Frustrated

Just had the worst appointment with a new gp (my GP having an operation) feel like I'm back to square one, asked him to refer me to the endometriosis clinic who specialises in bowel endo but he seemed so disinterested in doing it and just dismissed all of my symptoms 😔can't wait until my GP comes back in January. Told him that the pill is not helping my symptoms and he's saying I haven't taken it long enough (did it for 3 months before with breaks but now doing it without) thanks guys for reading my posts and hope you all are well today x (is there any way I could find an email for my GP and email her)

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  • Can you make an appointment to see someone else at the surgery? I had to deal with a GP who dismissed all my symptoms as IBS and outright told me it wasn't endometriosis because I didn't have the symptoms. He delayed my access to treatment by over a year. I refuse to see him now and everyone at the surgery knows why.

    Please keep pushing for another appointment until you see someone who will listen. x.

  • Thank you for replying x they have about 4 main gp and I've seen all of them but only one has listened to me and she is so great but is away at the moment having an operation and will be back in January so I guess I'll just have to wait until then 😔X one of the gp said that I could be overweight which might be causing the pain, one gave me painkillers but never bothered to follow up and today this gp just dismissed everything and didn't even give me an opportunity to ask for a stronger painkiller prescription as mefanamic acid doesn't have any effect :( x he basically said my MRI showed no endo so what's the point in having a lap and when he said that I basically wanted to burst into tears and he had the nerve to say oh you look upset why is that 😕

  • Oh FFS what an idiot. The lack of knowledge about this disease at GP level constantly horrifies me.

    The surgery should have a complaints process. If you feel up to it, it might be worth making a complaint at this stage because they are not taking your symptoms seriously and you are not getting the care that you need. If he doesn't think it is endo, he should be taking steps to find out what else it could be and it doesn't sound like he's doing anything useful. I'm fairly sure endo wouldn't show up on an MRI unless your disease was advanced and the lesions were very large anyway, so the clear MRI doesn't mean anything. It's not for the GP to decide if a lap is suitable - only a gynae can make that decision.

    FWIW you can take mefenamic acid with over the counter co-codamol if you need quick access to extra pain relief in the meantime.

  • Thank you for replying x think GP's need some training in basic manners

  • Don't know if this applies to you or helps but maybe ammo for your next appointment. I'm discovering that there are different sub types of endo that respond in different ways. If your symptoms are bowel and rectal it's possible you have deep infiltrating endo, which is different to peritoneal endo and less responsive to hormone treatment like the pill. It's a bit jargony but if you read the intro, presentation and etiology (symptoms and cause) sections and the first bit of treatment up to figure 4 here it explains that. This matched my symptoms to a tee and is a clinical article so gp can't argue with it.

    endopaedia.info/subtype14.html

    There's also a good which guide to complaining about your gp that I posted on a similar thread the other day.

  • Thank you for replying x I think this is what applies to me and I'll definitely look into it

  • When you go back tell him to put it on your notes that you categorically can not have endometreosis, he should refuse to do this as endo is only diagnosed via a laparoscopy,

    You can self diagnosed to a bsge centre if you have the fund to pay for your first consultation, then be reffered back to nhs with same surgeon and centre,

    It's normally about £200,

    If you havnt got the funds, have a look through the files on refferal,

    Good luck

  • Hey!

    I'm in the exact same position 20 and at university. Its affecting my grades as well so I know how annoying that is.

    First when I went to the GP I was given all the tests and everything came back negative. They've ran tests to check on all my organs in the surrounding areas. I've basically became a pin cushion with all the blood tests and physical examinations they have put me through.

    I was referred to a gynaecologist and he sent me away with the pill and pain killers. He told me that because of all the tests they put me through that he thinks its endometriosis. He then told me to use the pill for 6 months and if it doesn't get better to go back.

    I've gone back to my GP so ill be going back to the gynaecologist and going to be requesting the Lap.

    Honestly you just have to persevere because that's what I'm doing. I've turned round to my GP and told her that the pain has got worse, which it has there are days where I physically cannot get out of bed and I'm crying to my sister, and made her give me the gynae appointment.

    It helped that my mom was with me! I'm taking my mom to the gynae with me this time because apparently to my mom I'm too nice so she needs to be there so they will give me the lap.

    If you ever need anyone to talk to message me! Wish you all the best xx

  • Hi,

    I have had similar experiences with GP's and my endo specislist gynae and it is unacceptable to turn someone away who is complaining of constant chronic pain without offering any plan to locate the source of the pain. A lap is the only way to know for sure if endo is the cause of the pain so this should be offered, even if it is only to rule endo out as the cause.

    I agree with Starry that clearly endo does not behave in the same way for all sufferers and that the pill did not have significant benefits to me when taking it earlier this year. I have deep endo in the pouch of Douglas. My bsge specialist in endo out right told me that he didn't think the return of my pain was gynae related, let alone a return of the endo he removed a year earlier. He performed the lap and removed endo from the same places as before plus two new places. If Dr's like him are getting endo wrong then what hope do we have with GP's. You have to fight your corner and insist that you want action to be taken to identify the cause of the pain. If endo is even a consideration then a lap is needed to know for sure. Taking someone with you is a good idea as I feel they behave differently when speaking to you and someone else rather than you on your own.

    Good luck!

    Nicki x

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