RE: need a friend. Surgery done and wasn't a success

Firstly thank you to all of you who replied. I was very depressed at 4am and you made me feel like I was no longer alone.

All the pain is set in now, and was only given paracetamol untill I cried at the nurse to give me morphine. Even the Gynae nurses don't understand the pain it causes.

Stitches are tender and my vajayjay is very very tender. I originally went in for a nodule removal however when I saw the consultant this morning (as I didn't see them last night and spent the night thinking I was fixed as much as I could be) they haven't removed the lump. It's not an endometriosis nodule, they couldn't find it. They did remove other endo and adhesions. The lump is the reason I went and now I'm being made to feel Im a bit crazy. I was strong with my consultant when i said there was something there And that 3 doctors have found The lump and felt it previously. She told me it was my bowel being full. I told her that i had an enema and I could still feel it.

I'm back at the drawing board with my lump. I can't wee, I can't poo, no sex and extreme pain. Nothing has got better and I am depressed, I haven't stopped crying. They've sent me home with paracetamol (ive complained and am going to my GP this afternoon to get something stronger) and here I am, no further forward. I need some help being strong, I'm such a positive person and I'm struggling :(

6 Replies

  • Hi darling, sorry they didn't find out what your lump was, but keep that chin up, the removal of endo and adhesion could still give you a lot of pain relief, I can't beleive you had a bad experience from your nurses, when you are well enough please complain about they wat you was treated, I'm so sick of hearing about ladies in our situation made to feel guilty or silly about what we are dealing with, hopefully your doc will give you something stronger, maybe you could have a phone consultation,

    I hope your recovery will be speedy, but don't rush things, I'm 10 days pre op, and went shopping yesterday and had to take my son orthodontist this morning, now I'm shattered again and in psin,


  • I hope it does ease something. I'm still in a lot of pain with a lot of sickness, so won't see any improvement yet. Doc gave me Diclofenac to try and help, but nothing is touching it, and i hate to shove so many pankillers down my throat, it just makes my stomach so unhappy. Hope you are doing okay? xxx

  • Hi very sorry to hear you feel your op was unsuccessful. I'm shocked that you have only been given paracetamol. It beggars belief what pain and suffering us endo ladies

    Have to go through. The attitude of some nurses is pretty questionable too.

    I hope your gp has given you something stronger and you are feeling more comfortable.

    Did you have your surgery at an endo centre?


  • I was shocked too. I had to go find the nurse at 4am for pain relief as they werent answering the buzzers. They come accross like we a nuisance. They wouldnt treat any like that after they'd given birth, or had surgery on a broken bone. I don't know why Gynae problems are brushed off so much.

    GP has prescribed Diclofenac and I've been started on treatment for IBS incase the "nodule" is something to do with that.

    I did have my surgery at an Endo centre, however they couldnt remove the lump as its not Endo, so am back at square one. :(


  • Hi Hanna

    I really feel for you. When you are getting over the op a bit come back and let me know the history that has lead to this - symptoms, previous treatments, scans etc and where you had the op. It may well be that they weren't skilled enough to deal with stage 4 rectvaginal endo with nodules etc. For example an MRI would probably have shown it so they knew where to look when doing the op. Don't despair yet x

  • Hi Lindle,

    Firstly let me say that you are fantastic, I have never met someone with such extensive knowledge of this nasty little condition. I've never actually met anyone with Endo apart from one woman who i work with who luckily, after childbirth, hasnt suffered again.

    My consultant is an accredited Endo specialist (and is featured on the list you refer to in your other posts) and has told me that this is not an Recto-Vaginal nodule, and has now rediagnosed me at Stage 1. She was unable to find the nodule after seeing it on an MRI, 3 different doctors being able to feel it. 1 doctor found it during investigative lap last year (and he wasnt an accredited Endo specialist) and a very painful Sigmoidoscopy. (I ended up with 3 types of sedation to get into the bowel as it was very tender. I've been put on IBS treatment, although they dont think this is what it is and I wait 2 months to go back. They think it may be to do with Spastic Pelvic Floor Syndrome or Pelvic Floor Disorder but I can't seem to find too much about these online. So i guess I'm just resting up and wait for 2 months to start again with the lump. x

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