Huge amounts of pain end possibly be returning

I had my lap a year ago and they removed all endo ,periods where normal for first time since I was 16 ,but this month's I'm in so much pain that I feel physically sick and feel dizzy , this morning when I got out of bed blood gushed out of me and all down legs even though I was wearing a pad ,I had to sit on the toilet and wait for it to stop , has anyone had anything like this and it's been there endo coming back even worse? When they removed it last year all I was told was that I had alot of endo and was in operating theatre for 5 hours ,dreading the thought of doing it all again.

15 Replies

Sending you hugs. I was referred to a pain management clinic by my gynecologist and GP. It might be worth having a chat with either one. It was through the NHS and I didn't have to wait too long to be seen xxx 

Thank you , I will mention it to my doctor ,as I don't think he knows much about endo as I spent 4 years going to him in pain and bleeding and he didn't refer me , only reason I was referred was because I mentioned my symptoms to a nurse who then booked me in with a different doctor on the surgery X 

hi. i too have bleeding like this. i have endo and adenomyosis and i wonder if that symptom is more to do with the adeno. have they ever mentioned about you having a bulky uterus?

My consultant did the operation and all I was told was that I had alot of endo and that's why I had been down in theatre for 5 hours , I was sent home same day and he discharged me from his clinic , when I went to see my doctor he couldn't understand why the consultant had discharged me ,but as I was feeling better at time I wasn't that bothered X 

i was originally told that they suspected stage 4 endo and had a lap under general gynae. i was then told by the nurse that they didnt find anything and i was discharged back to my gp not even with a post op follow up!! my symptoms worsened immediately after my lap and i developed an infection. i ended up ringing my consultants secretary and insisting that i see someone to discuss what they have or havent done and to check my incisions. when i went back they werent interested in examining me and just said it would be a couple of months before i feel better. 

she couldnt even explain what they had done. she said i only had one cut but i definately had two!! she again discharged me. i went back to my gp and they werent happy either. i did have a severe hospital infection which escalated at week 3/4. i have had to fight once again to get a referral and im now recovering from my second lap where i have been diagnosed with severe stage 4 endo and adenomyosis. i am now facing a total hysterectomy :-( 

if you dont feel right then u probably arent. please push to see a bsge specialist and get a second opinion x 

OMG , I think some doctors need training on endo , it takes far to long to get a diagnosis , hopefully I can get my doctor to refer me back again , my doctor said to me not long after my op that once I felt better if I was planning on more children iT would be best to do it sooner , as endo does come back and each time it can cause more tissue scaring and fertility problems ,but never thought he meant a year after the op my symptoms would return worse than before X 

If this was done in general gynaecology it is unlikely that they will have removed all your endo but just 'treated' it. If you don't have a copy of the surgical report can you obtain it from your GP and come back so we can see what they found and where and whether there was any indication of adenomyosis too. A 5 hour surgery indicates severe endo that should have been done in a specialist centre. I'm assuming it wasn't?

It was done in the out of hours in hospital , before going under my consultant said I'd probably be under for an hour at the most and would only have two incisions done , but when I came to I had been in there for 5 hours and had 4 incisions, the lady who was with me when I came to told me what they had found and how long I was under for but as I was still very drowsy I only remember how long I was out for , I didn't even see my consultant again I was taken back to my side room and after a couple of hours they said I could go , the didn't give me any pain relief , ended up in doctors next day being perscibed tramadol. I'm going to see if I can get an appointment Monday and see if he can pull my notes up from the operation as I don't no how they expect people to remember when they are telling them as soon as the come to after being knocked out X 

ask your gp for a copy of your discharge note. it wont have a thorough explanation but it will say briefly what they have done. i had to pay a pound for mine. x  

The discharge note must say in full what was done as this is the only basis for ensuring that your medical records are complete and accurate. This is a legal requirement. The details from a discharge note are extracted and 'coded' to your medical record by a 'clinical coder'. It is the GP's responsibility that this is done correctly. The document below provided by the BSGE details the notes and codes that must be used for complex endo. I suggest you copy it and give it to your GP and go through it to ensure what was done is coded correctly.

They also mentioned about removing cervical erosion aswell,but nurse at time said that nothing to worry about 

I had my lap over a year ago and removed endo from my womb plus had aheadions on pouch of Douglas glued it to my womb I had about four months of relief but sadly the pain came back a lot worse had a few hospital addmissions and when I saw my consultant at my check up he said oh we removed it all nothing we can do left the hospital in tears so went back to my gp she refered me to pain management and I'm now getting accupunture and so far had no pain which is amazing might be worth asking for a referral to pain management xx

My doctor is useless , he just send me away with zapain or tramadol , before my op I was on hormone replacement to try n help the bleeding but they just made me break out in tons of spots X 

aww not so good I'm quite lucky I don't have that problem the only thing I hate about my pain relief is it gives me a dry mouth always having to carry loads of water about xx

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