Broken Vaginas Belfast: The new student-led campaign calling for endometriosis care
Flavia Gouveia
A Queen’s University Belfast student has launched a new campaign calling for “free, adequate, effective, and researched endometriosis care and treatment”.
The campaign, named ‘Broken Vaginas Belfast’, was launched by Jess Crisp after she was recently forced to seek private medical care due to the long NHS waiting lists for endometriosis care.
Jess has lived with the chronic condition since she was 11 years old and faced a three-year waiting list for surgery with the NHS. Privately, the surgery - including specialist consultations - will cost Jess around £4,000.
Speaking of the decision to go private, Jess says: “Although I am paying to be seen, the earliest appointment with an endo specialist is January 17. That is two months away”. She adds, “privately there is also a backlog now because so many people are pulling out of the NHS and going private”.
Her symptoms became so severe during a recent flare-up that she was admitted to A&E for pain management.
Jess says, “when I was in A&E the gynaecologist said that all they could do was try to get the pain under control. I asked if I could be admitted for laparoscopy, and they told me that it was considered investigative surgery and I couldn’t be admitted for it. He did say they would get me seen before my next flare-up for a referral, but the waiting list for surgery is three years.”
A laparoscopy is a surgical procedure commonly used to diagnose endometriosis, but while performing the procedure surgeons can also perform other procedures aimed at removing the endometriosis tissue, endometriotic cysts, and scar tissue. All of these procedures can help improve symptoms.
After her trip to A&E, her symptoms did not improve. Jess says, “I couldn’t get out of bed for a week, I could manage a dog walk and then would sleep for the rest of the day. At this point, I decided to go private because I was worried it could be something else”.
“I was begging for a hysterectomy. If I was offered one, I would take it, just for the chance to be free of it all.”
Her experience with the incurable chronic condition has left Jess feeling hopeless and she admits to considering a hysterectomy. She says, “I was begging for a hysterectomy. If I was offered one, I would take it, just for the chance to be free of it all”.
At 23, Jess has seen multiple gynaecologists and had two surgical procedures to remove endometriosis tissue. She has been placed on a range of different contraceptives and medications, including a recent course of injections to induce the menopause.
Speaking of her medical journey, Jess says, “I don’t trust doctors when they tell me things or when they say something might work. I don’t trust that they believe me when I say I’m in pain. I also have this self-blame, I think maybe it is me, maybe it is in my head, it’s a horrible feeling.”
She adds, “when you are in these appointments you can’t really advocate for yourself, because you are in so much pain and vulnerable”.
Emotionally the struggle with endometriosis has taken its toll on Jess, who says: “I’m back to counselling for the first time since I was 18. I have been on depression medication since I was 18 that I can’t come off of because I wouldn’t cope”.
Her experiences with endometriosis and her passion for activism inspired Jess to launch Broken Vaginas Belfast.
“Every person who has messaged me has said they understand the idea of a broken vagina, they really relate to it. I have a broken relationship with my vagina, I’m in therapy for it.”
On launching the initiative, Jess says, “being in therapy has helped me come to terms with my illness, it has made me realise that I can talk about it and advocate for myself and other people. Starting Broken Vaginas has shown me it isn’t just me; I have had messages every day from people saying that they struggle with it”.
She adds, “every person who has messaged me has said they understand the idea of a broken vagina, they really relate to it. I have a broken relationship with my vagina, I’m in therapy for it. I wouldn’t say I hate it, but I am increasingly frustrated with it”.
Speaking of her plans for Broken Vaginas Belfast, Jess says, “the main thing is going to be pushing for change, as much as I want to create a safe space, there is already something like that which exists. Endometriosis UK has a Belfast branch. I really want this to be a campaign, lobbying politicians for change.”
“It is about getting more of a platform; this is something that affects one in 10 women. In a lecture hall that’s around six women who are affected. That’s six students missing out on education when they are experiencing symptoms.”
“I want to work towards getting support from MLAs, getting them to really think about this when Stormont comes back.”
“It is about getting more of a platform; this is something that affects one in 10 women. In a lecture hall that’s around six women who are affected. That’s six students missing out on education when they are experiencing symptoms. Six students with a chronic condition”.
A spokesperson for the Department of Health has said “endometriosis is recognised as a pressure area within gynaecology”, but that further investment would be needed to support the provision of specialist care.
They added that “while it is acknowledged that the provision of endometriosis services in Northern Ireland is an issue that needs to be addressed, severe budgetary challenges facing the Department mean that it has not been possible to fund service developments in 2022/23”.
The Department also said that at present women who have or are suspected of having cancer are prioritised for surgery, contributing to the delays.
Flavia Gouveia is The Scoop’s Science and Environment Editor and is studying for an MA in Journalism at Ulster University.