Can someone help?

i started my period when i was 13 from the age of 16 i begun getting extreme pain to the point that for the first couple of days i couldnt move and for the rest of the duration (however long it wants to be for that month) id be doubled up on meds and have severe stomach cramps, i thought it was normal, had noone who had a similar experience to say that it isnt, so i carried on till i was 18 with nothing said about it then i found a leaflet about endo and my symptoms were so alike i got scared and went to the doctors they said it was nothing sent me for a bloodtest and noticed my iron was low so i have been going to the doctors for about a year now complaining of my extremely bad periods and they said they think its more than likely to be endo, but they seem so ignorant about it. I say the pain im in and they just keep prescribing me with pills, im currently taking microgynon which is making me worse, i have cramps all month long, bled for 3 weeks straight now, i went for my ultrasound transvaginal last week and they said that my right ovary was cloudy but everything seemed ok, but it hurt so much when she put it towards my right ovary, i went back to my doctor the day after as i had a scheduled appointment and she said everything is fine nothing to worry about, i said well what about endo she said that everything seems fine but i should carry on with my pill untill my other doctor has said to, so i said ok but im missing so much time of college and its beginning to affect me mentally now, i am seeing a therapist because as hard as other things are i cant deal with everyone thinking im a liar, everyone thinks im a hypochondriac who is having a bad period????? but its not just bleeding, i am now aneamic because when i do have a period i bleed so heavy for so long, almost 3 weeks a time, im sick and tired of having to put up with this pain and then having my doctors be so ignorant, my teachers think im putting it on to have time off and even my mum thinks i do it to get out of chores, its ridiculous now, how happy i would be to rather do chores than to put up with this pain they do not understand!!!! i have stomach cramps, dizzy spells where i will faint i cant have a bath too hot or it will make my pains get worse, i know this is gross but when i am on the first two days of my period i get diarrhea and am sick alot, its like i either sit on the toilet crying because im in pain because im too scared to move or im in bed curled up in pain wishing like someone would just put me to sleep to take the pain away, its so scary as im only 19 and i really hate being alone in this

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19 Replies

  • Hiya I was the same as u on a lot of pills I kept having urine infections I kept going to doc and kept saying it could be this or that and was like that for years at the end on new years I got fed up so much that every time I was in cronic pain I dragged myself to the hospital and they would admit me or let me go after drugging on morphine after rushing in and out 30 times and be admitted 3 times the 3rd time I refused to move till I saw action being taken cos by then they new wat was wrong and I was on oremoph tramadol and paracetamol and few other bits and pieces so after kicking off so badly that I made the doc look like some piece of durt he realised I wasn't making it up and a week later I was in having surgery and they said if I didn't kick off way I did by now I would have ovarian cancer and my left ovary had a cyst that was endo but ovary was stuck to pelvis and wat ever is around it and tube was dead it had no use for anything so if I was u instead of going to the doc keep going to the hospital and if after so many times they don't do nothing say u r not moving till you see the top person cos its not normal to be in pain like that I wish u gd luck as I know wat u going through.

  • Thank you for your reply make me feel so much better knowing people understand and oh no that sounds terrible and some doctors really do not understand I'm so glad you stuck up for yourself and fought for your body I know it has no cure but I hope everything goes well got you xxxx

  • I agree do not give up only you and us know what pain levels your enduring if you have to call your gp or go to the hospital when the pain kicks off you must! Unfortunately you will come up against ignorant gps nurses consultants etc but somebody will listen you just have to keep on don't let it beat you you most certainly are not alone. Xx

    Good luck Sharon. X

  • Thank you for your reply Sharon, it's nice to know I'm not going crazy, it's a crewel thing to have an people out it down to being nothing one say they will take this seriously ! Xxx

  • The most important thing you can do at this point is get a second opinion. Sometimes they get things wrong or it takes a while to diagnose, and they will use a process of elimination. If you feel they are not getting to the real problem, you are always entitled to a second opinion, whether it's with another GP or consultant. If you need help you can phone PALS - patient advisory liaison service - different number for each hospital usually who should be able to advise.

    The most important thing is that someone recognises how much pain your are in to get you the right help. We believe you!

  • Thank you so much for your support I'm so glad there are others who know what I go through, I wouldn't wish this on anyone but thank you so much for the advise i will defo call them if in need xxx

  • Heya.

    Im 22 i was also 13 when i started my period abd i always suffered badly with pain i was put on microgynon and started to pass out. They did a neurology exam and actually told me the microgynon could making the fainting and headaches worse and immediatley took me off it. I continued to get excrutiating pain dizzyness and diarrhea when due on. I was going to my doctors every month complaining and ended up in a n e on a couple of occassions. I had the ultrasound transvaginal and they found i had cysts on my right ovary but the pain i get tends to be on my left so i kept complaining to the docs. They told me they suspected endo and gave me all medication under the sun. But never actually sent me to get a diagnosis. I then contacted the practice manager at my surgery and told her i wanted a laparoscopy and explained my symptoms. She arranged an appointment with my doctor who then finally referred me for the surgery. I had the laparoscopy two weeks and was diagnosed with endo im now currently waiting for hormone treatment. Dont give up trying. I thought i was hypocondriact cos everyone kept dismissing my complaints. The doctors kept telling me i was too young to have endo they were clearly wrong. You know your own body and if you think something is not right keep pushing. Ring the practice manager at your doctors. I told them i would sue if they refuser to help. Bit drastic i know but i did eventually get some help. I hope you manage to get a diagnosis soon. I know how it makes you feel when people think you exaggerating all the time. Good luck. Xx

