Feeling lost again

Hi ladies,

I had my first lap almost 3 weeks ago, and on the sheet they gave me from the hospital when I was discharged it said "Normal pelvic organs, no endometriosis identified." It also said no follow up needed, but the nurse said "Yes you'll need a follow up next month." I feel absolutely back to square one again and so lost. Since last year I've been poked and prodded for different tests, been put through hell by my own body, and tried to prove to my work and everyone around me that something is wrong. I wouldn't wish this awful disease on anyone, but in a way I need validation, mostly to put my mind at ease and so I can look for forms of treatment that actually work.

I've spoken to a few ladies who have said they've had one surgeon not find anything, and then another surgeon say they're completely riddled with endo.

I tried so hard to push to see an endo specialist but it wasn't offered to me. I'm just so worried they've missed it and I'll have to go through the awful recovery of laps over and over until they find something.

I experience horrendous rectal pain during my period which is why it was suggested I may have endo in the Pouch of Douglas, could they have missed it here?

7 Replies

  • I'm at the beginning of that stage. Got an ultrasound booked next week.

    After everything I've been through I need answers.

    I understand how frustrating it is. Hopefully you'll get more clarity in your follow up.

  • Thanks, you too! :) I just read your post 'About Me.' Your story sounds exactly like mine symptom wise, the nausea is one of my worst symptoms. Ask if you can see a specialist instead of a bog standard gynaecologist.

  • That is crappie, really feel for you. Why won't they let you see another specialist?

    Go back to your doctor and say endo but unconfirmed.

    Not sure about pouch of Douglas, ask doc.

    im assuming more are more experience in finding endo more than others, it's just not good you have to go through this.

    endo takes around 7 years to get properly diagnosed and I too feel like I live at my local doctors for blood test after blood test.

    ignore work and tell them nothing, that they are doing a follow up procedure to confirm after your recovery.

    your health is way more important.

    My company got occupational health involved until I got doc sign me off sick for a week with endometriosis as reason, then they cancelled occ health app and now take me seriously.

    It does get you down, but try and stay strong and go bk to gp and see which other specialists he can refer you too.

    head high, and high five for having lap done I've not had mine and nervous wreck.

    Hugs xxzz

  • Thank you :) I have another appointment with my local gp in 2 weeks so hopefully I can raise some important points to him.

    Don't worry if you're having a lap, I read post after post about things that have gone wrong...but in the end if you approach it with a real brazen attitude it's nowhere near as bad as you think it'll be xx

  • I'm not surprised you're upset, I know what it's like to be desperate for answers. It's definitely possible that they didn't find anything because they didn't look in the right places - others on here have mentioned that general gynaes sometimes only look at the reproductive organs, and even if they do look at the Pouch of Douglas they can miss false floors hiding endo. If that had been done during my op they wouldn't have found much, because I only had minimal endo on my ovaries and uterosacral ligament, it was the endo in my Pouch of Douglas which was causing most of the problems.

    Others will be able to advise you better, but I think you're supposed to have the right to see any specialist you want under the policies on patient choice. It's horrendous that they've refused to refer you to a specialist and so essentially put you through an operation done by doctors not properly trained in surgery for the specific condition you are concerned about. I'm really sorry this has happened.

  • If you live in England search for Lindle on here. She has an article on the pouch of Douglas and on hire to get referred to a specialist centre. Lots of literature for your gp! Good luck x

  • My GP and gynaecologist flat out refused to refer me to see an endo specialist. Liddle was amazing and helped me compose a letter to my surgery outlining why they legally had to refer me. A few months later, i was having my lap w the specialist of my choice which confirmed i have endo. I am sure she would be happy to help you do the same. Or you can message me privately and i'll send you the letter she helped me write (without all my personal details obvs) and you can fill it in and send it to your GP.

    I hope this helps you.

    Sending you love and well wishes.


    Hannah xo

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