experience with peri menopause?

[Ebdex]

Hello everyone,

I am wondering what to expect being peri menopausal with endo. At a recent meds review it was mentioned that often a flare in symptoms is experienced during menopause. Had anyone found this?

[Sunset-lady]

Hi my endo flared with peri menopause. I had terrible back pain that came out of nowhere and lasted years. I became depressed, paranoid and had excruciating periods that felt like I was on fire. Sex hurt again and I experienced extreme tiredness and brain fog - I couldn't have business conversations any more as I couldn't recall words. I worked in training so it was awful. Then I started throwing up with my period, cold sweats etc exactly like being a teenager again. I cried all the time. I had 12 blood tests over 5 years and not one doctor mentioned peri as my periods were regular. I went on HRT at 47 and it was great at first but then I got fibroids and began to hemorrhage. It has been an awful journey for me. They tried to do a hysterectomy and found endo had fused it all together so that'd when I was diagnosed at 50. I'm on zoladex now waiting for menopause so the bleeding might stop but I'm not sure it will x

[Marcia71 in reply to Sunset-lady]

Unfortunately menopause rarely helps endo or adenomyosis which you may have too as that causes heavy bleeding. If you endo has fused things together then it’s pretty bad and zoladex may not help as the endo causes its own oestrogen so keeps growing. You need referring to a specialist. In the U.K. that’s a bsge specialist centre.

[Sunset-lady in reply to Marcia71]

I am already under a team of endometriosis experts- I was referred after the abandoned hysterectomy. They were the ones who put me on zoladex. Apparently I don't have adenomyosis (last MRI) they think I'm bleeding due to multiple fibroids embedded in the walls of the cervix. Zoladex does stop the bleeding but I am aware that endo creates its own estrogen. However I'm not in any pain now and when they've looked at my MRI scans they've said the endo us "not active" it's just lots of lesions now fusing it all together. It's stage 4 of course but they don't want to operate. I see them next month so it'll be interesting to see what they suggest.

[Marcia71 in reply to Sunset-lady]

I’m really glad you’re with the right team and hope they can help. When endo is classed as not active then often it’s deep e do and caused all the fibrosis that’s stuck everything together. I’m glad zoladex is helping you. Everyone has different experiences and it made things worse for me. Hopefully the team will offer more options for you to consider when you see them next month. With the right team a hysterectomy will still be an option but yes it will be a complex and long operation.

[Sunset-lady in reply to Marcia71]

Yes, I'd probably need a bowel resection which I don't want. I think more research needs to be done on why and how a lot of women manage to "turn off" endo at certain parts of their lives. I think I managed this for a good part of my 30s. My lifestyle was good. When I took a stressful job in my early 40s and dealing with my mum being ill it all starred up again. Stress and inflammation, diet, exercise and sleep all have such a huge impact. The endo is always there but for a lot of women we manage to turn down the symptoms for good chunks of time. A lot more research needs to be done around HRT and endo too. Good luck with your journey x

[Brambledoggy]

Me. Really similar experience. My private menopause doctor told me that the worse your periods were, the worse your menopause will be. I wish I had sorted out my hormonal balance DURING peri-menopause rather than waiting 2 years after my last period. I just suffered in silence till my menopause symptoms were so bad I went on continuous combined HRT. Had a few wobbles on it but things seem to be balancing out for me now. I’m not particularly optimistic as things have been absolutely dire for me all my life with endo but I try and remain optimistic. Peri menopause is THE time to get all your ducks in a row. Diet. Exercise. Mental health. Hormones. Self care. Relationships I was in an absolutely vile relationship during peri menopause and 13 years prior, and had no time for myself at all. I just had to survive. I’m out of it now, live on my own with my dog and for once in my life I’m putting ME first! Survivor and Thriver! Good luck.

[Marcia71]

it’s hard to know but my menopause has been awful. I had a hysterectomy at 43 due to endo and adenomyosis and I had ovaries out. My endo wasn’t removed and so I had worse pain. And then menopause as well. You need continuous combined hrt and I wasn’t given this at first.

It took a long time to find the right hrt balance and combination for me. I also needed anti depressants to improve my mental health. I’ve found counselling useful too as I was so angry about endo and what it and surgeons had done to my body and life.

My advice would be keep talking to medics but also do your own research too and find what’s best for you. Good luck.