I'm 19 and I have had crippling period pain since I was 13. I am in so much pain it is making me vomit and pass out every time I have a period (which is fine when I'm at home but is not fine when I am in the middle of Boots!!)
I have been going to the GP about this for years and have been on 5 different pills, none of which seem to work. I have asked for a gynae referral multiple times but my GP has been very dismissive of my pain.
I am currently on the desogestrel pill, which has stopped my pain for now, as I haven't had a period yet, but it has made me really depressed and affected my mood dramtically
In the end I went for a private gynae appointment. He said it could potentially be endometriosis, but instead of doing anything he has put me on a different pill. I felt very dismissed in the appointment, especially because he didn't ask me anything about my pain and how it is affecting me. I was told multiple times that "painful periods are an annoyance that many women have to go through", but I don't think passing out every time you have a period is just an annoyance.
If anyone has any advice on actually getting diagnosed or treated properly it would be greatly appreciated. I feel completely dismissed and disheartened and it is ruining my life. I just don't know what to do anymore.
Thank you <3
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Ezbhez28
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Hi! Im so sorry your going through this, sadly it can take years to get diagnosed (took 14 years in my case). Any contraception pill will just suppress endometriosis symptoms for the duration you take them however I understand your still experiencing some negative effects of your medications. I have never ever been on any contraception medication for my endometriosis nor will I purely because I am petrified beyond words how poorly I would most likely be when my periods eventually return and because they take a good 18 months for your body to settle back into a regular cycle (this is a consideration you should have if your thinking about starting a family).
I had my first lap 2 years ago and they diagnosed and treated my endometriosis by excision as it was quite extensive and spread. I was a bit tender afterwards but mainly very easily exhausted in the first few weeks. The endometriosis symptoms were more manageable with regular pain relief and I didn't have the sickness, upset tummy and hot flushes that made me collapse or be sick. This was of course bliss but it sadly didn't last.....within 6 months of the surgery I was losing dangerous amounts of blood again along with all the usual symptoms. I was fast tracked as urgent with my partner for IVF and we completed all our tests, then i lost him to Covid. So....Im now awaiting another lap and hysteroscopy as I have multiple fibroid's inside the womb, some quite large.
Im hoping this will be my last surgery but I doubt it, my advice for you would be keep going back to your GP, explain exactly how your symptoms affect you and your life...do a diary of everyday and take it for them to read if you think itl help. Tell them if your unhappy with something and ask for a second opinion, ask for referrals (gynaecologist) if you feel you would benefit...only you know your own body. I had an appointment last year with a new GP and she failed to look through my medical history, she tried to tell me that counselling would stop my pain and then send me on my way....until I showed her my burnt tummy and cried begging her for help which I got with an apology. Contraceptive medication only treats your symptoms, it does not treat the condition. Due to my blood loss, my levels with practically everything is severely low. Im on IV iron infusions (in place of blood transfusions) B12 injections every 3 days, calcium medication & iron tablets as a top up - please make sure you keep an eye on your blood levels. Iv also been referred to the pain clinic as I have tried every pain medication my GP can prescribe including slow release morphine....I live with a hot water bottle but my skin is now severely scarred and burnt raw (it is no pain compared to internally).
I am so sorry that you are being pushed from pillar to post and suffering inbetween, I completely understand how you are feeling as I have been there. Keep pushing with your GP, try and get an appointment when you know you will be unwell....I know dragging yourself anywhere when your doubled over in agony is the last thing you could think of doing but if they see it first hand then it might nudge them into doing something. Remember you can take 2 paracetamol and then 2 hours later you can take 2 ibuprofen (providing your not allergic or asthmatic). Buscopan is worth a go if you havent already tried it. Make sure you have something to eat before taking anything tho Also....ask about your fertility options, it may not be of interest to you at present but knowledge is key! Im in my thirties....if i knew what i did before I lost my partner then I would of asked for that IVF referral long before it was done as urgent. Rest when you feel you need to and make sure you eat well...take care of yourself and im sorry for responding with such a long reply! x
P.s....I collapsed a lot, school and college was ruined by weekly ambulance calls and hospital trips, I had to pull off a motorway with a car full of young kids in minus 4 degrees because I almost fainted at the wheel (threw up and collapsed when i did stop), I fainted at a job interview before they even opened the door to me. Iv had no social life as everything has been revolved around my endometriosis and how it affects me day to day....I do get a few good days in a month and seem like any "normal" person but for the best part im in bed curled up, dosed up to the eyeballs trying to get thru the sheer pain. This is such a horrible horrible disease and I pray you will be listened to fully and have the appropriate tests/surgery arranged in good time, Im always happy to chat further if you would like & I wish you all the very best in getting the help you need x
Thank you so much for your kind words and advice. It is so helpful. I am sorry for everything you have had to go through and I hope things start to get better soon <3
Your welcome anytime, look after yourself. Theres some really good informative advice here (below my message) I do hope you get referred for the help you need <3 x
So sorry to hear your unfortunately familiar & common story. The medical profession is largely archaic in its approach & treatment of women & it's a relentless & exhausting battle.
