shes 'too' young

Thought I'd share my experience as I was completely unaware of any sort of support networks for Endometriosis!

I was 12 having horrendous pains in which going to the Doctor, I was told 'you have bad period pains' so I continued to go as it came to the point I was missing school as I was in pain. I continued to see my GP that when I did become sexually active, I was reffered to the GUM clinic everytime I said about my period pain, gave them all my symptoms and explained I was being safe but continued to send me there. I felt so embarrassed and felt that I wasnt being listened too especially when my results came back negative every time. I became so emotional with the thought I knew something wasnt right and was offered anti-depressants because I couldnt cope. Throughout this time, I was told 'it cant be Endometriosis because you are too young and usually its heredity'. If I had a pound for the amount of times I was told I was 'too young' to have it, I'd have a lovely big house.

At 16, I couldnt cope with the pain, I was borderline of not being allowed to attend my prom due to my attendence of being off sick so much! I went for a second opinion in which I was sent to the GUM Clinic (again!) results were negative and I was finally reffered. The stigma I recieved as well was horrid, the department I went to was for pregnant ladies, the amount of people who shook their head at me and had said 'your too young to be a mum' just by looking at me. I do remember at 16 when I had an appointment, I was asked about my thoughts on suggested Endometriosis and my thoughts on starting a family.. I was 16! Last year of school and hoping to go to college, and I thought I'd be happy with someone before makig that decision and I was so upset as they spoke about the negative effects of endometriosis and fertility. Throughout the years I was told to take paracetamol and Ibuprofen to relieve the pain but it didnt work in which I told them.

Finally, at 19 I had a laparoscopy in which I was diagnosed with Endometriosis was stage 3. I had the mierra coil put in after the surgery but the relief was unreal. After suffering from 12 and getting an answer at 19! I have had a second operation due to increased pain at 22 and now im 24, last week I was taken into hospital for a ruptured ovarian cyst as well, still informed to take Paracetamol and Ibuprofen. This has been on going that I am completely unsure of what to do now.. Advice would be brilliant and greatly appreciated!

Thankyou in advance

5 Replies

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  • Hi, if you live in uk then have a look on the BSGE website for a specialist centre where there are experts who can help you. Stage 3/4 endo should only be treated in such centres. For the pain you could try a heating pad which can help. Also you can buy co codamol over the counter, which is paracetamol and codiene. Also speak to GP about pain relief. Explain how the pain is effecting you and that you just can't cope with it anymore.

    You definitely weren't to young to have endo.

    I started my periods when I was only 8 years old (now43). By the time I was 14/15 I was rolling around screaming in agony every month.

    Like you I knew something was wrong but no one would listen. I never gave up trying to find out what.

    Unfortunately for me I was diagnosed with very severe stage 4 July 2015. Ovaries and tubes were too badly damaged by the endo and with my husband having trouble in that department we stood no chance of having children so had a hysterectomy this year in March.

    Fortunately for you , you are still young and with the correct treatment you will get relief and will eventually go on to have children if and when the time is right for you.

    Please look into the specialist centres and get the treatment you deserve.

    Also search on here for a lady called Lindle and look at her post. She is a wonderful lady and wealth of information. She's not so active on here now as she has set up her own Fb support group. If you would like to join the link is on one of her posts.

    I wish you all the luck in the world. If you need any help just ask.

    Good luck

    Jeanette.

  • Wow I could have written the same thing myself - exactly the same periods at 9 .I'm 43 now had a hysterectomy . I just help now and then if I can on here especially the young ones . Good luck and best wishes c xxx

  • I started my periods when I was 13 and got told pretty much the same to young to have endo every month rolling around the bathroom floor in agony I was put on the pill at 15 and was put on mefonamic acid quite a common one used for period pain this helped for a few years I came off pill at 25 to start a family and that when all the bother came back I had tons of hospital admissions scans blood tests swabs were clear one doctor was convinced I had pelvic inflammatory diease but finally I was giving a laprostopy at 27 told me had endometriosis went on to have a family at 32 came back after I had my son but think u should go back to gp and ask for a referral to bsge centre I wish u best of luck and hope u get on ok big hugs to u xx

  • God ibuprophen and paracetamol !!! admirable if you can get by on that. If not then co codamol ( don't take more paracetamol with it as already contains it ) there is also tramadol. Nurophen plus can be bought otc that's codeine 12mg and ibuprohen be aware some people /doctors may frown on codeine and they especially find it hard to give tramadol these days I can understand that they can be abused but if your in pain well hand them out I say!!!. That's pain meds .other options are zolodex/ gonadatrophin agonists but nhs usually only give them for 6 months. I managed 2 years but then they stopped due to cost I think. Ive had bits and bobs of conservative surgery dermoid cyst removed and the latest excision technique by a pretty well known gyne ( begins with T ) on nhs had pain again shortly after. Get to a bsge centre list on web at least, don't bother with a usual gyne. It can come back and progress so be aware of this. Not always . It can be managed but there can be large gaps between seeing someone and then seeing someone who is rubbish and fobs you off. If your not in pain now then just maybe leave it . If you are in pain try get referred to a BSGE centre and they will look into it. I'm here if you want to pm me at anytime for advice. I'm 15 years down the line with this age 43 and know all the fob offs and tricks they play its really not good . Oh and don't get pregnant thinking it will cure it as it might not but it CAN be managed so don't give up hope - if it snot being managed its not your fault it is probably because of delays and fob offs from doctors etc but stay strong keep trying get second opinions , speak to people on here or me - but if you want a baby that's your choice but don't do it to cure you as it can come back after. Zolodex does the same thing as pregnancy in a way in that it gives your body a break form the hormones for a bit. Ive had a hysterectomy recently and again you cant believe this is the end of all your troubles - it isn't for me. It can still be on your large intestines ( no one has looked at mine and I'm fighting for this) - I'm even going private to do it as 6 months off work now and no help from nhs massive delays and aggressive consultant ! Depend where you are at. Mirina helps some people , progesterone only pill is similar also but not everything works for everybody. Best of luck C xxxx

  • I had the exact same happen to me, I was being treated from bladder/kidney infections for 7years, untill I changed my doctor 8months ago...Iv now had the lap and diagnosed and treated for endometriosis..it's disgusting that so meaning people are being left in pain for wrong diagnosis

    Emma xox

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