Endometriosis killed my kidney!!

I've had a pretty crap time over the last 3 years went in to hospital for a lap to see. If I had endo, turned out to be riddled with it so got refered to a higher consultant that could deal with it as my ovarie was stuck to my bowel. So went in for another lap turned out this time they found I had a problem with my left kidney they tried to put a stenth in but this was unsuccessful. After several tests and eventually a CT scan they discovered my left kidney was not functioning properly so I had to had a nephrostomy tube fitted, I lived with is for 3 months until they decided if my kidney could be saved unfortunately the endo had got a full grip on the tube to my kidney eventually we found out it had a 7 percent function so it had to be removed in March last year. Still suffering unbearable pain at the end of June this year I have had a hysterectomy I took 10 weeks off work and I am currenty on a phased return. I still get real funny pains in my abdomen. I keep reading about the disability bits and bobs and wonder if its worth looking in to further although had hysterectomy they still say you can have endo for the rest of your life. Any ideas anybody? Xx

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  • Hi shell123,

    Sounds like you've been through the ringer, you poor thing. I too have read on here and on other Endo info sites that you can still have Endo after hysterectomy, I think its something to do with the follicle cells in your body (sorry brain is a bit foggy today) but you should read up about it to make sure.

    Check out: endo-resolved.com/hysterect... ......this site has blogs by women who have had hysterectomy and their experiences. There are many others, though.

    As for disability and work, you could claim DLA (which has now changed to PIP) but you still have to meet the criteria.

    You can check this out on: gov.uk/dla-disability-livin...

    Wishing you all the best

    Take care x

  • Hi - really sorry to read what you have been through.

    Unfortunately a hystectomy only really helps if you have adenomyosis (endo in the uterine muscle). It also helps for other gynaecological conditions such as heavy menstrual bleeding, fibroids etc. However, as you have discovered, endo is a disease that can affect the whole peritoneonal cavity and can be widespread. The top endo consultants no longer advocate a hysterectomy as a sufficient treatment for endo (unless you only have adenomyosis). Where a hysterectomy is performed for adenomyosis, they recommend that that any peritoneal endo must also be excised at the same time for the best outcome.

    Dr David Redwine, one of the top US specialists, says that once endo is excised it generally does not cause any further problems. He says the reason ladies go back for multiple surgeries is simply because most surgeons do not remove it all and it is this endo that is left behind that can continue to cause problems in the future, rather than a recurrence of that which was removed.

    I had widespread extensive endo and underwent 'total radical excision' of all endo and that was coming up for 3 years ago and it certainly sorted me out and no signs of endo to-date.

    You may need to discuss this with your consultant if you find over time you continue to have further signs of endo pain. I would suggest you ensure he is a specialist endo consultant surgeon, rather than a gynae consultant, and get a referral if need be to a centre of excellence for endo. Too often we get referred to whoever is at the local hospital whichcan be a bit of a lottery as far as endo treatment is concerned.

    All best wishes x

  • Re the kidney.... You have all my sympathy. Both my kidneys and their tubes are affected too. I had my kidneys cut out from my peritoneum back in November. The surgeon gave me a photo of what he found, and it is gnarly.

    Do you mind me asking about the kidney pain? Can you describe the episodes?

    Its just that I don't know whether the hideous, crippling pain I get since my op means that my kidneys are irrevocably damaged or whether I have something else, such as kidney stones.

    Thanks for any info/advice,

    Tea Cosey xx

  • To be honest I didn't know it as my kidney as such I had pain on my left kept fainting feeling faint and being quiet sick lost a lot of weight and the colour in my face was white with green tinge to it. The pains I did have were on my left hand side at the top of my pelvis all very strange. I was still visiting the toilet normally ect. Hope this helps xx

  • Thanks hon xx

  • Thanks for the support guys, I know what you mean about seeing the right consultant I paid Bupa for a consultation in the early stages and got told I had IBS, it was only for the fact my own GP said "I don't think so" that I got better care. Went for my follow up appointment yesterday 11 weeks after surgery told him my stomach still swells and I keep feeling dizzy and sick he told me some people heal differently and discharged me , told me to come back in 3 to 6 months if nothing changes. Brilliant doc he was ( it wasn't my original consultant) xx

  • Wow it sounds like you have went through a lot. I too have been having major problems. I can't seem to get any doctors to listen to me. I have been having female pain, kidney, bowel problems, bladder problems too. The pain is intense. Especially at night. I have had female pain in female organs for two years and my kidney for a year. I recently went to the female dr and she says she thinks its endometriosis. My concern is that it is endometriosis and it has spread to these other places. She put me on birth control to see if it helps but so far it hasn't helped. Is doing a scope the only way that they can find out ?

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