Endo The Battle: I had to use our wedding fund to pay for surgery

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Health campaigner, Sarah McCann, shares her journey of having to fund her endometriosis surgery, because of long NHS waiting lists and a lack of awareness about the debilitating condition.  Learn more about Sarah's campaign, Endo The Battle at https://www.northernirelandworld.com/health/endo-the-battle-i-travelled-2000-miles-for-endometriosis-care-we-need-change-now-5031723  Video filmed and edited by Lucinda Herbert

Transcript

00:00I experienced my first symptoms when I was eight years old and at first materialised as bladder

00:13symptoms. We didn't really know what was going on, there wasn't any infection and at the time

00:18I was taking my family's GP and it was kind of a mystery. I was 10 I had my first period and then

00:26I had quite debilitating period pain along with the bladder symptoms. Again went back to the GP and

00:33it was just this is one of those things, painful periods are normal and this is how unfortunately

00:38it's going to be for you. As the years went on all these additional symptoms started to creep in

00:45which kind of muddied the waters a lot of the time because I was having all these symptoms and they

00:51were all being looked at individually but nothing was being looked at as a whole picture.

00:57So I shared those symptoms just social media and a lot of people got back in touch with me and said

01:02you have all the symptoms of endometriosis if you've ever heard of that before

01:06and it had never been mentioned to me as a possible cause and that was kind of the first time I

01:11heard endometriosis and I thought okay this light bulb moment that sounds like me

01:19we need we need to find out if this is me.

01:20When you don't know what's wrong with you you don't know how to ask for help you don't know

01:26what treatments are available and it's kind of hard to seek support as well.

01:31There is this misconception that it is not like debilitating that it is you know just

01:37menstrual pain that it's just cramps or that there's this association with it just being during

01:42the menstrual cycle and it doesn't really I guess give the severity of what people are going through.

01:48I have had to seek private treatment throughout my journey to get endometriosis diagnosis and also

01:54endometriosis surgery.

01:55We used family money my husband and I were going to get married so we used the money we were going

02:00to use for our wedding and the second one we crowdfunded and purely the reason for that was

02:06was one barriers trying to access referrals or to be able to access a diagnosis through the NHS

02:12through waiting lists or normalizing the symptoms so you know again a lot of the time because no one

02:20really knew what was going on with me at the time the symptoms were kind of normalized years were going

02:25by to get the referral to see somebody to get referred for tests to then be told that test is

02:31clear to then go back to the beginning and start the process all over again.

02:38I was diagnosed with endometriosis in July 2019 it does change things hugely and I know what's going

02:44on in my body but it is kind of always a mystery regarding the pain will it reoccur

02:51what's going to happen what are these symptoms is this symptom related to this is this symptom

02:54related to that. Endometriosis is an uphill battle from just getting a diagnosis to getting someone

03:00to listen to you to firstly hearing the word endometriosis and then to try to access the care

03:05and access the support that patients should be able to get in a timely manner.

03:11We need to bring down the waiting lists we also need to ensure that all frontline medical

03:16professionals are upskilled so that they recognize the signs and symptoms of endometriosis so that

03:21they can refer on and we need to be able to just have those open conversations and we also need to

03:26basically push back on the misinformation that endometriosis is a period disease or menstrual disease

03:32it is a whole body condition that can impact you in so many different ways and we just really need

03:37more emphasis on education.

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