And a letter to the Scottish Government

1 in 10 people suffer from Endometriosis and I am one of those individuals. The last few years I have been made aware of what changes need to happen within the system we currently live in. I am determined to make change as I know the struggle with accessing the right care and treatment.

When I last wrote to the Scottish Government a few years ago I got sent back figures and percentages of what the government was doing for individuals with Endometriosis. Yes, it is a positive step but I really want to share with you the realities of what pain us sufferers have to endure. Even with the current policies in place there are still individuals falling through the cracks within the system.

Since January 2019 we have had more than 100 ladies tragically die due to suicide and within the last 72 hours three women have died leaving behind family and loved ones. We can’t tolerate a system that neglects women’s health and drives women with Endometriosis to complete suicide. Women’s Health is such an important subject and I ask for more recognition of this.

I live in Edinburgh and am a patient at the Endometriosis Clinic, EXPPECT.

The doctors try so hard with the limited funding and resources they have. I have been looking into statistics for the financial year of 2017 and 2018 and came across this:

“ The Endometriosis service in Edinburgh had 315 new referrals (funded for 153) and 187 return appointments. Demand for pelvic pain new appointments in 17/18 was 97 (funded for 67) and 207 return appointments (funded for 48). Additional WLI clinics ran in the evenings and at weekends to ensure that all of the women were seen and saw many women as ‘extras’ in our clinics.” 

This statistic really shocked me because looking at these figures very little funding is given to the specialist clinics. It is estimated that 400 to 500 individuals will require complex interventions/treatments. Current estimates for caseload for fertility preservation surgery, representing the most complex end of care are 100 women with endometriosis nationally per annum. This is based on an extrapolation of the caseloads for the two accredited centres in Scotland.

I help to run a support group and have seen firsthand the effects these cuts are having on a lot of women.

There are numerous ladies who require input from other specialties and are having to wait up to a year to be seen and by the time they get seen their condition has worsened. We talk about Early Intervention being important in the management of conditions but in this situation it is not applicable. A lot of the ladies feel very let down by the current system. The support just isn’t there when we need it most and it’s frustrating. More needs to be done to meet the needs of us women and cope with the demand in how complex our condition can be.

Endometriosis is devastating and is a very debilitating condition.

It impacts on both physical and mental health. There are ladies who have had to give up jobs or have been made redundant due to being unwell. We are meant to be protected by the Equality Act 2010 but this has proven that it is not strong enough and it needs to be strengthened. Endometriosis means different medications and treatments in order to manage the condition and for some it means going through surgery. These have detrimental effects on us and it also has an effect on our ability to function on a day to day basis.

Sadly the effects on mental health are huge and some ladies have sadly felt unable to cope and had no support that they felt the only answer was suicide. Nobody should ever have to get to that low point and feel that suicide is the only answer. There is a lack of support for mental health and this is a huge problem. I hope that as a Government this can be addressed because I fear if left any longer there will be an increase in suicides which could be prevented if the right help and support is there.