The founders of the Northern Endometriosis Sisters Support (NESS) group are even working with two campaigning MPs to ensure sufferers of the condition are treated properly by their employers.
Keisha Meek, from Leeds, who co-founded NESS with fellow sufferers Melissa Porter and Abi Battle, said not enough is known about the condition, which is often dismissed as “bad period pain”.
Endometriosis sees cells like those in the lining of the womb found elsewhere in the body, such as the ovaries, bladder, bowel, and even the lungs.
Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.
According to national charity Endometriosis UK, one in 10 women of reproductive age in the UK have the condition, which can cause chronic pain, fatigue, fertility problems, depression, and issues with relationships and difficulties at work.
Miss Meek, 26, who has had nine surgeries due to the condition, the most recent in December, was moved to create an online support network after finding nothing specifically for women from Yorkshire.
NESS now has more than 350 members on Facebook, and has held regular meet-ups for women in Leeds, Wakefield, York and Hull, and aims to become a charity.
“A lot of women with endometriosis find that they lose friends because they are forced to cancel plans, or people think that they are lying or exaggerating about the pain. It can be quite lonely,” Miss Meek said.
“There’s even people who have lost their husbands or partners because of the problems it can cause in your sex life. “People think it is just a ‘bad period’ but there’s so many other symptoms involved. I’ve been bed bound, and had to leave a previous job because of it.
“Since forming the group, we have all become really close - because we understand what each other is going through.”
The group has been such a success the founders were awarded the Advocate of the Year Award at The Primrose Ball last month, an event that raises funds for Endometriosis UK.
Miss Meek has also worked with Elmet and Rothwell Conservative MP Alec Shelbrooke and Labour MP for Sheffield, Brightside and Hillsborough, Gill Furniss, who is secretary to the All Party Parliamentary Group on Endometriosis, on campaigns to raise awareness of the condition to employers.
Mr Shelbrooke said: “Raising awareness of the condition, especially among employers, is so important. Outwardly, you cannot see anything, but the pain is crippling. It is debilitating.”
Ms Furniss said: “Women with Endometriosis are being failed at every juncture by the health system and wider society. It’s estimated that one in 10 women are suffering in silence from this debilitating disease with symptoms such as chronic pain, intense and heavy bleeding and fertility problems.
“I am delighted with the work that Keisha has been doing to bring Endometriosis sufferers together.”
Chief executive of Endometriosis UK, which also has support groups in Sheffield and York, Emma Cox, said: “The average time it takes to achieve a diagnosis is 7.5 years - in which time a woman could have lived in chronic pain and taken time off work for symptoms that were not linked together, causing issues with her employer.
“It can also have a huge affect on young women’s education, with girls missing out on up to two years of schooling.”