13 year old with significant pain

Hi, I'm desperate for some help and advice here for my beautiful 13 year old daughter. She started her periods over a year ago and was fine. They were pretty regular and she only had occasional mild pain. Then in February of this year, the pain got worse through her period and carried on after her period stopped. Her abdomen was tender, central and right, so I took her to the GP who suspected either an ovarian cyst or appendicitis. She was admitted to hospital and went in for surgery. Before surgery, the surgeon told us he suspected retrograde menstruation rather than appendix. Afterwards, he confirmed that this was indeed the case and that there was a considerable amount of blood pooling internally which is what was causing the pain. He took her appendix out anyway so that any future pain would be more easily diagnosed. He said that there was no sign of endometriosis and that he saw no reason to believe it would occur again.

In March, she was again in a considerable amount of pain and we took her to see a gynaecologist. (We're working in South Africa at the moment and have access to private - and therefore quick - medical care) Gynae confirmed via a scan that it did seem that there was blood pooling internally and put her on Visanne. She said that if this wasn't dealt with, then there is a real risk of endometriosis developing.

In April, she had a 4-5 days of pain, increasing in severity, then 5 days of bleeding but no pain, then a day of no bleeding or pain, then bleeding again for 3 days, then 3 days of less pain, manageable during the day but worse in the evening.

This month (May), she is now on her third day of pain, at a worse level than last month and severe enough for me to have taken pity on her and kept her home from school for two days. She says the pain is central and slightly to the right, around her belly button, and that the pain is much worse if she moves around. Ibuprofen doesn't really touch the pain at all. So I'm waiting to see if she is going to actually have any bleeding, but just wondering where we go from here.

I have had endometriosis myself and had a hysterectomy earlier this year. I also had ovarian cysts and polyps - to quote my gynae "there was a lot going on down there".

Just grateful for any advice and suggestions. I'm finding it so hard to see my daughter go through this and know that this probably isn't something that is going to just go away.

Thanks all.

6 Replies

  • In my own experience I went on the combined pill at 14/15 and was pain free until I had to stop the combined pill at 26/27 I did have 2 little girls thankfully but I'm now awaiting excision surgery next month...

    So I do believe that one of the pills will work for your daughter but it will be a case if trying them out to see which one works for her.

    I find that the progestin only pill made my pain worse so in my own personal experience the combined pill works the best.

    Good luck sharon

  • Thank you for the encouragement! I hate seeing my gorgeous girl suffer - even though she's so brave and cheerful.

  • I have no advice but didn't want to read and run. I totally sympathise with how awful it is having a child in pain and being unable to help. She is very lucky to have a parent who is keen to get things sorted rather than leaving it be in case she grows out of it. Best of luck to you both.

    Just struck me - if heat helps the pain what about getting her a cuddly hotty she can microwave? I have one from Intelex that is in my fave animal shape and it always lifts my spirits a bit when I feel truly rubbish.

  • Hi, Thank you! She finds that heat doesn't help so we have retired her reindeer hot water bottle, but thank you for the suggestion.

    Day 6 of pain now.... :-(

  • Hi, I can relate to your daughter as I've been in pain since I was 11. I'm now 18 with stage 4 endometriosis and had 2 ops in the past year to try and treat it. Think you're doing the best you possibly can at the moment in terms of understanding and pushing the doctors for answers. Shame she's so young as she can't take any painkillers. Wish you both the best of luck just make sure you don't give up and keep fighting for treatment!

  • Thank you. It is helpful to know she's not the only one going through this. I hope that you continue to find good treatment and ways of coping.

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