Eight things endometriosis sufferers want you to know
To mark Endometriosis Month, we’re helping bust some misconceptions around this common condition
Endometriosis is not uncommon. It’s believed to affect one in 10 who menstruates. Yet it’s still widely misunderstood, and those affected can struggle for years before getting proper help.
Because it’s associated with the menstrual cycle (it occurs when cells similar to those that grow in the womb lining grow outside the womb too, resulting in inflammation, scar tissue or adhesions and blood-filled cysts/endometriomas), it’s often dismissed as being “just bad periods”. But endometriosis is a medical condition which can have a huge impact.
So, this Endometriosis Month, here are eight things everyone needs to know…
1. It’s not ‘just period pain’
A bit of cramping with your period is normal. But as Faye Farthing of Endometriosis UK points out, one of the big myths around endometriosis is that it’s “just a bad period”.
“Comments like this can be really damaging, not only to those experiencing the symptoms, but to society as a whole, as they are preventing people from seeking help and allowing taboos about menstrual health to continue,” adds Farthing.
2. Symptoms can be complex
Whilst some may not experience many symptoms at all, for others it can be debilitating, says Farthing. “Common symptoms include pelvic pain, painful or irregular periods, pain during or after sex, painful bowel movements, pain when urinating, fatigue, and difficulty getting pregnant.”
3. It can take years to get diagnosed
“It takes, on average, a shocking eight years to diagnose endometriosis,” says Farthing.
“A recent report by the All-party Parliamentary Group on Endometriosis of 10,000 patients also found that, prior to getting a diagnosis, 58% visited their GP more than 10 times; 43% visited doctors in hospital over five times, and 53% had to visit A&E. During this time many will be misdiagnosed, and in some cases even told it’s ‘in their head’. Not only can the disease worsen if left untreated, delayed diagnosis can have a huge impact on mental health, career and relationships.”
4. Periods that majorly disrupt your life are not normal
Symptoms that render you housebound, unable to function or land you in A&E are not normal. “If you are struggling to get a diagnosis, keep going,” says Farthing. “Keep a pain and symptoms diary, so you can share it with your GP. And you can always ask for a second opinion or see a different GP if you are dissatisfied.”
5. Obtaining a suitable investigation is vital
Being referred to a specialist is important. While ultrasounds and MRI scans can be useful, a laparoscopy is the gold standard diagnostic test, says women’s health expert Dr Nitu Bajekal, a senior Obsgyn consultant.
“This is a keyhole procedure that allows the surgeon to perform a thorough assessment and confirm the diagnosis, take biopsies, and the endometriosis can be treated at the same time by an experienced surgeon.”
6. There’s a psychological toll too
“The mental health impact can be huge. Years of fighting for a diagnosis, coupled with many of the symptoms already associated with poor mental health, such as chronic pelvic pain and infertility, is contributing to many of those with endometriosis also reporting poor mental health. There needs to be pathways in place so that those with the condition have access to support for both their physical and mental health,” says Farthing.
7. Treatment may involve surgery
Managing endometriosis can vary from person to person and usually begins with the most conservative treatment options, such as pain relief and hormonal treatments, but surgery may be required.
“Surgery is definitely indicated in endometriosis for some, to relieve pain, improve fertility, treat cysts and release scar tissue,” says Bajekal.
Again, this usually means a laparoscopy, where the surgeon is able to remove scar tissue/ adhesions. More complex cases may involve other organs such as the bladder and bowel, and some may have radical surgery (removal of the ovaries and/or uterus) as a last resort.
8. There is hope
Finding the right treatments for you can make a huge difference. Dr Bajekal says lifestyle measures can also play an important role.
“There is always a place for making changes that can make a difference in the overall management of endometriosis, whether it helps with better control of menstrual or bowel symptoms, or quicker recovery from major surgery,” says Bajekal, who adds: “There’s growing evidence to suggest avoiding meat and eating a high fibre plant-based diet can help with symptoms. [And] acupuncture, breathing techniques, yoga and regular exercise can all help with pain management.” These aren’t a replacement for appropriate medical interventions, but can play a part in supporting your health and sense of control over your wellbeing.
