Please will someone help

I've been told by nhs referral that I've endo and they'll treat it with the pill, there's been no talk of a laparoscopy being down to confirm it. The pill didn't work I've been living a dibbilitaing life and it was put down to fibromyalgia. At my next appointment can I ask to be treated by a different gynogolygist who I know specialises in endo, who also sees nhs patients.

17 Replies

  • The pill can help it however if it's as bad as what you say I would def ask to

    Be referred to the hospital. I chose my consultant she is so supportive and just what you need. Really hope you manage to get a refer all x take care x

  • The pain is every day plevic tail bone leg pain it never leaves, thank you for writing back, so my next appointment is January with the gynogolygist, so can I say at that appointment I would rather be seen by this person can I just be referred on or will they say no Disney work like that, can you tell me more on what you did please you've no idea how grateful I am to you

  • I asked to speak to the main GP of my doctors surgery. I explained it was impacting on my life and cried even talking to my doctor about it. I said I can't live like this and said I want referring. You know your own body and you shouldnt be afraid of telling them what you want! Can be a nightmare getting people to take you seriously but something like this won't go away x

  • Thank you daisy for writing back so much, I've already been seen at the hospital with a gynogolygist, I even had a diary of every day symptoms if he had of even glanced at it he would of took a gun out and shot me like a horse but he never looked at it just said think you've endo will treat you with full pill, but I've since been told about a gynogolygist that specializes in endo, I just don't know if switching is possible on nhs, thank you for trying to help I'm desperate I know we all are so thank you for your time x

  • I kept a diary as well and wrote every symptom down and gave it to my doctor. Good luck with it. Stay persistent. Fingers crossed you get somewhere x (some times you can be referred privately as an nhs patient so ask about that too!)

  • Thank you daisy every bit of info is helpful ill look into that alsox

  • I've got the same symptoms as you and awaiting a laparoscopy.

    It's hard work isn't it- the pain and he system!

    My gp practice is very good. However, I saw a rubbish gynae in August and ended up having cautery on cervix for ectopian which since, my nurse and a second gynae told me I don't have! Think cautery made my pain worse! Had symptoms for few years tho, numerous test. Have a good gynae now and waiting for op.

    I'm in that much pain and bleeding too that I rang Monday, helpless, and she is seeing me tmoz. Hope I get a quicker date for lap.

    Getting a diagnosis is important is t it. You need to stamp your feet for a lap.

    How are I managing the pain. I'm on cocodamol and using hot water bottle. Having a lot of time off work tho.

  • I'm on lyrica amytripalin, cocodamol, seasonal forte, but this was all for fibromyalgia all along I knew their was so.etching else I just never knew what I thought it was my back I took out a loan an went private for mri but nothing showed up, can you tell me how did you end up with a different gynogolygist, did you walk in one day and a new one was on or did you ask for a different one. I don't know what to do, thank you so much for sharing I've lost all hope at the min, it might be just endo to them but it's a life sentence to me.

  • Yes I went back to my gp and said I wasn't happy with the gynae I saw- it helped that nurse looked at cervix and said she disagreed with the gynae.

    You can go and ask to change- you need to trust them don't you.

    They then refered me elsewhere- I asked for one at this hospital too as I knew it was a private hospital that also takes nhs patients.

    I hear what ur saying about the life sentence! It hard isn't it- makes u not yourself xx

  • Skip1 thank you so much I'm gonna start fight back thank God I found this site and the people on it who are mirror image, and know what it's like to live their lives with this. Thank you xx

  • Find another gynaecologist immediately!! The pill wont treat endometriosis. I simply cant believe that all these years on there is still so much ignorance surrounding the diagnosis and treatment of endometriosis. Every gynaecologist should be able to recognise endometriosis from a good medical history and pelvic exam. They should then confirm it with a laparoscopy and take things from there. Be assertive. Its your body and your problem. Doctors are not gods. The good ones are the ones who are able to say that they don't always know the answers. Don't ask - INSIST that you see someone who will listen to you. Don't try to self diagnose your problem that just muddies the water. If you don't feel strong enough to tackle this yourself take a supportive friend with you. Its amazing how they prick up their ears and pay more attention if there is someone else around. Ask the endometriosis society for support.

  • Versailles after reading that I wish you where the one coming with me. You sound like someone who's been there done that got the t-shirt and then told them where they can stick their t-shirt. I know that's what their doing to me a jr gynogolygist who left the room to see the guy that was on my appointment letter and came back to tell me how smart he was that he thinks it's this and we treat with the pill and that the mini pill I've already been on for a year is no good you don't smoke so you can take full pill, I had a melt down in sainburys yesterday trying to push the trolley I knew my eyes were red and that people knew I was crying. I'm going back to demand more help, and with the support of every one on this site I now know I'm not the first to be mugged off I'm 33 now an look and feel 63. I'm just going to have to grow a pair. Thank you so much I live in Belfast I can always pay your flights if you want to come in with me , just joking thank you so much xx

  • Sinead 10-

    My gynae is good but still trapped in a bloody cycle lol

    I went today and said pains terrible etc etc she can't move my lap forward as they aren't an emergency unit so advised A and E. She said she would put me at too of list for a cancellation tho. She said even paying private wouldn't get me seen quicker.

    Went A and E and saw a very good doc again. Bloods normal pelvic area soft and she did bowel exam- normal- the doc at A and E rang gynae and between them have decided I'm not in need of emergency treatment so quickest to wait for lap with gynae. Increased pain relief and told me not to panic.

    I'm sure they think it's me over reacting to "just ibs". So got to put up with pain- wait for lap which may it may not confirm endo- if it doesn't I dunno what I'm gonna do! Go crazy lol

    Also chase gp for bowel referral.

    Gynae doesn't seem concerned about my bleeding with bm? It mortifies me!!!

    Suppose I should take peace of mind that many professionals thinks it's unlikely to be life threatening issue. I don't like uncertainty but it's life.

    Wait and see.

    So even when u get good professionals and stamp ur feet- I have done over and over, it's still an uphill slog. At least we all in the same boat.

  • It's slow is it and even going private you couldn't get seen quicker that's just madness I wonder how long you wait, in Belfast your talking at least 18 months on the waiting list for lap, that's what I don't want to waste any more time on the pill being my only saving grace, I hope you don't have to long a wait, anxiety sets in knowing your getting older and the time wasted trying to get sorted, but I'm sure at the same time your glad to be on the list after all you've .had to fight for it, xx

  • Ye the anxiety is havoc. The not knowing but just keep getting tests and have faith I suppose.

    After uve said that tho about ur wait 18 months I feel lucky- I had a 12/13 week wait. A few weeks in and I'm struggling. I should b grateful it's only this long then shouldn't I. It's hard when pain impacting every avenue of ur life- work, family, social etc I should so be grateful tho. My journey in total including other tests is two year- I know others wait longer. I don't know how. When are u next seeing someone Sinead?

  • January is my next appointment that's when I'm telling him the pill isn't working, but I have a feeling he's gonna try a different kind, that I don't mind I would weed if he ask me to try that, but put me on the list for a lap at least, he's a jr and I think it's to do with funding that he's gonna the cheapest options first, January is a life time away to me.

  • Yes totally agree that's too long. Go back sooner- call them or go gp for federal elsewhere.

    I feel like I live at the doctors lol

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