diagnosis support for me and my 14 year old daughter please!

[BekiBoo86]

Hi all,

Thanks in advance for reading my post.

My Daughter is 14 years old, she does not have a Endo diagnosis however I believe this is what she is experiencing. She was hospitalised in July with severe pain which has continued until now. She was given Morphine and sent on our way. We have since seen Paeds and Paeds Gynae, she’s had ultrasounds on pelvis and abdominal which show no concerns. She’s tried the mini pill, and mefenamic acid which she had a bad reaction to and has now been switched to the combined pill.

I’m looking for advice where to go from here please? Does anyone have any advice about the Endotest saliva test? We have a Myoovi tens machine, which helps a little on her lesser painful days. Can anyone advise anything else to help us get her life back on track?

[CitizenErased]

Sorry to hear your daughter is going through this. Unfortunately she probably has a long road ahead to get a diagnosis. Some people have to wait years for this. It's shocking!

The best thing she can do first is keep a diary of her symptoms. This can help her advocate for herself with future clinicians. I use the app Clue, but there are lots of other options, including just writing it all down.

Ultrasounds won't show endo up unless the person doing it is specially trained, and those people seem to be few and far between. I suggest she goes back to the GP with a diary of evidence of symptoms and ask to be referred to a gynae. If they say no, keep on at them or try another GP. Ideally, you want to be referred to an accredited BSGE centre. General gynaes sometimes have a special interest in endo, but others often they don't know much about it. This is another thing that increases the time to diagnosis.

This forum and the Endo UK website both have a wealth of information – I really recommend checking out past webinars! They also have a webchat and helpline for support.

I hope your daughter feels better soon. We are always here for her and you when you need help! 💜

[BekiBoo86 in reply to CitizenErased]

Thank you, we are due back at gynae in 3 months and keeping a log x

[Purpleperdy]

hi Beki, my daughter is 16 and it’s awful to feel so helpless isn’t it. She is currently waiting for a laparoscopy. We have had to defer her college place as she missed so much time they said she couldn’t pass. We have morphine at home for when it is really bad. All I can say is annoy the hell out of your doctor so they refer her for a laparoscopy so you know for sure and then can try and get a clear pathway for treatment.