diagnosis in teenagers

[Rachmelbo1976]

My daughter has been having the exact symptoms I had with my endometriosis and has been on the pill to help since she was 14. Nearly 16 and although the pill appears to be helping and she is having periods every 3 months as advised by the GP, they are still painful, fainting. I just wondered how early can a diagnosis for endometriosis or something else be made or who would be best to get her referred to. I don’t want her suffering for years as I did and took 12 years to get diagnosed. Thanks.

[SavageGold]

I'm sorry your daughter is going through this. I was 18 when I was told I had endo. That's the short version.I saw 6 doctors in 5 years not willing to do anything. Ponstan didn't work. The microgynon made me worse and bleed continually. And they said there was nothing else out there for it. I passed out at work.

I worked for the retired Dr who had ran the family planning clinic. She was well respected in my surgery and she told me to demand a referral to the hospital for a second opinion. My doctor still refused! But the second I name dropped that retired Dr changed my life. I was seen within months, prescribed the Depo and it worked without a single issue for 12 years.

If the pill is helping maybe ask for a more long term solution like the arm implant. The Depo is not recommended for use more than 2 to 5 years but nothing else is suitable for me.

I don't know how you would demand a second opinion. I'm sure they aren't allowed to refuse you like they refused me. But I didn't know about any kind of complaints system back then that could help.

[Hidden]

I agree with SavageGold. Ask your daughter's GP for a referral to a consultant gynaecologist. There may even be one in your local NHS Trust that runs a special clinic for adolescents. The NICE guidelines make it clear that teenagers should be referred if symptoms remain unresolved by the contraceptive pill. Although the consultant will probably be reluctant to order a diagnostic laparoscopy straight away, they might refer her for an ultrasound and an MRI (if only to eliminate other causes). Given your own history, I think a consultant gynaecologist is likely to intervene much more promptly than your GP. My daughter had exactly the same symptoms and neither Ponstan nor the first pill she was prescribed helped. Her consultant tried her on different brands of the contraceptive pill (taken continuously at first and then with a break every 3 months to see how things went) until she found one that seems to have done the trick. It is a miserable thing for a teenage girl to have to go through - my daughter had so many school absences and missed out on social activities - so I hope yours can get some help soon.

[Mony_1885]

I have no expertise in the area but I went on the pill at 14 for period pain myself and more than 20 years later I’ve only just been diagnosed with endometriosis and a large ovarian tumour which I am told would have started growing when I was a child. I can’t see any reason not to demand examination for your daughter at the earliest opportunity. It could mean saving her fertility and avoiding the miserable quality of life that can come out of long term unaided endometriosis. I found that I was ignored until I used the word ‘endometriosis’ myself, maybe this is similar to your own experience? They force you to be insistent and so that’s what we must do, insist. Ask your GP to give her a gynae referral or at least an ultrasound as a starting point. Naturally this all depends on your daughters autonomy and what she wants but if I could go back in time and get a diagnosis before this disrupted my life, I would . I’m a professional and struggle to navigate my role when dealing with severe chronic pain. I wish this had been dealt with when I was at school. Best of luck to both of you.

[Pinkmice]

Hi

With endo your daughter will need to be referred to an endo clinic by your

Gp.

Life with endo is an journey - which as an young lady, as an parent - all hope that

the distress it causes. Will be averted so that your young daughter can get on with

living an happy life - in the near future.

I expect your support, and knowledge of this will - enable you and your loved one

to get as much help as possible!

Kind regards/big hug

[Rachmelbo1976]

Thank you for the replies. I will look at getting referral to adolescent gynaecology. I looked at Nice Guidelines and also found there are clinics at my local hospitals. Much thanks again