Staff Blog - Living with Endometriosis

March is 'National Endometriosis Awareness Month'. 

Not many people are aware of a medical condition called Endometriosis, yet it affects around 1 in 10 women each year, and can have a severe impact on day to day life. 

Endometriosis is a condition where tissue similar to the lining of the uterus is also found elsewhere in the body, mainly in the abdominal cavity. It can cause painful symptoms such as heavy menstrual periods, and pain in the intestines and lower abdomen etc.

 

To mark Endometriosis Awareness Month, one Huddersfield University staff member, Samantha Tavander, has kindly offered to share her personal experience of living with Endometriosis with us, to help raise awareness of this health condition...

'As I write this, I am in pain, it’s not bad maybe a 4/10. Pain and the associated fatigue are the daily symptoms that for me interfere the most with my life and appear to be a theme within my personal narrative.

Endometriosis is a progressive inflammatory disease that impacts pretty much every aspect of a person's life. It is classified as the presence of endometrium-like tissue found outside of the uterus.  One of the biggest hurdles people face is getting a diagnosis in the first place, as often patients are dismissed  for year by their healthcare providers (an average of 10 years).  

My teenage years marked the start of my journey with endometriosis, I had periods so heavy that I would faint, I missed many days off school. I was told that this was what happened when your periods started, pain was normal and part of “becoming a woman”. My GP suggested maybe I just wasn’t very good at handling it. 

With this in the back of my mind, I carried on until the age of 20.  After months of begging my GP and multiple tearful visits, I was finally referred to a gynecologist.  The only way to properly diagnose endometriosis is surgery, my first surgery was in 2011. When I woke up, groggy and in pain from the surgery the first thing I asked was “was it all in my head or do I have it”, I was told yes I had multiple adhesions and cysts “no wonder you were in so much pain” they said, then I was discharged with no follow up.

I had a few years of relief until once again the pain got so bad, I was repeatedly in hospital. I was under disciplinary at work for days missed, and my relationship with my partner was under an immense amount of strain because of the impact and toll it had on our relationship. In 2014 I had my second surgery, this time it had spread even further, and then I was discharged again without follow up but told to prepare myself for a future without children or as one Dr put it –“get cracking on trying for a baby”, I was 24.  This pattern repeated itself and at 27, I had my third surgery. 

The pain has not returned to its previous levels, but I live my life in constant flux of pain and fatigue. Every time I have a day in significant pain, I cannot help but worry what the future will hold and what other options I could explore to manage my symptoms with very little to no support from my healthcare providers.

This year I have decided to explore the lived experience of endometriosis for my PhD. It is my personal lived experience and the experiences of others that drive me to explore the impact of endometriosis further. Yes, we are in pain, but the impact of that pain runs deep.  Endometriosis impacts all areas of a person's life, and it is so often dismissed and under diagnosed.  Pain that impacts on your work, relationships, studies and disrupts your hobbies is not normal and shouldn’t be something that people just have to put up with!

As a society, we need to do more to understand the lived experience of endometriosis and put pressure on healthcare providers, employers and policy makers to take this disease seriously.

The current campaign by Endometriosis UK aims to do just that; for further information please visit https://www.endometriosis-uk.org/endometriosis-action-month-2023.' 

 

Thank you so much Samantha, for sharing your story with us.