Feel like I've been fobbed off

Hi all...

I'm 21, and have painful periods from the beginning (14), however as time has gone on, they've got worse. Painkillers don't make a difference. I've been prescribed mefenamic acid and it does nothing. The only thing that helps somewhat (and this is only with 'low' levels of pain, not when it's at it's worst) is paramol (paracetamol and dihydrocodeine). I went to my gp a while ago and she referred me to get an ultrasound, which didn't show anything up. Which is good, but frustrating because if it did show something up, then you know what you're dealing with if you see what I mean. After that, I went on the pill (microgynon). That did nothing, other than make my periods heavier. I was then referred to a urogynaecologist (I also have problems with bladder urgency and frequency). I was supposed to see a consultant but ended up being seen by a junior doctor who just filled out an "assessment" form which contained nothing my gp had not asked me and that wasn't in my notes (when was your last period, do you take painkillers - that was about the extent of it - there were bladder questions as well but they're not relevant). Was then told that periods are painful, with the implication being that I should just get on with it. Every month I'm practically bedbound for 2/3 days, it's so painful I can't do anything - even watching a movie seems like too much effort. That isn't normal. I'm not in work at the moment but dreading when I do get a job because I'll have to take time off every month. I believe in doing your own research about your health, and I believe that endometriosis is a real possibility. I know that my ultrasound was clear but if I'm correct, often it doesn't show up on ultrasounds? I'm so despondent about everything because the "specialist" didn't even do anything lol... But now I'm "fine" because they've asked me two questions about my periods. Don't know where to go from here. :( currently on lizinna contraceptive pill and I've been given the option of having a mirena coil...not sure whether I want that or not. I've not listed all my symptoms here as I'm not wanting opinions on whether it's endo or not... Just want to hear your experiences of being diagnosed... Has anyone else felt fobbed off by professionals? And if so, what did you do?

7 Replies

  • Hi - unfortunately your experience is all too common. On the one hand you have effectively been told what you are experiencing is 'normal' yet on the other you are being treated for dysmenorrhoea which, in the case of someone who is completely disabled by their periods, is abnormal. Your own instincts and sheer common tell you this and yet medical professionals seem unable to grasp it. The very first consideration in a young woman who experiences what you do despite any number of medications is to suspect endo. What is so difficult for them to grasp.

    Anyway, there is a protocol to be followed and if they are unable to allow you this then they would have to be prepared to confirm in writing to you and in your medical records that you do not have endo. This they would not be prepared to do. Forcing medical professionals to confirm things in writing is very powerful in getting things done.

    First, for a bit of history, do you have any family members with endo, autoimmune diseases or allergies? Do you have heavy periods with clots? Do you suffer what you would consider abnormal fatigue? Where in the UK are you?

  • Thanks for your reply :) in one way I'm glad it's common - means I'm not alone! On the other hand, it's disappointing that medical professionals aren't doing more to help people in my position.

    I shall try to push for a confirmation in writing to see if that makes any difference, thank you.

    I am not 100% sure, I don't think any relatives have endo, but I could be wrong. No autoimmune diseases. Allergies, yes, but no 'serious' ones. Actually, I do suffer from fatigue - that I would definitely consider abnormal...it's unaffected by sleep (I could have a great night's sleep and still be exhausted the next day). And I am in Scotland!

  • Hi - yes, fatigue is completely different from tiredness. I used to think of it as waking up with a flat battery regardless of how much sleep you have. Unfortunately you don't have NHS Choices as we do in England so are dependent on convincing your GP to suspect endo and to follow the appropriate protocol. It is outlined at the link below. I should go back to your GP and ask what exactly you are being treated for because you have sought advice from Endo UK (and say that this support group is recommended in the NICE guidelines - they will know what that means) and are assured that periods that are so severe as to completely debilitate you are NOT normal and when associated with extreme fatigue are a sign that you may have endometriosis. Also say that you have been advised that an ultrasound is not a diagnostic test for endo and will rarely pick it up. I should put the onus on him or her and say that you want the protocol followed for suspected endometriosis which would now mean referral to a gynaecologist for a lap as the first approach of contraceptives has done no good. If you get no joy with that then I should ask them to write on your medical records that you cannot have endometriosis with their reasons why and be sure to read what they put, then come back if you need help with what to put in writing. Do not accept that you are too young either to have endo or to have a lap. The protocol applies from age 16.



  • Hey,

    Sorry to hear what your going through it sounds very similar to me so I feel your frustration.

    I had been going for the last 9 years to my doctor and hospital who all diagnosed ibs, kidney stones etc as nothing else would show up on ultrasound scans etc. Actually took me crying and refusing stronger pain killers from the gp as I insisted they find the cause and stop masking the problem.

    They referred me to a gynaecologist and I had my laproscopy last Monday, surprise surprise he has now diagnosed endo which and had to cut free my lower colon - not going to lie the recovery from the op has been very frustrating and slow but I'm so relieved to finally know I'm not imagining the pain!

    Go back and tell them you know your own body and it's not right, keep pushing you'll get there :)

  • Hi it took me about 30 years to get a diagnosis . I had a lap in July which confirmed severe endo and suspected adenomyosis. Having total hysterectomy, ovary removal, excision and possible bowel resection in March. Hopefully I will get my life back. Hope you get sorted soon.

  • Hi I live in Scotland too! I suffered from horrendously bad period pains for years. I ended up being diagnosed with endometriosis as my GP sent me into hospital with suspected appendicitis. It was actually a ruptured cyst, my keyhole surgery turned into a laparotomy and a lot of cysts and endo tissue were removed. Before that I had never even heard of endo.

    So many doctors are horrificly unsympathetic towards the condition and can make you feel like you're wasting their time! It's definitely worth persisting though, it can ruin your life, so screw them! They need to help you. I hope you get some answers soon xxxx

  • Keep pushin them. I was 14 years before i got my diagnosis this year and mefenamic acid doesnt touch me when im in pain but i swear by naproxen all they way. I couldnt function some days without it. Dnt take no for answer-tell them you want a lap for diagnostic. Good luck

You may also like...