very young for endometriosis! need help and advice please

I am 16 years old and have been diagnosed with endometriosis. i was given a laporoscopy and the mirena coil for the treatment but told it wouldn't be cured only treated. The pain still hasn't gone away and my doctor said that there is 2 possible treatments, to go through early menopause or to wait when i'm older and to have children. But im worried i might not be able to have children as i've been told the mirena coil can affect fertility! :( i've also been having big mood swings, emotions being out of control, periods being all over the place and still being in chronic pain! has anyone else gone through this?

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  • Does the merina coil affect fertility? I had the same as you lap and coil and I'm still in as much pain. Message me if you want x

  • I'm not sure, i heard from other doctors that it was unusual that i had a mirena coil fitted so young as it can sometimes affect fertility and that's why they put it in women who have had all the children that they want :S i was put on the spot a little bit about having the coil fitted in, as the surgeon asked me last minute and i didn't know what to say about it. and yes, i am still in a lot of pain and want to get it taken out, i've had it in for 9 months now! how about you? x

  • Hi girls I had the mittens coil fitted 2 years ago during my 2nd lap when I was 20. For me it only made things worse I was very unwell with it do had it taken out after only 2montgs. All I new is that the mirina coil is a contraceptive whilst in you I have never heard anything about it affecting fertility because if that was the case I don't think I would have had it either. I no that women without endo even have it as a contraceptive. I hope it doesn't case u pain or make you unwell hun, but I had to come off it very quickly and try a different treatment. Xxxxxx good luck

  • Thank you Dancer53! I've been on 3 different contracpetive pills to try and treat endo, i was on cerazette, and that didn't help at all, i was then put onto levest and was told it had to much oestrogen i think? and was then put onto microgyaenon! non of these helped and i was then put through for a laporoscopy and laser treatment to burn the endo. Despite all this, it's not helped me in anyway! Being 16 i'm missing out on a lot, and being told from other people and a doctor that it could affect my fertility has scared me! xxx

  • I am very surprised that they've given you the mirena. They don't normally suggest it for girls who haven't had children yet, this is why.... After you have a child your cervix stays about 1cm dialated so you don't feel the coil and it's less likely to cause pain. I've had two children but my cervix has gone back to as if I'd not had any. I've had 2 mirena coils and both had to be removed because it caused me to cramp constantly until it was removed. I would speak to your gp as it may be the coil causing your pain now. I'm now on norethisterone (high dosage progesterone) which has helped a lot. Good luck hun, 16 is very young to be having to deal with all this, hugs xx

  • Ah I'm only 21 aswell, I want mine out ASAP, it's made me ill aswell to the point I ended up in AnE after waking up after half an hour in a pool of blood, is that normal for the coil? I think it's made the endo pain I suffered, which is a constant leg pain, even worse. I don't know what else to try though because I have been on many different pills since i was 14. I know they didn't laser or cut any endo during my operation, could that be why I'm still in pain? X

  • I think i will be having the coil taken out very soon! i'm getting pains down my hips and my leg which is quite bizzare? :S the surgeon said that there's nothing else he can do until i start having children of my own or go through the early menopause!! :( and it is very young!! i did have symptoms when i was about 14 but nothing got done until i was 16! and Bryonys if you have endo and they have didnt laser it off that is probably why you'res still in pain :( xx

  • I really feel for you. I was in your position, started periods at 9 and had problems from day 1! i agree with the other posters- the coils is prob causing you pain, I had one come out itself i was cramping so bad with it in. i have never heard of it affecting fertility tho (unless u were trying to get preg and had it in lol). I found that excision of endo rather than lazering it had a longer effect on my pain as it tok longer to come back. I was able to get preg even with endo (3 times, and oly with a little help for last 2). to put a bit of a positive spin on your situation at least now you know, It would be way worse finding out down the line in your 30-40's when time is running out and trying to conceive a lot more difficult, now when you are at the right age and ready you will be more prepared to take action if needed.seek answers for your questions from an endo specialist, ask your gp to refer you to someone lese if you dont think your consultant or surgeon where particularly helpful, at your age push for a little bit of kid glove treatment. there is also other options like pain clinics and endo diet that you may want to look into as well. Read up on websites what has helped others and that way when talking to dcs you'll be ready to ask questions and show them u know what your talking about and not a push over. Good luck hun, i hope the pain starts to ease soon.

