Endometriosis: I think I may have it - what now?

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Please note, I am not a healthcare professional. I'm just someone who lives with endometriosis, and the information I'm sharing here comes from my experience, from knowledge that has been shared with me by healthcare professionals, and also from studies, articles, films, and podcasts that I've come across.  

Getting a Diagnosis 

If you are experiencing endometriosis symptoms, please do see your doctor as soon as possible. Tell them your symptoms fit endometriosis and ask to be referred to a gynaecologist.

Your doctor will ask about your symptoms, and may ask to examine you (this may include examining your tummy and vagina). They may also recommend treatments if they think that you have endometriosis.

But you really need to see a gynaecologist.

Endometriosis often goes misdiagnosed (which obviously delays treatment), and even though it affects 1 in 10 girls, women and trans men, on average, individuals wait 7.5 years from the moment they begin to experience symptoms to the moment they're diagnosed. And women see an average of 8 doctors in 10 years before diagnosis. It took me 19 years to get a diagnosis, and I've lost count of how many doctors I've seen.

Doctors may refer you for tests and scans, but the only way to be certain you have endometriosis is to have a laparoscopy. And only a gynaecologist can arrange that for you. To confirm endometriosis, a sample of the tissue must be taken during a laparoscopy and it must be sent off to pathology, the pathologists will then have a look under a microscope and confirm if it is endometriosis.

Unfortunately, most doctors will likely fob you off, as they simply don't understand endometriosis. I'm sorry that this may be necessary, but you may have to demand to see a gynaecologist, and you may have to demand to have the right procedure (a laparoscopy) done to confirm if you have endometriosis or not. You have the right to know, and only when you have this diagnosis, can you then begin to treat the condition. It sucks that this is the reality and that most doctors are very difficult and dismiss your symptoms, which leaves you without a diagnosis and without the appropriate treatment. I'm guessing this happens because they want to save money but also because doctors just don't know enough about endometriosis.

Know that you're the expert on your body, so listen to your symptoms and fight for your health. I wish I'd demanded a laparoscopy years ago. Also know that you should not be in agony, such painful periods are not normal; it is not supposed to be this way. 

Doctors don't know what it's like to live in your body, only you do. Ultimately, the highest level of wisdom comes from your body, you are your own expert, so educate yourself and LISTEN TO YOUR BODY. Don't just accept what doctors say, especially when you feel like something is wrong. Learn about possible treatments, keep pushing for diagnosis and treatment, get other opinions.

I've written all about my journey with endometriosis, including treatments I have tried and treatments I am trying ~ 'Endometriosis: My story & what has helped me'.

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