‘All I wanted was to be listened to’: The fight for an endometriosis diagnosis

Guest post by Sarah Smallbone

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SarahSmallboneEndometriosis. The word had been mentioned before but I had no clue what the word would come to mean to me.

Endometriosis has no cure, something that I would eventually come to learn. I also came to learn that I, along with many women would have to fight to be heard, fight to be believed and fight to be treated.

I was diagnosed with Endometriosis in January 2014 at the age of 31. But this was after being dismissed by the very person that should be helping me – my GP.

Prior to this visit to the doctor, I hadn’t suffered with any substantial pain until I was taken off my contraceptive pill due to some risks associated with it. I subsequently tried other pills, all of which I hated for reasons such as continuous bleeding and horrific mood swings. Eventually, I stopped using hormones altogether and that’s when my problems started.

I was now heavier than normal, going to the toilet was agony and I suffered terribly with back pain. I was dealing with all of this whilst doing a physical job, usually on my feet for 8/9 hours a day. I put up with this for a couple of months, then I realised that taking time off work every time I had my period was not normal.

I called in sick and took myself to the GP. She told me to give it a couple of months to see how things go, to which I refused point blank. I’d already given it long enough to know that this was not right, I was not waiting any longer.

She then asked what I expected, and I quote “well what do you want, a scan or something?” Yes, I scoffed back! She made me feel like I was asking the world when all I wanted was to be listened to. I could not spend another month of crying on the bathroom floor.

I eventually had a scan which showed a cyst on my right ovary. I felt validated, which was utterly ridiculous – I shouldn’t have to feel like I want to prove anyone wrong. I just wanted an explanation for my pain.

Months went by and I eventually had my first laproscopy. They found extensive Endometriosis and I would have to later return for open surgery as the cyst was too big to be removed through key hole, as well as my appendix which the Endo had grown over. But now I’ve had these operations I’m cured, right? I must be fixed. That’s what most people thought. The lack of understanding was unreal.

Not long after the second operation, I started presenting other symptoms such as bleeding when opening my bowels. 5 months later I had excision of recto vaginal endometriosis, with a lower bowel resection and had a temporary ileostomy formed.

The surgery was prolonged and subsequently I went into acute renal failure which was treated with dialysis. A 3 day hospital stay turned into 14 days. It took me 3 months to recover from that surgery and I still had the prospect of reversal surgery in the coming months.

Despite the grueling trauma that I had been through, and by now was very public about, I returned to my job where it was assumed that I was now fine. I was given a warning for my sickness. I felt like people were questioning how much more time I was going to have off sick. Surely by now I must be cured?

By now I had discovered Endometriosis UK, a fantastic charity that offers advice and support through helplines and support groups. These outlets are provided by volunteers who devote their time to helping others. Meeting other women that know exactly how I felt was invaluable to me and I have found life long friends because of this charity.

I was also blown away by the stories that I heard about women fighting for years to be listened to, be it their doctor, their friends or even their partners. The lack of empathy from the very people that should be listening to them or indeed even believing them was mind-boggling. Not only are they in an immense amount of pain from a condition that is life changing, they are also being made to justify themselves.

8 months later I had my bowel reversal which itself brings its own problems. My bowel has not reverted to what it was so I have to learn to live with the unpredictable habits it has developed.

My Endo symptoms are minimal but they are still there. The fatigue is still there, the nerve pain in my thighs is still there, and the effects on my reproductive system are still there. This struggle never ends.

Throughout this whole experience, I have been amazed by the strong women that I have met along the way. Endometriosis throws its own battles at us, but not having the support that is needed is a whole other fight on top.

So many people have not even heard of Endometriosis, and I am determined to help change that. I’m proud to be part of the committee that helps organise the Endomarch London, as part of the World Wide EndoMarch. This is a march through London that unites women and their supporters to raise awareness of Endometriosis, the need to educate, the need to reduce diagnosis time and improve treatments.

The march will take place on the 23rd March, during Endometriosis Awareness Month, and every year the event gets bigger. It’s so rewarding to see that more and more women want to come out and make their voice heard. Equally, it is also sad to know that there are so many women fighting this battle everyday. But slowly, through talking about it, we will get there.


EndoUK-March2019-PosterYou can find Endometriosis UK online at endometriosis-uk.org.uk

Get updates from EndoMarch London on Twitter, on Facebook, and on Instagram, register online here, or email EndoMarchLondon @endometriosis-uk.org.uk

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