Our most recent podcast episode features Alannah Juchniewicz, who spoke to us about her experience with endometriosis, how it impacts her life and wellbeing, and her work as an ambassador for Endo SOS, a charity offering support for those with the condition in the South of Scotland.
March is Endometriosis Awareness Month, so to complement our chat with Alannah, we’re going to focus on what the condition is, the symptoms it can cause, and the impact it can have on mental health.
So, what is it? Endometriosis is a chronic inflammatory disease, where cells similar to the ones lining the womb are found elsewhere in the body. It is most commonly found in the ovaries or fallopian tubes, but can affect any organ of the body. These cells act in the same way as those lining the womb, in that they react to monthly production of the hormone oestrogen by building up and then breaking down into bleeding – but unlike those in the womb, they are not expelled in a monthly period and the blood has nowhere to escape to. This can cause inflammation, pain and the formation of scar tissue.
In the UK, approx. 1.5 million women currently live with the condition. It can be challenging to get a diagnosis as the symptoms are often similar to other common conditions (like IBS), and the only definitive method is by laparoscopy. It is also unfortunately common for women to feel ignored, with their pain being dismissed as normal and something they just have to put up with. The average wait for a diagnosis in the UK is 8 years and 10 months.
There is no known cure, and treatments are limited. They include surgery (ranging from removal of patches of endometriosis to hysterectomies or removal of ovaries), hormone treatments (that work to block the body’s production of oestrogen) or pain relief.
The impact of the condition varies between individuals, but it can be severe. Physical symptoms can include chronic pain (including painful periods, bowel movements and pain during or after sex), fatigue or difficulty conceiving, which can in turn cause anxiety, isolation, problems in a couple’s relationship and sex life, and issues with maintaining friendships and work/social commitments.
All of these symptoms can also affect mental health, with depression being another common symptom of living with endometriosis – indeed, Alannah describes her experience of living with depression as a result of the condition. The culmination of dealing with constant pain, the side effects from hormonal treatments and the burden of the diagnosis itself resulted in her feeling worn down and facing a seemingly bleak outlook.
To ease the feelings of depression, Alannah has built up her own catalogue of coping mechanisms. She openly talks about how she is feeling, which helps to acknowledge and release emotions. Talking to others in support groups has also helped, as speaking to those who truly understand offers invaluable comfort and validation. She also engages in activities that she finds uplifting, restorative and distracting, like cold water swimming and trail running. Her ambassador role at the charity is another way of combatting any internal negativity, by transforming it into something with a purpose, that can have a positive impact on others.
For a condition that affects so many people, it’s still so misunderstood. Raising awareness is crucial – the greater the understanding, the more people will push for research will be carried out and for the diagnosis process to improve, which will make the lives of those suffering with endometriosis that little bit better.
If you suffer with endometriosis, or think that you might, or you know someone who does, you are not alone. There are many people out there who understand how you feel and can offer support. Some of those organisations are listed below:
As we have learnt, endometriosis is chronic and lifelong. The most important thing you can do is be kind to yourself, and to echo Alannah’s parting words on the podcast, the best way to combat something that pervades your whole life like endometriosis can, is to do what makes you happy.
Photo by Jannes Jacobs on Unsplash