The Hidden Struggles of Endometriosis and Intersectional Identities
- Sofia
- Jul 6, 2025
- 5 min read
My Journey as an AuDHD Non-Binary Therapist
Okay so here goes, this is my first blog and I am of course full of the usual self doubt. Is my writing good enough, will people want to hear what I have to say, am I oversharing?
However, despite all this I am going for it and discussing something very close to my heart. Endometriosis.
Endometriosis is a condition which impacts 1 in 10 people assigned female at birth. It’s when tissue, similar to that found inside the womb, grows outside the womb. Common locations of this tissue growth are around the pelvis but it is also found in the bowel, diaphragm, lungs, spine, eyes (yes the eyes) and the brain.
It is classed as a gynaecological condition however IT IS A WHOLE BODY DISEASE. It is an extremely painful condition and the list of symptoms is a hard read, I will share a few:
Painful heavy periods
Bleeding from the anal passage
Nerve pain
Pain during, and after sex
Fatigue
Nausea
Gastrointestinal issues
Fertility issues
Painful bowel movements
Painful urination
I could go on but I’ll stop now as this is not a medical blog but I feel it’s important to highlight the cost of living with this condition. I won’t go into all the medical jargon either, but I will share some links incase this resonates or you want to do some further reading:
So why am I writing about this? Well I live this life and have done since I started my period at 10 years of age. I have campaigned nationally to raise awareness around endometriosis and volunteered for several years to support others living this life. I do this because there is no cure, and the treatment and diagnosis of this condition is what I describe as barbaric. This needs to change.
It takes on average 8-9 years to be diagnosed. Why? Here are some of the reasons, these are officially researched, and personal and professional experience:
Medical gaslighting
Menstrual issues are not taken seriously. We are often dismissed as dramatic, hysterical, and troublesome individuals.
Lack of awareness
It would be understandable to assume that given the above description and the prevalence of this condition, that there would be more awareness around it. There is not. When I refer to lack of awareness I do not mean among the public, I also include doctors in this. Medical professionals have self reported as being unequipped to deal with it.
Shame & Stigma
There is still a big taboo when it comes to discussing periods. Although they are a natural part of life, many people will not come forward when experiencing issues with their period.
I will now share a point of view that I haven’t shared publicly but feel it’s time to speak up. Whilst all of the above is horrific on its own, throw in being AuDHD and non-binary and it really amplifies some of these issues.
First of all, periods are largely associated with “becoming a woman”. I remember being told this and feeling sick, not because I was having periods (although that does bring nausea) but because I was being gendered. I remember thinking I don’t want to be a woman, not because I was 10, although that did play a part, but because I didn’t feel female. Now at 40 I still feel the same. Neither female nor male but having gone through a long process of being gendered because my womb sheds a lining each month.
Next up is the sensory issues, in particular around period products! In the 90’s the selection of products was not as vast or available as it is now. I come from a deprived background and period products were expensive. I remember feeling extreme sensory overload every time I had to wear a pad. The sensation of the heavy bleeding further amplified this sensory overload. It was traumatic, and I am not using that term lightly.
Next up is the experience and processing of pain. I can’t and won’t speak for all ND individuals but my own pain process is complex. I don’t tend to feel pain until it is ramped up an 8, 9 or 10, at which point I’m on the floor and unable to really communicate what is happening. I had several trips a year to out of hours and A&E for decades.
I exhausted all medical treatment for managing the condition. I had several surgeries, and I eventually ended up having to have a final complex surgery to remove my womb, ovaries, tubes, and cervix. Whilst it has stopped the periods, the other symptoms remain, some less severe and some unchanged. However I am now faced with a new challenge. Menopause, which started whilst I was in my 30’s post hysterectomy.
Again, this is a very much thought of as a gendered and age related process. With it comes judgement and questions, some of which I will share…
“You’re too young for menopause”.
“Are you sure it’s menopause at your age?”
“Oh is that why you don’t have kids?”
This last point is a complex one and with it comes loss, grief, and a lot of ‘what if’s’. My personal choice to have children was taken away from me, something many endometriosis suffers are faced with. I found myself at the complex junction between “I don’t think I want children” as a choice and “my choice has been taken away”. I have experienced many moments of intense grief, despite not being sure, I still had a choice. The loss of choice was a loss of a part of me. It felt at times that a part of my human right had been surgically removed. There is also for the loss of self. Through years of pain and illness, I lost friends, family, relationships; I lost opportunities, promotions, I missed social events, but somewhere in there I lost me. Not only did endometriosis rob me of my organs, it robbed me of a quality of life.
However, I worked hard in my own therapeutic journey and with lifestyle adjustments and pacing myself, I am proud of my achievements today. I feel immensely privileged to have some many beautiful people around me and I’ve recently opened my own private practice. Life is good right now but I had to walk through the darkness for a long time to find the light.
I hope that by writing this it gives someone else the glimmer of light they might not have otherwise been able to see.
Sofia Here's Sofia's links - https://www.autistictherapistdirectory.com/uk-autistic-therapists/sofia
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