No history of endo and diagnosis out of the blue!

Hi all. I want to share my story although it is still evolving as I am waiting for a lap to determine the extent and spread of endo. It may have spread on to my bowels as I have had a lot of problems/changes with my bowels over recent months and these are still ongoing and am also still constantly weeing all the time!! This has all come out of the blue for me as I don't really recall ever having any of the awful problems a lot of you seem to have had historically. Mine started about 4 months ago with a bloated stomach, changes in bowel habits, really bad pains in lower pelvis ( that has moved to right side now) and nausea, loss of appetite, constipation, feeling cold and extreme tiredness. A recent scan revealed inflammatory disease most likely caused by endo and possibility of bowel endo etc.

I get pain most day and pain relief does not settle it. Hot water bottles are brilliant though!! I also feel so tired and unwelk although I am managing to work (just). Can anyone tell me what I am likely to expect next? I've had my child thankfully, he is 20, and I'm not planning any more. The doc that did the scan said about removing both ovaries or maybe having a a complete hysterectomy!! When he did the internal he touched a part that was so painful I nearly hit the roof. He therefore abandoned the rest of the scan.... !! Any help from you lovely experts that have been through this would be so helpful and reassuring. Thank you xxx

6 Replies

  • Hi - please have a look at my three posts on endo and its symptoms, post menopausal endo and hysterectomy and how to find a specialist. You are in the arguably lucky position to have this dealt with thoroughly at an age where it will hopefully be resolved as you enter menopause, however long off that might be. With suspected bowel involvement it really is vital that you are operated on by highly skilled and experienced laparoscopic surgeons in an endo centre.

    Can I ask how old you are and whether by any chance you have come off the pill recently?

  • Hi Lindle. Yes I was on the pill for many years with a break of 3-4,years and then I was fitted with the Mirena coil over 2,years ago. I still have this in now. Does this in some way add to the picture then? X

  • Hi - yes, it was coming off the pill that triggered mine as you experience the mid cycle oestrogen surge suddenly after having it kept down when on the pill. But it seems that doesn't apply to you.

    How old are you as this will effect your situation regarding a hysterectomy. This won't cure your endo so you will need a laparoscopy and as there is likely bowel involvement you should request referral to a specialist centre as the surgery is likely to be complex and you want the first to be the last hopefully!

    As an endo newbe take some time to look at my posts and I think you will be surprised with how much you identify with. x

  • I will be 45 in September. How do I find out about endo specialist centres?. I didn't know they existed. Thank you x

  • Hi - click on my username to find my posts - one on endo and its symptoms (that I think you will see a lot of yourself in), one on how to find a specialist centre and one on postmenopausal endo after hysterectomy/menopause. Are you menopausal yet? At your age you can consider having your uterus out as it is no use to you and can only cause you problems with what does sound like extensive endo. You could consider keeping an ovary as HRT is not recommended as it can reactivate endo.

    Have a read of it all then get back to me with any questions/concerns x

  • No I'm not menopausal yet thankfully. X have read the posts and very helpful. Wondering whether i have endo on bowel and poss bladder?? X

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