Emily’s work to raise awareness of the issues she faces has earned her recognition from the King and the Princess of Wales.
“I’ve had some really amazing opportunities… and that’s what’s keeping me holding on to some sort of hope,” she said.
There are currently two accredited NHS endometriosis centres in Wales, in Swansea and Cardiff.
The centre in Swansea does not currently accept patients from outside the health board area, while Cardiff said it considers outside referrals “where appropriate”.
Every health board has endometriosis nurses to support patients, but Emily, who lives in the Hywel Dda health board region, said lengthy waits meant she had little option but to seek private care.
“There’s been two privately funded surgeries so far, with possibly another one coming,” said Emily.
Follow-up care and advice also comes at a cost.
“No one on the NHS will monitor me currently, so it does become a never ending cycle of funding and finding the right person,” she said.
“If you have a question, maybe a certain medication they’ve prescribed isn’t agreeing with me, it always comes at a cost, you can’t simply ring them and find out.
“I understand that’s the route you take when you have private care, but if the NHS aren’t there to help either, then there’s no choice.”
