We WANT to talk about endometriosis!

In the run up to the We WANT Festival we’ll be sharing a few blogs focusing on specific things we’ll be talking about at the festival on Saturday 30th April.

First up our co-organiser Kirsteen Campbell tells us about endometriosis.

Endometriosis is a condition where the cells similar to the ones on the lining of the womb are found elsewhere in the body. It is one of the top 20 most painful conditions in the world. In the UK, 1.5 million women and those assigned female at birth are currently living with the condition, that is 1 in 10. The average diagnosis time is 8.5yrs. Endometriosis can affect you from puberty to menopause but could last a lifetime as there is no cure. It has been found on every organ.

Symptoms can include painful periods, pain during or after sex, infertility, painful bowel movements, chronic pain, fatigue, depression and brain fog. It can be an incredibly debilitating condition.

Scotland has three BSGE (British Society for Gynaecological Endoscopy) specialist centres in Aberdeen, Glasgow and Edinburgh. Endometriosis can only be diagnosed by a laparoscopy. Anyone with stage 4 endometriosis should be seen in a specialist centre.

It can be managed with pain relief; hormone treatments; a hysterectomy may help relieve some symptoms; chemical menopause, and sometimes diet changes can help.

Endometriosis was first talked about locally in February 2020 by myself at the Caithness Community Partnership meeting. Raising the lack of local services and needing more awareness to stamp out the stigma that it is just a bad period. This had a great response and opened up so many more local conversations.  I was invited to attend the Endometriosis UK Parliamentary Event in March 2020 which opened even more conversations.

I then trained as a support group leader in December 2020 and set up the then Caithness & Sutherland support group in January 2021. The group has grown so much in numbers and area. It is now the North Highland group with 150 group members. Rebecca has now taken the lead as the group leader as I have become an employee for Endometriosis UK as the new Scottish Development coordinator.  

It has been so humbling to see the local interest in endometriosis and fantastic to educate people about it. We are delighted to be hosting the most northern awareness march on the 26th March in John O' Groats at 1pm. We are asking everyone to wear yellow as it is the colour that represents Endometriosis. We hope to get a good turnout and some photos taken at the iconic sign and again highlight endo in the North. There will be worldwide marches on the same day.

We are delighted to be involved with the We WANT festival, it will be great to have a stall and be able to talk to people locally and again raise more awareness for the condition.  

If you’d like to read more about endometriosis and the work that Endometriosis UK do, head to their website here.