Wits End

Hi all, I am new to this site and am looking for advice. My story is from 19 to 30 I had 9 surgeries for large ovarian cysts, Endometriosis, and adhesions. I had a full Hysterectomy when I was 26. After More years of pain and many stays in hospital my bowel Consultant invited me to have tea with him and told me the Gynae team had damaged my bowel and bladder and if I wanted to sue them he would write a testament for me. I declined but heaven knows why! Now after years of being on a mix of Oxycontin, Morphine and Tramadol I am still in great pain.

I have recently seen Mr George at The Christie Mcr who says my bowel and bladder is adhered to my pelvic wall , peritoneum and top of vagina and there is nothing they can do as if they operate I will end up with a stoma and in 6 moths time it will be stuck again! I also have to self catheterise several times a day as my bowel doesn't work properly. The nerve endings from my bowel etc have wrapped round the sacral and groin nerves and are excruciating. I cannot have intercourse with my husband as I have Lichen Sclerosus. I also have Fibromyalgia and am registered Disabled. I am 55 and all my adult l have been in hospital and in pain. It is all consuming and am finding it hard to accept I am going to be in this much pain for the rest of my life!

Has anyone got anything I can go back to the Consultant with....anything to help?

4 Replies

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  • Hi, I'm sorry to hear of your pain and suffering, sadly your story emulates my surgical history and post surgical problems as I too have undergone the same ovarian and hysterectomy surgeries with the same outcome. After many operations (30+) I'm currently undergoing sacrel nerve stimulation for the bladder pain. It may well be worth enquiring if this would suit yourself. My bladder and bowel are also stuck to the pelvic area. It's more common than we think amongst patients with endometriosis as this causes a sticky layer almost. Hence the adhesions stick. My colon has been removed so I just have my small bowel which is stuck hard and twists at times causing untold pain and hospital admissions for obstruction. I hope you find some comfort from knowing your not alone and wish you well for the future.

    Vickie

  • I gave endometriosis as well. My worst decision ever was having the Dr go in to remove it, the pain afterwards was much greater which led to a partial hysterectomy that has disrupted my entire system. My advice to any woman with endometriosis is to go holistic.

  • Have you looked into suppositories that you use rectally with valium lidocaine and gabapentin? Nerve blocks for identified nerves might help calm them down. Meditation and mindfulness to hero calm the neural pathways in the brain. You ilioinguinal iliohypogastric and genitofemoral nerves might be the issue. Have them blocked.

  • If I were you I would phone the Citizens Advice Bureau in your area and make an appointment with the person who deals with hospital negligence. They will advise you on how to make a claim. I think you still have a case as you could not for see how this was going to impact your quality of life and the daily suffering you have had and will continue to endure. You could also inquire if the doctor who offered to write a letter to you is still working and see if you can make an appointment to see him to request a letter. Keep in touch and good luck.

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