Apologies in advance if this sounds like a "rant"... but I really do feel in need of some advice. I'm having somewhat of a rotten time at the moment, symptom-wise, but I feel I'm not being taken seriously, all over again. I'm at a loss as to what to do now...
As some of you may know, I have Endo, which was finally diagnosed in 2011 after YEARS of misdiagnosis, and being "fobbed-off". I feel that I had to fight SO HARD just to get a correct diagnosis, and treatment; and it really eroded my faith in Doctors and medical staff. It's not at all pleasant, when you are experiencing untreated Endo symptoms, and nobody is listening, or trying to help!
After I finally got my diagnosis, I ended up having 4 lap surgeries. My first was a laser ablation, and I was discharged from Gynae (not Endo specialist) services not long after it - having been told ALL my Endo had been removed. I then had at least 3 episodes where I ended up at A&E (via ambulance!) in excruciating pain. The Doctors (being at the same hospital as my original Gynae) all acted really shifty, and never wanted to discuss Endo. They kept trying to say maybe it was "muscular", or "psychosomatic", or "had I puled something?". I'd just get sent home with painkillers!
I did a LOT of research on-line, and found a nearby Endometriosis Specialist centre, that I demanded referral to, in late 2011. I had a 2nd lap in December 2011 that showed that ALL my Endo HAD NOT been removed! I've since had TWO further laps - including a radical excision of deep Endo from utero-sacral ligament!
I STILL feel "fobbed off". I've NEVER been told what stage my Endo was/is. I've NEVER been fully told where it was/is. When I've been shown photos of my Endo taken during surgery, they are always different ones at different appointments. So, I know there must be LOTS of photos; so just HOW MUCH Endo was there? After my most recent surgery in March of this year, I was again told ALL my Endo had been removed. But then my Specialist added that he could not guarantee it wouldn't return!
So, HOW do I know for sure that it IS all gone? Especially as I am now nearly three months post-surgery, and I STILL HAVE SYMPTOMS THAT ARE EXACTLY LIKE MY PRE-SURGERY SYMPTOMS. I have persistent low back pain, worst on right side. Pain at the low front of my pelvis. My periods remain heavy and clotty. I have bloating (woke up this morning, and the EXACT skirt I fitted easily YESTERDAY now pinches) - my stomach feels rock hard, and looks swollen. I am peeing LOADS (I'm keeping a diary of this at present - yesterday, for example, I went to have a pee 16 times in a 24 hour period!). I STILL have diarrhoea first thing in a morning, which is worse during my periods. I am still fatigued, and feel "run down". Today, my abdomen and back feel really tender - the pain is griping, constant, throbbing and makes me feel a bit sickly. My husband says I look pale and tired!
I feel like if I go back to my G.P. or Specialist, I may be seen as "fussing", as they are convinced my Endo is "gone". What the heck can I do? I am still being seen by a Gynae-Urology Specialist, and have tests in 2 weeks time. Should I tell them all my problems?