Fed up no Endro from lap

Morning so fed up and confused I had a scan last year to be told I could possibly have Endro as been in pain for years and bad periods , I was put on prostap jabs to see if this pain would stop when the bleeding did which it did but I couldn't cope with the side affects so had to stop , so the next step they agreed to do a larposcopy just had that yesterday to be told couldn't find any Endro only a vein that could be causing the pain oh and the mention of my bowels once again I am so fed up and no further forward feels like it's all in my head or should I say your made to feel that way , all this pain from the lap too feels like a total waste of time . Sorry for the big ramble has anybody else had this before , many thanks amber xx

18 Replies

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  • Hey Hun

    Don't lose heart!

    Where you treated by Bsge centre?

    It very easy to miss Endo, if your not a specialist. Plus if you have been on hormone treatment it can make it harder to see.

    Keep pushing on if you are still struggling with pain. Diagnoses isn't always easy. But you know your own body better than anybody else.

    What are your symptoms?

    Xx

  • No just my hospital , how do you get seen by bsge , I feel so fed up and questioning my self is it in my head , pain during intercourse and a constent pain in my left side it's awful and sometimes up my vagina it's awful feels like something is going to drop out sometimes tired all the time and generally feeling like pooh xx

  • Hi

    I would firstly find the nearest centre to you. Check out LINDLES posts on here & also read Bsge website. Once you've found the centre, go and ask your doctor to refer you.

    Explain to them how it's having a debilitating effect on your life. I explained all the symptoms in detail and all efforts I had made to manage it.

    It wasn't until I was referred to Bsge that the full degree of my condition was found. Don't let them fob you off!

    Best wishes with it all X

  • Thank you so much you have given me a little bit of hope again felt like I was mad yesterday when was told , will look them up . Also my belly always bloated and looked like 6 months pregnant xx thank you again for your help

  • No problem .

    Glad I can help!

    I was in your exact shoes 18yrs ago. Ended up on hormones for 17yrs.

    Horrible when everybody thinks it's in your head.

    The most common site is in Pod. Which is always missed by a general gyne.

    Let me know how you get on

    Take care X

  • I will do as soon as I can get back on my feet properly I'm going back to my doctors , I'm confused , doesn't take much may I add ha .. What is pod ? X

  • The pouch of Douglas is the lowest peritoneal cavity in a woman. This is where most Endo is found. Behind the uterus and rectum. Lindle has an excellant post explaining it all.. Symptoms, diagrams the lot.

    Speedy recovery my love X

  • I feel your pain! All my symptoms seem to aim at endometriosis and I had a lap at the beginning of the year which had shown my right tube, right ovary & bowel was fused to my pelvic wall & POD but no endometriosis was found!? I also have a retroverted uterus and an ultrasound has shown I have cysts on left ovary. I was fobbed off with a diagnosis of Pelvic inflammatory disease then given a course of antibiotics and discharged by the hospital. I'm still in exactly the same position with the same symptoms and pain! I've deiceded to go down the private route and see a specialist. It seems so unfair that we have to struggle and pay to get some one to listen to us!! X

  • Wish I could afford to go down that way 😥 It's awful isn't it you're made to feel like it's all in your head , all I got yesterday was there is a vein in my pelvic that doesn't look right and that could cause the pain but nothing they can do about it and also asked if I go to the toilet regular as my bowel looked swollen or something like that anyway in other words we don't know what's up with you and that's that x

  • I've been told you only have to pay for the first consultation then if they feel they can help you they write to your GP who can then do a NHS referral. It's just a quick way of jumping the waiting list I guess. I've been quoted £250 for my first appointment x

  • Hi I've just found out I have pelvic congestion syndrome aswell as endo. I was diagnosed with endo 12years ago, the symptoms etc are very similar but the pain is much worse, according to my gyney which I saw yesterday the only reason he found out I had this syndrome was from my Mri I had and that I could of had it back in 2011 when I had my last laparoscopy which would explain why the pain I get is so much more painful, from what you've said and the research I've done in last 24 hours sounds very much like pelvic congestion syndrome which is basically varicose veins in you abdomen many women have been misdiagnosed as having endo and similar when they've actually got pcs, maybe worth getting a second opinion.

  • Hi that's what I looked up yesterday as she said she saw a vein in my pelvic so I googled it and was suprised to see all them symptoms to that , all she says to me was there is much they can do about it I go back to see my specialist in 8 weeks but don't have much hope in her . Think I do need to get a second opion. I had a lap about 9 years ago did the same symptoms well not as bad and all they said it was was the good old irratable bowel don't think they know what there doing half the time to be honest x

  • Hi, I am in exactly the same boat as you! Check my posts and see the similarities, it's so difficult when you know there's something wrong with you but no one understands what your going through x

  • Yes it's awful isn't it this has been going on for about 10 years or more and I'm still no further to knowing what is wrong you feel like it's all in your head x

  • Odd that they didn't do other checks first. I am only waiting for lap after gp felt a lump and having a gynae ultrasound which also showed the end. Have they considered diffuse adenomyosis?

  • My speacialist mentioned that it could be either Endro or that adenomyosis but none of them was found but a vien and the mention of my bowels once again do you go regular blah blah said last time they went in it was irratable bowel x

  • Perhaps time to take Emma's advice and get a second opinion from somewhere you can trust. Don't be fobbed off. Prepare what you want to say before you go. Get advocacy if you need to. Hugs.

  • Thank Hun it's nice to know someone out there that understands what your going through as felt like I was going mad and its in my head ,I'm going to go to the doctors next week when back on my feet see about a second opionion x

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