I have joined this forum today but have been following a lot of your stories and posts for some time. This is my story so far...
I have had symptoms for around 7 years and after multiple visits to GP and various trials of pills, as well as the mirena coil I finally saw a consultant who took me seriously back in May. I had a couple of ultrasounds which showed two largish cysts and a blocked Fallopian tube (hydrosalpinx).
The Consultant booked me in for surgery to remove the tube, ovary and the cysts two weeks ago, and also an endometrial ablation.
I was taken down for the surgery, and when I came round, I was devastated to find that only the ablation had been done. They'd put the instruments in for the laparoscopic removal but found a large tubo-ovarian mass instead that was stuck to the bowel, uterus and pelvic wall. She was unable to carry out the removal of anything.
When she came to see me afterwards, she said that I would need a total abdominal hysterectomy, and removal of both tubes and ovaries. A couple of days later she sent a letter to my GP repeating the above information, and also stating that I would need a stent and a colorectal surgeon standing by too.
I was a bit scared by all this, but I felt that if this was what was required to alleviate my symptoms then I was prepared for that. I was asked back into the same surgeon's clinic yesterday to discuss this.
When I arrived, I was seen by a registrar instead who didn't seem that familiar with my case at all. He informed me that my surgeon had injured her shoulder and wouldn't be doing any surgery until January! I expressed my concern, as I was really hoping that I would be treated. He said that he would try to pass the case onto someone else for them to take on and I would hear from them in due course but he wasn't sure due to the complex nature of the surgery.
I was really upset at the prospect of having to wait even longer in my present state. I look and feel about 6 months pregnant, am in near constant pelvis pain and am exhausted after all these years - I'm sure that lots of you know how that feels!
Anyway, he then said that in the meantime I could have a Prostap injection, which may help with trying to shrink the mass which he said was endo. I had it there and then without really having time to think.
I have now read up a bit more on this treatment, and I'm not sure I like the sound of it it all. Woke up from a restless night with a horrible foggy head too. I'm due to have another injection in a month, when I really hoped that I'd be having the surgery by then.
I'm at my wits end, with many symptoms... Can't really do very much and feel very low with all this going on. I really feel that if the original consultant who did the failed surgery said I need a hysterectomy then that is what should be being put in place. Not being fobbed off again which is what it feels like.
I'm so sorry that this is so long! I just thought it might do me good to write my story down, in the hope that some of you may have had similar experiences, or even just to share your story with me.
Thank you so much. X