Goodness gracious, what next?

Hi All

I am new here and new to endometriosis. I had ulcerative colitis when I was nine and had my large intestine removed and a pouch created. no troubles for years then about 5 year ago trouble started. I was in and out of hospital with Pouchitis so they said, but they never really knew. Interestingly looking back, I had an ovarian cyst removed at 17 and another drained about 8 years ago. Went into hospital in jan this year with excruciating back pain, legs, trouble going to the toilet. after three MRIs they found five cysts on rt ovary, and managed to partially drain two. they are chocolate cysts so they tell me I have endo. Could it have been this aggravating my intestines since the original ops? I am now on zoladex, Targinact, Gabapentine and paracetamol. The side effects from the zoladex suck but if I dont have it the pain is worse, I know this as my consultant failed to tell anyone or put on discharge papers that he had given me this. The second implant was three weeks late so had a massive flare up. Has anyone else had trouble with their consultant. This is the same one who drained the cyst 8 years ago. He says operating is too hazardous due to the previous ops but I am at my wits end and just want it taken out, the lot!

Im 42 so having children is now not an option. The consultant and my gp tell me this is my life now and learn to deal with it. Not acceptable!!! Has anyone been to St Thomas and Guys Endo unit?

7 Replies

  • did that post work?

  • Hi, it has done now - I've noticed that alot of new post don't go into the news feed so people don't see them.

    So sorry to hear that you have also suffered for years.

    Is your consultant a specialist in Endo or is he a general gynaecologist? You really need to see an endo specialist, ideally at an accredited endometriosis centre.

    Drug treatment alone will not, and cannot remove endometriosis - you need proper excision surgery at one of the accredited centres listed in the link above. Demand referral and don't take no for an answer. Just ensure that if yo do have surgery, that the endo is cut, and not burned or lasered, away.

    Also, if you have surgery, keep the ovaries. Your surgeon will most likely insist on this anyway - there are too many health risks associated with removal of ovaries prior to natural menopause.

    Endo really does have a huge impact on the bowel, many of us on here have alot of trouble in this area - me included. It's exhausting.

    Are you considering changing consultant? Sounds like you should.

  • Thank you, it feels so nice to hear others people's tales and get information on what may or may not work. I'm definitely trying to change consultant, my GP is really reluctant though but as you say I think it's demanding time now. It's hard now for me to know what is bowel related and endorse related! I have just gone into menopause thanks to zoladex and its exceuciating, my bones and joints ache terribly. Is this normal??

  • Hi. I have been on Zoladex and I had terrible aching joints. Others have mentioned it on here too. Another lady on here said that her doctor took her off the Zoladex because of her joint pain. I came off Zoladex after 6 months because I just could not get on with it; my blood pressure soared too. Some ladies rave about it being the best thing ever and some, like me, don't like it. Everyone is different. X

  • I don't know about the effects of zoladex, and whether that causes achy joints because I refused to go on it.

    I think a lady on here named Impatient is our resident expert on that side of things and she may be able to help you with zoladex related questions.

    You have a right to change consultant and to ask for a second opinion too - I really think you need this.

  • My story is scarily like yours. I'm 42, I had my colon removed as a child. Endo issues in my 30s and Fallopian tubes removed. I've been told it's to dangerous to operate and I'm pumped full of hormones and painkillers and yes they told me - c'est la vie!

  • Wow, it is scarily similar, where are you now with it? Are you feeling better? Seeing gP today to try and get referred to an endo clinic, there is one in London. He's really reluctant though, why do they not want to try and help us? My gP just keeps telling me to accept it and do I want to see a psychologist. Laughable.

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