What's the next step?

[Carleyjayne93]

So after having a laparoscopy colposcopy biopsy and mirena coil fitted all at the same time 2 weeks ago I received a letter through saying everything was clear and no abnormalities were found. I am still having the same problems with pain in my bowel back and period pains very regularly. I don't have any bleeding anymore (guess this is the coil working) but I do have pain during sex still. I don't really know what to do now as not been advised any further since I had my op. I feel quite frustrated that I haven't had any help or advise from the doctors or aftercare since and quite stupid now I've had a letter through basically saying there is nothing wrong with me. Fallen out with my partner over it cos now he thinks I'm just being dramatic about the whole thing. Some days I'm fine other days I'm in absolute agony. I don't really understand what's going on or even what to do about it? Is it just in my mind now or is there something still to find? Has anyone else had the same problem? Xx

[Sarahjane1967]

Was your surgery performed by a general gynae or a specialist?

I felt like a drama queen for 18 years before an actual endo specialist diagnosed me! Hugs xo

[Carleyjayne93 in reply to Sarahjane1967]

I had it done at day surgery of hospital and they were a bit useless explaining things to me I couldn't tell you who or what happened to be honest. Even the aftercare was useless completely different to what the leaflet they gave me said. Had no info of what the next step was or what they even advised to do next just had a letter yesterday saying no abnormalities found and they discharged me back to he care of my gp x

[Sarahjane1967 in reply to Carleyjayne93]

You poor girl... I think this happens a lot. You have the right to request a referral to an endometrial specialist. There's a lady on this site called Lindle who has done a ton of research (after suffering herself) and she has a link to a list of recognised endo consultants and clinics. I didn't even realise that a regular gynae wasn't informed enough to deal with such a typical

Gynae problem, but tis the truth!!

Made an unbelievable difference to me seeing a team of people who knew their stuff - I think I ended up asking for 3 expert opinions before feeling 'safe'

I found out recently that the gynae who did my first lap (all clear!!) now treats the royal family. 18 years later I was stage 4 so it's worth persevering now Hun xxoxx

[Carleyjayne93]

Yeh I just feel really silly and dramatic about it now I've had the letter yeh I did get recommended to write to her and I've literally just messaged her. It's horrible cos sometimes I'm completely fine running round messing about the next I'm exhausted achy and uncomfortable it's so frustrating cos sometimes even my partner thinks I'm lying xx

[Mabes]

I'm so sorry your partner doesn't understand. Perhaps you could get him to read Lindle's information and help him understand that a non-endo specialist is not adept at uncovering endo (I think this is particularly true in the earlier stages when it is perhaps harder to spot?!).

It is not normal to be in so much discomfort and pain. If after seeing an endo specialist it turns out not to be endo then your GP should be referring you to the next specialist who can look at what else it could be. Don't give up! Remember if your partner was suffering this he'd want to know what was causing it and I'm sure he'd expect compassion and understanding from you!

[Carleyjayne93]

I haven't seen an endo specialist I just seen a gynaecologist I'm guessing by what other people have said there is a big difference? I have been writing to lindle just waiting for a reply. I don't know how to find a way to get to an endo specialist x

[Tor666]

Hello, I'm sorry you are having such a horrible time at the moment. Just wanted to ask if you knew for sure that the letter you had was not just in reference to your colposcopy biopsy rather than a summary of their findings as a whole?

I only ask as I was being treated by both the colposcopy clinic and by my gyne consultant at the same time and the samples are treated very differently in the labs. There are automatic letters for smears and colposcopy results whereas results from pathology for endo will go back to your gyne and they will write to you/your GP directly.

Victoria x

[Carleyjayne93]

As far as I know it was for all of it xx