Dorette's story | Endometriosis UK

Dorette's story

Photo of endometriosis case study Dorette

Read about how how endometriosis has affected Dorette's everyday life and how she manages the condition.

"People mistakenly believe because you’ve had surgery, you should be fine now. I still have a lot of pain."

My experience

My experience I started getting problems from my first period aged 13. However I wasn’t diagnosed until aged 19. My endometriosis resurged about 18 months ago. How many ways can you say ‘Ouch?’ The main symptom is pain. I have chronic pain in the pelvic area, painful menstruation, pain when my bladder is full and pain when I empty. I also have referred pain in my back, thighs, hips and knees. I have been treated with an injection in my stomach, the rest of my treatments have been surgical and tablets, liquids, patches - all to treat the pain. I have a series of different types of painkillers and dependent on the severity of the pain and the area of the pain, I use different ones. Sometimes, a combination of them. It’s become quite a skill determining what works.

I have Stage 4 endometriosis so I had a bowel resection in August 2013. I think one of the things I’ve struggled with is that people mistakenly believe because you’ve had surgery, you should be fine now. I still have a lot of pain. Also putting on a brave face can be hard. It’s seven steps from my bedroom to my bathroom. I know this because I’ve counted them, because on a regular basis I steel myself to make the walk.

Endometriosis and a ‘normal’ life

Life hasn’t felt “normal” for quite sometime. As a trained nurse, I know and have been taught the value of talking therapy. Endometriosis does not only affect you: it affects your family, your partner, your children, often your siblings – in fact, I have a close relative with endometriosis, too. Dependent on how we may feel, the affects can be transferred without intention onto other people in the family. No area of my life is untouched, even intimacy.

If you experience pain during sex it can be difficult for your partner too, men don’t want to cause you pain, so lots of talking about it together helps - it’s just making sure you take the little steps to help make your situation that little bit lighter. My family help out a lot with tasks which I am unable to do at the moment and this helps to alleviate some of the strain on me. I try to remain as active as I can and to just take one day at a time.

- Dorette

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