Terrible endo pain, dizziness, nausea, weakness 17 days to my next op - worried

[mollymm]

Hi Guys,

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

[Stellauk]

Poor you! Maybe to be admitted to the general gynaecological department of the specialist hospital is a good idea. They can examine you and make sure nothing serious is happening in the main time. As this could effect your upcoming operation.

The consultant's suggestion of paracetamol although not helpful but it could mean he didn't think it is serious.

Hope you can get some pain relief soon.

[mollymm in reply to Stellauk]

Thanks honey. I know logically it's the right thing to do, but can't bear them making out that you're making a fuss. I've only visited my GP once since my op in January and have done all the changes in meds (they tried hormone therapy to slow its progression, but my body reacted badly to the lack of oestrogen and they said it was a dangerous reaction so I had to come off it). I've tried so hard to manage the pain this year without bothering them, so if I go in and they do the "why are you here?" thing I think I'll cry. I think I may just need to put my big girl pants on and do it. I agree re the consultant, however when the GP examine you and says you should be in hospital and the consultant gets a second hand message from his secretary, I struggle to see how he can make such a rash decision. thank so much for your help x

[Tboag]

I know how hard it is to give in, but if bed is the only place you feel safe, then perhaps you should give in, and rest it out, with strong medication, hopefully it will pass in a few days,

Could your gp refer you for emergency scan just incase it's anything else, not sure what shows up,

The problem is, when we have endo, we and the docs just assume it's all ways that, but could be something else,

I hope you get some relief soon,

[mollymm]

Thanks Jesse, that's really kind. The cyst was removed in January and the pelvic inflammatory disease was a misdiagnosis. I now have severe damage to my bladder and damage to my bowel in addition to the endo which itself is very bad. Surgery is the only option as I can't even pee properly and if the endo does any more damage to my bladder it will have to be removed. What I need to know now is how I get through the next 2 and a half weeks before surgery feeling so poorly. I have tried many herbal supplements and the diet and other complementary therapies. I think they have helped in some way, however the damage has been done over such a long period of time that I'm now beyond them helping. thanks so much for responding. x

[mollymm]

Hi there, my GP admitted me to the hospital that performed my last operation as the Endo centre wouldn't see me before my op. They checked everything out, but think that it is the endo causing pain in my bowel that's giving me the new pain. They know that it's covered in endo, so I suppose 10 months on the damage could have become worse. They offered to keep me in just to get me off my feet until my op, but to be honest there's nothing they can give me that I haven't got at home, so I'm happier here. I've got to be careful because opiates impact on the damage to my bladder and if I take them regularly I'm in danger of not being able to pee again and having to be catheterised. I'm going to rest up as much as possible in the next 2 weeks. The worrying thing is how ill I feel. I'm still shaken and nauseous and can't walk or stand without getting wobbly and faint. I just hope whatever is causing that goes once I've had the operation. Bloody nightmare with my job and the kids. I swear, if men got this as well as women, people would take it so much more seriously! Thanks honey x

[Bexstar74]

Just spotted your post. If you don't feel you're getting the urgent care you need I'm sure the hospital you're being seen at will have what they call a PALS - patient advise liaison service - where you can lodge a complaint. Ive had to do this before and sobbed on the phone in agony, and it worked. I was seen within 2 days. Let me know how you get on x