Endometriosis UK can also be a great source of support. “If you also need someone to talk to, do reach out to our support services,” says Farthing. “We run a helpline, online forum, and support groups across the UK (currently online), as well as a series of webinars.”
For more information, visit endometriosis-uk.org
Elaine Agnew (53) originally from Kilwaughter in Co Antrim, has created the music for Turnabout, a new family friendly show exploring children’s thoughts on hope, as part of this year’s Belfast Children’s Festival. She writes music and facilitates creative music workshops in education and healthcare settings, encouraging people to be creative through music. Her partner is Andrew Kemp (51) whose daughter Eirinn (21) is in her final year at Strathclyde University studying Prosthetics and Orthotics
Do you take regular exercise and if so, what?
I try very hard to take regular exercise but looming deadlines and horrible weather sometimes puts a stop to that. This month Andrew and I have been doing yoga every night for at least 30 minutes. At the weekend we’ll get out for a decent walk up round the Giants Ring or the Lagan Towpath which is close to where we live. I hope to get back out on my bike soon — I love the idea of running but it doesn’t come naturally!
What is the worst illness you’ve had?
A few years back I had a horrendous dose of vertigo. I was working that day in a school in Ashford in County Wicklow and afterwards drove up to Dublin for a rehearsal with the RTE Philharmonic Choir. I didn’t feel great that day. When I got parked at RTE my head started spinning and I felt very dizzy. I had to sit very still in my car as any head movement made me feel sick. I then started vomiting and had to hold tightly onto my steering wheel as it felt that I was going to fall if I let go.
A passer-by saw me in distress and offered help. I called my friend Jacinta who took me to St Vincent’s Hospital where I was admitted for three nights. When I arrived they thought I was having a stroke as my speech was slurred, but on further examination I was diagnosed with vertigo. I felt awful — any movement of my head made me vomit, even blinking made me sick.
Since then I have had a couple of gentler attacks — I know when it’s coming and so I go to bed with a hot water bottle and weather the storm.
How healthy is your diet?
My diet is fairly healthy. I love vegetables, especially red ones, and I’d happily survive without meat. I grow my own potatoes, onions and raspberries and in my greenhouse I grow tomatoes, cucumbers and spinach — everything I grow is eaten! My neighbour has three hens (Nugget, Omelette and Goujon) and he regularly gives us fresh eggs.
Any bad habits?
I’m partial to a cheeky chicken chow mein…
Do you drink and smoke/ if so how much?
I don’t smoke and I love a glass or two of pinot grigio, though I can easily down a bottle or two of Prosecco with my beautiful god-daughter Francesca!
Do you take any supplements?
Occasionally. I don’t like fish. I had a really bad experience in Iceland (the country, not the supermarket) and have never liked fish since. I take cod liver oil supplements to counter that.
How do you take time out?
When you work as a freelance musician it’s hard to turn off. I love gardening and that’s my go-to place to relax. I also like to spend time with my mum down on our family farm and we’ll bake soda bread and drink loads of tea. Cooking helps me to relax.
How well do you sleep?
Mostly good, but when I can’t, I’ll come downstairs and have a hot drink, and when I go back to bed I’ll sleep great.
Do you worry about getting old?
No, not at all. Getting old is a gift that has given me confidence and I appreciate everyone and everything that I have in my life. I’ll never retire though, I’m going to age creatively!
What is your go-to product that keeps you feeling healthy?
Fresh air…
Free screenings of Turnabout by Maiden Voyage Dance will be available online and on demand as part of Belfast Children’s Festival from March 6 to 14. Book your places at www.youngatart.co.uk/ whats-on/turnabout. To book a free Turnabout primary school or group workshop with Maiden Voyage Dance, email: engage@maidenvoyagedance.com
‘ My head started spinning andi felt very dizzy’