help

i have had a recent hysterectomy through endrometerios and adhesions ..cannot have hrt for 6months they say to make sure it dies of but when the operated they find it outside the womb can this have spread as im having problems with my bladder and will it come back ..im none no wiser cheers x

and if men are now being diagnosed the not having estrogen is not gonna help is it

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  • Hi Elaine,

    A difficult time for you and I know only too well the problems you face.

    I had a radical hysterectomy for endo at 35, 5years ago and it hasn't helped the spread of my endo. I feel Dr's suggesting hysterectomies are behind the times are there is no proof this works.

    I had to go cold turkey for 6mths without HRT too and it's an awful experience, surgical menopause is evil. I had further surgery for endo 3mths after my hysterectomy and the DR's were shocked at how much endo I had.

    But after saying all this there is hope.

    I found a Dr in the UK who specialises in Endo, I had to pay privately but he gave me my life back. He performs a radical excision which basically skins you pelvic insides right back to the core. He removes everything insight regardless of whether its healthy or not. Then he fills you with liquid that remains there for several weeks to stop adhesions. You do look deformed for up to 4 weeks after but it stops any further complications.

    I had been in agony with endo when I had this and it even although the surgery was very painful I could feel the difference and couldn't feel my endo pain.

    Unfortunately my endo was severe and required another 3 ops by the same DR, but there was never any regrowth or signs in the areas he had performed previous surgery. The highest he operated was under both my ribs, which he said his highly unusual. I haven't had any probs in those area since not a niggle. I do have some pain still high under my ribs but no will is prepared to operate that high up, but i'm 95% pain free.

    I also started estrogel hrt which is lovely, I've tried soooo many and hrt can be evil on its own. Estrogel is a gel you apply to your arms 5ml low dose and its meant to be one of the kindest hrt out there.

    So basically you need a radical excision if you have future probs. And abstaining from HRT (personally) make zero difference. Studies show, endo produces its own estrogen. My levels of estrogen after my hyst were traces only but it still grew like wildfire. Your body needs estrogen and there are more probs without it.

    Take a look at his website for info, it may help... endometriosis-consultant.co...

    Stay strong through these difficult times xxx

  • thankyou thankyou thankyou so much i feel now as though it is not all in my head basically my doctor has just said get on with it but i feel this hysterectomy hasnt helped ...its just come with more problems every bone in my body now cracks its terrible ..thankyou for the advice aswell i will be looking in to it cheers once again as i dont now feel alone over 20 yrs ive suffered first they took my tube then 4 yrs later a full hyster with the cervix and appendix am im 37 ive had it since 17 ive just had enough now xxx

  • Hi Elaine,

    I can also concur with lornam regarding radical excision for endo pain, particularly stage iv extensive widespread endo. I had stage vi (endometrioma, bowel, bladder POD, diaphragm - bit of a mess and things not where they belonged). I saw the same surgeon in January of this year, had total peritoneal excision, temporary ovarian suspension and bowel shaved and have felt right as rain since with no endo niggles to-date (fingers and legs crossed!).

    He is my hero and I can't thank him and his team enough for their dedication. I did extensive research beforehand and looked into all treatments offered, many of which are often pretty temporary - but this made sense and so far for me it has worked well.

    I dont think I can talk about being cured as the trigger for endo is not toally understood and may well be different for individuals but it is ldfinitely the best longer term relief at present with statistics to support it. I am an enthusiastic advocate of radical excision.

    I get mad when I see what some ladies are being offered. for advanced endo. Unfortunately this is often relative to the experience/expertise of the consultant.

    All best wishes and hope you get the help you need and deserve.

  • Cheers for that i am at the min looking into it as i feel my doctor doesnt care

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