Hayley's Endometriosis Story
By Hayley Mills
Sharing your endometriosis story is an act of both bravery and compassion, your story can help inspire and empower others. At QENDO, we share the many voices of endometriosis, adenomyosis, PCOS and pelvic pain. This week we hear from our Ipswich Facilitator Hayley, who shares her diagnoses and how she found support through QENDO, and was empowered to give back to the community by becoming a volunteer for team QENDO.
"How long do you think you've had endometriosis?" my gynaecologist asked me during my last appointment. I stared at her with a blank look on my face. I couldn't answer her. I can never answer this question when anyone asks me. My gynaecologist, my doctor, my pelvic physiotherapist, my family, my friends, my colleagues…always a shrug and a blank stare..The trouble is, how do you know how long you have had a condition, like endometriosis, when you've been told for as long as you can remember that what you are experiencing is normal.
Cramps. Excessive bleeding. Fevers. Lowered immunity. IBS symptoms. UTI's. Bladder fullness/pain. Ovulation pain. Pelvic pain that causes mobility issues. A variety of pains that occur throughout the month not only during menstruation or ovulation. Pain during and after sex. Abnormal cycles. The list goes on and on……
Like a lot of young girls, I started my period around the age of ten. Since then, I have ALWAYS had painful periods that have ALWAYS affected my way of life. But that's normal, right?!
Over the counter pain relief has always been my go to, despite giving little relief. The contraceptive pill and I never got on well - not in my teens, twenties or thirties - so we've always parted ways.
After turning thirty my "normal" became much worse. I missed periods, had extended periods and the pain was getting worse. My GP at the time referred me for ultrasounds, noting the possibility of a cyst on my ovaries. My GP gave me the all clear results on my return and assured me that everything was normal and I was probably experiencing a "blip" with my hormones.
I met a new friend through a mutual interest and we got talking about wellness, she mentioned she had endometriosis. She explained how it affected her and I shared my symptoms with her. She was certain my symptoms were endometriosis related and urged me to get a second opinion. But my GP said it was normal and that my friend was not a doctor.
Fast forward around six months from meeting her. I am in agony. I can't sit, lay or stand. My body is shaking and sending me signals that I need to go to the bathroom. I can't go. My body wants to be sick, but it can't. I am crying, hunched over a toilet and completely confused. I try to undress and crawl into the shower, turning the hot tap on hoping to soothe my body from this excruciating pain. My partner comes into the bathroom to find me laying in the shower, he asks if he should take me to the hospital. I can barely speak to him but mutter that I'm ok.
I wake in my bed, damp, achy and fatigued. I don't remember how he or I got me into bed, because I passed out in the shower from the pain. I was sore, tender and feeling the most exhausted I had ever felt in my life. My partner and friend urged me to return to the doctor.
This time they listened. I was referred to a local private gynaecologist. She believed me and immediately suggested endometriosis. I had my first laparoscopy in March 2019, which diagnosed severe endometriosis at the age of 32. I cried so much when my gynaecologist gave me the results after coming round from surgery, finally some answers, some proof!!! It's not normal and it's not all in my head! But I was also overwhelmed at what endometriosis was and the effects.
Recovery for me was very slow and painful. I didn't bounce back as quickly as I or others thought I would. I also didn't seem to experience the relief others rave on about after excision of endometriosis, which has been confusing and frustrating for me.
I quit my job to heal for a few months, as early childhood isn't the ideal work environment to recover in. In those months, I relearned how to crochet, which kept my mind and hands busy, stopped me from visiting Dr Google and gave me something to take pride in and have a creative outlet, before returning to work casually so I could accept shifts when I was well enough and take time to self care or go to appointments.
The frustration and confusion lead me to look for information or people to help. I discovered lots of Facebook support groups which were sometimes helpful and reassuring but also sometimes depressing and not the sort of help I was looking for.
I then noticed an event on Facebook (thank you algorithms for once!) A fundraising music gig at a bar I had been to before, with many of the local bands I enjoy listening to! It was hosted by QENDO who I discovered hosted lots of fundraising and support events throughout the year to raise awareness and funds for research into Endometriosis. I had the best night with my husband and friends, money and awareness were raised, music and good beverages were enjoyed and I found some courage from somewhere to speak to Kristen at the QENDO information area, who is absolutely lovely!!!! After our chat she gave me some resources to take away and I purchased my "I am 1 in 10" pin from her. I continued to follow QENDO on Facebook for information, support and to see what events I would be interested in.
This year, I became increasingly aware that lots of areas were having support meets for QENDO but there never seemed to be anything available for my area. I desperately wanted to attend one local to me, I felt I couldn't be the only person in my area that felt that way! After a few messages and phone calls back and forth with QENDO, they suggested that perhaps I could be the meet-up facilitator for my area. After the support I have had from QENDO over the past year, I wanted to give back and help others in the same situation as myself that were needing support too. I've met so many people since my diagnosis who have very similar symptoms and have the same difficulty getting their doctor to proceed further and not just give them the diagnosis of "normal" it can feel like such a battle that goes nowhere, especially if the professionals you meet have little or no experience in the condition. I'm also very fortunate in the support I get from my husband, our families, friends and my colleagues at work, which I know not everyone experiences so I am hoping that by running some events in my area that could bridge a support gap for some people that need it.
I am hoping that this year is different for me. Last year felt like an awful time, one of my worst. In learning more about my condition, I've had to retrain and remind myself about what self care looks like and how unpredictable and changing this disease can be to my everyday life. Changing my work and lifestyle choices has been so important with being able to function day to day and has assisted massively in reducing my stress levels. I'm trying out mindfulness, dietary changes, pelvic physiotherapy along with other natural therapies through my therapist and gynaecologist. I am feeling much more positive about having endometriosis, I have a better understanding of the condition. I have fantastic support and with the help of QENDO, I can assist in raising more awareness and funds, in the hope that one day there could be quicker diagnosis times and perhaps even a cure!
Hayley Mills (Smiff) x
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