Endometriosis - Removal of Ovaries (20 yrs of IBS diagnosis) still lots of back pain

by Sharon
(Poole Dorset)

Hi my story is long.......but I'll miss out all the mis-diagnosis over the years. In 2012 I was finally diagnosed with Endometriosis after 20 plus years of being told I had IBS. This was my first laparoscopy, where they removed as much of the endometriosis as possible.

It was on the back of my Uterus, back of my bowel and on the pouch of Douglas. I then tried the pill again to see if that helped the symptoms, but it didn't, just like it never had helped before.

I then returned to my Consultant and he agreed to remove my ovaries, after a 12 month course of Prostap injections that would mimic the ovary removal. These injections made a huge difference and it became clear that my pain would subside when my ovaries were switched off.

So.......after the ovaries and tubes were removed, I made a good recovery and I felt good. I tried the HRT to protect my bones, but the pain would return. So I stopped them. I have now experienced completely normal bowel movements, of which is incredible as I always felt like I had a stomach bug with loose bowels and bad digestion.

The very deep pain in my stomach that was so debilitating stopped and I was not so tired or exhausted. I could and still can eat whatever I like, where before my bowels were so fragile, everything would set them off. I often felt sick.

Now though, since Sept 2014, I have started to experience lower back pain that has progressed to pelvic pain and Sciatic type symptoms down my legs and around my hips. I can feel pain in my bowels at the same time, especially when I lay down at night. Sometimes the movements in my bowels are so painful, they wake me up.

I can only assume that with all the removal of Endo and the lesions/scar tissue from the ovary removal, I have tissues that are causing me pain. So after 2 years I am now off to the Consultant for a chat, to discuss the symptoms.

I feel so tired with the pain and although the Endo pain is not there, this pain is getting very strong. Just hope my insides are not too bad.

I am considering the autoimmune diagnosis for Endometriosis now and think that reducing inflammation in the body is probably the answer. As through the years of having the pain, reducing dairy, sugar and wheat have all helped at the time to make me feel a bit better. But keeping it up with a family to feed and cook for, was never easy.

I just hope that if my immune system is the problem, then please let the researchers find out soon, before we have more unnecessary medicines and procedures that don't really tackle the problem.

I would love to hear from others like me who have had their ovaries removed.