HELP: Delays on Diagnosis

Hi all,

My name is Olivia and I am 20 years old. For the past two years I have been prodded and tests for all sorts of gastro related illnesses and am yet to receive a diagnosis for anything. I never considered endometriosis as a possible cause for my pains until I really looked into it and found that I suffer many endo related symptoms (shooting leg pain, chronic tiredness, back pain, chest pains, stupid periods and most significantly, lower tummy pains). Upon finding this information I felt that I could finally confidently obtain a correct diagnosis if I explained my circumstances and requested a laparoscopy. Today however, I went for my appointment with my GP to explain what I had researched and request testing to be done with very little luck. I handed her the pain and symptoms diary that I had filled out from the Endometriosis UK site and she dismissed it immediately without even a second look. My GP told me that because I'm not 25 she wouldn't refer me and then proceeded to explain that laparoscopys cost a lot of money so where possible the NHS avoid the procedure. I feel so disheartened. I really feel that I am likely to have endometriosis given my symptoms and the fact that many other tests have returned negative results. Surely I have a right to know? What can I do? I've waited two years already for some sort of a diagnosis, I don't feel I can wait another 5 just to be considered for endo. I've looked into going private but I certainly can't afford to pay the asking price for a laparoscopy (if anyone's interested £3450 UK).

If anyone has any advice on this please let me know. I just don't know what to do.

Olivia x

13 Replies

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  • I'm 19 and as close as I've ever been to getting the lap. I started the whole process when I was 15 but the pain started when I was 12 or under (basically whenever I started my periods). I've made other posts on here if you want more detail but basically I got referred to gyne when I was 17 and he was like nah too young you are just chronically constipated and offered no reason for my bleeding and said I was just confused on where the pain was coming from. I moved to uni in September and tried again.. with success... I had all the usual tests and ultrasounds and the gyne was so understanding and said what the last one said was completely unnecessary as you are never to young for endo if your period has started you can have it. I am currently on the mirena as tried pretty much everything else and if in 2-5 months (I'm one month in) it doesn't improve then goodbye mirena and hello lap to see if I do actually have endo... although at the moment I am waiting on a scan to see if it is even still in place as the gp couldnt find the strings and my abdominal pain is getting worse rather than better... part of me hopes its still in place and my body is just adjusting, another part of me hopes its not and it has to be removed or is gone anyway and then I can just jump to the lap and refuse to have another mirena as its just been agony the whole time anyway!

    I seriously hope you get taken seriously soon... but from experience its pot luck depending on which doctor you actually get :(

  • Sorry to hear that you are suffering. It's nice to know that there are others out there going through similar situations though. I hope you get your laparoscopy soon. I'm so sick of Dr's suggesting what I may have, getting tested and then receiving negative results. I just wish people would really listen x

  • Do you have other GPs in your doctor surgery that you can see?

  • I do, but have recently switched surgeries so don't know what any of the other doctors are like. I suppose I'll have to go through them all to find one who will take me seriously.

  • I completely get where you are coming from. Blood test here, blood test there, lets have an internal scan now... a huge problem I have is I know I do have bowel problems but they haven't bothered to actually investigate that anyway!! They just go oh you have suspected IBS yeah lets go with that! And I am wayyy too much of a mental wreck to argue with them I just cry because this pain is ruining my life to put it nicely... I am struggling with uni but thankfully DSA have accepted my claim so next year should be much easier with all the new stuff I am getting.. but it is too late to save this year so I am glad I only need 40% haha!

    The whole thing is so frustrating... to begin with when I was living with my mum she didn't believe me either because the doctors didn't so we would constantly argue because she thought I was just trying to skive off of school. Hopefully.. I pray that you get it seen to soon and don't go through so many years of the same shite! Although I doubt it :( xx

  • Ugh, I'm so tired of being told I have IBS. A few prods of my tummy and I get Buscopan thrown at me. I know where you're coming from there. Same with the blood tests. I go to my GP appointments knowing that I'll come out no further forward than when I went in. It shouldn't be like this 🙁

  • Exactly! You hope going there would help but 9/10 times I know I'll just some meds that I don't really need that I'll waste my money on anyway just so I can say I tried! Surely with me being on Tramadol and other meds they would speed up this scan to see if the mirena is lodged somewhere and if not then seriously consider why the pain is so bad... but nope just kinda winging it at the moment. I feel bad going so often but if they listened the first time rather than rushing me out then I wouldn't have to keep coming back!

