More endo found 6 months after a total abdominal hysterectomy. More surgery or not??

Sorry to waffle!

I'm extremely lucky as only found out in September after having a total abdominal hysterectomy (due to huge fibroids, thickened uterus and ovarian cyst embedded in bowel) that I had endo; and this was only found due to a heavy prolonged bleed which started in August ( Which was still occurring on op day) resulting in being anaemic All my organs were tied up in endo, which resulted in me loosing both ovaries, cervix, tubes, appendix the job lot! I was told id been extremely lucky to have conceived a child and had a normal pregnancy and delivery. A pretty fast roller-coaster ride!

Since the operation I've been left with considerable pain, cramping, abdominal swelling, UTI, along with alot of personal restrictions and frustration. I've had a Cystoscopy which was normal but still more UTI which very strangely clear up when antibiotics but labs cant grow anything? my main gyna, referred me to an endo accredited consultant who did an MRI which showed endo and adhesions, especially around bowel and vagina he wants to do a lap to remove these but it comes with risks to my bowel, and can't say it will improve my life either?

I've gone from taking no medication 6 months ago to taking naproxen, co codamol, zopclone, along with a combined HRT which both gyna says is a MUST cause of my age, and other risk to my health. Epson salts baths and my hot water bottle are my current best friends. My life has changed since the operation, however i lie awake most nights (even after taking all that medication) in pain wondering which way to go, and will a lap cause me more problems or will the endo continue to be my living nightmare? I'm afraid of the knock affect this is all having on my family and work and what comprises do you have to make in life for this disease without a cure. But worse being told there's a 1 in 7 chance it will be passed on in my genes to my children!

Really appreciate any advise.

Xxx

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  • Hey I'm so sorry you are in so much pain. I was diagnosed with endo 16 years ago & I've had 7 Laps two were done by an Endo specialist and I had the endo cut out and part of my bowel removed. Having the endo cut out instead of lazered was the best treatment form I ever had over the years. The endo has never grown back at that part. Like u I'm now having a hysterectomy in August due to now having adeno, poco & fibroids with the endo. My ovaries will be removed to try & prevent endo growing back. He is planning to cut whatever is possible at the same time to ad void re growth but he will never be able to guarantee. I've been in & out of hospital all year & it's had a major effect on my little boy. He is so scared all the time. I just keep saying I need to get well for the child I have. I would do the lap if I was you the pain hopefully will reduce & you can get back to your life Hope it helps x

  • Tjbear I really feel for you. I would go for the op because it can only get better especially if your not getting relief from meds. Thats just my opinion though you know how your body feels so go with that. big hugs xxx

  • Hi Tjbear,

    I was told the same thing re risks to my bowel when separating bowel from vagina. The doctors have to make us aware of the risks. I did find it scary but I felt I had no choice as the pain was damaging my life anyway so I went for it and it was all fine in the bowel department. I'd say his main concern is more adhesions. It's like being caught between a rock and a hard place. On balance I'd go for more surgery if you feel comfortable with your surgeon. What did he recommend or did he just leave the choice to you?

    Re the UTI, were you tested for e-coli?

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