Years of endo pain & misery and now additional pain & worry as my uterus is attached to my bowel.

[wiltedandbewildered]

Hi, I'm new to the forum and would really appreciate any advice. I'm 48 and have suffered for years with endo. I've had a number of laparoscopies, excisions and D & Cs. 2 weeks ago, I had a diagnostic laparoscopy and the surgeon told me, I now have an enlarged, bulky uterus with adenemyosis and adhesions which is attached to my bowel.

I'm due to see him gain next week and he wants to talk with me about a hysterectomy (which terrifies me!)

My symptoms are: all of the usual nasty endo stuff plus lots of bowel pain and discomfort associated to my bowel: pain, constipation, swelling, bloating, excess & painful wind, bottom bleeding, feeling like I've got an elephant stuffed up my bottom etc etc.

I'm usually pretty brave but I'm feeling rather pathetic and fragile. I have a wonderful and supportive husband, family and friends but the reality is they simply cannot understand the misery and isolation associated with this spiteful disease.

I'm desperate for a bit of light at the end of the tunnel, so if anybody has any advice, guidance, wisdom, ideas for therapies or lotions and potions, I would be really grateful.

Very many thanks,

Marie x

[Tboag]

Hi I'm 40 and was diagnosed last march with adenomyosis and endo, endo was apparently excised and I had a hysterectomy for the adenomyosis in july, I recovered very well from my hysterectomy, but unfortunately I was operated on by a general gyne, and am still experiencing pain that we now assume is missed endo,

I'm now awaiting another laparoscopy with a bsge specialist,

If you are not with a bsge centre please be referred to one asap, general gyne often miss endo in certain situations and your hysterectomy will cure you adenomyosis but not endo, and your best chance is thorough excision surgery from a bsge centre, xxx

[wiltedandbewildered in reply to Tboag]

Thank you. May I ask if you had a full hysterectomy? X

[Tboag in reply to wiltedandbewildered]

Total hysterectomy overies left in,x

[wiltedandbewildered in reply to Tboag]

Thanks very much x

[JeanOsborne]

Hi I had a TAH, BSO and excision in March. I had adenomyosis ,11cm endometrioma in left ovary, right ovary was badly damaged and both tube were blocked. Bowel and uteras were stuck to uterus.

Had been suffering for nearly 30 before diagnosis. I don't regret having it done as I feel so much better. Bowels are 98% better than they were.

It was hard coming to terms with having to have the op as I haven't been able to have children.

At the end of the day , you must do what is right for you.

If you do decide to have the hysterectomy you need to make sure this is done at a BSGE centre by a specialist surgeon and that the endo is fully excised at the same time, otherwise you will not be any better off.

Good luck.

[wiltedandbewildered in reply to JeanOsborne]

Many thanks for taking the time to reply x

[missymo]

Aww bless you! Wish i could wave a magic wand for us all.our lives are truely in THEIR(docs) hands!! Very frightening& depressing.xx

[wiltedandbewildered in reply to missymo]

Thank you. You take care xx