I’m so sorry that this post is so long, but I really, really need some help and it’s a long story. I’m wondering what you think. I'm having an op in 2.5 weeks to clear the nodules, lesions, adhesions, endo from my pelvis, pouch of douglas, bladder and bowel. It was discovered when they operated on a melon sized endometrioma that I had in January.
Just to give you the background - Apparently they now think I've had endo for 20 years. In that time I was diagnosed (they now think incorrectly) with Pelvic Inflammatory disease and have had 3 ectopic pregnancies, the last of which - 9 years ago - nearly killed me. During that op they discovered endo, but as it was just a county hospital and they didn't know what to do. They then stupidly sent me for an ultra-sound, which of course it didn't show up on, so even though they'd seen it during the op - they then said couldn't have been endo....ffs!! After 9 years of pain and problems with all sorts of related health issues including constant kidney infections they sent me for a bladder scan a year ago and discovered the huge endometrioma. During the emergency op I had to remove it in January after it ruptured - the hospital consultant (who was over-worked but lovely) found all sorts of problems. I had to wait 5 months for my follow up appointment because of waiting lists, but when I saw her she said that the endo was stage 4 - terrible - very bad damage to my bladder (which explains why I can't pee a lot of the time and am in constant terrible pain there) and that it was on my bowel and pouch of douglas, uterus etc. and that my pelvis was full of nodules, adhesions, lesions etc. I was quite rightly referred to a specialist endo centre with one of the most eminent consultants in the country looking after me - which should give me confidence - EXCEPT! Having waited since July for a date for my op - which involves him and also a urologist - I received my date last week for 14th November which I was thrilled about. Totally reeks havoc with my work and children (single mum running my own business with clients across Europe- doing everything and completely financially responsible for us all - not at all easy to manage a short notice op- but so damned relieved to get it that I'll sort it somehow).
The problem - since Monday I've been really ill. The pain on Monday far exceeded the constant pain that I'm usually in. I couldn't breathe properly or get up from the floor for an hour and being on my own couldn't get to the Dr's. My GP suggested that I take morphine and go to bed which I did. The next day the pain had subsided a bit but I was feeling really ill. Dizzy, nauseous, very very week and the pain was in a slightly different place. All on my left side, very intense, in several places. My boyfriend came over to the house and saw me and took me straight to the GP who wanted to admit me to hospital. My blood pressure was very low and when she touched my abdomen I was retching and nearly fainted. We discussed it and she agreed that admitting me to a local hospital may cause complications as the op is to be done at the specialist centre. She asked me to call my specialist nurse - turns out she's on holiday till mid next week. My GP then asked me to contact the specialist directly. Yesterday morning I called his secretary. At 4pm yesterday she called to say (she was extremely embarrassed) that he's suggested I take some paracetomol!!!!!). She couldn't understand why he didn't want to see me given that my GP thought I should be admitted and agreed that paracetomol was not the answer (I had of course been taking paracetomol, ibruprofin, codeine, diazapam and reluctantly oromorph (which makes my bladder symptoms worse) in addition to the Gabapanthen that I have to take daily. The only thing she could suggest (unofficially) was that my GP refer me to the Gynae clinic at that hospital - not part of the endo centre - to be seen asap. My GP is calling me today. Ive woken at 4am still in pain- though it’s not as bad as Monday, feeling sick, dizzy and nauseaous. Part of me doesn’t want to make a fuss and is dreading having to be driven to the hospital for 90 minutes to be given paracetomol and no answers, but this doesn’t feel right. It feels as if somethings happening that shouldn’t be happening. It feels like it may be to do with my bowel, but I’m not constipated. I’m so close to my op date, but can’t spend the next 2.5 weeks in bed, which is the only place I can be without feeling as if I’ll fall over. Should I just wait it out and try to push through it? Should I go and make a scene (my idea of hell)? I’m confused and a bit scared. Any thoughts would be really really really helpful. Sorry for the long post. Thanks so much, Molly