  • that's around the time i started my first period i was about 9 years old, and they werent too bad for a couple years but i noticed it started to get heavier and a lot more painful and it was getting to the point where i was in pain the week before a period, during and a week after and i wasn't getting a break from the pain! going to the surgeon he was telling me it was endo then it wasn't endo.. then was very abrupt and not very nice and saying that he'd do surgery but wasn't happy about it!! even the day of my surgery he was very cocky until he realized i wasn't faking my symptoms and i didn't like being prodded and poked around by doctors!! I've had the laser surgery and the mirena coil, my symptoms have eased up a lot more, but i'm still in a lot of pain! :L i also recently went to the normal GP with some questions and she showed me the letter he had sent her, basically saying he didnt believe that endo was my underlying cause! i was very frustrated that he seems to have no belief in what i am saying, and very tempted to get a second opinion as i dont want a consultant who still doesnt believe me, even with the proof!! And no i am not trying to get pregnant with the coil still in haha!! 16 is still a little too young for me! and what is the kid glove treatment? i've had a look into some of the endo diets, and they seem very strict, so i think i will keep start to have things more in moderation! I'm not due to see the surgeon until february time, and by then i hope to have the mirena coil out and rely on an endo diet and taking the right vitamins and the correct pain relief for me! thanks a lot :)

  • Hi - if you are concerned, keep going back to your GP. I was sort of diagnosed when I was 18 after years of pain, I say sort of because the doctor poked and prodded my abdomen, then said I could have endo, put me on the pill and told me the only cure was to get pregnant. This was prior to the days of the internet, so difficult to research what could happen. I'm now 37 and have fertility problems and wish I had pestered my GP. Also, if you're not happy with the attitude of the consultant (I had similar with a female consultant) you can complain through the hospital - see their website. I really feel your frustration as it is so similar to my experience. Good luck.

  • I have, i've recently had a blood test as well to monitor my hormones as my mood swings are so out of control! My surgeon said he won't do no more surgery as it may affect me conceiving when i'm older and also said that my body would 'sort itself out' once i got pregnant! Either that or to go through the early menopause which is deffo not the answer for me! I may complain through the website, as it's Lincoln i'll have to have a look! It is very frustrating, I'm in college atm studying Health and Social Care and it's so difficult to concentrate sometimes when all i'm thinking of it my health :L doctors these days seem useless :( thanks! you too :)

  • hi,

    If i was you i would change DRS, your body wont just sort itself out, and being pregnant or having children wont stop your endo all together either, there is a big chance your endo could come back after youve had the baby. Obviously being pregnant will stop your periods so your endo wont be flaring up every month but getting pregnant or having children isnt a cure.

    By the sounds of things your DR just doesnt seem bothered by your condition, so thats why if i were you i would change DRS and take it from there

  • Yes i am considering changing doctors! I would like to go private, but the one in oxford that a relative goes too is too far away! It would help to get a second opinion and have somebody listen to me that actually acts as if they care about my condition, i may be 16 but i don't make up my symptoms for the fun of it! and i do not enjoy being prodded and poked around by different doctors, fed up of not being listened too! Thank you, and one of my teachers had endo, was told to get pregnant and then the endo flared up again after she'd had babies!!

  • Darling, this thing of having babies will make endo go away is a myth. For some maybe worked like that, for other endo arrived after pregnancy. So please don't consider this and don't take it seriuosly.

    My advice is to change treatment. Ask your doctor if you can try cerazette, it fakes pregnancy and not menopause, it takes away your period and therefore the pain as well. for it's working fine and you can take it up to 5 years.

    Doctors and treatments need to be changed until you find one that suits you. I needed to go to quite a few doctors, public and privates before getting diagnosed and took me 4 years! after that I went to at least 4 doctors in 3 months to get a treatment that was satisfying for me. unfortunately it's not cheap but it's worth it.

    best of luck!

  • Noo i wouldn't be getting pregnant this young dw!! i have been on cerazette, but it didn't work for me as i bled the whole time i was on it! i do think i need to change doctors, he seems very two faced telling me one thing and then telling my GP the other!! and thank you :) you too

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