Firstly, can you change GP?
Secondly, these are a lot more than 'painful periods' and the right diagnosis/ treatment pathways aren't being followed by your doctors.
Please check out the links below - the first contains the NICE guidelines for diagnosis & treatment - which you can certainly print out & highlight for your GP... Unfortunately you have to get tough sometimes, especially when you feel at your weakest 💕. Your GP cannot refuse to refer you, stay in their office until they take you seriously - let yourself cry if necessary, tell them your life is being ruined & it's not just cramping, it's agony.
The 2nd link is for endometriosis specialists - you can enter your postcode and find a centre near to your location, which your GP can refer you to. They will most likely want to follow other steps first (pelvic scan, perhaps MRI).
Remember that a gynaecologist, however experienced they say they are, they are not endometriosis specialists - which is why there is an actual BSGE registration list.
Endometriosis is only truly visable & diagnosed via laparoscopy - it is super rare to see any evidence of it via external or internal ultrasound & MRI scans may pick up some endo but won't show the full extent, if at all.
If you are diagnosed with endo, then your GP cannot refuse to refer you to a specialist for your treatment.
Stay in touch - we're all here for moral support & check out the username "Lindle" as she has lots of accurate & helpful information about all things endo & it's worth going through her posts (some of us can get things wrong & post a bit of misinformation here & there, so she's a good person to learn accurate info from).
Hi, I understand your frustration. If you read the posts on here you will see that you are not alone and unfortunately most of us have been dismissed by health professionals. I find it so upsetting that women are still being treated so badly. I’ve been struggling with this for over 20 years and I haven’t noticed any improvement in the healthcare system or the way I’ve been treated. I know it’s exhausting but you must keep fighting. Be brave and tell your g.p and consultant that you are not happy with your treatment and remind them of your long history of pain and other symptoms. Tell them that this is normal and it needs to be investigated further. A big part of the problem when having appointments is that they don’t look through your history (I guess they don’t have enough time). They also fail to even ask where the pain is or do an examination. I’ve lost count of the disappointing consultations I’ve had that have been a complete waste of time. My main advice would be to plan and make notes before you go, and take control of the consultation- it’s difficult but it will pay off. I tend to do a chronology now of my history and all of the medication and procedures I’ve had. It helps to get things clear in my mind. Keep going with it and don’t be fobbed off anymore x
Hi I'm sorry you are being dismissed. I've been there and it feels horrible. Something I've learned over the years is that you have to be a firm advocate for yourself. It is not normal to experience what you are going through and no doctor should be telling you it is. Keep records, do research around treatment options you are offered and look into non medical ways you can help yourself. For example a tens machine can help take the edge off the pain by disrupting pain signs. Or a combination of heat and ice. A GP is only a gatekeeper to drs with better knowledge in an individual area so polity demand to be referred to a consultant (but be warned the waiting lists are very long due to covid). I find saying that you want to be a productive member of society helps. Detail how you quality of life is compromised as well as the symptoms you experience. And stay as positive as you can. This has been proven to help with pain management. I wish you good luck.
I hope you get someone in the medical profession take you seriously. I was 52 when I was diagnosed after suffering like you from a teenager including the passing out but mine was either school or church back then.
I was only operated on because they thought I had ovarian cancer, it was endo in the end.
I can only say ask for a referral to someone who is recommended on here or if need be ask for a second opinion but not within your hospital trust.
hi hun how's u doing today, I'm sorry to hear that ur suffering 🙁 unfortunately I feel ur pain I've also suffered with my periods since 13 and diagnosed have been diagnosed with endometriosis since 05. I pass out due to pain and blood loss, to boot I've also got low blood pressure (😂 Typical) that doesn't help me either.
I've have however learnt to listen to my body and I get warnings eg I feel like the blood had gone to my feet and I get a pressure at the base of my skull, so I get half a chance to get to safety, before I pass out. I've been in pain 24yrs now and tried every combination of hormonal treatments and pain relief medications, I can't work and feel completely let down by the NHS 😔 I do hope that u get the help u need soon hun, if you eva want to talk or rant 😂 please pm me,
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Also....ask about your fertility options, it may not be of interest to you at present but knowledge is key! Im in my thirties....if i knew what i did before I lost my partner then I would of asked for that IVF referral long before it was done as urgent. Rest when you feel you need to and make sure you eat well...take care of yourself and im sorry for responding with such a long reply! x
Does anyone else suffer with lower back period pain, without the period.
Period pain in between my periods. 
Am I overacting or is it just bad period pains? 
Do you think I have endo? I'm worrying? Nobody takes me seriously:-(
Severe pain two days after period ended - Is this a sign of endo? 
