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.
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