I've never posted a question before; although I've replied to many. I never feel like my issues are that important, and I'm just so used to having to struggle to cope. Still, I'm feeling somewhat fragile at present...
I'm awaiting my FOURTH lap in March. Three so far have been unsuccessful in "taming" my Endo and its symptoms. The first just lasered away superficial Endo; but left other areas of deep infiltrating Endo present. Useless! The second located further areas of Endo, and the third was a radical excision.
However, I continue to have symptoms, which are REALLY debilitating. Chronic fatigue, chronic pelvic and lower back pain. Pain and tightness around my belly button, and surgical scars (as well as a nasty, "musty" smell from my belly button). Cramping, bloating, water retention, nausea, vomiting and diarrhoea... as well as my persistent heavy and painful (clotty) periods, with flooding if I move about too vigorously. Oh, joy!
At a recent appointment my Gynae Consultant agreed to my further lap, but with huge reservations. He seemed to indicate that he was not sure my symptoms would be relieved by the lap. He also indicated that there could be considerable risks, apparently because of where my Endo may be located. The feeling is that it may be on or around my bladder and bowel. I've certainly had it on my POD and utero-sacral ligament area previosly, and my last surgery involved ureteral stenting (catheters) because of the Endo proximity to my kidneys and ureters. My Gynae is saying that the risks of more surgery are very high. I suspect this is the last time I can have a lap. I have also been told that if it is on/through my bowel, the consequences are pretty major (resection + colostomy).
I'm somewhat freaked out by this (although to people about me I always seem calm - it's in my nature). Other than my hubby I have little support (my family were abusive in the past, and my mother has Bi-Polar, so family are NOT easy to talk to, plus always selfishly wrapped up in their own issues). Over the years I have grown SO USED to listening to and sorting other people's problems that I tend to just sort of cope with mine. Usually with grim determination and a heck of a lot of creative thinking!
Right now, this isn't quite cutting it. I just get the impression I do not know the full story with regard to my Endo. I can NEVER get a clear answer from anyone as to WHERE my Endo is/was, or WHAT STAGE. I go to appointments where they show me some pictures of it, and say they found it in certain places; then at other appointments, different pics, and different places. No consistency.
I feel it is difficult to get to the bottom of this. I also feel that the attitude of my Doctors may be deliberate, as in the past I have been misdiagnosed, and given no treatment. I have also been given incorrect medications, and have found offensive comments written in my medical notes (I am the lady who was told she could not conceive for years because of "anxiety"!). I was also bullied at work due to my symptoms, and need for time off sick, or to attend appointments. This resulted in formal complaints _ both against my Employers for bullying, and against my previous Gynae (now fortunately dead!) for negligence.
How do I get the facts, and make an informed decision? And how do I make sure that I am not constantly punished, or mis-treated for having complained in the past about negligent care?