HELP, PLEASE READ

[Saoussane]

Hi, I'm 16 and for the last 2 years of my life I have been experiencing the most painful and traumatising periods ever. Every month when my cycle comes I throw up 3 -4 times, faint at least twice (sometimes even in the same day) and cannot even walk or concentrate on anything as the pain is so excruciating. I also experience chronic pelvic pain and painful bowel movements regardless if I'm on my period or not. 2 months ago I went to my GP about my symptoms and he suggested that it is normal with girls my age and prescribed me the contraceptive pill and said I have to take it for 3 months and report back to him. However last month (my first month on the pill) when my cycle came I experience the worst pain I had ever felt in my entire life, my mum woke up at 3 am to find me passed out in the corridor in a pool of my own vomit, I cannot recall anything from that night other than the pain. So I immediately went to my GP and complained and suggested that I could have Endometriosis as I had done extensive research on the disease and found that fitted almost all of the symptoms however my GP laughed in my face and said I was way too young, I started crying in the room and had to leave, all he did was prescribe me mefenamic acid (as if I hadn't already tried every painkiller under the sun). My parents have suggested that the next time my period comes they will take me into A&E to get hopefully get a 2nd opinion and clear answer as to why I am living in pain. Also the contraceptive pill has not helped in fact I now experience pain e v er y single day of the month even when I am not on my period, even though the pain isn't as severe as when I am on my period I AM STILL IN PAIN EVERY SINGLE DAY. I am currently doing my A - Levels and cannot afford to spend time missing school and being distracted by the pain during my lessons.

Please let me know if anyone else has the same issues and how you got diagnosed and what actions I should take?

[emma_lou_b]

Sorry to read you are not getting support. I had to fight for two years with my gp to get referred, go back and ask for a referral to gynae and keep pushing til you're referred. I completely sympathise with the pain endured and the vomitting - I was the same (occasionally still am). Don't give up and push, push, push at the GP. Good luck!

[Alpa]

Hi sounds familiar. U need to insist that your GP refers you for an ultrasound scan. Look at the nice guidance for endometreosis as back up. Going to a and e will not work from my experience. You could asks different GP in your practice. Also write down your symptoms and time between periods. If u can afford it go private.

[KML22]

There are a few people on here who have had to really fight their GP for a referral, but you are absolutely entitled to a referral to a specialist endo centre. This is definitely not 'normal' period pain, it shouldn't be so painful you vomit and can't function, and you're not too young at all - I have a friend who was diagnosed at 12! It's shocking that some GPs still treat people with severe period pain like this, is there a chance you could see anyone else at the practice?

I really feel for you. I've had symptoms since I was 15-16, and it did actually force me to have to resit one of my A levels. You shouldn't have to put up with this x

[Hidden]

Hi, firstly, if your GP refuses to refer you, it is possible still to see a specialist all you need to do is write to the endometriosis clinic explaining your symptoms and how the GP is refusing. Secondly, go back to the GP and explain that failing to refer you for this pain is contrary to NICE guidelines (National Institution for Clinical Excellence) and may well also be in breach of its duties as a doctor under BMA Guidelines (British Medical Association). Furthermore, if there is extensive damage which may have been avoided by his failure, he would be liable for medical negligence claims. That usually spooks them enough to undertake the necessary actions.

You are entitled to a referral whether he agrees with your diagnosis or not; I personally would find another GP - I was EXACTLY in the same position as you in the mid 1980s and I'm sad and angry to see that it's still happening. The end result was that by the time I was diagnosed at 21, I had stage four of the disease. I did in fact begin action against my GP who accepted legal liability and paid compensation but it doesn't bring back my health or my fertility.

I would also report them (whether he agrees to refer you or not) to the BMA asking that GPs receive better training; the disease can commence as early as the first onset of periods...do not accept his behaviour, it is unwarranted, unprofessional and placing you at risk.

If you need more guidance/information, send me a PM.

