I'm 4 weeks post-lap right now, and I haven't been here for a while due to the fact that I was just exhausted with the subject in general.
My history (as brief as I can be, which isn't very...): I struggled with period pain from the start, heavy bleeding, then rupturing ovarian cysts, then 8 years ago diagnosed with endo when a failed lap procedure-turned-laparotomy produced excision of a chocolate cyst on my left ovary, and ablation of lesions. I had a subsequent laparoscopy scheduled which again went to laparotomy 8 months later, largely because I didn't know anything about the disease, didn't know I could find a doctor that specialises in treating it, and stuck with the same inept surgeon who's default [in the private sector in Ireland] was to take the case even though he wasn't skilled enough to deal with it. In the second surgery he removed my left ovary and tube due to extensive adhesions, but I don't know if the ovary itself was exhibiting any actual damage.
I have been extremely active in outdoor sports since then which might have been the thing keeping me on a relatively ok path until it all caught up with me again in earnest starting last year, with pain up in my right upper abdomen. I was referred to a GYN in the NHS a little over a year ago who did an internal scan when I expressed worry that I might have endo lesions growing again. She said everything looked fine, and wanted to put me on Zolodex which never seemed like a decent option for me, and I didn't go with it even though my GP pressed me about it because as last year progressed I was experiencing more and more constant pain. Menopause and HRT seemed like a complete gamble of unforseen problems, especially when I was experiencing non-cyclical pain in my pelvic region as well we my upper right abdomen. I also was outspoken about the fact I felt certain that my remaining right ovary was healthy, which of course couldn't be confirmed by anyone else. I was outspoken about fear that I was suffering severe adhesions due to endo which were causing me non-cyclical pain, but couldn't get anyone to get me on the road to confirming that. Meanwhile I had an abnormal smear and had a LLETZ and hysteroscopy last Feb, after which I was told my womb looked "perfectly healthy", though the notes reflected my uterus was "bulky and fixed".
I was repeatedly fobbed of in A&E and my GP because my blood obs showed all was well with my organs, despite the fact that I was in so much pain I had stopped working last Feb. I was referred to an abdominal pain clinic to check my kidneys, liver and gall bladder just to be sure it wasnt stones or anything more sinister, though I kept reiterating that I was certain it wasn't stones, But it took months to get the scans done. After one of many A&E visits begging to make a scan of my kidneys and gall bladder get done sooner so I could get referred to an endo specialist which I knew I needed (I felt like I was jumping through hoops trying to arrive at being seen by the right kind of doc) I was also sent to an emergency gyne clinic in Belfast where I live. Less than a year after the first GYN had done an internal scan and said everything was normal, the emergency GYN said my right ovary was hard to distinguish and appeared to be adhered to my uterus, and my uterus was very fibrotic. All this after being told by TWO gyne doctors that my womb, and everything, was healthy and me insisting it wasn't. The emergency GYN's notes about my case have never EVER made it into my patient files. I don't know the doc's name, and don't know what happened to any of the recommendations he made on my case. Going to him was like a grain of hope that I might be taken seriously for the first time, but the fact that his opinion was never entered on my case made it effectively completely useless to me.
As I am a dual American citizen, I finally decided I couldn't take any more. I had a referral to a BSGE specialist in Northern Ireland but the wait time just for consultation (not treatment) was too long. I took myself off to the States and just returned home a few days ago. I chose a fantastic doctor near my parent's home who also taught at university who specialised in treating endo radically with robotic surgery. He LISTENED to me, looked at all the information about me I had to give him about my case and history, he gave me his email address and always responded (often within minutes), and he addressed all of my concerns including my wanting to keep my remaining ovary so I wouldn't be forced onto HRT or into menopause. His aim was to preserve all that he could, when it was appropriate, and removed everything that needed to be removed with a view to minimising the possibility of occurrence or compounded complications. He also supplied me with pictures from the procedure, a video from the scope of the whole 3 hour procedure, a detailed surgical write up and pathology notes.
What I had suspected about what was going on within me was exactly right. There was nothing wrong with anything in my upper right abdomen, not my diaphragm or kidney or gall bladder or liver, the constant pain I was in in that part of my body was due to the fact that I had a very fibrotic uterus, and my colon was wrapped right around my uterus and densely adhered to it, as well as adhered back in on itself, and there were endo lesions on my rectum, left ureter, and other sites that were deeply excised. The dissection of my colon took 2 hours, and that alone cured the constant tugging in my right side that had prevented me from living a normal life. My right ovary is described as "grossly normal", and it has been preserved on its own. I have had a total vaginal hysterectomy (cervix/uterus/right tube... no more smears! yay!).
What frustrates me is that I, as well as all of you, are here on this forum begging for help and answers and advice of each other, and many of us are long-time endo warriors who understand the disease and know our bodies and have some idea of what's going wrong in there, and that must be worth something. It should be of interest to the medical world what we are experience versus what the clinical findings are. GPs and so-called specialists on either side of the imaginary dividing line between "abdominal" and "Pelvic" regions need education about not compartmentalising their "departments" in cases where someone already has an endo diagnosis, and to be a little investigative holistically in cases that haven't been diagnosed.
I feel angry that I lost faith in the NHS here and bailed off to the US. I feel angry about the begging and cajoling to GPs and A&E and at least four different consultants I had to do while in debilitating pain just to get on the path to a referral to the right doctor. It beggars belief. I feel angry on the behalf of all you endo sisters here who are without the real help and support you need because the NHS is so wildly inept with taking us at our word that we're in trouble.
I want to know if any of you have advice about how I can bring the anecdote of my experience with the ultimate clinical findings to have some bearing on how medical professionals treat women in our position. I would love to throw the video in the faces of the GYN who wanted to feed me Zolodex and the nurse in the A&E who shouted at me my obs were fine and so surely I was ok enough to get off the floor and sit in the hard plastic chair I'd been in for 5 hours, and the consultant in the abdominal pain clinic who sent me a letter saying there was absolutely nothing wrong with my organs or digestive tract. I need these people to know that the picture was much more complicated than that.
My love to all of you. xx