Advice

Hi ladies I'm completely fed up! I had my lap in April and was told it would be 45mins to 2hrs long but the surgery took 4 hrs in total I had extensive endo a cyst on each ovary 9cm on my right and "only" 3-4 cm on my left they were "kissing ovaries attached at the front of my uterus, the surgeon could not remove seperate my uterus from my bowel as its too badly diseased. Im still in a considerable amount of pain and don't feel like the surgery has done me any favours. As my own GP failed to diagnose this after 21.5 yrs it was discovered by a fertility specialist last May he wrote to my GP to advise him of this but no further referrals to a gynae were made. In Feb I ended up in hospital with the pain and ended up asking for it privately through insurance, I was only covered for surgery and one consultation after.

Because I'm still in so much pain I went back to my GP yesterday and asked for a referral to a gynaecologist my doctor asked me why and I said I was still in pain and that I wanted an eye kept on it incase it would come back. He told me the waiting list was too long and that there was nothing they could do as I've already had the surgery so there was no point! I've done nothing but cry since as I'm so frustrated and annoyed and can't afford to go privately to gynaecologist again, what more can I do if my GP won't do the referral? And it's not that easy for me to change GP over!

Sorry for the long post!

8 Replies

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  • I struggled to get referred so i suggest you go bk to GP cos of pain & ask for a scan ( ultrasound) to see if they are still there. (Which you know they are).

    Then whislt your been scanned you need to have a full rant ( no crazy style but frustated) of how nothing is been done and you need referring to GYNE not just been monitored.

    This way the person scanning you will suggest a referral to GYNE send a letter to doc , so when you go to docs he will read results to you and then refer you to GYNE as thats advice of person scanning you.

    This is what i did im now at pre op stage.

    Dont be fed up or let endo win, stay positive as it is only temporary part of your whole life. Sending Hugsss XXX

  • Thanks I'll just have to keep bugging him til I get something done, I am just so frustrated at the minute haven't been given a lot of advice and was led to believe the op would cure me! Ha!

  • Hello, you need to be reffered to a bsge specialist gyne doc, I would suggest looking up a lady called Lindle on here and check out her post, because you have been diagnosed with Endo, you have a right to ask for specialist refferal. Have a read off the nhs endometreosis contract,

    See if you can see another Gp,

    Don't give up, if your no better then you need further treatment

    Xxx

  • Thank you xo

  • Hi - if this was a general gynaecologist then it is as well he/she didn't attempt to separate your uterus from your bowel as this requires specialist skills and training beyond general gynaecology, but they should have immediately referred you to a specialist centre where they can deal with this. You have rectovaginal endo and since nothing was done about it you will still have the pain, Click on my name and have a look at my post on rectovaginal endo and the one on how to find a specialist. Where are you in the UK?

  • Hi lindle, had a look earlier at the bsge link on your page I'm from Northern Ireland and the surgeon who done the lap was in fact the one who actually runs the endo clinic in Northern Ireland. His words were that he would have needed a specialist team to remove everything but he wanted to give me a chance re fertility first of all. I'm going to ask for a referral to altnagelvin but don't know how it will work with the different health trusts here.

    I'm just having problems with my work and they requested a letter from my GP about my condition he wrote it and it goes as follows "this lady has endometriosis and suffers abdominal pain intermittently"

    Hopefully if I get a referral to the endo clinic I'll have better support from them!

    Thanks so much for all the info you have provided on this site had a bit of an overload reading through it earlier but will go back and go over it again.

    Thank you

  • Aww darling im so so sorry to hear your story. My bowel was stuck to my womb which was separated when i had my laparoscopy in 13, the pain crept back and my gynaecologist suggested hormone injections so I was in a false menopause I was pain free for 7 months so from the 31still March this year I've been awaiting a hysterectomy which is due 2nd Nov now this might not cure me100% but I'm taking the chance.

    I really wish I could help or point you in the right direction but all I can do is send you love and healing xxx

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