Dr C: “Eight years to diagnose endometriosis is too long”
It affects one in ten of us – and yet women can live with symptoms for a decade before receiving a diagnosis. Dr C explains where to get the help you need…
You may have seen Danielle Lloyd posting recently about having surgery for endometriosis, which she describes as causing her “excruciating pain”. Now, an inquiry by a group of MPs has found that women who have the condition experience debilitating symptoms such as pelvic pain and cramping for about eight years before receiving a diagnosis. That is too long, and this report is right to say we need to do better. Endometriosis is a long-term condition where tissue similar to the lining of the womb grows in other places, like the ovaries and fallopian tubes. It affects one in ten women in the UK, but we don’t have a specific test for it, and the only way to confirm it is with a laparoscopy – when a camera is inserted into the abdomen to look for “speckles” of tissue – but that is only done once other things have been ruled out. The other way you diagnose it is by taking a full medical history, so listening to the nature of someone’s pain.
DESCRIBE YOUR PAIN
If a woman has terrible period pain and heavy bleeding, endometriosis would be one of the most likely issues, but as there’s no quick test, it can often be mistaken for other conditions that cause pelvic pain, such as ovarian cysts, pelvic inflammatory disease or an infection, which the doctor needs to rule out. It may even be confused with IBS or constipation. The MPs behind this report have called on each of the devolved governments, of England, Northern Ireland, Wales and Scotland to reduce diagnosis times to four years or less by 2025. That still sounds too long. Surely we can do better? They are also asking for the National Institute for Health and Care Excellence (NICE) guidelines to be adopted across the UK. To explain that, there are local guidelines, and a gynaecology clinic in the local hospital that has its own rules about who you refer and when, but it would make sense if we were all consistent.
RULE THINGS OUT
With endometriosis, these pieces of uterine tissue – which divides and grows and bleeds when you have your period – can be found in many different areas of the body, such as within the muscle of your uterus, on the wall of the abdomen or on your gut wall. That’s also what makes it hard to diagnose, because if it’s buried under something or within something, you may need several laparoscopies to find it.
FOLLOW UP YOUR CASE
Another problem is that body parts are all separated out into specialisms. A gynaecologist only deals with your reproductive system, so if you see them but you have endometriosis on your liver, they won’t operate. They have to write a letter referring the case, which causes more delays. That plays a part in how long it takes to get a diagnosis, particularly for the one in ten people who have endometriosis outside of the pelvis. If it happens to you, ask how long the wait is likely to be, and follow it up.
DISCUSS PERIODS
There are also calls for all four nations to include menstrual education in the school curriculum. It absolutely should be part of PSHE (personal, social, health and economic) education, because it’s important to have an early awareness of what’s normal and what isn’t, and when to see your GP. It’s also crucial that mums talk to daughters about periods. No girls should have their first period and not know what’s happening yet, shockingly, that still happens in the UK.
KNOW THE SYMPTOMS
Symptoms of endometriosis include pelvic pain in your lower tummy or back during your period, pain during or after sex, and when going to the loo during your period. You might also suffer from constipation, diarrhoea, blood in your pee, heavy periods that bleed through your clothes, and depression.
Timing is key – the symptoms occur on or near your period; if it were an infection, that wouldn’t be the case. Women are often told endometriosis makes it harder to get pregnant, but it depends where it is. If it’s on the ovaries, it can cause cysts, which can make conceiving harder, but a lot of women with the condition don’t have problems, so don’t worry too much about that.
CHOOSE TREATMENTS
There are anti-inflammatories specific to the pelvis that aren’t as irritating to the stomach as ibuprofen. They help with heavy bleeding and pain. The Pill can help too, but not everybody wants to take it. I prefer the use of antidepressants, because they can directly affect how your brain senses pain and can really ease symptoms. It’s draining having to suffer every month, so they can help with that aspect, too. I can see how a patient might feel they weren’t being listened to if they were prescribed antidepressants, because they’ve told the GP they’re in pain, not depressed.
If a doctor doesn’t explain that they can control pain, they may feel fobbed off. That’s the problem with ten-minute GP consultations. Keyhole surgery is another treatment option, where a surgeon looks with a camera for dark speckles and zaps them with heat or a laser.
Even if you don’t get them all, it can make a big difference.
KEEP A PAIN DIARY
If you feel your period pain isn’t taken seriously, or is downplayed by your GP, ask to talk to a different GP. It may take time to get a diagnosis as your doctor tries different treatments, but endometriosis can be diagnosed and you can get help for it. Endometriosis UK has a pain and symptoms diary that you can fill out and take along to the surgery – or email if you can’t go in. That’s helpful for the doctor. Don’t grit your teeth and bear it, get help.
● For info, visit Endometriosis-uk or call 0808 808 2227