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Endometriosis UK
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Diagnosing Endometriosis

I have suffered very painful period pain for as long as I can remember, along with pain during and after sex, tiredness, shooting pains in my bum and sometimes heavy periods. I have been started on the mini pill (I get migraines on the full pill) to try and reduce the pain, this alleviated the pain however I am still in pain. I'm due to have an internal examination next week.

Will my GP be able to fund anything during this examination? I understand an option I'd a laparoscopy but unsure whether I will need this or whether an ultrasound will show up Endometriosis?

Thank you in advance

Ashley

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Endometriosis can only be diagnosed via surgery. No true endo specialist will diagnose through an exam or scan. The GP is a good place to start, but I suggest you request a referral to a BSGE clinic near you.

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It's unlikely the GP will be able to find anything, not quite sure what they'll be looking for TBH. I didn't have any internal exams on my route to diagnosis.

If an ultrasound is offered then it would be a good idea to have one but you need to be aware that endometriosis often does not show up on ultrasound. Sometimes it's because the lesions are too small (ultrasound generally doesn't show anything smaller than 1cm) and sometimes it's because identifying endo on ultrasound is a specialist skill and most radiologists can't do it. So a clear ultrasound does not mean everything is fine.

If endo is suspected then you need a referral to gynae. Asking for a referral to a bsge centre as has been mentioned is generally not warranted unless you have confirmed/suspected severe disease, which the majority of women with endo do not. For confirmed diagnosis of endo you need a lap.

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Hi, you can find your local bsge endometriosis specialist team at this link: bsge.org.uk/centre/

Requesting a referral to this team was the best thing I ever did and got a definite diagnosis after 12 years of being fobbed off. x

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I will literally try anything, I'm totally fed up of the pains I'm experiencing. To the extent that I can't leave the house :-( x

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Hi Joreeilly, I'm not sure what the gp can see either. I want to go in prepared as I've read storied and don't want to get fobbed off. I've been agony for too long now. Planning when I can go out around this is just really unfair.

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Hey Ashley, your symptoms are similar to mine. Don't be afraid to tell them at the examination to be careful if you are tender inside. Don't be disheartened if they say they can't find anything. You know your body best and can ask for surgery as an ultrasound doesn't tend to show much. I hope you get the answers you need at your examination xxx

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Hi char,

Thanks for your kind words, im surprised that so many people are affected by this disabling condition. How long did it take you to get a formal diagnosis and what treatment are you on. I get no relief from what I take xxx

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It's awful and unfair isn't it. I had heavy irregular periods throughout my teens so tried various contraception but nothing made them regular. I only persisted for a referral a year ago when I started to get a pulling abdominal pain between periods, a swollen tummy, pain during sex and exercise, bladder issues and unbelievable tiredness. I was seen by gynae last december and had a lap in february which diagnosed me with endo and supposedly treated it. (I dont know where you are but this was in Southampton. I had a horrendous experience and was left in more pain than ever after my op so would not recommend there!). After that disaster I relied on zapain codeine and naproxen. They didnt really help my pain but I could just about get to the shops and function a little better if I stayed topped up. I also tried amitriptyline but that turned me into a zombie. I'm now 22 and had another lap last week as my symptoms had worsened and taken over my life. I had the coil fitted too. One week on and Im feeling better already so trying to stay positive :) I am still very new to this but it shocks me how many other women have had the same struggle, contradictory advice and uncompassionate doctor appointments

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Aww sending hugs 😘 I hope you feel the benefit of the op soon. Its been an awful few years as the pain has become the worst is ever been. I can't continue to let it rule my life. A few people said there's nothing the gp will do! After researching the subject of decided to visit my gp to get sorted. Im back Monday for an internal exam, im going to ask for different painkillers. I know this is tmi but the pains in my bum were horrendous. My son has seen me cry too many times bless him.

Hope you're feeling better soon xxx

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