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Hi, my name is Susan. I'm a Support and Development Worker at Health in Mind and I have Endometriosis. ‘What is that?’ I hear you ask?

In October 2019, I was diagnosed with Endometriosis and despite having battled to get that diagnosis, in the spirit of Endometriosis Awareness Month (March 2021), I wanted to raise awareness of the condition with you all. You may know someone who may be struggling with certain symptoms, but like me, hadn’t heard of this often debilitating condition. If sharing my personal story can help just one of you reading this, then I consider Endometriosis Awareness Month a massive success.  

What are the symptoms of Endometriosis?

Endometriosis is often considered an invisible illness and symptoms will vary woman to woman but here are just some of the common signs to look out for:

  • Pain during/around menstruation
  • Painful irregular periods
  • Painful bladder & bowel movements, including bloating
  • Excessive bleeding
  • Chronic pain & fatigue
  • Infertility / sub fertility

My Endo Journey

Looking back at my teenage years, I suspect Endometriosis has been an issue for a long time and despite contacting my GP’s I became really disheartened that I wasn’t being listened to. 

Missing 4-5 days every month must be normal I would tell myself… from missing uni, to family commitments, or even not being able meet friends on a set date…I just felt unreliable and this affected my mental health too.

The older I got, the worse my physical symptoms became. Particularly after having my babies, my symptoms suddenly became unbearable. Suddenly my pain was more sporadic, from erratic bleeding and bowel issues now also impacting on my daily life and my mental health and wellbeing. From day to day activities I was struggling with pain, dizziness, nausea and anemia. Something had to change. 

Having seen countless GP’s I finally struck gold and found one GP, who specialised in Women’s Health. She listened and took all my symptoms on board and she very quickly suspected Endometriosis.

This wasn’t even a word or condition I had heard of previous to that appointment, but as I looked at the printout, suddenly all my years of doubting myself and pain led me to a waiting list for seeing an Endo specialist within Gynecology. 

FACT:  Endometriosis is the second most common gynaecological issue affecting women

In some ways I wanted to jump for joy having got a diagnosis, an answer after so many years but felt equally unsure of what the future held.

FACT:  It can take up to 7.5 years to get a diagnosis of Endometriosis here in Scotland

My daily life now and how I look after myself both physically and mentally

Fast forward to now and I admit that my daily life is still impacted by the unpredictable nature of endometriosis and in terms of ‘flares’ I can become really pained and swollen in my abdomen. Stress and anxiety can also be contributing factor to flare ups too, so being mentally well is really important for me.
I find self-care activities like warm baths, hot water bottles, gentle exercise (getting back to my walking slowly!) and other relaxing activities like reading and listening to music or podcasts while resting on my difficult days helps. I also keep a close diary of both my physical symptoms and my mood too. I find it almost cathartic to see how far I’ve come. 

Endometriosis has no cure but it is part of my life now. My main priority is finding the best way to live with it, which may mean surgery, and reminding myself that whilst I fought for this diagnosis for a long time, that it doesn’t define me.

Beyond the diagnosis and pain, first and foremost I am a wife, a mother, a sister, an auntie, a daughter, a friend and a work colleague. If anything, Endometriosis will make me a stronger and more resilient person.

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