I really desperately need some advice can someone help me please?

Hi I am new to this site, I've just come across it as I've been desperately trying to search stuff up and get some advice...

Anyway, I am 18 years old and I have been suffering with problems since I left school (I was 15) I've been to the doctors and hospitals so many times just to be told 'oh you've only got ibs and there's nothing we can do' anyway I've been reading up about endo over the past few months and I get so many of the same symptoms to what people get with having endo. My auntie has suffered with this since she was 15 and I have been told I'm more at chance of getting it if I have an auntie mother or sister who as it. I've been back to the doctors and they've told me I'm too young to get it which I know is compete rubbish and apparently I'm too young to have laparoscopic surgery done to check if it is endo which I also know is complete rubbish because my auntie was 18 when she had hers done. I've been given an appointment to have a pelvic scan done but I've read up that it won't show anything up to do with endo. I don't know what else I can do? Please can someone help me?!

26 Replies

  • Hi Chloe,

    Firstly so sorry to hear you're suffering. Secondly reading that makes me so angry! That's such rubbish, I feel so bad that they've treated you that way.

    I've been in the same situation, since I was 14 I've been fobbed off with the IBS crap, it's only now, 7 years later that they're taking me more seriously.

    Firstly I'd suggest changing GP if your current one is being dismissive, that's what I had to do. Secondly, insist on a referral and remember that the research you've done is factual and no one can fob you off. Girls can start suffering as soon as they get their periods and it's best to be investigated asap to avoid further suffering.

    The scan might show cysts if you have them, but you're right it won't show endo. Don't worry though, my scan showed nothing and if anything it made them consider endo seriously as it's not detected by scans.

    Sorry I can't offer more than suggestions, but if you want to talk about it more I can relate to what you're going through! I hope this helps a bit and you're more than welcome to message me x

  • Thankyou so much for replying, I have decided I'm going to make another doctors appointment tomorrow and get a second opinion. Hopefully if I see a female doctor she might be more understanding. I'll update you on the outcome once I've seen another doctor :) xx

  • That sounds like a good plan, fingers crossed! Xxx

  • Hi there, i have been suffering with all endo symptoms since i started my periods at 11. It wasnt until i was 14 that the doctors put me on a combined pill to ease the pain, that didnt work so at 16 they fitted me with an implant but that didnt work so since then i have been on and off the pill. Im 21 now, and i had the mirena coil fitted 6 months ago which is supposed to help but has just made the pains worse in my opinion. I know how you are feeling because for ages i just thought that wasnt bothered and just kept trying to palm me off with different excuses. In the end i said that enough is enough im fed up living like this! every week i am in agony, so they sent me for a scan to rule out PCOS, the scan came back clear and i was referred to a gyno doctor. They then put me forward for a Laporoscopy which i had done yesterday. I was diagnosed with Moderate Endo. After 10 years of pains ive finally got an answer, its just very upsetting knowing that i have to put up with this now :( x

  • Hiya, I've been on the pill since I was 15 and it hasn't helped if anything the pains have been getting worse. I refuse to have the implant and the coil fitted as I've been told before that they don't help. It really annoys me because we know the symptoms that we're getting but the doctors just fob us off with any little thing they can. I feel as if I have diagnosed myself with endo. I don't want to be waiting years to find out if I have endo even though I know many people have waited years and years before they've finally gotten to the bottom of their symptoms. It's just not fair, we shouldn't have to suffer in pain day in day out 😔 Hope all goes well. Xx

  • I know its so not fair! The only reason i went along with the implant and the coil was to get myself to the point where i have tried everything, and got myself to a last resort. Thats when i told the doctors ive tried everything and they was happy to refer me for the Lap, just bear that in mind! I hope everything goes well in the future for you x

  • Maybe I should just give the implant and coil a go just so I could turn round a say 'look I've done everything and there are no options left for me' I'll bare it in mind. And Thankyou, take care xx

  • Hi I'm 19 and had been suffering with endometriosis symptoms since I was 15. I had many doctors tell me it was nothing or stomach problems and it's so frustrating but you just have to keep at it. Nothing showed up in my ultrasounds when I had them so the doctors were like ah you're fine! Anyways literally 4 days ago I had a laparoscopy where they found the endometriosis in my womb and a cyst and removed what they found.

    The only reason I got the laparoscopy was because I told my GP I would go through private healthcare which was not an ideal option as it's quite expensive. I did it through my dad's BUPA account so go money off and then my doctor referred me to an endometriosis specialist who was also slightly hesitant to give me a laparoscopy (which is the only sure way to diagnose endometriosis).

