176 million people worldwide have endometriosis. Despite its prevalence, many people don’t know what it is. It's not talked about, it's under-researched, and it's persistently underfunded. For Endometriosis Awareness Month, Bustle UK is hearing from people living with the condition and doctors who specialise in it, and is opening up the conversation to help you get the treatment you deserve.
Symptoms of endometriosis can vary significantly from person to person. Some people may experience mild symptoms, whereas others find the condition seriously affects both their physical and mental health. Knowing what to do if you think you have endometriosis can seem tricky — especially when it takes between seven and eight years on average for a person to be diagnosed, according to Endometriosis UK — but being informed will make achieving a diagnosis that bit easier.
First, it's important to know the symptoms of the condition so you can make an assessment about how much alignment there is with your own symptoms. As the NHS states, it's not just heavy periods that you should pay attention to. The other main endometriosis symptoms can be irregular periods, pain in the lower stomach or back that often worsens during your period, severe period pain that hinders your everyday life, pain during or after sex, and pain when going to the toilet. You may also experience nausea, constipation, diarrhoea, or blood in your urine during your period.
These can also be symptoms of other medical issues, so it's vital to first rule those out. As much as your own awareness is useful, the only way to do that is to visit your GP. Talking to a doctor about personal issues can be uncomfortable, but it's their job to investigate any problems and recommend suitable treatment. In order for them to do that successfully, it's best to be as honest and transparent as possible, and do request a female practitioner if it would make you feel more comfortable.
Endometriosis UK has put together a printable diary where you can fill in information about your symptoms on a day-to-day basis. Bringing this diary along to your appointment will give your doctor a more complete picture of what it is that you're going through.
It's also a good idea to write down any questions you want to ask or things you may want to mention. Endometriosis UK has a list of questions you may want to ask a consultant if/when you are referred. As most people will testify, the moment you step into a doctor's room is often the moment when your brain forgets everything you came to say, so taking a list can be helpful.
Once you have explained your symptoms, your GP will ask you more questions and may ask to examine your stomach and/or your vagina. If you're uncomfortable with the latter, you can refuse. You're also entitled to a chaperone so don't be afraid to ask for one.
Unfortunately, a GP can't give you a definitive diagnosis of endometriosis at this initial stage. However, if they suspect you have endometriosis, they may examine your body to check for any other causes of your symptoms. They may also refer you for an ultrasound scan or to a gynaecologist who may refer you for a laparoscopy. This procedure — which involves making a small cut in your stomach and inserting a thin tube with a camera to look for endometriosis tissue — is currently the most accurate way to diagnose the condition, as Endometriosis UK states.
It may be worth visiting the British Society for Gynaecological Endoscopy (BSGE) website to search for a nearby gynaecologist who specialises in endometriosis. You can then ask your GP for a referral to this person.
If, at any point, you feel like your doctor isn't listening to you or taking your symptoms seriously you can ask for a referral to a specialist. If nothing progresses from there, you can seek a second opinion from another GP, perhaps another doctor at your health practice.
There is no cure for endometriosis, but treatment can vary from simple painkillers and hormonal contraceptives to more complex operations, states the NHS. No matter which treatment you are offered, make sure to ask how it will impact you (including both pros and cons), what other options there are, and whether your symptoms are likely to return.
Getting diagnosed with endometriosis is not always straightforward but being armed with the facts and being ready to persist should help speed up and simplify the process.