Nicky has been having pain since she was a teenager and finally got a diagnosis at 27 leading to six operations, but one activity eases her symptoms
A woman who felt crippling pain in her pelvis while reaching up to place a star at the top of a Christmas tree at 27 needed six operations when doctors found out why. Nicky Wager had struggled with painful periods since her teens and was diagnosed with polycystic ovaries at 15. But this was different – and so intense she crumpled to the floor.
Understandably scared she went to her doctor and was eventually diagnosed with endometriosis at age 27. It was the start of a deeply challenging time, which included six operations.
Nicky said: “Endometriosis has ruined my life in so many ways. But it has also introduced me to so many new experiences, a new way of life and some women who I now call my best friends. And I’m so grateful for that.”
Endometriosis is a condition where cells similar to those in the lining of the womb grow in other parts of the body. Although it affects one in 10 women in the UK it is still hugely misunderstood with an average wait of nearly nine years for a diagnosis.
Nicky, now 40, was lucky. Her doctor was understanding and had never dismissed her pain as ‘women’s problems’ or ‘just bad periods’. He immediately referred her to gynaecology, allowing rapid diagnosis followed by surgery. But she has also had bad experiences, with five different consultants involved in her six surgeries.
“Four of them I didn’t like,” she says. “I didn’t feel like they cared about me, I didn’t feel like they listened to me. I had to constantly repeat myself at every appointment. The consultant who did my fifth and sixth surgeries was entirely different. When he looked me in the eye, I knew that he cared. I knew that he had compassion, and knew that he actually wanted to help me.
“I wasn’t just another number on a list. The difference that this made, was indescribable to the confidence I had in him, and that he was doing the best he could for me.”
Nicky, from Leith, Edinburgh, suffered a miscarriage in 2016 and the pain once again grew worse. But it was during the pandemic when it became unbearable. “I had pain every single day of varying degrees of severity,” she explains. “Due to the pandemic, all my hospital care and support was cancelled. I had a bottle of morphine and just had to get on with it. Sitting down was excruciating.
“I ended up having six months off work from my NHS role, and I started walking 10 miles just to buy a few bits of shopping to avoid sitting down. I felt claustrophobic in my own body, like I wanted to peel it off and find a new one. I made the decision to take myself out to Derwent Edge in the Peak District for a change of scenery.
“I was terrified. But on that beautiful, cold, sunny morning, reaching the top of a steep hill with nothing around me except stunning views, feeling the burn in my thighs and fresh air in my lungs, I realised that hiking might be something which could change my life. I was hooked, and never looked back.”
Nicky realised that hiking helped alleviate her symptoms and, despite initially having little confidence in herself, was transformative. “I have two types of pain – every day I have a constant, gnawing back pain,” she says. “And at other times I have excruciating stabbing pains which mean I can barely move.
“Hiking helps me on the days when I ‘just’ have backache. It helps release some tension for me, floods me with endorphins and it helps my mental health. I hike alone 90% of the time.”
Nicky’s experience inspired her to become an ambassador for Merrell Hiking Club, a female-centric community which aims to empower, inform and inspire female hikers. And in May 2023, she set up Endo-MEET-riosis, using Instagram to invite women with the condition to hike in the Lake District.
“This was a huge step out of my comfort zone; I didn’t know if anyone was going to want to come, if they would enjoy it or find it beneficial,” Nicky says. “But the day was wonderful. 12 women showed up, the majority of whom have now attended every single other one of the events I have arranged since.
“One of the things I’ve loved to see is the friendships and support networks that the women have nurtured since coming along. Essentially, I just don’t want anyone to feel alone.”
Nicky hopes to keep spreading the word about the joys of hiking and how life-changing it can be. “My condition has led to some very difficult times in my life, and I sometimes wonder whether, if I’d had access to a group of women who really understood what I was going through, that parts of my life could have gone differently,” she adds.
“Hearing some of the experiences that these women have had breaks my heart, and I’m in awe of every one of them. If these events can help just one person find the support that they desperately need, then it is all utterly worthwhile.”
