A life with Endo

Hi all I'm a new member and I already have a sense of relief being on this site by reading and able to share my story and not feeling so alone with this chronic disease.

I have suffered with endo for nearly 20 years and although I am very lucky to have a fabulous son (20 years old) I was unable to conceive again due to endo. I've had 7 operations some due to endo including a full hysterectomy. Although I had about 6 years of being almost normal after my hysterectomy I'm now been suffering again for the past 2 years because the scar tissue is round the bladder, bowel and maybe my kidneys. I'm having laparoscopy in two weeks and depending what they find open surgery after that. I've been off work since last November with a trial return February but I couldn't stand up to teach my students so I'm off again. I had steroids injected into my stomach last week to block the nerve endings and hoping for some rest bite from the pain but that hasn't happened. I'm very lucky that I have a very supportive family and friends but it's good to be in contact with women who can understand more because you are all experiencing the same. If anyone would like a friendly chat or advice please don't hesitate to message me. Hope you all have a good day. ☺️Thank you for reading my very long message. X

9 Replies

  • Hi Julie

    Please have a look at my posts on endo, specialists and post menopausal endo.

    How have you been diagnosed with scar tissue round your bladder bowel and possibly kidneys? Diid you have oestrogen replacement after your hysterectomy and how old are you now? I know your surgery is very soon but can I check that this is being carried out by an endo specialist and not a general gynaecologist. x

  • I'm on HRT Evoral Patches and my lap is being done by a gynaecologist who specialisers in endometriosis. I had scar tissue left round the bowel when I had my hysterectomy 8 years ago. Then last December I had an interal ultra sound scan which identified more scar tissue at the back of my bladder. The location of pain indicates that my kidneys maybe affected too. X

  • Hi Julie - what levels have your oetradiol levels been over all these years that you've been on HRT and is it oestrogen only? Can I ask how old you are? By scar tissue I assume they mean endo.

  • I don't know my oetradiol levels and the Evoral patches contain estradiol and norethistetone. I'm 43 and yes the scar tissue is endo.

  • Hi Julie - it sounds like you developed extensive post menopausal endo under the influence of HRT as I did and this can be very complex to deal with. I assume you have had regular oestrogen blood tests and breast checks and still do. The results will be in your medical records but presumably your consulatant knows what they are. Anyway as long as you are being operated on in an endo centre with a colorectal surgeon and urological surgeoon present you will be in the right place. But I assume you will be stopping HRT after this surgery. Good luck with it.

  • No they don't but I will asking for a blood test tomorrow. The doctor that referred to the treatment in Nottingham did mention about the HRT affects and yes they will review my meds after the ops. Thank you for all the information. Take care x

  • That's interesting that you have been seen in Nottingham as it was a Nottingham gynae that caused all my problems!

  • The Treatment centre is privately run although I've been referred to as an NHS patient. My problems caused by Derby Royal. After an emergency C section and I had injections afterwards.

  • Hi Julie - I'm not sure what centre you are going to as there are none in the Nottingham area but assume you have now located one.

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