Diagnosis?

[elhxm]

I’m 18 and been suffering with severe abdominal pain for a month, they thought it was appendicitis, then ibs then crohns after a&e trips and scans an emergency department dr told me she thinks it’s endometriosis and to speak with a doctor. since then i’ve been doing research on the nhs website and also other people’s accounts and i really relate to these symptoms the severe pain only started recently but my periods have always been awful and i’ve suffered with chronic pain and fatigue all my life.

what is getting help like in the UK, i’m really worried because it sounds like the nhs isn’t doing a really good job with diagnosing and managing this along with woman’s health in general

[ccfd9]

Hi

Yes I believe you are correct. The problem is you arrive at the doctors surgery looking healthy, due to your high levels of oestrogen. So the doctor does believe there is anything wrong with you. The research done many years ago now found that on average it look 5 years to see a gynaecologist and over 9 years to be diagnosed. Things are a little better now as radiologists can see endometriosis rather than waiting for a laparoscopy to be diagnosed and hopefully all the work done by women fighting to get this disease talked about and people aware of the issues. However, getting a diagnosis is only the first problem you will face, the problem is that the doctors have limited tools that work for everyone. Some people can cope with the pill, not counting the long term damage this may be doing. Others cope with the mirena coil, but many cannot cope with these hormonal treatments. Some get relief from laser surgery but again these treatments are not cures.

We are all different and what works for one does not work for all, so you will need to find the solution that works for you. Many people find that an anti inflammatory diet helps, especially if it is gluten and wheat free. At least this puts you in control of your body and there are good nutritional therapist who understand endometriosis like Dian Shepperson Mills who can guild you through this journey.

[Cailleach]

It is a pretty slow process, but that seems to be the case across the NHS at present. First stop is your GP to discuss what the A and E doctor said and ask for a referral to gynaecology. He/ she might also send you for an ultrasound scan and / or suggest you try the contraceptive pill if you haven’t already. Ask for pain medication if you have not already been prescribed.

A clear ultrasound scan does not necessarily mean no endo, by the way.

If you have a look online at the NICE guidelines for endometriosis, there should be a recommended treatment pathway, might be useful for you to ensure you are getting what you should be.

Hoe you are able to find some help.