Aisha Balesaria
World Childless Week Ambassador
Each March, millions globally observe Endometriosis Awareness Month in recognition of the estimated 176 million women and those assigned female at birth suffering from the disease.
I’ve tried writing this blog numerous times. Each time my fingers touched the keyboard, it’s been interrupted by a flare – a flare so painful, even extra-strong medication barely took the edge of it. A flare caused by stage four endometriosis.
I’ve had several flares over the past four months, three of them during my period, which is awful enough without the extra burden. On one occasion, the flare was so severe it woke me up. The relentless pain intensified, becoming worse and worse, and didn’t stop or decrease for hours. I was petrified! No matter what I did, nothing helped and yet, somehow, my brain managed to talk itself out of a panic attack.
I should have gone to Accident and Emergency, but I didn’t. “I can’t go and I won’t go”, I told myself – because years of being gas lit by doctors, alongside medical trauma has given me zero faith in medical professionals. I often worry what this disease will do to me if I don’t get the help I need and deserve in those critical moments!
Yet again, my gynae appointment back in January was cancelled, the fifth time in 12 months. Unfortunately, this isn’t uncommon for many patients on gynaecology waiting lists in the UK.
How many times have I heard, “you look well”?
From 15 years of age I expressed my concerns and shared the symptoms I displayed, hoping at least one doctor would listen. They didn’t. It was only when I was my late 20s (15 years later) and I couldn’t fall pregnant that I was finally believed by doctors.
There’s a huge misconception that how a person appears is an indicator of how well they are. I always look fine, even when I’m not, and I’ve been told many times by doctors, “you look well”, when I’m complaining about the pain I’m in! I’m accustomed to living with pain (even though I shouldn’t be), so it must come as no surprise that I can have a full blown conversation even when I’m in tremendous discomfort!
For me, pain is the worst symptom of endometriosis and in the last five months it has prevented me from sleeping, eating, doing everyday tasks, exercising, working; coaching others (a job I love) and seeing my loved ones.
This small excerpt dear readers is a very filtered version of what it’s really like living with endometriosis.
What is endometriosis?
Endometriosis is often referred to as the ‘missed disease’, because it takes an average of eight years to be diagnosed. When they say ‘missed’, what they mean is, ‘missed’ by doctors, GPs, healthcare professionals – there’s a looooongggg history of dismissing and downplaying the severity of our symptoms, often referring to them as, “just bad periods”. Contrary to popular belief, endometriosis is not a reproductive disease, it’s a full body disease that prevents many of its sufferers, like me, living normal, everyday lives.
So, what is this long word that’s started to gain more traction in the media and online? Well, according to the European Journal of Medical and Health Science, endometriosis (also referred to as endo), is a complex… gynaecological debilitating disease… characterised by an endometrial-like tissue present outside of the uterus. It is an oestrogen-dependent, highly complex chronic inflammatory process that affects primarily reproductive-aged women in the pelvic tissues.
Living with endometriosis
As for me, my endometriosis is mainly situated in my pelvic area, although my bowel hasn’t escaped its ravages. To add insult to injury, in December of 2018 I was also diagnosed with adenomyosis. It’s considered the ‘sister disease’ of endometriosis because of its similarities, with symptoms including: heavy menstrual bleeding, pelvic pain with severe cramping, bloating or fullness in the stomach, and pain or discomfort during intercourse.
Having endometriosis can significantly impact mental health and wellbeing, and according to Science Direct, left untreated, endometriosis can impact fertility (1). The disease is categorised in stages from 1 to 4, 4 being the most severe, although the stage doesn’t necessarily correlate to how much pain a person experiences. For example, a person with stage 4 (severe) endometriosis can have no pain at all, whilst a person with stage 1 may experience unbearable pain. However, the severity of the condition can add further complications and unfortunately for me, the disease was left untreated for so long that it impacted my fertility. It pushed my ovaries together, leaving endometriomas (chocolate cysts) on both ovaries and my bowel adherent to my uterus. I still have a deep endometriotic nodule situated in my bowel, and my right fallopian tube, ovary and womb are also stuck together.
Why does endometriosis go undiagnosed?
