Endometriosis UK Information Day
I recently attended Endometriosis Information Day, an event held by Endometriosis UK. When I saw they were running this I snapped up the opportunity straight away and booked myself a ticket. If you’ve read any of my previous posts, you’ll know that I underwent a laparoscopy in December which revealed endometriosis. It’s taken me a while to get my head around it and what it means. Until this point, I had thought it was all IBS, due to a number symptoms overlapping. Needless to say, the diagnosis explained a lot.
I don’t think I’ll ever get to the bottom of whether I’ve got IBS (pun not intended!) and endometriosis or whether I’ve got endometriosis which in turn causes IBS. But I’ve come to accept this. I know there’s no point in searching for answers I simply won’t find. Instead, I’m determined to manage the two!
An information day like this was the perfect opportunity to learn more about endometriosis and answer some of the questions buzzing around in my head.
Did you know..?
Here’s some of the key things I picked up – some of which I knew, others which surprised me!
Please note that the below is based on information I picked up during the event – I’m not medically-trained and it’s not intended as advice.
1.Endometriosis can grow in a number of areas around the female reproductive organs, but there have also been reports in other parts of the body and even reports of men with the condition
2.About 10% of the UK population currently suffers with endometriosis – that equates to 1 in 10 women
3.In the majority of cases (roughly 90%), endometriosis is superficial (less than 5mm in depth), while the remaining cases are deep (more than 5mm in depth) – superficial/deep is one of the simpler ways of classifying the condition
4.No-one knows what causes endometriosis but there are a number of theories including: retrograde menstruation, genetics, environmental toxins, metaplasia, being born with it, seeding due to an operation and as a result of spreading through the bloodstream or lymphatics
5.There’s a real issue with the length of time it takes to diagnose – on average 7.5 years from seeing a doctor about symptoms to diagnosis (Endometriosis UK)
6.Misdiagnosis is common – IBS being top – due to a similarity in symptoms
7.Endometriosis is diagnosed via a laparoscopy
8.When diagnosed, the endometriosis is cut or lasered away (excision/ablation)
9.Endometriosis can come back following surgery to remove it
10.Endometriosis is a chronic condition and can have a significant impact on quality of life – that’s why it’s so important to build awareness of the condition – something which Endometriosis UK has been working hard to do for the last 30 years
11.Physical symptoms vary from person to person, but may include: chronic pelvic pain, abdominal cramps/back pain, leg pain, menstrual cramps, painful bowel movements, painful urination, abnormal/heavy bleeding, painful sex, fatigue/lethargy, weight gain/loss and difficulties getting pregnant – I can relate to at least 7 of these…
12.The emotional impact of living with the condition – feelings of isolation, shame, anger, loss of control, negative body image, etc. – can lead to relationship difficulties, a decrease in social activities and problems at work. This can easily become a vicious cycle, affecting all areas of the individual’s life
13.Treatment includes non-hormonal methods – taking painkillers – although this tends to have a limited effect
14.Hormonal treatments include: the pill, Mirena coil, monthly injections and medication which essentially ‘switches off’ the ovaries temporarily. Visanne is another hormonal treatment although this is not yet available for prescription in the UK.
15.All hormonal treatments have their side effects and while some may reduce some of the symptoms, they are unlikely to eradicate them all meaning that many are living with constant pain – cue emotional impacts… (Look out for a future post about pain management tips that I picked up from the day)
Many are suffering with endometriosis and yet there is still so much unknown about it. This has to change! The good news – it’s certainly heading in the right direction 😊 I left the day feeling uplifted after hearing from health professionals dedicated to helping those with endometriosis, as well as meeting so many inspirational women (and their partners – brilliant to see so much support there!) living with the condition.
Did you go to the Information Day? If not, I can highly recommend attending one in the future!