometrosis & Adenomyosis

[Jella123]

Hi everyone Just wondering your views on having Adenomyosis and entrometrosis, I am 51 years old & never had children, I've been tortured with endo for years but only recently being diagnosed with adenomyosis, after being in awful.pain as four years & after seeing three different doctors before at last being diagnosed, I've tried the pill & digengest which didn't help , has anyone had relievevfrom anything Else?

[Brambledoggy]

I’m 53 now and never had children. I was post menopausal I think from about 48, periods erratic heavy and even more painful than usual, very many symptoms of peri-menopause. I just toughed it out (in retrospect should have got some hrt help at that point) and willed on my last period which happened at 50. I’m now on combined continuous HRT as my menopause symptoms were so dire. But no periods were a godsend. I had a couple of years of bliss and no pain but my endometriosis flares now and again and I’ve had post menopausal bleeding which I’m again trying to get settled with the right balance of progesterone and oestrogen. On a good day I feel wonderful on a bad day like I’m struggling. Menopause isn’t always the answer to endometriosis but it can give a degree of relief.

[Jella123 in reply to Brambledoggy]

Thankyou for replying, I think I'm pre menopausal but im still bleeding heavy, so I'm not sure if I am.or not, I've just had a pre- operative laparotomy & had a Minera coil fitted, im still reluctant to have a hysterectomy as sometimes this does not always work either& I don't think.mentally I ready for let that go yet but the pain is horrendous,

[Sunset-lady]

Exactly the same as you except I hemorrhage. I'm on zoladex x when it works it's amazing x

[Jella123 in reply to Sunset-lady]

Thankyou for replying is this the injections that put you in early menopause? I tried them before & it didn't work for me but glad it does fir you x

[Catskils]

My adenomyosis symptoms improved with mirena coil including reducing bleeding but it did affect my mood a little bit. It did take a few months to settle down. I'm not so sure the coil did much to alleviate the endometriosis symptoms and pain. I had it in for 2 years. Last year, at 45, I decided to have a hysterectomy alongside endo excision, adhesion removal etc. Personally, the hysterectomy was the best thing I did for adenomyosis. I do not miss the bleeding, pain and bulky uterus. Also not losing 3 weeks out of 4 evey month to symptoms anymore! Resolving endo can never be guaranteed but so far no signs mine has returned, confirmed by a recent mri. I kept my ovaries but am hurtling into menopause now 🙃 Hope the coil helps you. Happy to answer any questions on hysterectomy if useful.

[Marcia71]

for adenomyosis a hysterectomy will help. What’s tricky is whether pain is endo or adeno. If you do opt for hyster then having endo excised at the same time is the key to having relief.

I had a hyster as I had both at 43 and the lack of bleeding was amazing as my periods had got so heavy. But my endo wasn’t excised as gynae told me it would die off without my ovaries. It doesn’t work like that as endo produces its own oestrogen.

I’m on combined hrt - gel and utrogestan tablet. And that works for me and hasn’t reactivated endo. I’ve had 3 more ops since hyster to remove the endo.

[Fuchsiafairy]

I’ve got endo and adeno. So far 2 step treatments work best. So first I tried IUD after my surgery, which on its own was awful and gave me two terrible periods a month along with all the other cycle horrors to go with them. After 4 months I begged for help as post surgery was even worse than the position I’d been in before. So then we added desogestrel. After 2-3 months finally managed to stop my periods but still had quite a bit of pain and I could feel where I was in my cycle still.

In January I traded desogestral for Zolodex, still with mirena. I managed to go 6 months without adding in hrt. If I were to continue I would have requested hrt. Despite the obvious side effects I realised after the 3rd month that I had reduced taking pain meds compared to previously where I was taking max dose pain killers every single day. Currently taking paracetamol as and when. So whilst I sometimes didn’t feel like it was doing much and the side effects were huge, it was making a very big difference to my pain levels. Although the Dr did say I needed to try it for at least 4 months as with all these things the benefit increases the longer you take it. First two months were crap but really glad I made it as by the end of 6 months if they had said to keep taking, I probably would have said yes

However I’m just about to replace Zolodex with a tablet Zalkya - Dienogest. I’m very hopeful from what I’ve read, that it will improve things again. It is not a hormone blocker like the injections, so I think is better long term for things like bone health and muscle strength. I’ve pretty much got muscle atrophy at the moment.

I think Dienogest is marketed as specifically for Endo, and combined with the IUD fingers crossed for continued improvement.

Anyway, I hope this gives you something to think about and maybe talk to your doctor about your options.

X