Endo making life hard

Hiii everyone, I am new to this page && just writing for some sort of help! I'm a renal transplant patient & 24 years old .. My renal side of health is perfect but have been diagnosed with early stages of endo.. For 3 years now I have had chronic left abdominal pain, which is now a lot worse.. For the last 2 years i have had recurring UTI. Last week I was in hospital for 5 days due to this.. I hVe horrid periods & have now been on since August

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  • Dear Nosh123,

    I am sorry to hear you are suffering so greatly.

    I noticed that you haven't as yet received a reply from across the community so I thought I would write to you with some information that may be of use:

    Endometriosis Treatment (this includes pain management options)

    endometriosis-uk.org/sites/...

    Pain & Symptom Diary (this might be useful to note down symptoms ahead of a specialist visit)

    endometriosis-uk.org/sites/...

    The British Pain Society

    britishpainsociety.org

    You mention that you also have experienced UTIs, so I am sending you some information on endometriosis and the bladder:

    endometriosis-uk.org/sites/...

    endometriosis-uk.org/sites/...

    I wish you well.

    Take care,

    Simonetta

  • Hiya , How are you? I am a kidney transplant patient too. Aged 37 just - had transplant 6 years ago. Found out I have stage 4 endo and in terrible pain but kidney seems to be coping v well. I too have had repeat UTIs and this has resulted in septicaemia three times as is resistant bacteria. I am immunosuppressed and steroids for transplant and I was told this contributes to an inability to keep the endo in check. Also found my tube on right doesn't connect to my uni cornate womb and contains a hydrosalphinx with a huge chocolate cyst and now both ovaries affected. The masses make up 24cm. My bowel also squashed and perhaps affected and ovary near to kidney. I have not been told of any ongoing condition but reading up myself a full removal of womb, tubes and ovaries sounds like it wouldn't be a cure?! To be honest I haven't had much explained. Just told to make a decision of whether I want to go ahead with the operation or not and I have seen three different doctors. When the situation is complex I don't feel this has helped. The CNS was supposed to collect info and get back to me but she hasn't in over 2 months and this is an endo centre. I have been through and may need peritoneal dialysis again and worried this will have affected by peritoneum by reading up. Please can someone help advise me? The not knowing is panicking me. I am bed bound in agony most of the time now and have no quality of life or energy. I want my new life back. I feel more restricted and trapped than when I was in kidney failure. I am worried about having my ovaries out on the rest of my health as my bones aren't good due to being severely lactose intolerant until I was 6, then I had hypoparathyroidism when I was in kidney failure that damages your bones, I am on life long steroids for transplant. I do not want to have surgery to induce menopause and risk bone health further. Also my heart has a small murmour due to small hole but was told this wouldn't affect me in life but no ovaries is supposed to be thought to lead to a decline in cardiac health too. What should I do I feel trapped between the devil and the deep blue sea without a helpful option left for me. I am so tired. Hope you got sorted and feel better??x

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