Living with endometriosis is an uphill battle, from getting a diagnosis to navigating daily life and even accessing healthcare. This Endometriosis Awareness Month, National World is launching the Endo The Battle campaign to amplify the voices of patients with the common condition.
We are telling the stories of those who have had to seek care in the private healthcare sector, or travel abroad, to make those in power aware of the huge impact this can have on both them and their families.
We are telling the stories of those who have had to seek care in the private healthcare sector, or travel abroad, to make those in power aware of the huge impact this can have on both them and their families.
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NewsTranscript
00:00Hi I'm health reporter Sarah McCann. This Endometriosis Awareness Month, National World is launching our
00:05End of the Battle campaign to help raise awareness and amplify the voices of those who live with this
00:10common condition. Did you know that if you experienced your first symptoms of endometriosis
00:15today you likely wouldn't get a diagnosis until 2034? Despite affecting an estimated 1.5 million
00:22women, this common condition often has very long diagnostic delays. In England this is 8 years and
00:2910 months, the same for Scotland, whilst in Northern Ireland it's 9 years and 5 months and in Wales
00:34it's a staggering 9 years and 11 months average time to get a diagnosis. Endometriosis is a systemic
00:41inflammatory condition where cells that are similar to those that lie in the uterus are found elsewhere
00:46in the body. This can cause debilitating symptoms such as pelvic pain, painful periods, painful
00:52urination, painful bowel movements and painful sex. It is a whole body disease with those who have
00:57pelvic endometriosis an estimated 1 to 12 percent also have thoracic endometriosis which can impact
01:03the lungs. Misinformation around endometriosis is really common. We spoke with EndoSouth Coast
01:10founder Julie Hughes to learn more. The biggest, the main one is that it's a period condition.
01:19Endometriosis isn't a period condition, it isn't a menstrual condition, it isn't a gynecological
01:26condition, it's a full body systemic inflammatory condition that then affects the menstrual system
01:34and the gynecological system. So that's one of the biggest ones because if you don't have
01:42heavy painful periods but you're still in pain all the time, Endo isn't suspected. In November 2024
01:50new research revealed that waiting lists for gynecology in the UK had doubled with more than
01:56three quarters of a million women waiting for an appointment. With so many people on waiting lists
02:04we spoke to the co-founder of the mental health project Gabs Pearson to find out the effect that
02:08this may be having on patients. When I had my second private surgery last year it had doubled
02:15so it'd gone up to almost 10 grand and if I hadn't gone privately I probably wouldn't have a
02:20bowel or a leftover anymore because they were completely fused together and fused to my pelvis so
02:27unfortunately we've seen such a high number of people going privately because of the waiting
02:32list being so long and people being in so much pain and you're essentially rolling the dice
02:38because your organs could be stuck together. If he doesn't find anything then my mum paid for both of
02:43my private surgeries and I was like has she just wasted all this money then but equally I'm like if
02:49he hasn't found anything then great then I know either way but we've seen a massive surge in it,
02:55huge surge in people having to go privately because they just can't access getting appointments to see
03:03specialists and I know I'm going to have to do that privately again which is going to be upwards
03:08of 10 grand and it's really difficult for me because people are saying oh you could go abroad
03:14and I would but I have a really good specialist consultant that I've been with for 10 years
03:21and I know if I went abroad I could probably pay less but I want to stay with him for the continuity
03:27but yeah there's a huge surge and I think what's really sad is it's more complex cases of people
03:33as well where they need bowel surgeons involved, a colorectal and then it gets even more expensive.
03:40Over the next three weeks we will be sharing the story of those living with endometriosis
03:44from every corner of the UK and we want to hear from you. If you live with endometriosis, if you
03:51have symptoms of endometriosis or are currently undiagnosed and seeking a diagnosis we really
03:56want to hear your story. We're also looking for people who have ever had to pay privately for
04:02endometriosis care or have had to leave their region for treatment. You can share your story
04:07anonymously through our survey. If you need any support for endometriosis you can access help,
04:14support and toolkits from the Menstrual Health Project. There's also lots of information available
04:19on Endo South Coast.