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Helen's Story

In today's post we share London Support Group Leader Helen’s opinion on why Endometriosis is NOT benign.

This is Helen's story.

Trigger warning: Please note this story features content relating to mental health, suicidal thoughts, and fertility. 

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Endometriosis should not be classed as benign. 

Let’s start with the definition of benign: 
The definition of benign is;

(of a disease) not harmful in effect.
"a benign condition"

Let’s tear that up!

The physical impact

Since 2011 I have had 5 general anaesthetics and surgeries to diagnose and treat endometriosis. I have had endometriosis initially removed from my pelvic wall, bladder and bowel, and during further surgeries, in addition to those repeat locations, from my cervix, uterosacral ligaments and during my 4th surgery my left ovary was discovered embedded in my pelvic wall. This fortunately was freed but suspect left me with a blocked / damaged Fallopian tube, which later presented as an issue when going for fertility testing.

My endometriosis has never shown on any NHS ultrasound or MRI, not even when my ovary was distorted and out of place. 

Throughout my endometriosis journey I have also been diagnosed with: 

PCOS - 2013
Fibroid - 2015
Adenomyosis - 2016

Benign conditions, by definition, state they do not have disease progression, nor are they classed as harmful. This is despite us knowing that if left untreated; endometriosis may in fact progress; and it can be harmful to both physical and mental health. 

Endometriosis is not benign. 

When I was on 20+ tablets a day, in a medically induced menopause, burning myself with a hot water bottle for pain relief, unable to work or walk and at my lowest point contemplated driving my car into a wall (thank goodness my dog was in the boot and I loved him more than anything - I didn’t want to die but I wanted the pain to stop) I don’t think anyone could argue that endometriosis wasn’t harmful. It’s connects everything. 

My pelvic floor was rock solid and I had to personally invest in seeking out pelvic floor physiotherapy to ensure the best recovery from surgery, along with seeking therapy with a cognitive hypnotherapist to mentally recover from/ address my years of constant, life changing pain.

Even though since 2020 I have been mostly pain free, endometriosis was the source of two years of living with fertility issues/ facing infertility. From the delay of having my mirena coil removed (“what if the endometriosis grew back while we were trying and what if surgery was needed to get me back to where I was and is it really all worth it” thoughts) to painful fertility testing, resulting in the discovery of a blocked Fallopian tube, endometriosis has meant that even the conceiving process was impacted. Whilst I applied through the IVF system, got rejected and was lucky enough to be 4 weeks pregnant when the appeal was granted, it now impacts my birth choices. 

Due to spinal issues a c-section would be medically recommended. However, because of the impact endometriosis has on my life, the existing cobwebs of scar tissue that might result in a complex path to the womb and it’s love of scar tissue, we’ve decided that endometriosis takes priority over my spine issues, and so to attempt a natural birth first and exhaust all options before a c-section.

The control over my life is far from “not harmful in effect” - it controls literally everything!! 

The impact on mental health

To me, benign suggests that it is something that is simple to identify and remove, such as a skin tag or a mole. However the impact of living with a chronic gynaecological condition is far reaching beyond the physical. And a diagnosis process taking over 8 years on average with no resulting cure is far from simple.

The mental impact of living with endometriosis means that my confidence, self-esteem, body image, what clothes I wear, what shoes I wear, how I socialise, the ability to maintain relationships of every type, what work I can do and the entire life that I lead is impacted and changed forever. The whole scope of a person’s mental health is challenged, from the very extreme and sometimes long lasting lows, to the high / relief of the simple ability to walk around the block for the first time or getting a surgery date. 

The fear after surgery of how long you will be well for and when will it come back, such as the reluctance to plan a wedding because it is 12 months in the future and I don’t know how well I’ll be on the day.

I have experienced every aspect that I’ve described above and then some, mentally endometriosis impacts me every single day.

How is it, therefore, that endometriosis is classified as benign? It isn’t. It can have a devastating impact on all aspects of your life. Classifying endometriosis as benign is not presenting the disease in a way that is accurate, and contributes to it being misunderstood by those around you. 

I simply do not believe that a ‘benign’ condition would control a person’s life in an extreme manner like this.

Endometriosis is not benign. 

A photo of Helen smiling with her cat next to some yellow daffodils