    If going privately isn't an option for you then just be really persistent about what you want/need, don't downplay your symptoms at all and bring up the fact you're concerned you may have endometriosis and make sure they listen to you.

    I can completely sympathise that it's so frustrating and demoralising when people keep telling you that you have IBS or it's nothing or whatever but just be really persistent and write out a list of all your symptoms and start keeping a pain diary and keeping it in correlation with your periods.

    So basically either tell them you'll go privately if they refer you or just be very insistent and don't down play your symptoms.

    Good luck! Let me know how everything goes! xx

  • Also I've just had the mirena coil fitted post laparoscopy and so far so good (touchwood) apparently it will make sure my endo doesn't progress or grow back in my womb and helps with painful and heavy periods x

  • Thankyou for replying, so glad I've found this site, doesn't make me feel so down now I know people understand what I'm going though. I've written an essay on everything that I'm suffering with and I'm taking it to the doctors tomorrow and I'm going to tell them I need to be properly checked over for endo. Fingers crossed. I'll let you know how it goes :) xx

  • Hi chick I had the pelvic scan and vagina they hadn't got a clue what to look for plus all the scans came back clear, I had the coil fitted about 18 months ago and all my symptons have came back again over the last 2 months with a vengeance, my docs were fab and I got a referral to gyni for a 1 week wait, don't know what they will say though but my doc says nothing will be diagnosed until I have lap, will wait & see, hope you get some answers soon. I know how you feel Hun, I feel like im in constant pain every day at the mo 😢😢😢😢😢😢😢

  • Bless you I hope everything goes okay for you! I'm in constant pain from the minute I wake up till the minute I go to sleep most days. It's got so bad I can't even hold a job down. I'm at my wits end with it, I just need answers ASAP. Hopefully I'll find some answers out tomorrow from my doctor. Good luck for your referral :) xx

  • Hey, im 19 and understand exactly what you're going through :) At 14 i went to the doctors and he said i probably do have endo but it will go away once i have a baby and that i was too young to have a laparoscopy. 4 years later i went back cos i'd had enough. My doctor wasn't there so i saw a different doctor, complete luck, and she was so shocked that i hadn't been referred at 14 especially as my grandma had suffered from endo as well. I had a laparoscopy one month after my 19th birthday, they found endo which i was so pleased about. Still having symptoms and got an appointment at a different hospital on monday so hopefully can get it sorted. So what i'm trying to say from all that is don't back down, you have the right to be referred if you believe that there is a problem and you are showing all the symptoms. Look around for the right doctor who believes you cos they will be out there. If you need to talk i'm always here for you :) i feel a bond with endo sisters who are the same age as me and going through the same problems and feel we all have to stick together and look after each other :)

    Lots of love



  • Thankyou Becca, I'm off to the doctors in an hour, I've written out two pages of all the problems I'm suffering with and explaining that my auntie has it. So fingers crossed I get somewhere this time. I'll let you know how I get on :) xx

  • Good luck! :) x

  • Thankyou :) xx

  • Bowel problems? have they tested you for coeliac disease? It's a simple blood test to see if your body is reacting to gluten and triggering an autoimmune response - I was misdiagnosed as having IBS and ME/CFS when it was coeliacs and wasn't tested until after months of suffering.

    Give it an Internet search and call your gp to see if they've ever tested you for these antibodies mentioned here: coeliac.org.uk/healthcare-p...

    All the best!

  • I think I've been tested for this, I will double check when I go and see my doctor this afternoon, Thankyou xx

  • Heya just to let you all know, I've been to the doctors and the lady I spoke to was so understandable she's advised me to go for the pelvic scan and then she'll think about sending me for the laparoscopy. I don't feel so down now I know that :) xx

  • Thats great! At least you know you're going somewhere and are in the system now :) xx

  • I feel so much more at ease :) still in so much pain though, pain killers just don't seem to help me anymore :( xx

  • Thats good :) what painkillers are you on? i take ibruprofen and co-codamol cos the normal stuff doesnt do anything, i might as well be eating sweets. My hot water bottles are my best friends and i know they can only do so much but they help a lot xx

  • I'm currently taking ibruprofen at the moment even though it doesn't seem to help, I used to take paracetamol but that failed to work also. I use hot water bottles now and then :) xx

  • I would go to your doctors then and ask for something more substantial, Its almost like your body becomes immune to it, which is quite bad to say but that's what it feels like. Well use them as much as you can because they do help a lot :) xx

  • I will go back to the doctors and mention about it and see what they're willing to do. And I will start using the hot water bottles a lot more, Thankyou :) xx

  • OK :) its alright, just wish i had this much support when i was first diagnosed so i try and help others as much as i can :) xx

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