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Since starting my period at the age of 12, I was under the impression that some people just had worse periods than others and that I was one of the unlucky ones. I would constantly hear the phrase 'just power through.'

After having doctors appointments about the excruciating pain I was having, I was told to go on a contraceptive pill. When this didn't work for me, the next solution was to change to the next contraceptive pill and so on. This was the only option I was given for 10+ years. At this point, I had never heard of the word endometriosis so accepted that I would always just have to ‘power through’.

It wasn't until having an unbearably uncomfortable smear test that the doctor advised the level of pain I was feeling was not 'normal'. I was referred to have a scan to investigate the possible cause of my pain.This was a real turning point for me. During the scan at the hospital the doctor advised me that they suspected endometriosis and referred me for laparoscopy surgery, to investigate if this suspicion was correct. I finally felt like I was getting closer to having answers after hearing about endometriosis and the symptoms for the first time.

In December 2020, I had my laparoscopy where they found and removed endometriosis. I was relieved yet frustrated I hadn't been diagnosed earlier, I wish there had been more awareness at the time my symptoms began.

I really hope that in future the time taken from having symptoms to getting a diagnosis is a quicker process. Being diagnosed has helped me understand what my body has been going through and given me peace of mind that it’s not all in my head - I was right in thinking I shouldn't have been feeling like this and there was something wrong.

Being diagnosed has led me to endometriosis forums where I can talk openly about living with endometriosis to others who understand, and it's been extremely helpful having that support system.

I was diagnosed with endometriosis fifteen years ago after three years of symptoms.

I’ve since had several laparoscopic surgeries, varied hormone treatments, artificially induced medical menopause and the insertion of the mirena coil. 

I signed the NHS trust that I currently work for up as an Endometriosis Friendly Employer in 2022 to spread awareness and provide insight into the condition. I found through my own experience that although very common, it can still be relatively unheard of, so educating those medical and non-medical staff in my own workplace was my priority. I am also very aware of the challenges and often strain this can cause both inside and outside of the working environment.

I have been amazed at the number of staff who have contacted me since starting the scheme and those who have joined the safe and supportive group I have created for employees to meet and discuss their condition and experience of living with endometriosis. 

There are now a range of helpful documents available across my workplace, published by Endometriosis UK, in best managing and supporting employees with the condition and promoting supportive first discussions between employees and management. 

I am lucky to have always been supported throughout my condition by my own work management so understand the importance and ease of this for others too. 

I am extremely passionate about women’s health and my mission is to empower others to live a confident, mindful and healthy lifestyle both at home and in the work environment and hope the support and inspiration I provide through my own experience and the scheme can do just that. 

 

We want everyone with endometriosis to feel confident and supported at work, which is why we are so proud to have developed the Endometriosis Friendly Employer Scheme.

The Scheme is a way for employers to confirm their commitment to developing a work environment and culture that enables employees with endometriosis to thrive at work. Find out more here.

It’s 2019 and I’ve secured my dream job after redundancy and feel on top of the world, only to later discover that it wasn’t meant to be. Fast forward two years and I found myself in the position of poor health and unemployment.

Summer 2020 changed my life as I knew it, I was experiencing excruciating pelvic pain, and was getting no support from my GP. I tried all the medication they would throw at me, hoping somehow it would make a difference. I had always experienced painful periods but this was next level.

My poor health was impacting my job, having regularly long periods of time off work. This was disruptive to not only my employer but also to my financial state and mental well-being.

I was getting nowhere with my GP and so, in Spring 2022 I paid for a private consultation with an endometriosis specialist after a nurse mentioned the condition to me during one of my many visits for tests. I didn’t know what to expect but the specialist read my notes and agreed exploratory surgery was the best option.

Prior to surgery I found myself off work (Again!) and was in a bad way. I could hardly move I was in that much pain and was pleading with the GP for stronger painkillers. Between March and my surgery in May I tried everything I could, nothing took the pain away. I was bed-ridden most days and I had no quality of life.

My surgery day came and I was glad to get some answers. I received my diagnosis of endometriosis and finally felt like I had an explanation for the worst two years of my health to date. However, I found little relief post-surgery and was still off sick from work.

The financial stress is something you can’t comprehend until you are in the thick of it, you don’t plan to be sick. Yet, here I was running out of statutory sick pay and heading towards signing on for benefits. I was suddenly reliant on my partners income, and we struggled to make ends meet. I’m the type of person who likes their finances in order but having to call multiple companies to make payment plans, choosing between fueling your car for some freedom from your own front room or eating the food you want certainly changes your gratitude for the small things in life.

After 7 months off sick, I recognised the need to decide what’s best for me with health in mind. Sadly, I left the job of my dreams in pursuit of something more manageable for my over all well-being.

In January 2023, I started a new job in youth work. If it wasn’t for Endometriosis UK last year would have been more of a struggle than it already was. Through my local support group, I have met some incredibly wonderful, strong, determined people who made me realise that all is not lost. I owe a lot to the group and the group leader Vicky for their support over the past year. While I still navigate the stormy seas of this condition, I am much more optimistic about whatever happens next as I am not doing it alone.

I’m Hannah and I’m a singer, music producer and sound engineer living in London. I go by the artist name, Piripa.  And for years now, I’ve lived with endometriosis – I was officially diagnosed after having a laparoscopy in February 2023 after 8 years of searching for answers.

Sadly, like so many living with endometriosis, my journey towards diagnosis has been far from easy. I have suffered with symptoms from the age of 15. As the years went on, my symptoms progressed from painful periods to much more chronic, daily pain and chronic fatigue. After a good few years of going to the GP, in 2019, I saw some information online about endometriosis and suggested to my GP that I might have this. I continued to see GPs and specialists over the next few years, trying different kinds of medical treatments unfortunately with little improvement. Eventually, I was put onto a waiting list for a laparoscopy and received both diagnosis and treatment for endometriosis. 

Receiving my diagnosis gave me a sense of clarity that I was lacking before. Up until that point, the uncertainly of not having the diagnosis had been difficult. For a long time, I felt like my pain was not taken seriously and often felt that the medical professionals I saw lacked empathy and didn’t understand the severity of the impact this had on my life. Long NHS waiting times between appointments and scans often left me feeling alone and unsure of how to cope while I waited. Without the online community and the information I found through Endometriosis UK, I wouldn’t have been able to advocate for myself properly to get the treatment I needed. This is why now, I’m really keen to be a voice for those living with endometriosis, to continue to improve awareness and knowledge of the condition and continue to advocate for further research.

For me, endometriosis has changed my life. Living with chronic pain and fatigue has forced me to change my lifestyle and adapt to a way of living that works for my body. When I realised for the first time that I would probably live with this for the rest of my life, I really struggled with depression and felt a real sense of loss for the ‘able’ body that I previously had. I felt incredibly anxious that I wouldn’t be able to have the career I wanted and sometimes even wondered if I’d have to give up music and performing for good. But being a part of the endometriosis community has given me so much strength and motivates me to keep going. They’ve helped me accept my diagnosis, remind me that life still goes on with this disease and that there is hope for the future. They’ve given me the courage to keep returning to music in a way that works for me, and to write and create more music that tells my story and that recognises and celebrates my vulnerability and strength.

This is Helen's story.

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

If you need support, you are not alone. Visit our support page here.

 

Endometriosis should not be classed as benign. 

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

MEDICINE
(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. 

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