Mirena or Hysterectomy?

[AJenn]

Hello, this is my first time ever posting so this is probably going to be too long.

I’m 45 I’ve had endo since I was 24, though only diagnosed in 2018.

I had a Laprascopy in 2018 but then had a rocky road with ivf, depression, Zoladex, Ryeqo. Treatment after treatment that helped with one thing but then brought other issues and more depression.

The last 2 years I felt I just couldn’t function. I was exhausted like wading through mud. Could only walk a few thousand steps a day without complete exhaustion.

April last year I had another Laprascopy. It did help somewhat with issues and tiredness all month but the 7 days of my periods are still awful- pain, brain fog, swelling, issues with my legs, dizziness. Feeling like my whole lower body is caving in on itself.

I just honestly don’t know what to do. I just missed another 4 days of work. It’s just untenable.

Given my mental health history I’ve been nervous of Mirena, or maybe a hysterectomy is what I need to be thinking of now.

I don’t know what’s best.

Thanks

Amanda

[Elaine91]

Hi

Sorry you're having a horrible time and I don't have an answer, only that it's best to try all avenues before agreeing to something permanent.

Best wishes

[EndoDolly20]

Hi, bless you. What a rocky road. I can totally sympathise and understand exactly how the 'walking in mud' feels. Pretty much my life also! If I were you I'd have a good chat about your options with a gynaecologist or GP, it's a tough decision. I hope you also have a good counsellor that you can use and some good friends/family.. endo makes life so hard. Wishing you well.

[fearsmarrow]

Hi

I can't help but I can empathise - Have you considered some of those symptoms being peri menopause in addition to all the existing issues - you don't mention about hrt.

It doesn't help fix it or give you a solution but it's just another factor to consider in the decision.

I'm 43 and my peri hit at 38 (obvs took til last year for anyone to believe me - luckily (?!) everything dried up and they had to help me due to utis! I know hrt makes things worse for some people though

I'm having a hysterectomy next month due to pmdd, endo, adeno, i've tried everything. Zolodex, hrt and citalopram have pulled me out of a similar place to where you are now. I had 8 weeks off work last summer as I couldn't walk at all, i've managed with only a few days off after the injections so far. But i had to get a private consultation and pay myself. The nhs did not take me seriously at all.

I had a Mirena 2 years ago and it just made everything worse, so much bleeding, then it shifted when i super bloated one week and i was in so much pain for several weeks before they removed it after i begged for an ultrasound.

[AJenn in reply to fearsmarrow]

Thanks, sorry to hear what you’re going through too.

Yes I guess it’s a possibility at my age. I haven’t noticed any hot flushes or anything.

So hard to know what to do next. I think I’ve just given up with NHS GP. Most of the time I feel like I go for help and tell them about things I’ve researched rather than them helping me. I think I’ll have to go back to the Consultant and see what is suggested.

[Sunset-lady]

I was in a similar position to you. I was bleeding all the time. I had a large fibroid removed and then had 5 more six months later. Waited a year for hysterectomy only for them to discover stage 4 endometriosis and abandon it. Then a stint on synthetic progestin Provera which made me very ill. By that point I'd been referred to a specialist endometriosis BSGE Centre but the appointment was 9 months away so I went private and saw him the following week. He took me off Provera and onto Zoladex with addback HRT. I still bled a lot but it was manageable until it ran out. I limped along for 14 months and then out the blue my consultant offered me a hysterectomy as zoladex had shrunk everything. It would have been a 10 month wait and I just couldn't do it so I went private 4 weeks ago. I had robotic surgery (which I'd strongly recommend) and I feel amazing. I felt good on zoladex which is a clear sign you may be suffering from PMDD. I feel great now - no bleeding and no pain. I'm on HRT both estrogen and progesterone to manage the endometriosis as I'm worried it'll return and I eat a low inflammatory diet. There is another life out there if you push for it. My hysterectomy was very complex but with the right surgeon you can finally get your life back. Xxx

[AJenn]

Thanks so much. This sounds horrendous but I’m so happy to hear things are better- gives me hope! I definitely consider what you said about the robotic route.

I follow Kat Smith on tic tok, she’s a endometriosis nutritionist and sufferer. She puts out lots of information about diet and supplements that’s interesting.

Xxx

[Gundula1]

I hesitate having the mirena for similar reason as you. But it's worth considering that the coil is reversible, a historectomy not.Mirena seems a bit Marmite, some think it's amazing and it gave them their life back, with others it seems to make things worse.

Good luck!

[AJenn in reply to Gundula1]

Thanks. I know what u mean and it’s a fair point. I keep hearing from people that the hysterectomy has been such a relief, I just wonder if at my age whether it’s worth trying Mirena and risking it. Xx