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[CLKD]

Dreadful news in recent weeks about how some women are being let down because the NHS doesn't support this awful condition.  MayB it's time to have a 'room' on the MM Forum dedicated to this for women who may be affected to seek advice and share experiences. 

One young woman has undergone hysterectomy and has two stomas due to not being believed that she had excruciating symptoms   

There is a small risk of reactivation of endometriosis with HRT use and any recurrence of symptoms should be reported.

If a hysterectomy has been performed for endometriosis, the choice of HRT use thereafter should be influenced by the extent of endometriosis at the time of the operation.

Since hysterectomy often causes a premature menopause, it is often advised to take HRT until the average age of the menopause; 51 years.

HRT after hysterectomy usually consists of estrogen only. However, in the presence of endometriosis, estrogen may cause stimulation of residual deposits and consideration should be given to using continuous combined (estrogen plus daily progestogen) therapy, or tibolone, though little research has been done on the effect of different types and duration of therapy.

Medical treatment of endometriosis often involves ovarian suppression which, along with ovarian removal, may increase the risk of osteoporosis.

See the Induced menopause in women with endometriosis factsheet

[Molly48]

Hi CKLD ,

My sister had a horrendous few years going back and forward to the doctors.  She was bleeding constantly, massive clots each time it was like a massacre every month . She ended up severely anemic and felt like she was dying until I asked her to call the doctors and get her ferritin results.  It was minus 8 and they hadn't even gave her iron. I got her to start taking iron straight away and within a month that horrendous feeling like she was dying at least went away.  But the bleeding continued.  She had a small fibroid on her uterus and that was biopsied but all came back OK.  She had scans ,ultrasound and they said everything looked ok but maybe a small bit of endometriosis.

Eventually the Gyn doctor  said needed a partial hysterectomy. She waited 1 year for the date of the surgery.  So she went in for the surgery in July expecting a partial hysterectomy.  Told it would be a routine surgery and all should be OK. Well 7 hours later she was still in surgery.  We were all losing our minds . Eventually we were toldthey had to perform a full hysterectomy as the endometriosis was extensive basically she was a mess inside.  3 hours after the operation she was in severe pain and sent for a emergency scan which showed her pelvis was full of urine. They had managed to slice through her bladder.  So rushed back to surgery for another 3 hours. She had a catheter fitted for 5 weeks and stents for 6 weeks. She is doing well now and will make a full recovery but mentally it's taken its toll. She is now 45 . Years and years of going to the gp and being given a pill to take and told its a heavy period live with it . She was literally bleeding everyday for years .

I am so glad she is okay but it was a very very scary time. Endometriosis is no joke!

[CLKD]

WOW! that's awful!!!!  It seems that as with menopause, this is an under-rated and under-diagnosed condition!!!!!

MayB if she wrote a book about her experiences without naming and shaming - similar to the Me and My Menopausal Vagina - she may find it cathartic?

[Molly48]

Thank you I will let her know about the book . X

[Sophya]

This really hits close to home. A friend of mine kept being told her pain was “normal,” and by the time someone listened, she needed a hysterectomy. They found severe endometriosis, and she’s now dealing with the aftermath, including struggles with HRT triggering leftover tissue.

What’s helped her the most is medical cannabis—this saved her from pain and inflammation without the side effects of other treatments. If you’re looking for options, check out Releaf. They have great resources on how cannabis can help with endo.

No one should have to suffer like this.

[CLKD]