15 year old with endometriosis?

HI, I am the mother of a teenage daughter and would be so grateful for some advice please.

She started her periods at age 10 and since then has been regular but extremely heavy and very painful. She has recently had all sorts of problems with her bowel - chronic constipation etc.. and is always needing to wee. Recently she has begun to experience sharp, shooting pains throughout her uterus/vaginal area. These stop her in her tracks and are really severe. Can anyone shed any light? We're going to the GP on Tuesday but, so far they haven't taken anything very seriously because of her age. Is it possible for someone so young to have endmetriosis?

Thank you

15 Replies

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  • It's possible but it can also just be an age thing. With the reference you have made to bowel and bladder it does sound a lot like endo.

    Unfortunately as the only way to tell is by doing a lap, a lot of doctors will be reluctant at that age; hence why it takes an average of 10 years to get a diagnosis, tho for me it was 17 years! I would expect that they would firstly consider things like the combined pill to help regulate things. I went on the pill at 13 or 14 and it changed my life and kept me relatively symptom free until I had to come off it when i was 21.

    I think you may need to talk to your daughter and the doctor and discuss things like examinations. They are obviously scary as an adult, and more so at that age. Also, have a look at the Endometriosis For Dummies book in the library - there is a good few sections on being a teen with endo, and diagnosis and treatment options.

    Good luck x

  • Thank you so much, I'll have a look at that book too :)

  • I was the same, started my periods aged 10, they gradually got worse but was told it was normal and to stop being such a hypochondriac!! I'm so glad that you are taking her seriously, I wish my mother had! Keep pushing the drs, keep telling them it's not normal period pain and that she needs to be seen by a gynea. There are lots of things it could be not just endo.

    My advice to you is to get her to keep a pain dairy alongside a menstrual one so you can show the drs how bad it is. It's hard enough being a teenager without the pain added! I wasn't diagnosed until I was 25 after my second child. I really hope she and you can get some answers, good luck for tuesday x

  • Thank you very much Missteal

  • Oh defintely yes as that is when most of us first realised we were not experiencing our periods in the same league as everyone else in the class.

    The australians have produced a super booklet for school girls and it's online.

    endometriosis.org.au/images...

    Please read it and show it to your daughter too. I first went to the GP when I was 14 or 15 and then sporadically since then getting fobbed off each time with 'it's normal for periods to hurt' and that type of cobblers. I eventually got my operation over 30 years later and you can imagine the mess my insides were in by that time and the amount of my life wasted on pain and painkillers and enough tampons to keep the local economy afloat.

    Thank goodness your daughter has a mum there to talk to and help.

    She definitely sounds like and endo gal, and it needs investigating.

    I must warn you that this disease is not given the priority it deserves by the NHS and waiting lists for gynaecology appointments can take a very long time to come through, and each month wait is more of hell.

    Please I beg you in the mean time, get her on to birth control pills back to back.

    Or push for the mirena coil, even though it says not suitable for women who have not had a baby, and it takes around 5 months to get working, it should then stop her hell for up to 5 years, right through exams and college and give her back some quality of life without having to remember to take the pill or loads of pain killers.

    A lot of us endo girls and ladies have not had kids and still find that the mirena is a god send of relief when it gets working.

    Should you manage to get your daughter a laparoscopy in the near future, that is the ideal time for her to have the mirena fitted as it saves her from having what is for us endo ladies a rather painful experience having it inserted.

    The sooner you can find her a way to stop her periods the much better her chances for future fertility being saved and the less she will suffer from endometriosis.

    It's the bleeding each month inside that cannot escape out, that causes the most damage to internal organs and the sooner you can sort that side of things out the better her quality of life.

    This is not about contraception or birth control, it's about menstrual control, and just because she is having to do something about her periods at a young age doesn't mean she is going to be out and about being promiscuous, on the contrary, for endo ladies sex if often extra-ordinarily painful and the last thing any of us want to be doing.

    clearpassage.com/the-role-o...

    Here's a list of all the accreddited endo centres in the UK

    bsge.org.uk/ec-BSGE-accredi...

    If you must push for a referal to a gynaecologist, these are the best places to get referred to at present. She needs to be seen to by not a regular gynaecologist but an endo specialist gynaecologist, and while there are a few not working directly with the accreddited centres in the UK, it's a bit hit and miss about which ones can handle the more complex cases.

    So save these links so you know where you can look them up if you need to.

