please forgive me if I make any mistakes here, I've never posted on this or any other forum before, but I'm hoping someone can help with advice.
I have endometriosis. I was diagnosed 8 years ago, then told a year later that it was a mistake (because it didn't show up on an ultrasound scan). After having terrible bladder problems for 18 months and feeling really poorly my GP sent me for a bladder scan in Autumn 2015. It showed that my bladder was incredibly small and I was told it was probably due to the 10cm cyst on my ovary. Anyway to cut a long story short, it was an endometrioma. My Dr then said that the constant pelvic pain that I'd had for 8 years since my last ectopic pregnancy was probably caused by the endo (previously they'd said it was scar tissue pain and that the ill feeling was anaemia) and that it was most likely the endo that had caused me to have 3 ectopic pregnancies in 10 years in the first place too (fortunately I also have 2 very healthy children). Within a month of being diagnosed the pain in my pelvis and bladder was unbearable and the tiredness and exhaustion had increased. I was in hospital over christmas and then back in January to have the endometrioma removed as an emergency. The hospital left the endometriosis and didn't explore to see where else it might be. I was told that I'd go back in 6 weeks to start hormone therapy. My appointment came through for Mid May (over 4 months not 6 weeks - because they forgot me until I called for the second time to chase the appointment) but by early April the pain was so bad again and getting worse all the time that I paid to see an Endo specialist privately. He explained everything carefully and said that I could have an op to get rid of the endo and explore my bowel to see if it was effected and my bladder - to see what the extent of it was in my bladder (he was pretty sure it was there) and re-inflate my bladder, but warned that the waiting list was long. Alternatively I could try hormone therapy and HRT first which would alter the course of treatment. If it worked then they'd just take out my remaining ovary to mimic the effect of the hormone therapy later this year. He did warn me that weeks 2 and 3 the pain would almost definately be worse so I was expecting that and understood exactly why. I work a lot with the medical profession so ask a lot of questions and do understand most of what I'm told. He asked my GP to begin my treatment and advised me to go to my follow up hospital appointment as planned and asked to be referred to him if I decided to have the op. However I really wasn't expecting to feel like I'm feeling now. I'm on week 2 and I feel more awful than I can explain. Every bone and muscle in my body hurts 24 hours a day. I've got worse pain than usual (as I expected) and a feeling like a trapped nerve up high in my urethra which is agony. Sleeping is impossible unless I take diazepam, which I can't do on the 5 nights a week that my children are with me. Pain killers aren't working at all. I can barely function. Unfortunately I have a very high energy lifestyle. I run my own business with a team of 40. We work all over the uk and in Europe and I'm also a single mum with 2 children. Since Christmas I've limited the amount of travelling I do, but still do have to travel several times a month and work long hard days from home. Feeling as if I can't do anything at all - as I do now - just isn't an option for me. I'm totally financially responsible for my children, my mortgage, bills etc. and for the business - we get no financial help from their Dad at all. Not working is simply not an option for me. If I don't work I will lose my house and my business.
I've got my hospital appointment (the one I've waited fro since the beginning of January) on Tuesday as it's just been brought forward a week. I don't know what to do. It's been almost impossible to get to see them and I know I need to tell them what I want to do or else they'll just bulldoze me as they did when I was an inpatient in January. They had wanted to start the hormone therapy the day of my op without discussing it with me until I stopped them.
I had intended to ask them to refer me to the endo specialist (which they usually do as standard) and to be put on his waiting list for the op that he advised me to have, but to continue with prostap and HRT until the time came. That way I thought if it really began to work I could ask them to change the op to an ovary removal nearer the time.
However, If I'm going to feel this ill - even if the pain goes - I just can't do it. For those of you on Prostap and HRT who have had a reduction in pain - has the ill feeling that you got with prop gone too or have you decided to live with the joint/muscle pain/ exhaustion/ill feeling etc. in return for a decrease in endo pain?
Sorry for the long post. My friends say that I've got baby head without the baby since I've been on this stuff. Thanks in advance