Help with Endometriosis at 58

Hi ,

This will be my 1st post ๐Ÿ˜Š , I was diagnosed with endometriosis in 2004 ..after having a hysterectomy for heavy bleeding .

Endo was found on bowl , bladder cervix ,fallopian tubes right n left overy..

I had full hysto..with just left overy removed ..

I had a good recovery and had 2 x3monthly injections of Zoledex ..which did the trick.

No return of endometriosis...althou I gave been on HRT ..

I was advised endo could return due to HRT .

Now in 2017 , I started with endo pain age 58 ๐Ÿ˜ฎ , had a pelvic scan and I have a complex cyst 6cm on right overy .

Now waiting to see gynecologist....should only be 2 week wait.

My question is any ladies on here at age 58 with endo pain ..

Or has endo ..

Thankyou for listening and sorry if it's a long post ..

5 Replies

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  • Sorry to hear your news. I was in a similar place but had my hyster at 42 and as endo not removed properly I was left in excruciating pain. Finally got to a bsge clinic and had surgery this March - two and a half years later and endo removed properly and bowel unstuck from pelvic wall and adhesions removed and adept gel put in to hopefully stop more adhesions/ scar tissue forming.

    I did have my ovaries out at time so I suspect they'll take you're remaining one now. If you still need HrT I was advised it must be a combined one to keep any endo at bay. I'm on Kliofem now.

    Best of luck.

  • Thankyou very much for your kind reply .

    I don't feel alone anymore , and your information has helped me with trying to understand ..whats going on with my body

    ๐Ÿ˜Š

  • I was only diagnosed for the first time at age 51, seven years after hysterectomy and removal of both ovaries. I was on oestrogen only HRT and developed the rare form of post menopausal endo associated with HRT. My HRT dose was very high and my oestrogen levels consequently extremely high - I didn't realise the significance at the time of all the blood test results as I knew little about endo then, being undiagnosed. My complex mass was very aggressive and 13 cms (thought to be advanced ovarian cancer from a remnant at the time). You don't say but I assume you are now past menopause (no periods) and that you are no longer on HRT as it must be stopped at age 51. So your endo will be driving itself by producing its own oestrogen, which endo can do very efficiently within its own cells by converting cholesterol in the blood - cholesterol is the base molecule for biosynthesis of the sex hormones. When did you stop HRT and what have your oestradiol levels been over the years?

  • Hi , again thankyou very much for your very informational message .

    I have been taking Hrt since 2004 , and still are .

    At 1st my Ostradiol levels were measured with the consultant who did the Hysterectomy, but after 12 months or so I was discharged from the hospital, all seemed good .

    What a have failed to say is I have been under the care of another gynecologist for last 13 yrs for urinary problems ,

    He too is aware on HRT ,

    I have had countless operations for incontinence, TVT , Sling and tapes , prolapse bladder..

    I'm still under his care .

    My gp has sent a letter with scan results

    And blood results , to the gynecologist who I'm am still under .

    Just waiting now for a appointment ๐Ÿ˜ฎ .

    It's me that is worrying if it could be Endometriosis, as I thought I was clear ..

    Just a matter of waiting now ..

    Thankyou

  • Hi ,

    Just a up date from my post above..

    I have been to see the specialist last Monday..

    Said he was encouraged that the ca125 was normal , but the test was only 80% ..acurrate .

    So I needed to have a Mir scan ..to determine what the cyst was .

    Apparently there could be a very strong chance it could be Endometriosis ( eeek )..

    As I have been taking HRT ...for the past 13 yrs and now 58 ..

    Now coming off HRT !!

    This afternoon the hospital rang to arrange a MRI SCAN ..date (next Monday) .

    Very happy not waiting too long ..

    The wait has been awful..

    I suffer with UTI ..every 3 weeks have done for the past 18months or so ..

    So much my body has become immune to most antibiotics..

    I also have kidney disease stage 3 ..so limited to what medication I can have ..

    This morning been to docs as I have yet another infection so feeling in a lot of pain pelvic area ...

    Think this site is wonderful ..just air your feelings

    Love Tilly

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