This is a firsthand account submitted through SWHR’s Share Your Story portal, as part of SWHR’s Women’s Health Perspective series.
Wow, where do I start? It’s the question I ask myself as I think through how much has happened in my health care journey over the past five years.
My lipedema started four years ago after I had my contraceptive implant removed. I noticed my legs doubled in size very quickly. I had seen a general practitioner for over 10 years who gave me weight loss advice for obesity. Then my friend’s mum simply told me one day, “Don’t you have lipedema?” It turns out I wasn’t obese, I just had lipedema, which is an adipose tissue disorder linked to hormones. I told the general practitioner, who looked into it and confirmed the diagnosis.
My autism I noticed at age 35. I was starting to struggle with things. I spoke to my doctor and was referred to the right pathway and officially diagnosed as autistic at age 36.
Similarly, I also noticed my ADHD at 35. I again spoke to my doctor and was referred to the right pathway and diagnosed ADHD, and I am now supported with medication.
However, even after these diagnoses, I still had a huge list of symptoms, and I just didn’t feel right. I spoke to my general practitioner for two years about perimenopause, and I was informed I was too young.
I was diagnosed with perimenopause at age 37 after asking for a second opinion. I was given hormone replacement therapy (HRT), but I still struggle now, as it’s going to take a while to get the right dose of HRT. Being neurodivergent makes it more complicated.
I was diagnosed with chronic fatigue syndrome (CFS) at age 37, after a period of stress and burnout at work.
CFS was the only thing my general practitioner independently diagnosed me with. After bringing up all conditions today, my general practitioner has been very supportive with referrals and medication for each care pathway. He could tell how severely my life was affected in the flick of a switch.
It took time, but my general practitioner also listened to me when I consistently had to push and advocate for myself. It has been a heartbreaking two years, as my life has turned upside down and I am surprised I kept fighting and still do.
I wish there were wider guidelines on neurodiversity and perimenopause and women’s health conditions in general, so I wouldn’t have had to suffer so intensely for so long. I also believe there should be more perimenopause groups and neurodiversity support groups for women as the risk of suicide can be much higher amongst people suffering like me. Trust yourself, you know your body and mind better than anyone.