On going

Hi, I was diagnosed with endometriosis in 1997 after 7 years, and finally a laparoscopy, I was given danasol, which put me through a early menopause, 3 years ago, after 15 years of no periods, I began to get the pains again on a monthly basis, I spent a year visiting the doctor,eventually i wrote down dates of the pains like a diary, but was told it couldn't possibly be endometriosis again, finally i was sent for another laparoscopy and, low and behold was diagnosed and treated for it, now I need to know more, how has it returned, doctors still insist it is impossible, has anyone else had the same problem?

1 Reply

  • There is no cure for endo. Any of the GnRH drugs and Danazol too pause the endo- never kills it, just makes it dormant until reactivated when you stop the drugs and the pituitary gland in th brain wakes up and then wakes the ovaries and other organs that produce oestrogen , and the endo feeds off that oestrogen and away they go.

    So a hysterectomy is not a cure either, because even without ovaries, HRT adds back oestrogen, the tummy fat around our middles is also a store for oestrogen, many of the foods we eat also encourage oestrogen production too.

    Therefore any endo cells which have not been surgically removed from the scene will always be subject to reactivation at some point in the future. For a while they might bleed but you don't notice - until that bleeding starts to irritate other nearby tissue or organs that the blood lands on, and those nerve endings start sending warning pain signals that they are under attack.

    Any doctors that insist endo cannot return are not up to date endo specialist gynaecologists. Quite likely they are regular, pardon the expression, bog standard fertility gynaecologists whose training is based on decades out of date information about endo and they really are not skilled or experienced enough with endo to be carrying out sugery on deep infiltrating endo.

    You need to ask your Gp to refer you to an endo-specialist surgeon next time you need an op. To make sure that they do a decent job removing all the endo they can find and giving you as long a break as possible before needing another op.

    Meanwhile taking steps to stop your periods is the best thing youcan personally do to reduce the chances of endo spreading.

    As another longterm option for stopping periods - i have the mirena coil installed and it is doing a great job so far. Comming up to 3 years since it went in, and after a wait of 5 months it stopped my periods. Not nearly as tough as Danazol could be hormones wise.

    so certainly worth considering as a next possible step too.

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