March marks Endometriosis Awareness Month and as we are half way through - many people - including politicians, have spoken out about what needs to change.
Monica Lennon, Scottish Labour MSP for Central Scotland and Maree Todd, Minister for Public Health, Women's Health and Sport, appeared during a virtual event as they vowed to do their best to help patients get the best care possible.
Speaking at the Endometriosis Action Month: Scottish Parliament panel debate this week (March 15) Monica Lennon said that more had to be done and applauded those speaking out.
Her remarks come after she submitted a motion in Parliament to improve the care for those with endometriosis in Scotland.
The motion states that Parliament welcomes the recent Endometriosis UK report which "focuses on understanding the provision of, and barriers to, care in Scotland for endometriosis."
It too welcomes commitments made in the Scottish Government’s Women’s Health Plan: A Plan for 2021-2024 to reduce the average waiting time for a confirmed diagnosis from 8.5 years to 12 months as well as the implementation of the "National Institute for Health and Care Excellence's (NICE) guideline and quality standard on endometriosis across Scotland to ensure the basic level of care is met, facilitating relationship development between healthcare services through Managed Clinical Networks to allow for smoother referrals, increasing education at primary and secondary care levels."
Monica said: "A lot has changed, but for people living with endometriosis its become tougher during the pandemic - there's no way of sugar coating that.
"For anyone living with a chronic condition, effectively the NHS was put into emergency measures and many of your treatment options were taken away - so that has been really tough.
"We have this really important mission to reduce the average diagnosis time from eight and a half years down to 12 months by May 2026 - the end of this Parliament term.
"But we're going to have to, on a very regular basis, hear how that is going and I think it would be great to hear regular updates in Parliament about whether we're making progress - and importantly if we're not making any so we can try and work together."
Referencing the BBC survey which saw almost half of its 13,500 participants take part admit they had experienced suicidal thoughts., she added that it's not just about "physical health" it's also about "mental health and well-being."
She continued: "Where I think we do need to make progress is around education. Mental health and well-being education could be a game changer.
"Early diagnosis is obviously important, better pain management is an urgent issue and finding the right treatment at the right time is an ongoing challenge."
Whilst recognising the importance of speaking out and referencing Endometriosis UK's slogan 'End the silence, end the pain, end endometriosis', the MSP added that for many people their journey to a diagnosis can be difficult.
She concluded that for the patient, constantly advocating for themselves and the community can become "exhausting and traumatising."
"We want to get to a place where we are able to celebrate real improvement in care so we can talk about improvements in the workforce and in education.
"We need to challenge gender inequality wherever it exists and that includes medical misogyny. We are seeing people who can ill afford it turn to private healthcare when they should be able to get the right treatment at the right time on the NHS."
Endometriosis UK, Monica Lennon and Maree Todd all stressed just how valuable it was to listen to patients and to have their voice heard.
One sufferer from Glasgow - who has both endometriosis and adenomyosis - said that the endo community are "happy" to see that action is happening such as the women's health plan - however there is an issue around communication.
Britt Gibson, leader of Glasgow's Endometriosis UK Facebook group explained: "The problem at the moment is none of us are really receiving effective communication for our care - we don't know where we are on the waiting list.
"A lot of people with endo are sitting in excruciating pain. Their work has been affected, some may have been let go because they couldn't continue on and some may have dropped out of college.
"Their pain is affecting their mental health and their overall well-being and they're not having clear communication from the health board or the hospital.
"Some are getting discharged early without any follow ups and they have no idea who to contact.
"The same could be said for people who get a diagnosis and their follow up gets change or cancelled - the exact same things happens for those who try to get referred.
She added: "For some people they've been on a waiting list for two or three years, they're in so much pain and they're not getting any support, access to mental health resources or up to date communication.
"So what I really ask is 'what can we do now to create consistent communication between all of the health boards'. It's fantastic we have these pathways but something needs to be done at a fundamental level."
What is endometriosis and what are the symptoms?
Endometriosis - thankfully shortened to 'endo' - is a condition where tissue similar to the lining of the womb grows outside of it.
Endometriosis UK explain: "During the menstrual cycle, the body goes through hormonal changes each month. Hormones are naturally released which cause the lining of the womb to increase in preparation for a fertilised egg. If pregnancy does not occur, this lining will break down and bleed – this is then released from the body as a period.
"In endometriosis, cells similar to the ones in the lining of the womb grow elsewhere in the body. These cells react to the menstrual cycle each month and also bleed. However, there is no way for this blood to leave the body. This can cause inflammation, pain and the formation of scar tissue."
There are many symptoms and it all varies depending on where endo grows within the body.
Some of the main symptoms include:
- Period pain that stops you doing normal activities
- Pain during or after sex
- Painful bowel movements
- Pain when on the toilet
- Difficulty getting pregnant
- Fatigue
- Heavy periods
- Abdominal pain outside your period
- Nausea
- Shoulder pain
- Brain Fog
You can donate to Britt Gibson's Endometriosis UK fundraiser here.