I don’t know how many times doctors, reputable organisation or medical literature has quoted the wrong definition of endometriosis, *sigh*, which suggests even people in the medical field don’t know enough about the condition.
According to As-Sanie et al, shockingly, but not surprisingly, the UK clinical guidelines for the management of endometriosis were NOT published until 2017, even though one in ten women, and those assigned female at birth suffer with the condition (the same number as diabetes).
Gender bias in healthcare has always existed, women’s pain isn’t taken seriously and research has shown that women are given less pain relief, or none at all, in comparison to men.
According to experts, endometriosis is hard to diagnose – I find this strange given how many women it affects. I displayed 14 out of 15 symptoms synonymous with the disease, yet not one doctor considered endometriosis to be the cause of the longstanding suffering I endured. Endometriosis is often missed on ultrasounds or MRI scans unless the condition is deep infiltrating. The best way to confirm its existence is via laparoscopic surgery which must be done by an excision specialist who knows about the condition and how to treat it.
In the UK, almost two thirds (58%) of women reported making multiple visits to their care provider before any investigations for endometriosis were undertaken, with average waits of 7–9 years to diagnosis, globally. The condition’s effect on quality of life is substantial, with many women experiencing chronic pain (more than two-thirds of women in the USA report missing school or work as a result), along with high levels of comorbid anxiety and depression (2).
What are the most common symptoms of endometriosis?
Symptoms for endometriosis vary but it can look like:
painful periods
pain throughout the month even when you’re not menstruating
deep pain during sex
painful bowel and bladder movements
chronic fatigue
depression and anxiety
infertility
back, leg and chest pain
rectal and vaginal bleeding
head fog (2).
Endometriosis isn’t just a bad period
Science Direct also stated that women with endometriosis statistically have significantly higher risk of preterm birth, miscarriage, placenta previa, small for gestational age infants, and caesarean delivery.
It also notes, the normal chance of getting pregnant each month for people with no endometriosis is approximately 10–20%, while people with surgically documented endometriosis have a chance of only 1–10% (3).
In addition to the above, IVF studies suggest that women with more advanced endometriosis have poor ovarian reserve, low oocyte, embryo quality, and poor implantation (4).
These statistics come as no surprise to someone like me because I know first-hand the devastation endometriosis causes. I have low ovarian reserve, and for over 10-years I went through multiple rounds of IVF to try and conceive. Sadly, each time I became pregnant none of my pregnancies went to full term, with four of them ending in miscarriage.
Things MUST change
What can we do?
We must keep shouting about it and sharing information about endometriosis within and outside our communities. While people affected by endometriosis are painfully aware of the impact the condition has on our lives, wider society live in blissful ignorance. Our work may also prompt others who are undiagnosed and suffering with similar symptoms to see a doctor.
We won’t be ignored
If your gynaecology appointment has been delayed, you can write to your local MP about the impact the waiting time is having on your health. Simultaneously, you can contact the hospital PALS team (each hospital has one) – who can investigate the delay. Fight for what you want, whether it’s surgery or further medication, you deserve to be listened to. You can also take a trusted family member of friend with you to your appointments for support.
Need further support?
- Each endometriosis specialist centre has a pain management department which you can ask to be referred to. For instance, you can seek help from a women’s physiotherapist if intercourse is painful - you do not have to suffer in silence.
- Join the endometriosis community on social media by searching the hashtags #endo #endometriosis
- Below are a list of resources and useful links about endometriosis and the support you can access.
Finally…
Sharing our own stories, and each other’s helps the entire community, and people living with endometriosis won’t think they’re alone!
Useful links:
Endometriosis UK www.endometriosis-uk.org/
The British Society for Gynaecological Endoscopy www.bsge.org.uk
Royal College of Obstetricians and Gynaecologists www.rcog.org.uk
European Society of Human Reproduction and Embryology www.eshre.eu
The World Endometriosis Society www.endometriosis.ca
Information Cited:
ScienceDirect: Endometriosis and obstetrics complications: A systemic review and meta-analysis
The Lancet: Endometriosis: Addressing the roots of slow progress
ScienceDirect: Endometriosis and its impact on fertility
Fertility and Sterility: Endometriosis and the outcome of in vitro fertilization
