Is it endometriosis!?: My daughter is 1... - Endometriosis UK

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Is it endometriosis!?

Clarical profile image

My daughter is 15, has been suffering about a year and a half with unbearable pain while she is on her periods . Many times sent home due to feeling very sick, dizzy , sweating , and feeling very unwell with the pain she encounters . Like a stabbing pain a continues ache which makes her fall to the floor in tears!

This went on for months and to be told she suffered from primary dismonerrh .

However it was getting worse and worse so doctor advised to go on pill for 3 months and take break then to continue another 3 maths etc .

Her pain stopped but did then encounter migraines and little sicky feeling but no more severe pain. However when on the 7 day break, Els was passing huge amounts of thick tissue- bigger than a two pence piece and about half a centre metre thick some times bigger!

Decidual cast they called it very rare however it’s hppened 4 times in 6 months ! Pain is like contractions . I believe it’s endometriosis and doctor’s agree however say she’s too young for MRI pelvic scan or laparoscopy …. Her gynaecologist appointment is not till next summer ?! Any advice will be great as her social life / health as making her anxiety worse and school life is getting so affected .

Clare x

11 Replies

Hi,

It could be endo. I’m not too familiar with the condition in young people. She wouldn’t be too young for an ultrasound scan which may pick up some clues. If it were my daughter I think I’d be pushing for that. Your GP can organise it and the results could fast track your next step.

Sorry that’s not much help.

Yes she’s had an ultrasound but they told us ultrasounds does not detect endometriosis, she has to have a pelvic MRI scan which will . But they are refusing it . We have been pushing this r the whole year - endless trips to AnE but they all say same can’t do anything but supply pain relief !🥲

The other thing you could consider is seeing a private consultant (about £100-150) who can then write to your GP a more informed professional slant on where to go next on the NHS.

My private MRI was around £650. Again that might push your GP into action but it’s a lot of money if you’re not insured.

I hope your daughter gets sorted soon. Such a young age to be suffering from x

Thank you , we have been considering a private MRI . Looks like we will seriously have to go down that road. She’s too young and it’s so hard seeing your daughter in so much pain and getting no where

Thank you

hi there,

i have been suffering with something very similar for years. she definitely isn’t too young for a scan or laparoscopy, i was lucky enough to be able to go private when i was 14 (after receiving barely any help from the nhs for 3 years).

in the space of 6 months, i was admitted for pain relief and investigation, i had multiple ultrasounds, an mri, and then a laparoscopy (my gynae was unsure as 15 is quite young for a lap but my mum and i insisted). it was quite a shock as in the span of 3 years the only thing the nhs had been able to do for me was an ultrasound.

if you can afford it, i would highly recommend going private. otherwise, keep going back to the doctors and a&e… unfortunately there isn’t much you can do as they are just so overwhelmed and many of the doctors just aren’t knowledgeable enough about women’s health. i would expect they will put her on the pill with no (or very few) breaks until they find out what’s wrong. as i said, i suffer with something very similar to her (i’m also a similar age), if she ever needs support and wants to speak to someone i can give you my contact details.

hope this helps and that she gets better soon! :)

Clarical profile image
Clarical in reply to avavs777

Ohhh thank you hun , so much I will let Els know when she finishes school. 🥰

Dee_EndoUK profile image
Dee_EndoUKModerator

Hi Clarical

Sorry to hear that your daughter is experiencing so much pain while she's on her period - it must be incredibly difficult for you to see her suffering.

Laparoscopic surgery is the gold standard for diagnosing endometriosis and can also be used to treat endometriosis. We do have an information sheet on our website with advice on speaking to your GP about treatment, and what to do if you are unhappy with the progress. You can find the resource at endometriosis-uk.org/gettin...

In addition, we also have a comprehensive document about treatment options that contains suggestions for managing the symptoms of endometriosis that may help your daughter. This can be found at endometriosis-uk.org/endome...

Finally, if you need someone to talk to, our free helpline (0808 808 2227) is run by volunteers who have personal experience of endometriosis. The times it is open can be found here: endometriosis-uk.org/helpline

Best of luck

Clarical profile image
Clarical in reply to Dee_EndoUK

Thank you so much for your reply, all these responses has given us so much hope and Els knows that she isn’t alone ! We do find we are banging our heads against the brick wall . I haven’t asked the GP / gynaecologist for Els to have the Laparoscopic but again they keep saying she’s too young !

I will keep pushing . We do have an appointment with GPnext week as was admitted last weekend again to hospital .

She’s in so many drugs, but nothings taking the pain away . I will have a look in your information sheets after work.

Again thank you , feeling so much better , Having this forum.

Hello, I suffered from very similar symptoms very soon after my period started when I was 10. My periods were sometimes 10 days long bleeding through pads, then clothing including my school uniform, collapsing and my mum never thought to take me to the doctors at any point even though she had suffered very similar. It really affected my school life and made very anxious/nervous about leaking when I was on my period not to mention the excruciating pains! So you are doing the right thing trying to get your daughter help you just have to keep pushing the GP your are seeing and they will listen eventually 🤞🏻 I think you can have endometriosis when you're a teenager. If you can, I would tell the GP you would like to expedite her gynae appointment for sooner rather than next summer as the pain is too much for her to handle and you're right taking all these painkillers all the time aren't good for the body especially the gut. I wish your daughter all the best and hope she can seen sooner xxx

Hi ClaricalThis is so sad that your daughter is only 15

and experiencing these gynaecology problems.

You are doing the right thing by pushing for an MRI scan, this could give you some answers.

I went private for a consultation which cost me £200 as the initial wait for a consultation was 12 months in my area. After I had my appointment I got put onto the waiting list for an MRI scan. It showed up adenomyosis. My issues are bleeding through clothes, it feels like the blood is pumping through and you flood all of a sudden, it’s devastating as this has happened when I have been in public, it makes you anxious and always at the toilet to change knickers and pads and jeans ….

Your daughter is now alone and she would be more than welcome to join here and we can offer her advice, it was invaluable for me when I got a diagnosis as I didn’t know anyone who had these problems. It makes you feel less alone somehow.

You are obviously a lovely mum and I wish you get all the answers you need soon. Sending love to your daughter, hope today is a good day for her xx

Thank you for your message hun ,I am seriously considered going privately - need to look into that xx

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