    Here's another which can explain one of the reasons for the bowel problems too (with illustrations)http://www.danmartinmd.com/rvendo.htm

    Please ask her to come on this forum with you, and ask any questions she might have, whether it's about surgery, or any medicines she is being offered or whether is the colour of her bleeding the right thing to expect. We have all been there and most have a lot of experience on endo and living with endo and battling endo, and most of us were teenagers with endo and struggled from a young age with coping and getting through PE and sports and exams and jobs and so on. No subject is too icky to discuss, and it is an icky illness, so she might find it helpful to ask some of us rather than asking mum those rather embarassing questions that we all have to face at some point. If she's not wanting to ask in public, then you can check box the option to make a question only viewable by the ladies on the forum and not the entire viewing world.

    If she had endo and severe symptoms, it may not be possible to get rid of it all with just one surgery, she might need several sporadically over the years, and a lot of parental support, not just emotionally, but financially and practically too.

    She could be one of the luckier ones and find that with the right surgery 1st time round she gets a huge amount of relief from her symptoms and isn't plagued too much again in the future, but the statistics tend to be that it will come back at some point.

    Hope your find the links helpful and absolutely push for a diagnostic laparoscopy, everything you have describe does indeed point to endo especially because of her young age. It is a daunting prospect, but many of us have been there too and we are still around and still coping as best we can decades later.

  • this sounds very like endometriosis, get the boat moving push for all the relevant checks ,i have very similar symptoms, and because mines was undiagnosed for years it had enough time to fuse bowel and everything else for that matter, i had been told it was normal to have this pain even put it down to ibs! poor wee girl i hope she is ok dont take no for an answer, they may be doctors with letters after their names...but she is your daughter and no one knows her like you...if you think something is wrong then go with your instincts...hope she is ok xx

  • I started getting symptoms when I was about 17 and then went on the pill which masked it until I came off years later (may have also slowed the growth too on the plus side).

    I definitely regognise the shooting pain inside vagina and always wondered what that was.

    I do wonder if the endometriosis lesions would be visible in someone so young (not to say they won't be painful and real.. just that early endo can be very hard to see). I am not saying that trying to get an early diagnosis is not worth it because if that is possible then it could save years of searching and reduce pain and help with life choices but if a surgeon doesn't see anything at this age, that does not mean that endo isn't there.

    You are fantastically supportive for looking into this for your daughter.

    All the best

    Crystal

  • You are so kind, thank you so much for these helpful responses.

  • I was off sick every month at school as I always threw up. i ended up having to drop an exam -fortunately not an important one. i hope you're daughter can find a solution before exams start.

  • hey my first trip to docs i was 13 started my period but the pain was horrendous i remember being laid on my bedroom floor sobbing becos it was that intense...my mum dint take as much notice as she shud of..she has regrets now but im not mad at her......and i struggled on thinking it was the norm and it really wasnt...i then had early pregnancys which they think slowed it...and now its hard alot of us were egnored and then wen they listen its already destroyed parts of our body...she is very lucky to have a mum like you ...and like impatient said if she or you have any questions then just ask there are many of us on here fighting this...my advice...dont let them egnore her....xx

  • hey my first trip to docs i was 13 started my period but the pain was horrendous i remember being laid on my bedroom floor sobbing becos it was that intense...my mum dint take as much notice as she shud of..she has regrets now but im not mad at her......and i struggled on thinking it was the norm and it really wasnt...i then had early pregnancys which they think slowed it...and now its hard alot of us were egnored and then wen they listen its already destroyed parts of our body...she is very lucky to have a mum like you ...and like impatient said if she or you have any questions then just ask there are many of us on here fighting this...my advice...dont let them egnore her....xx

  • Thank you missee, so sorry to hear about your bad time. They are referring her to the paed dept at our hospital - as an urgent case! Thanks for all your advice:)

  • I have the exact same and I'm 14 now, I started mine about 10 years old and experience the same symptoms but I've not been checked out, I've found that I get a tonne of shooting pains when I need to poo during my period and I end up being sick due to the pain and I sweat cold sweat, like if I had a tempreture, I have looked up everything I could about it and I came to this website and I've been given the advice to check it out with a doctor etc, I hope this helps! c;

  • If you aren't already start keeping a diary. I print calanders out from the Internet and ontop of the days date if there has been any problems I draw a symbol ontop. My key is

    /, pain but no meds

    X, pain so need meds

    And a little tear drop for blood

    So they can see when the pain comes and when my period is too.

    Shooting pains could be something to track too. I would also write notes in a note book and date it if needed, especially in the early days with all the symptoms. I also turned each month into a % of bad time.

    Hope you get somewhere!

  • Also, worth keeping a note of days missed from school!

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