11 year old diagnosed with endometriosis.

[joanne626]

Our 11 year old has just been diagnosed. Her period started at age 10. She has been in severe pain and even been admitted but all they can give her is paracetamol or neurofen. Neither are near effective. She can't eat for one week each month as the pain increases after eating,. We have been told the stronger drugs are not licensed for under 12's. Help!

[endopains]

I'm so sorry for your little angel. That's really horrible. The best thing that I can advise is heat. Heat wraps on the front or back, wherever she finds more comfortable. You can buy the disposable sticky ones to for going out. Have they discussed any progesterone only contraceptives with you? The implant is progesterone only and could stop her periods or at least reduce them. For many women no periods mean no periods mean no/little pain. I don't know if this is a viable option for an 11 year old though. Plus some ladies on here find food diaries helpful, it may be particular foods that are setting her off. I can't eat dairy at all and there are a few that don't eat the naughty carbs, it's a whole thing called the 'endo diet'. But to start just take note of what aggravates and what doesn't.

I am so so sorry you're little girl has this problem. Makes me so angry and sad. The only thing to add is that endo cannot be confirmed without laparoscopic surgery so it's not definite.

Best wishes xxxx

[joanne626 in reply to endopains]

Thank you, stronger painkillers like ponstan they can't start her on for another six months until she's 12 because of licensing laws. Hormones they won't consider for another few years because they don't obviously don't want to interfere with the hormones. Same with surgery or exploration route. Ethically it not possible. Will look at the diet theory. Thank you

[Hidden in reply to joanne626]

Hi there I am so sorry to hear about this. I'm just sitting here in pain and reading this I cannot comprehend how an 11 year old must be feeling bless her. However I wanted to let you know that my 8 year old son was given Ponstan after his Tonsils were removed. He is asthmatic and this is what they preferred to give him for the pain. It was 125 ml suspension. We are in Switzerland though so maybe this is different, but it is available for younger children for sure!

Big hugs to you both! Xx

[17yearoldgirl]

Im so sorry that she's been diagnosed, a plus side that shes been diagnosed so young is that they can do more to help her now! I was diagnosed with Endo at the age of 14 and my symptoms started when i was 13, i understand how she must be feeling! Im not allowed stornger painkillers either due to my age, im now 16, ive been out on the pill for a year and a half, it hasn't helped much, the only thing that has helped me is heat, hot water bottles, one on my belly, one on my back, if that doesnt work i go for a hot bath, that normally works! Ive also cut down on how much chocolate, bread, wheat, gluten- this has helped a lot, then when i eat a lot of them my pain increases a lot!

I hope she gets better!

If you ever want to talk about anything or ask about my treatment message me privately

Stay strong for your little angel xx

[joanne626 in reply to 17yearoldgirl]

Thank you. Heat doesn't seem to help, it just distracts her. Would certainly look at the diet suggestions. Thank you.

[17yearoldgirl in reply to joanne626]

Good luck with everything!

[MissBennett]

Don't give up! Maybe if you're insistent, really firm (and polite) someone will bend the rules eventually. Also keep talking your daughter. You can't protect her from this and the likihood is she's in it for the long haul so the best thing you can do is support her as best you can in the process. As you are doing now. She needs to get really good at explaining how she feels, what changes and what she wants. When she's a few years older she'll have lots of treatments options open to her. Start her off on the right footing by encourageing self-confidence as much as possible now. The system will keep on failing her and in the long run she'll need a lot of gumption to get appropriate treatment at the right times. Good luck and I'm so sorry you're both having to go through this. P.M. If ever you like. H-R

[joanne626 in reply to MissBennett]

Thanks. Will do.

