Endometriosis in an under 16

[RedS4]

I have stage 4 endometriosis but I am currently really worried about my 15 year old niece who is currently experiencing severe pain commencing a week before her period and continuing for 2.5 to 3 weeks of the cycle. She's had so much time off school because all she can do is lie in bed when the pain is present, that the school have threatened to kick her out due to non attendance even though she is a straight A student. I think that her symptoms sound very much like my own experience. We want to try and get her a consult with a specialist clinician, but no one seems to treat under 16s. Her education is at risk and she doesn't have any decent pain relief. I know that specific medical practitioners should not be mentioned here, but is anyone aware of any clinic that will see under 16s? If not can anyone based on their own experience recommend any helpful pain relief? She is currently on Ponstan and the Doctor has mentioned over the counter paracetamol and codeine but these just aren't cutting it. Any advice would be incredibly welcome. Thank you in advance.

[Iszabella]

HI,

When I was in a lot of pain at school I always used to to take deep heat patches with me and place them where the pain was worse. The heat helped ease the pain as much as I wanted to just lay down it did help me move about throughout the day. That and regularly taking ibuprofen and drinking lots or water.

Hope this helps x

[RedS4 in reply to Iszabella]

Thank you Iszabella!

[avavs777]

hi there,

i am around your niece’s age and until about a year ago i was suffering with very similar symptoms to her! for me, it took about 5 years of excruciating periods including 1 year of constant stomach pain to see some progress. if your sister can afford it i would highly recommend that she go private. that sped up the process so much for me. i do know of 2 gynaecologists who treat children so please let me know if you’d like me to email their details to you.

i was personally treated by one of them who was very good and even performed a laparoscopy (which is incredibly hard to get if you’re under 18 unfortunately) after 6 months of scans and tests and trialling painkillers/hormone pills. the other one has never treated me but when we first contacted her she was ready and willing to do a laparoscopy and was looking for a hospital bed for me straight away (unfortunately the hospital she wanted me to have the lap at doesn’t treat children). she has since been recommended to me a couple of times!

in the meantime, she should definitely try a heated blanket! they aren’t cheap (about £50) but they last a while and mine has been an absolute lifesaver for pretty much all my aches and pains. i spend most of my day wrapped up in it!

i really hope someone can help your niece, i completely understand how awful it is to not be able to leave your bed to go to school or socialise, and the feeling of not being taken seriously by doctors! i also missed a lot of school before i had my lap, so much so that i ended up moving to a tiny college that could accommodate my regular absences.

[RedS4 in reply to avavs777]

Thank you so much for your message. I'm so incredibly sorry to hear you've been through all this. It's awful how the medical system is failing young women. I would be really really grateful for the names you mention.

[avavs777 in reply to RedS4]

you’re welcome! i am very grateful that i found people willing to help me (even if it did take a while to get to them!). it’s devastating to see so many people suffering at the hands of a system that is supposed to help us. would you mind messaging me your email address?

[Jasmin24]

Hi RedS4

My niece, had a similar problem.

I have stage 4 endo and I recognised some of the patterns.

I suffered all my life, from the moment I started my period, I was diagnosedwith PCOS in my twenties and was put in the pill. But I knew something was wrong. I'm in my forties, got my diagnosis of endo when I was 35, after years of going back and forth.

I got my niece to write a dairy of what she ate, pains she gets, the time, how long the pain the pain last, describing the pain, literally every, trigger points I.e. exercise, even bathroom habits etc.

I know its long winded.

A dairy of syptoms, helped her track her triggers and pain.

We also pushed the GP to refer her to a gynaecologist.

She had a scan and a referral, which showed her to have PCOS on both ovaries. She was 16 when diagnosed, after a long fight for her GP to take her seriously.

She is 17 now.

I do think, alot more needs to be done for the younger generation.

Yet again early diagnosis would help. I do feel GP's need to take this seriously.

I have 3 other nieces, experiencing similar syptoms. Even though they are young, I am still getting them to write a diary.

I hope your niece gets the help she needs.

[RedS4]

Im am sorry to hear about your nieces. Thank you so much. For your message and advice. A diary is a great idea, I will try and get her to do that.