Would love advice, doctor won't test

I'm convinced I have endometriosis. I've been told that I more than likely do.

I'm 20 years old and suffer with painful irregular periods. I've suffered with depression from about the age of 14 and have even been to physio with back pain.

I started my periods when I was 13 and have never had regular periods until now (I'm on the 4th try of a pill called trinovum which increases hormone level as you take the course). I have pretty much every other symptom of endometriosis too.

However, my doctor said that she won't put me in for tests as I'm not planning a family any time soon. I don't know what to do as it does affect me on a daily basis. Sex with my boyfriend can sometimes be so painful I have to lie on the bathroom floor with a cold flannel on my head to stop myself passing out (sounds so stupid)

I just would like some advice on what to do next. I would love a family one day but I know it can reduce your chances of conceiving and the pain is really getting me down.

Thanks if you've read this and also if you've responded. I know it's an essay and a half.

Steph x

9 Replies

  • Please insist that Gp refers you to a specialist endo Gynae. This is a shocking, but all too common attitude of doctors. Either they tell you to have a baby asap or they delay diagnosis. Early diagnosis and excision of as much endo as possible is the only acceptable way forward as you need to preserve your fertility before it is too late. So may young girls are not diagnosed, until they end up at fertility clinics.In my case,I had endo since 14yrs but was fobbed off, told it was stress, a normal womens problem ,until I was 29yrs!This ws 30 yrs ago and still women are not being taken seriously. Of course there are some good endo specialist centres but a lot of GPS and Gynaes are in the dark ages.

    Print off your symptoms,keep a pain diary and go to Gp and insist you are sent for a laparoscopy and tests.Could someone go with you for moral support?Change your Gp or threaten to make an official complaint.Bad that you have to make a fuss,but it is your body suffering the pains and even more crucially your fertility could be at risk if it is left until you are trying for a baby.I know this as my cousin was in your position and ended up unable to have babies. The longer endo is left untreated the more your fertility can be compromised,though many of us have been blessed to have kids, despite endo etc.

    Take care and do let us know how you get on.Sending you a hug.

  • I feel like I am reading my life!!!! I am 20 and haven't been diagnosed yet, but I am on the waiting list for a laparoscopy! Finally! I started off with a gp that said it was consipation??? What has consipation got to do with painful periods and painful sex? So I changed gp and went to a gynocologist that actually cared! And he told me to try the mirena, and for the first few months it was horrible but I'm 5 months in and it's Awsome! I am on the waiting list for a laparoscopy because I went with my mum to the hospital and it helps when someone else explains what you have been going through and write things down about your symptoms and dates. Sex with my boyfriend doesn't happen anymore and it's ruining our relationship and I'm in pain everyday, and I know my own body and I know when something is wrong and soenthunt is defiantly wrong. Keep pushing you know yourself and you shouldn't be living in pain everyday and it shouldn't be ruining your life! So change doctor or go see a gynolcologist!!!

  • This is awful - don't stand for it. Planning a family has nothing to do with it. I have no intention of having a family, but was not prepared to spend my life in pain! This annoys me soo much - we're not just baby machines.

    You know your own body. As others have said, keep a note of your symptoms and ask for a referral. You need a diagnosis to either remove the endo or at least know to move forward. Don't doubt yourself - keep pushing xx

  • This has nothing to do with fertility.

    Would you not have a test for cancer just because you are not yet having a baby? Ridiculous.

    Endo is a disease - regardless of whether or not you can, or even want to, have a baby at some point.

    Change GP- if you are getting no where with your current one, 1st try a diferent GP at the same practise then failing that move to a new surgery competely. and before you decide which to move to, check if they have a GP that specialises in women's health issues. That can help to have have someone who knows that endo is not about fertility, it's about quality of life, resolution of pain and preventing serious consequences in the future.

    The sooner you do get to have a diagnostic lap op- the better you chances of preserving fertility in one respect -but also of saving your bladder and bowel and other organs becoming compromised by the damage caused.

    Whether or not you do even become a mum is one far less significant issue that having a life every day bladder and bowel problems plaguing you. IF you think you have endo then you must not stop pestering to be taken seriously.

    This is the biggest problem we have- doctors not understanding endo and not refering patients to gyanecology till endo is extensive and making life unbearable. It can take years and years to get a diagnosis. Only because of medics reluctance to help women and take this seriously. So shop around, find a sympathetic GP. Learn all you can about endo so you can speak with authority on the illness and demand the treatments that you want to try next.

    Endo is a life long battle- and you have to catch it early as poss to be in the best place to have it removed successfully, and then you can take steps to reduce the chances of new endo growing.

  • I would insist you get referred to gynae as it's affecting your daily living! And quality of life, it doesn't matter if your not trying for a baby. Or go to another G.P, or complain to the practice manager. Good luck xx

  • Keep insisting you have a referal... Its not their pain its yours and so you have the right to be given the correct treatment. I made a nuisance of myself by going to the doctors 2/3 times a week and eventually got a doctor to refer me purely because they were fed up of me being there. Its bad that it got to this but it worked so that's all I cared about! In the end the person I was referred to just fobbed me off and told me she didn't know what was wrong so to come back in a couple of months.....

    So in the end I went privately. I don't know if this is an option for you but if it is Google gynecologists in your area and find one who specialises in endometriosis- that is very important as they understand it better. I was seen by a specialist within 2 days Nd he has put me on the nhs waiting list for surgery so I only have to pay for the initial consultation as surgery is very expensive! So if all else fails with your gp and you are in a situation that allows you to go privately do it! It was the best decision I ever made :D

    Hope you get it sorted soon xx

  • Oh my goodness, doctors are so awful sometimes! They anger me so much. I wish we would be taken more seriously by them. Sorry to hear that you are struggling so much and not getting any answers or support from the doctors. My advice would be to really push for a referral, emphasise the impact it's having on your life, maybe keep a diary of your symptoms and record the amount of painkillers you are taking so they understand that your symptoms really do need to be investigated. X

  • Thanks everyone :)

    I'm going to keep pushing for a referral and take my mam for support.

    I'm also going to try keeping a diary just to back up my point (was a good idea)

    It annoys me that they think finding a contraception method that regulates your period is a cure. It's really not, it only helps with one symptom.

    Thank you for all your advice and support. Good luck to all of you trying to get a diagnosis or going through your treatment. X

  • Wow! I am seriously in the exact same situation! (I am also 20 years old.)

    How has your endo progressed? have you been diagnosed yet? Hope you are doing well! xx

    GP's are literally pointless for endo, they will constantly tell you to come back and want to do ALL alternative tests before they even consider you could possibly have it! I demanded that I get a referral to a Gyno, and ended up with a public one in the hospital; which was absolutely horrible! She did the exact same tests as the doctor and said I may have it but to be on the pill for 3 months and 'see how it goes'. Absolutely useless, they do not want to do surgery unless you want a baby! PATHETIC!

    I too have also signed up to see a Private Gynocologist/fertility ward, I do not yet want children but I want a life without pain. My mum has endo and attends the same doctor and was diagnosed pretty much straight away within the first consult! I would highly recommend seeing a private gyno! (I don't get to see mine for 3 weeks, but hopefully it goes well!)

    Keep on pushing through it every day! Hope all is going well :) xx

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