Living with Endo
By Shaunagh McClean, Roaring Girls producer, endometriosis sufferer, and toast eater...
Please note this blog contains graphic descriptions of Shaunagh's insides.
Hopefully over the past few weeks you have seen a lot of people talking about Endometriosis on the news and on your social media timelines. Over the past year, an All Party Parliamentary Group has been meeting to discuss the disease, the treatment times and hear from people suffering about their lives and how Endometriosis has impacted it, and this week they have released their findings.
You may not have seen anything about this, and be wondering what Endometriosis is, and why I am writing about it now. Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places. It is really common, with 1 in 10 women being affected. Symptoms include, debilitating abdominal pain, painful sex, difficulty getting pregnant and problems with your bowel or bladder movements.
The APPG report is a super long document (70 pages!) so I thought I would just outline some of the points which really struck me:
-90% of people suffering from Endometriosis have asked for psychological support and have been denied it.
-35% of people have had a reduction in their income because of endometriosis.
-89% have felt isolated because of their condition.
-58% had visited their GP more than 10 times before being diagnosed
There are more horrifying statistics, but I won’t share them with you now (otherwise I will be here all day typing out percentages) - instead I urge you to look through the report for yourselves which can be found here.
This week I sat in a zoom webinar with the APPG members, as they discussed their findings, and one thing really struck me. It takes an average of 8 years to be diagnosed with Endometriosis, and it is believed this is the case as not many people are aware of the condition. A question was raised about what can be done to raise the profile of Endometriosis, so that people can be diagnosed and treated in a quicker time frame. The answer was that we need to talk about it more, so that’s what I am here to do today.
I was diagnosed with Endometriosis in 2018 at the age of 25, after first presenting with symptoms at my GP when I was 14. A lovely 11 year battle. I had never heard of the condition until I was 24, and my mother was diagnosed with it during an operation.
The only way of positively diagnosing endometriosis is through keyhole surgery, and when I woke up from the operation, the consultant told me that I was ‘riddled’ with the disease. It was all over my outside of my womb, there was a large amount of scarring from where the endometriosis cysts had burst, and both my ovaries were stuck to the side of my womb. Only a year later, the pain never went away, and a meeting with the Endometriosis specialist, it was confirmed that the endometriosis is back, and has possibly invaded my pouch of douglas and bowel. An ultrasound showed that both my ovaries are stuck to my womb again - however, my right ovary has decided to bring the bowel into the party. I was due for surgery in March, but covid-19 postponed this, and I am looking at January or February 2021 for a rescheduled date.
Unlike the other 58% of people who took the APPG survey, I only visited my GP four times between the ages of 14 and 16. I was told that the pain was normal, and that I was making it worse in my head, and unfortunately I believed them - and sometimes I find that I still think that. The pain that I feel is constant, and I have a daily base level of pain in my abdomen which increases to a debilitating level when I am on my period. Even though I struggle to get out of bed, or even lift the kettle to make tea, I carry on with my day as much as I can, because in the back of my head there is still a doctor telling me that I am making the pain up.
Endometriosis has stopped me from making big changes in my career, I don’t like to plan social events in advance in case I need to cancel, and has had a huge impact on my social life and relationships.
However, on the positive, I have built an amazing support system around me. My friends, family and partner are brilliant. At The Roaring Girls, we have built processes and a culture where wellbeing is one of our main priorities. I have found an amazing support group, where other people suffering with Endometriosis have come together to share information, experiences and offer advice.
If you, or anyone you know has symptoms of Endometriosis - please feel free to reach out to me.
The louder we are and the more we talk about periods, the better the outlook is for the next generation of menstruators.
As this post has been a bit bleak - please see a picture of me below. I had just woken up in hospital from my operation, and was trying to prove to my partner that I was feeling great, so sent this picture of me eating toast….you’re welcome.
Shaunagh, post-surgery, eats toast and looks delightful.
If you’re looking for support: www.endometriosis-uk.org/
And if you are in Hull, join the Endometriosis Support Hull Facebook group.