It takes up to seven years for women to be diagnosed with endometriosis, with many living in chronic pain. But knowing how to talk to your GP can speed that process up, as writer Laura Wallis has been finding out.
After a long, painful nine years, I was finally diagnosed with endometriosis in 2018. If that sounds extreme, you’ll be horrified to learn that it now takes around eight years of fighting to get a diagnosis, according to the All Party Parliamentary Group on Endometriosis. And I’m one of the lucky ones; women in racially marginalised groups and people within the LGBTQ+ community can face additional barriers to receiving adequate care. The whole process is bloody hard, but getting a diagnosis validates your struggles and can eventually help you to move towards a less painful future. It confirms that everything you’re experiencing isn’t just in your head.
It’s a fact that endometriosis survivors need to fight for a diagnosis, but if you’ve got the right tools to go into that fight, the process becomes far easier. It’s all about being the most effective self-advocate you can be. So, here are the 10 tips I learned in the near-decade it took for my GP to take my pain seriously.
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Track your symptoms every day
Use an app or diary to track your symptoms and pain daily (even if they seem unrelated).Your doctor will want to know how you rate your pain on a scale of one-to-10 (with 10 being the worst pain imaginable), and how your symptoms are affecting your ability to do everyday things.
Tracking symptoms will help you to spot patterns and will allow you to explain what you’re going through even if you don’t quite have the words to describe pain on any given day. Having a track record is something a GP can actively engage with – it’s proof. When you’ve got enough recorded (say, over a couple of months), it may help to arrange a double appointment with your GP so that you’ve got time to chat through your experiences in detail.
Learn as much as you can about testing and treatment
The National Institute for Health and Care Excellence (NICE) guidance on endometriosis highlights what you can expect from your journey within the NHS. It’s worth reading and making notes so that you can demand certain points are followed if you’re not receiving adequate attention.
Your GP should talk you through your options, testing and treatment that they’re able to offer.If this isn’t clear or you don’t understand something, it’s really important to ask. It might be worth taking someone to your appointment with you (your mum/partner/friend/housemate) so that they can make notes and help with question prompts.
Be prepared for lots of tests
Endometriosis cannot be diagnosed through scans or blood tests. “It can only be formally diagnosed by diagnostic laparoscopy or by histological diagnosis, ie viewing a sample of the tissue that has been obtained from elsewhere in the body and confirming endometriosis,” explains Dr Belinda Coker, GP and founder of Your Trusted Squad.
You may be offered blood tests or scans to rule out other conditions such as infection, polycystic ovarian syndrome, fibroids or adenomyosis (although it is possible to have any of these conditions and endometriosis). Don’t be afraid of asking for further investigation if you think there’s more going on.
Demand further GP appointments and/or second opinions
If your GP has ordered tests, arrange a follow-up appointment with them to discuss the results.The tests may show something, they may show nothing.Either way, it doesn’t mean it’s not endometriosis.Not finding an obvious reason for your pain doesn’t mean that it’s not real.
In fact, it’s worth directly asking if your pain could be endometriosis. That way, you can demand that they rule that out before moving on to other possibilities.
Ask to see a specialist
The British Society for Gynaecological Endoscopy has a list of specialist endometriosis centres.If you’re not automatically offered treatment in one of these centres, you can request it thanks to Patient Choice.This means you have a legal right to choose where and under which team you receive treatment.
You can also ask for an appointment with a GP with an interest in women’s health.This information may be on your GP surgery website, or you can do some digging for experts in your area, looking out for the letters ‘MRCOG’ or ‘DRCOG’ after their name, which mean they’ve had additional training in women’s health.
Know what to expect from a diagnostic laparoscopy
During diagnostic surgery, your consultant may remove ‘deposits’ of endometriosis.You should be offered the choice and be told the plan before surgery.If not, ask: “What will you do if you find endometrial deposits?”
After surgery, the consultant should come and speak to you.They should tell you:
- The “grading” of the endometriosis
- What to expect after surgery
- Where endometriosis was found
- The implications it may have for conceiving and your daily life
You might be groggy from the anaesthetic when the consultant comes to see you.If that is the case, ask for a nurse to go through the paperwork and findings with you before you leave the hospital. If you are unsure about anything, or the findings are unclear, ask. It’s your right.
Ask about your fertility options
Endometriosis can cause infertility and repeated miscarriage.If your laparoscopy reveals endometriosis, ask what impact it may have on your fertility and create a plan with the doctor if you have problems conceiving (and indeed want to have children). You may also need to see a fertility specialist.
The NICE guidance will help you to understand and advocate for your options.
Understand that treatment can’t ‘cure’ endometriosis
You may hear that surgery to remove endometriosis, getting pregnant or having a hysterectomy will “cure” the endometriosis. Sadly, that’s not true; even with surgical removal, endometriosis can grow back.
“I wish I had known it was a reoccurring disease,” says endometriosis patient Chloe. “When I had my second laparoscopy, I thought I was cured.Two months later, my pain came back with a vengeance and I didn’t understand why I was in horrific pain.”
Although the treatments you are offered will not cure the disease, they can be effective in managing symptoms, so don’t let this put you off fighting for a diagnosis or treatment. Options usually include surgery, hormonal treatment, pain management or pelvic floor therapy.
Prioritise your wellbeing
Eat nutritious, healthy meals (batch cooking and freezing meals to eat on bad days helps) and try to move as much as you can.A gentle walk, yoga or swimming may be manageable options on days when you’re in pain.
If you notice persistent low mood or feel you need mental health support, speak to your GP or a mental health professional.
Talk to loved ones and other women going through the same thing
It’s incredibly important to have a support network around you as you navigate this often stressful and long process. If it’s difficult for you to talk to someone you know, you can find support from Endometriosis UK, or look for support groups on Facebook.
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“I’ve waited more than 10 years for an endometriosis diagnosis. Why?”
The journey towards diagnosis will be tough, but it’s so worth pursuing. Remember, you’re not alone – you’re part of the one in 10 living with the condition. There’s a huge number of us out there who are only too keen to help and share our experiences. In fact, a whole group of women helped and supported me in the writing of this article. And that community is here for you too.
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