Endometriosis and Me; an Imperfect Relationship
This week's guest blog is by Aisha - Coach, and founder of mindbodyrevival_coach.
Aisha is an endometriosis, miscarriage and childfree-after-infertility advocate. It’s Endometriosis Awareness Month and Aisha shares her story of endometriosis - a debilitating, chronic illness that has impacted her fertility and quality of life.
When Aisha stopped her long infertility journey, she thought about what she really wanted from life. In 2020, she quit her job to begin coaching and creating community through Instagram.
Endometriosis and Me; an Imperfect Relationship
During my 10-year infertility struggle, undergoing fertility treatment became my priority. I put all my effort into trying to conceive, which meant my chronic illness took a backseat. When I eventually embraced my childfree-after-infertility life, the realisation that I’d been living with endometriosis finally sank in. It needed to become the focus of my attention.
For those who may not know, endometriosis is a condition where tissue, similar to the lining of the womb, grows in various locations throughout the body.
1 in 10 people assigned female at birth suffer with endometriosis. Unfortunately, there is no cure. Endometriosis is a full body disease, and common symptoms of this debilitating condition vary. Symptoms include; brain-fog, migraine, painful periods, excessive bleeding, rectal bleeding, bowel and urinary disorders, nausea and vomiting, pain during sexual activity, bloating or endo belly, chronic fatigue and infertility. It can also involve pain in the pelvis, abdomen, vagina, buttocks, shoulder, legs, not to mention the upper and lower back.
It takes 7.5 years on average to get an endometriosis diagnosis from onset of symptoms. This is an appalling statistic, which drastically needs improving. Despite having seen a number of doctors over the years, it took 15 years for my diagnosis.
I Was Told the Pain Was All in My Head
For over a decade I had been back and forth to the GP. I was told by doctors that the intense “shooting and stabbing” pain was all in my head. One physician sent me to a psychologist because she believed that the pain was psychological – this makes me chuckle now, bearing in mind the severity of the symptoms that I was displaying.
My symptoms were only taken seriously when I couldn’t fall pregnant, and it left me feeling that my reproductive wellbeing was valued above my physical health. I wonder how many more individuals will have to be labelled infertile to have their pain believed? Eventually, I was referred to a hospital that specialised in fertility. I can only describe the results of my first laparoscopy as a ‘eureka’ moment. I will never forget when I was told that endometriosis was most likely the primary cause of my infertility.
The findings were grim, the laparoscopy showed that my ovaries and bowel were adherent to my uterus. During surgery, my ovaries were freed so that they were no longer sticking together and the endometriomas (chocolate cysts) found, were drained. Unfortunately, it was only possible to partially free my bowel.
I also had a deep endometriotic nodule which was impossible to remove without having my bowel prepped first. It was the first time that I felt understood and believed. My diagnosis gave me the answers I needed, and I could finally make sense of the infertility struggle.
Studies have suggested endometriosis could be a factor for as many as half of women undergoing fertility treatment as scarring and endometriotic deposits block and distort the reproductive organs.
I read many stories on social media about the trauma endometriosis has caused - I’m certainly a victim of it. My experience with medical gaslighting, endometriosis and infertility were all layers of trauma I struggled with for a very long time.
Throughout the years I have continued to experience pain, and my symptoms had become more severe while undergoing fertility treatment. I started to notice rectal bleeding during menstruation. In 2019, my second laparoscopy confirmed my worst fear, that endometriosis had spread to other parts of my body. I had recto-vaginal endometriosis. A fellow endo warrior described it as - “pain that makes you want to give up,” there are no truer words than those. I am currently on the NHS waiting list for another laparoscopy, with the possibility of colorectal surgery in the future.
Experiencing Excruciating Pain is Not Normal
How many more stories will I have to read where a person suffering unbearable pain hasn’t been believed by doctors? Experiencing excruciating pain on a daily basis is not normal. Endometriosis has robbed me of motherhood, ruined intimacy, spoiled numerous holidays and outings, deprived me of freedom, and worst of all – the pain has left me bedbound more times than I care to mention.
Masahide Kanayama, MD and specialist in endometriosis treatment and gynaecology said: “Doctors often give incorrect medical advice about endometriosis because many ob-gyn doctors still don’t know much about the details of this challenging disease and how to effectively treat it”.
Given that doctors don’t know much, how do we expect our partners, parents, family members, friends, employees and politicians to support us?
Over the years I’ve began to accept that endo and I have an imperfect relationship. Each day is a mixture of; crazy and calm, agonising and agreeable, unreasonable and rational. *Sigh*
I no longer loathe the illness I’ve learnt to live with. I’ve even befriended endometriosis as a painful companion. What I desperately wanted back then was to be listened to and believed by medical professionals. What I want right now is for my story to evoke recognition and awareness, instead of pity or sorrow.
Medical gaslighting is a barrier faced by many endo sufferers - I’m so over it! I believe early intervention could have made all the difference to my fertility and quality of life. I will continue to speak out as an advocate for endometrioses as the knock on effect it can have on a person’s fertility, and the trauma it causes knows no bounds.
How To Work With Me
I provide 1:1 coaching and support people to work through their own thought process and come to their own solutions.
March introductory offer – my early bird prices include, £65 for a 1-hour session (usually £100) and £45 for a 45-minute session (usually £70).
I’m a qualified Coach, but my practice is based on my real-life experiences with infertility, becoming childfree-after-infertility and changing career path due to chronic illness. Plus - I’m darn good at it! Let’s connect, DM on Instagram or go to my website for a free discovery call. I’d love to work with you.
You can find Aisha on the following Instagram accounts: @mindbodyrevival_coach shares posts about infertility, miscarriage and becoming childfree-after-infertility, and her real and raw @the_endohustler page focuses on endometriosis, medical gaslighting and its impact on fertility. Find out more at www.mindbodyrevivalcoach.com