First I'd like to say thank you to all those who use this board - I've read countless blogs and the advice you guys give has been of great help to me. So I thought I'd write about my own situation to see if you could reply with advice, your views and if anyone is in a similar boat (I know it's selfish, but a sometimes I feel a bit better knowing I'm not the only one).
So here goes....
I'm 23 and waiting for endo removal at the moment.
My pain started when I was about 12 and was put on just about every contraceptive imaginable. None of them helped with the pain and finally, last year I was referred to PRUH in Kent with possible endometriosis. I had a diagnostic lap last June and it was confirmed. At my follow up appointment, the consultant explained it was quite extensive (stage 4). Endometriosis in the pouch of douglas, with my bowel sticking to my uterus. Apparently there was even a calcified amount of endometriosis which when tapped could be heard outside my body :S. He put me on 4 months Zoladex and booked my surgery for November. Due to miscommunication between between the gynae and bowel depts, my surgery was cancelled twice. After complaining officially, my consultant decided it was best for him to refer me to UCHL, rather than slipping through the net. I attended UCLH in April for an internal ultrasound and I wad told the endometriosis was more severe than previously thought. As well as having PCO and adenomyosis, the endo has stuck the bowel extensively meaning I will probably need an ileostomy. Both ovaries are also stuck to the uterus, meaning it all sort of moves as one big ball of mess. They've said I'll need a further set of Zoladex injections and that I will be operated on by end Sept / beginning Oct.
In the meantime, the only thing I have to help with pain is prescripted co-codamol (which in truth just makes me dizzy and pass out, doesn't take the pain away) and I am constantly tired and on the hormonal edge of doom. All of this is making my work and relationship so difficult to manage and I've completely lost control, I don't even know where to begin to get it back on track.
I work full time for a construction company, but am lucky enough to have an office based job. I've explained to my manager how endo affects me and even though I'm able to do 95% of my work at home, I'm not allowed. This stresses me out even more, because I have to drive to get to work, but I can't drive on the painkillers so I have two options - either be in constant pain at work or disobey managers, stay at home and feel a little bit more comfortable.
On top of that, my partner is as understanding as he can be, however he gets very frustrated. He knows how little energy I have, but frets a lot about my well-being and gets angry about waiting times and the fact that there's nothing else doctors can do until surgery. Our sex life is non-existent (sorry if that's TMI) I have a low sex drive which I've had since I tried implanon and add to that the pain that both intercourse and even orgasm now cause me, I feel so guilty about it.
There is also the high chance of infertility, which any doctor I've spoken to seems to dodge. l don't know how I'd even go about finding out if I'm fertile or not and as someone who wants nothing more than to be a mum, it constantly worries me.
I'm sorry if this sounds like a massive rant, but I just wondered if anyone could shed any light on how to cope at work, maybe how to explain it better to my employers, what others do try and combat fatigue and how to get around being intimate or any other advice anyone could offer.
Any insight would be very much appreciated