  • Omg that's like me you begin to think your bodies playing tricks on you to make you sound like a liar? I'm so glad you finally have your diagnostic, only up ay! Sta well hunnie thank you for you're advice xxxx

  • Honestly like my partner is amazing but it got to stage were he even thought i was exaggerating cos i would just curl up in a ball and cry. The things i found helpful were massages on my lower back. Hot water bottles and wen the pain got really bad i would sit for hours in a warm bath. Keep pushing hun dont give up yoy deserve a diagnosis. Xx

  • Yes that's just like my boyfriend he never used to believe that something could have such a big impact on someone life and yeah I usually sit I the bath for hours but I can't have it too hot :( I also get really bad pains in my legs to the point I can't walk my family end up sitting massaging them for hours xxxxx

  • Absolutely ditto here to everything you said - I'm 23. It's horrible!!!! They keep saying I'm too young etc. I'm in the middle of being diagnosed - just had a scan and they need to look into having a laparoscopy. I also bleed out of my rectum every time I pass stools and have done for about 3 years. don't give up!! They've been telling me the pain is because of my ages and the bleeding is 'IBS'.... I'm still calling docs constantly and am finally getting referred now, fingers crossed they find something xxxx Good luck

  • Hi Im so sorry to here all that your going through you have to come to the right place for support.My daugter was 14 when she started having excruciating pain during her periods & outisde of her periods aswell & all the other symptoms that come with endo.We had to persevere & persevere for something to be done. She did a pain & sympton diary that we printed off from the endo uk web site& took it to the consultant & then he started to believe us & then we told him directly that we want a lapacroscopy because they were given her hormone pills to treat her for endo but didnt no for sure whether she had it.She had the lap in dec last year & has stage 1 endo she is still in severe pain so we are in the process of getting her referred to a endo specialist centre which you can find on the bsge web site.My advice is dont give up go armed with evidence & tell them what you want.All the best xx

  • Many people are telling me to write a diary I think I might have to it seems to be working and omg I'm glad you were there for her because without my mum sometimes I would probably just give up and accept this thanks for your message sending you and your daughter many hugs xxxx

  • SO sorry you're going through this, please remember you're not alone, unfortunately many women suffer this was and are not taken seriously by their GP. Im 44 and just diagnosed with endo - I had horrendous periods from the age of about 13 and because nothing showed up at Gynae exams, I was continuously fobbed off until I finally had a lap earlier this year. You have to persevere Im afraid, often to the point of becoming a nuisance at your doctors' surgery! The best advice I can think to give you is to keep a diary of your symptoms, so when you visit your GP or any consultants you have a record of what type of pain you have (aches, stabbing etc), whereabouts on your body it is and when the different pains occur during your monthly cycle. Also write down when your bleeding starts and how long it lasts - this will help to build a pattern of what is happening to you and will reinforce what you tell your doctors. Godd luck - I hope you get taken seriously soon!

  • Wow you've dealt with this all your life and only now they have sorted it, atleast you finally have been diagnosed I know they don't have a cure but atleast you can get the treatment you need and are defiantly overdue xxxx

  • I'm 18 and I know exactly how your feeling! I've had the symptoms since I started my period at 15 and until now I thought every girl went through the pain. I dread my periods tbh. I've just had an laposcopy and nothing was found, and they told me ill just be on pain killers for the rest of my life! It's not alright lol. So I'm pushing for another opinion. Honey, just push.. push the doctors to find out what's wrong and don't ever give up! It's their duty to make you better. Although I warn you it will be long battle :( I wish you all the luck. And if you ever want to talk feel free to send me a message. Xx

  • Yeah defo get a second opinion some doctors are that ignorant they just don't care and thank you Hun I'm glad there's such lovely people to support everyone living with this problem xxxx

  • I think the worst thing is that the doctors make us seem crazy as if we are making it all up! The amount of excruciating pain we go through could never be made up. & im sure like me, if you could you would swap it all for a pain free life. I really hope you get your diagnosis hun, I know you'd rather not have it but at least if you know what's causing you the pain you can start to treat it xx

  • My partner was exactly the same. Once i got a diagnosis he began to understand a little bit more. But the reason i joined this site is cos the only people who seemed to really understand what it feels like to be in such excrutiating pain are those that have suffered it too. I never have the bath too hot either cos it makes me dizzy and feel sick. I take anti sickness tablets too cos when im due on the pain physically makes me sick. I know what you mean about the pain in your legs i genuinely felt like i had broke my hip once and i felt like someone was stabbing me repeatedly in the side of my leg. I take tramadol and mefenamic acid to manage the pain. But theres times that its still unbearable. I try to sleep through it but it does impact drastically on my ability to work as alot of the time im out of it from taking the tramadol. I know it sounds strange but i actually cried with happiness wen i found out i had endo because i was relieved to know i was making the pain up. I used to just think i had a low pain tolerance when that was never the case. Stay positive keep pushing and im surr you will get a diagnosis. Being young shouldnt give doctors a reason to dismiss us. Stay strong :) xxxx

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