Regards

Maria

[Beth1986]

Hi,

So sorry you are suffering so badly. It is unacceptable for your GP to act like this, although it would seem not to be entirely uncommon. Sadly as has been mentioned before, you really do have to put up a fight with some of these doctors. Before I was diagnosed and around your age I too used to suffer like you did. I once bled for 3 months straight - it was horrific. It wasn't until I was in my 20s that I started to see a link between my terrible periods and my bowel activity and I thought that endo seemed to fit. Even then I was referred to Gastro who shoved cameras here there and everywhere. They found nothing so my GP sent me on to Gynae. Unfortunately even then it was suggested that the excruciating pain, the problems with my digestive system all the horrors I was experiencing was due to a pulled muscle!! At this point I had had enough and demanded the lap as I needed to know what was happening to me. A few weeks later and I had had the operation and was pain free for nearly three years. I take Cerelle, a contraceptive pill, which under my Drs instruction I take them continuously with no break so no period for me. Again not something that fits with everyone.

I know this probably isn't wholly comforting but my story is better than most and I truly believe that if I hadn't put my foot down and demanded the surgery I would still be undiagnosed today.

Please don't give up. You can always seek help and advise from people on here but from the sounds of it seeing another GP who is a little less closed minded would be a good place to start.

I know some days it can seem pretty helpless and the pain is all too much but there is help out there.

Take care of yourself

xx

[Hidden]

I was spurred on with anger and sadness so wrote to the BMA anyway as follows:

"I am very angry that my support group has yet again been contacted by a teenage girl with severe and chronic pelvic pain who has been laughed at by her GP when she suggested she may have endometriosis and asked for a referral. Back in the 1980s, I was given the same treatment by my GP who steadfastly refused to refer me and ignored my symptoms; when I was finally diagnosed at 21 with stage four endometriosis with significant damage to the uterus and bowel I was asked why I never dealt with it before and informed them of my GP's lack of action. It is disgraceful that doctors are still stating the disease is only found in older woman and risks great damage to younger sufferers. PLEASE PLEASE do something to address this failure to understand by GPs or you will find a whole generation of women become infertile and suffer chronic pain. I am frankly tired and angry this is still going on thirty odd years after it happened to me.”

I've also sent it to the BBC so you never know!!

[Hidden]

Could your parents possibly pay for you to see a gynaecologist privately? I know you shouldn't have to do this but it would get you a foot in the door and once seen they can treat you on the nhs. Either that or change gp. Shocking the way you have been spoken too. Take someone with you for all your future appts xx

[Saoussane]

Wow thank you so much for the advice and I will definitely see another GP or specialist to ensure that I get the right treatment and care. I'm touched that you care enough to write to the BMA on my behalf and I pray that things do change for young girls like me .

[Hidden]

I am 43, diagnosed with no hassle 3 years ago. I was on the pill for donkeys years only stopping it to have 2 children so they think it was masked by this. But if either of my girls have painful periods I will be very assertive with our gp. It is mainly due to this site the knowledge I have gained. You hear too many stories of young people not being taken seriously and you sound like an articulate, intelligent woman. Hope you get some answers and help soon xx

[Audzluvinpink]

I was diagnosed with stage 4 endo at 13! And I'm currently 17. So no! You were not too young! In fact, my gyno thinks I was actually born with mine, but was "activated" when I started my period. I'm so sorry you had to go through that with a DOCTOR! Iv had 3 laps in 4 years and tried countless drugs and treatments. You're situation is nearly identical to mine.. unfortunately. It's uncanny. But iv had to drop out of regular school and do online school, because the pain was so unbearable and chronic I'm currently with a specialist who is AMAZING, but we still havnt found the answer. I totally suggest you try to find a specialist! It breaks my heart knowing people have to go through the same agony I do- I wouldn't wish it on my worst enemy. I wish you luck and health girl! Stay strong and know your not alone!

[Angellouise]

My daughter is 16 and is going through the same thing. They did not find endometriosis but she continues with periods that last 35 days straight and cramps , she got the depo shot and that has helped wth the pain some what and it has made the periods lighter. I know the hell you are going through and how hard it is when you miss school and have to catch up. I’m taking my daughter to a natural path to get her cheek swabed to check her DNA to see what she is lacking and try and balance her hormones. I hope you find out what is going on and get better. Maybe go to the ER when you have a bad attack of pain.