  • Hi Olivia,

    Poor you I feel for your I really do, 13 years it took for me to eventually get a laparoscopy done when I was 23 it will be 2 years this June since I had it done.

    That really isn't helpful from your GP whatsoever however unfortunately it's a common thing, I would suggest as others have to go back to your GP and see a different hopefully more understanding doctor.

    It's easy for me to say but try and hold your head high and keep pushing take someone with you to your appointment if you can.

    This forum is brilliant people in the same boat offering their help and advise I regularly rely on this.

    Unfortunately as you say the NHS isn't in the greatest of places and endo although it's as common as diabetes unfortunately doesn't get a look in like other things do.

    Feel free to message if you need to.

    Good luck

    Joely x

  • Hi Olivia. Under NHS guidelines it is your right to be referred to a gynaecologist who can then arrange a laparoscopy to find out if it is endo.

    Unfortunately you have to be strong and stand your ground.

    Definitely try a different GP. If you still have no luck then it might be worth writing to the practice manager, and explain why you need the referral.

    Just don't give up, it took me nearly 30 years for someone to take me seriously.

    Good luck.

  • I'm sorry to hear that you are suffering and not receiving he support from your GP that you deserve.

    After 12 years of suffering and being dismissed by the GP, a woman I worked with who was involved with Endometriosis UK and had the condition herself put posters up in the ladies toilet and that's the moment I knew I had endo. I'd heard the word before but didn't really know anything about it.

    She gave me exactly the same advice as JeanOsborne has given you. So when the GP said no to a referral, I stayed strong and quoted how it was my right to be referred and insisted a referral was completed. I even named the particular consultant I'd been advised to see.

    The GP did the referral but made me feel awful about it and told me that they wouldn't see me. Well they did see me and I a laporoscopy 3 years later (could've had it sooner but I put it off for various reasons).

    I would like to tell you that getting the formal diagnosis helps with the GP situation but sadly in my case it hasn't. I had more issues last week with my GP not taking my worsening symptoms seriously. However, having that diagnosis has built my confidence further to push for a referral back to the hospital.

    Stay strong and be assertive xx

  • Hi sorry to hear you've been suffering for so long, I'm no expert & am myself waiting to find out , unfortunately the referral process takes forever, perhaps you could go private for the initial gynecology appointment then once they determine the likelihood it's endo you can then go back to GP & ask to be referred. I would also try another GP first as they all say & do different . After a year of going to the Dr's, ultra sounds, Blood tests, internal examinations & so on my Dr finally put a referral for gynecology in , the letter came last week & I have to wait till August!!!, I went back to GP to say I can't cope with another 5 months & she prescribed me antidepressants!!! I'm not depressed I just want to find out, I hope you get some answers soon x

  • Demand to be referred to someone on the bsge.org.uk/centre/ list, your doctor can not refuse. They don't have to do a laparoscopy either, they can do an MRI if they have the more modern scanners. This is far cheaper and it is astounding that most gyanes and GP's don't seem to know this and are still doing laparoscopies. Neither is guaranteed to pick it up but with the MRI being so cheap, it makes far more sense to use it.

  • Hello Olivia !

    My GP was so similar to yours, she was convinced that it was gastro-enterological issue or IBS problem. I felt so terrible that nobody believes me that i made an interruption of study for the year and went back home in France. Still a big fight but i was determined that time and i first obtained a RMI in december were they observed an adenomyosis. Started treatment, didn't work fully and waiting for my lap next week.

    I was told several times i was too young to have endometriosis (20) etc... Don't listen to them ! Go to see another GP and ask for a gyneco reference. If you have doubt about them trusting your research on endometriosis, just ask for a reference, you have the right for that. A gyneco may be more comprehensive.

    Is there an endometriosis clinic in your town ? They need a reference but often they can answer your questions or guide you through the process of being diagnosed.

    Hope it helps, i send you a lot of good energy !

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