[Hells83bells]

I'm really sorry to hear about your daughter. I remember being collected from primary school in agony because of my period pains. And for years they fobbed me off saying it was " growing pains". I would def suggest diet and also keeping a diary of pain and bleeding. Then be persistent with the doctors. Even if it means going back two or three times a week ( I did this when I was at uni to get things sorted!) . I'm suprised there they don't have any medication they can give her because what do they do for other children who experience chronic pain? Sometimes endo doesn't get taken seriously or treated the same as other conditions because it's menstual. That's why keeping a diary of pain etc can show really how it's effecting your daughter.

I really hope u get some help for her. Xxx

[joanne626 in reply to Hells83bells]

Yes, I will do that. Thank you

[JoJangles]

Hi your poor daughter. Going through that at 11 is unthinkable! I have a friend whose daughter is also having a traumatic time. She has just turned 12 & started her periods a year ago. She was bleeding heavily (flooding during the day & night) & the pain was affecting her schooling & social life. Their doctor went off prescription & gave her mefanamic acid & put her on a combined pill. This has started to take effect & is making life more bearable for her. I think my friend had to sign something to agree to it as she was only 11. Can you see another doctor? Good luck & I hope your daughter has a pain-free Christmas x

[joanne626]

Thanks for the info. We are in Ireland. I'm not sure if that makes a difference.

[mierran]

You could try starflower oil ( like evening primrose oil but stronger ). Also starting paracetamol before the pain starts and taking every 4 to 6 hours 4x daily even if pain seems better can help. You can also use along with ibuprofen which has new doseage guidelines for kids and can now be taken at lower dose 4 x daily.

Gentle exercise if she can stand it can also help a bit. I used to lie on the sofa with my legs up the wall.

Food wise eating little and often - a small snack every couple of hours not big meals. Endo often comes with ibs so that may be contributing. I used to be unable to eat for a week a month due to pain and vomiting.

The thing that helped me was traditional acupuncture. I found it helped my nausea and pain more than drugs or surgery. You want one that specialises in treating endo. It's not cheap but worth it

I was put on the combined pill at 15 due to severe period pain after nearly 3 years but, like many others, told it was all part of being female and I just had to get on with it. It took 20 years and being unanle to conceive to get a dr to take me seriously. At least things are improving on that regard.

Give your daughter a big hug.

x x

[Joanne3t9]

Omg that is so young it's awful for this age, I was finally diagnosed at 17 after having symptoms for three years where I would just pass out and be found anywhere. It wasn't nice at that age so I can imagine how it is for your little girl.

I never did and still don't like medication as unfortunately I have always got the side effects with them and I would rather suffer the pain.

I know she is young but would they not laser it out and try and keep it under control until she is old enough for the pill.

Hope they find something for her.

[Purplewitch18]

Ive had it since i was 11, its great that you have a diagnosis so young because there are things you can do for her. The diet thing is right, no dairy of gluten, or maybe just occasionally. These things cause inflammation in the body and that makes the pain a lot worse. There are lots of suppliments which help but im not sure she is old enough you would have to look into that. You can however use essecial oils such as clary sage and heat pads when the pain flares up. And you may want to think about birth control to surpress it. Some people hate it some couldnt do with out it. I went on the pill at 16 and it made my periods a lot lighter, i only had pain occassionally and it would be severe cramps for a few hours then it would pass. I was on it untill i was in my early 30 and wanted to get pregnant, and i did within 6 months. Ive been on nothing for the last 5 years and cant get pregnant so the pill i believe did help. There are other side effects that it can cause so there is that to consider, but obviously she is so young you just want her to have the best childhood she can and you have to find the best way to do that, and you will because now you know what it is you can do things to help it. X

[Abbie1987]

Hi there

I'm so sorry your daughter is going through this. I have not long came out of hospital with my 15 year old daughter who has also been diagnosed. She has been put on a minipill that she has to now take every single day until she starts a family and also mefanamic acid and bascapan which she has to take when she is on her period. Not sure if any of these would or could help your daughter. I'm still very new to all this. My daughter also had two cysts on her ovary that they removed in a keyhole surgery but since she has been so unwell. I really hope that your daughters discomfort with it all is relieved sooner rather then later.