So confused with it all :(: Had my second... - Endometriosis UK

Endometriosis UK

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So confused with it all :(


Had my second lap three weeks ago which just showed scarring no active endo so they have just left it. Have been on prostap since October which was hell to begin with but the last two months I seemed to be getting less pain, I am right in thinking being on prostap won't give them the full picture as it might have got better? They have stopped the prostap as of last month so am now on nothing until 6 week check next worried its going to get worse again and they will think it's in my head as nothing showed on the lap. Is there a reason they can't get rid of the scarring, does that not cause any pain?

I've also not had a period and last prostap was 4 April, how long should everything go back to normal?

They have said I have adenomyosis from the scan but just feel like I'm going around in circles and not getting anywhere. I asked the consultant to see me after the lap and she assured me the registrar would come and talk through it all, this never happened so just going off what a nurse read off my notes

Just feel like i have no idea what is going on with my own body :(

3 Replies

I know how you feel hun. I have been suffering so many symptoms over the past few years and they finally referred me for a diagnostic Laparoscopy 4 weeks ago, I did not have a gyno specialist do it just a Lap surgeon so didn't have the surgeon who I thought I was having the whole time.

She told me there was nothing there and its probably just IBS and I need sex therapy and that they don't want to see me again, I feel so let down and back to where I was 2 years ago with no answers, have had enough of it all now.

Went back to my GP 2 weeks ago and she just kept going on and on about IBS and then I mentioned about going private to see a proper endo specialist to get a second opinion and she told me not to bother wasting my money. So now I am back to the beginning, waiting to see an endo specialist which I am going to pay private for, I need that second opinion just to put my mind at rest, if he says its just IBS then maybe I will accept that but right now just don't feel like there is something right.

Sometimes I feel like they do not even care about how your actually feeling they tell you whats wrong and whats not wrong but don't actually listen to how your feeling and what you feel should be done, instead as long as they are getting paid that's all that matters x

No I think you are quite correct. If you had been on prostap, the drugs would have temporarily shrunk it! My consultant who is an endo specialist consultant has mentioned in the past that he would need to wait at least 6 months or longer after someone finishing hormone treatment for a diagnostic lap for him to be able to see the true extent of endo in order to excise it. He would not carry out a lap until the endo had been given time to regenerate (if it was going to). You don't get a true picture as the drugs just temporarily suppress it rather than eradicate it. Most ladies say it generally comes back after ceasing drug treatment over time so you would not be losing your head - pain is a good indication.

Just seems strange that they did a lap when you have only just finished drug treatment - they must surely understand how the drugs work and that it is a temporary fix!

The other thing about adenomyosis - again my consutant suspected I had adeno as I had a bulky womb - but he also said you cannot accurately diagnose adeno without doing a biopsy and that cannot be done unless you have had a hysterectomy and it is confirmed post op - it can only be suspected by a bulky womb (which can be due to other things). Endo is more often than not on the outside and can be shaved off. Ask them why they think it is adeno and how they know.

All best wishes x

Thanks for the replies, I've already been down the IBS route, tried movicol which did nothing but make me have the runs. The only symptoms of IBS I had was the pain and swelling, nothing else matched. I've been like this since I was 16 and am now 33 and still getting nowhere :( I've seriously considered going private but can't afford it. Good luck, I really hope you get somewhere

The sonographer immediately diagnosed adenomyosis off the ultrasound, he had been studying it and said it was very clear as the womb was very swollen. It's not been mentioned since but he said a hysterectomy would be the only cure.

My consultant won't consider a hysterectomy as she thinks I'm too young, we'd also like to try for another baby so was hoping they would keep me on the prostap a bit longer. The more I read the more stupid i think it was to have the lap. I suppose I'll have to write a list of questions and make sure they are all answered, thats if I even get to see the consultant and not some trainee :(

Thanks again for listening, sometimes it just feels better to get it all off my chest as no one else seems to understand...I suppose how can they when even I don't! xx

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