Helen's Story

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;

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. 

Lowri's Story

Could you tell us a little about yourself and your journey with endometriosis?

I was officially diagnosed with endometriosis via laparoscopy in August 2016 following 17 years of suffering in relative silence. I was approaching my 31st birthday.

Five years and various surgical and hormonal treatments which have stopped my periods later (including two lots of chemical menopause), I had excision surgery with one of Wales’s NHS endometriosis specialists at the end of October 2021.

How has endometriosis impacted your mental health?

Before my diagnosis I was convinced that I was just rubbish at dealing with period pain and that I wasn’t as strong as my friends or family members. Being finally diagnosed came as a wave of relief – there was actually something wrong and a reason that my pain felt much worse than my friends.

Since my diagnosis, due to all the hormone treatments and chemical menopause causing me to gain weight, I am now dealing day to day with a complete lack of self confidence in my body image and what is effectively a post-menopausal feeling body at the age of 37. I try to block it out most days (working from home helps as I can just wear joggers all the time and dress for comfort rather than style!).

I also try to distract myself by focusing on how I can help others with endometriosis, hence why I volunteer and get involved in many of Endometriosis UK's fundraising challenges and events, including #WalkForEndo, where last year I walked the equivalent of the length of Wales and this year, one year on from my excision surgery, I ran Cardiff Half Marathon with my sister – not bad for someone that hadn’t jogged anywhere since 1999!

We’re campaigning for mental health support to be offered to those with endometriosis, should someone like to access it. Why do you think this is important?

Mental health support is very important, there are so many different ways that endometriosis can affect a person that it can be overwhelming. Just the offer that professional support is there if and when needed would probably give many of us living with endometriosis a boost, knowing that there is someone we can turn to if we need it. I found that setting up our support group worked wonders for local ladies to chat and vent to other people living with the disease…..no one knows endo better than another person diagnosed with it!

Everyone overcomes tough times differently, is there anything you like to do to take care of yourself on difficult days?

Not going to lie… on difficult days I turn to my good old friend chocolate (and the occasional glass of wine haha!) I am notorious for ‘ploughing on through’ pain and discomfort. I think that’s how I lasted 17 years before my diagnosis. There have been very difficult days in the past though where a good old cry, and some comforting treats helped enormously. There is no shame in a duvet day with TV on and sweet treats. We all need a little break now and then.

Thank you so much for volunteering with Endometriosis UK. What inspired you to get involved as a volunteer?

Growing up and living in mid Wales, it can feel a bit lonely, especially when faced with a long-term health condition, as we tend to fall in between the cracks living in such a rural area, so I wanted to set up the support group to try to ensure there was a safe space and a friendly face when it's needed. During covid when we changed to online meetings, I also found that people from further afield in Wales were joining in with our group too – the geography of our country makes it difficult to meet easily in person and everyone is welcome online if they need a chat.

I have volunteered with Endometriosis UK since 2019 as the Mid Wales Local Support Group Leader. In March 2020 I also started volunteering as the Campaigns and Social Media Volunteer where I run the @endoukwales Instagram and Twitter accounts. As health and education is devolved here in Wales, we use these accounts to share Wales specific campaigning updates, details of local and national events and anything else that might be of interest to the Welsh population. 

Fionnula's Story

Endometriosis has affected me both physically and mentally in many ways for many years. Leaving me at times, finding it impossible to go about my daily life. Quickly, myself and those around me began to realise my chronic and excruciating symptoms where more than just “bad periods”. After many years of a multitude of doctors’ visits, scans, tests, medications, and misdiagnosis I was finally diagnosed with what I always knew was endometriosis.⁠
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Not long ago, my first laparoscopy surgery detected I had stage 4 endometriosis. Hearing “we did find endometriosis” took years of weight and anxiety off my shoulders, in the sense that I finally had answers. However, I was completely unprepared to learn that my endometriosis had caused my bowel, uterus, and ureter to fuse together - leaving me with the diagnosis and subsequently crippling pain. In the near future, I will be having a second, larger surgery, in the attempt to separate the organs effected and remove some of the disease.⁠
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As of now, like a lot of endo warriors, I have absolutely no idea what the future holds for me in terms of my endometriosis and how it will impact me in years to come. Having endometriosis can be scary but I am so grateful to the endometriosis community, including Endometriosis UK, for guiding me for many years, even when I did not have an ‘official’ diagnosis. Those who advocate for endometriosis provided, and continue to provide me with advice, knowledge, comfort, and hope. Sometimes half the battle is being listened to but being part of such a strong community of women dealing with this horrific condition like myself every single day, makes me feel accepted, heard, and valid. ⁠
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I am beyond proud of myself, my younger self, and everyone out there who is continuing to battle endometriosis too - diagnosed or in the process - we are never alone!  ⁠

Demi's Story

It wasn’t an easy road to getting a diagnosis – even after knowing it for years. I went back and forth to the doctors, but as time progressed, so did my pain and symptoms. I had to educate myself and be my own advocate. ⁠
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I finally got my first surgery in April of 2022; it was such a bittersweet moment. I finally felt heard and seen. As days went by after my surgery, the sadness began to creep in. The realisation of “it’s going to be with me forever” and all the what ifs...⁠
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I was diagnosed with stage 3 endometriosis, it was found both inside and outside of the pelvic region. I’m currently in a position of waiting for tests from a thoracic surgeon, I am experiencing a whole new range of symptoms, so it feels like every part of me right now is suffering. I’m scared of what’s to come and I’m scared of what’s going on inside me. ⁠
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But above all I am so proud. I am proud of myself for fighting to get answers, my fifteen-year-old self is proud of how I didn’t give up, I’m proud of how I manage to still get by and I’m proud that I have become the strength that I didn’t know I carried. ⁠
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I have been welcomed into a beautiful community, the endo community is there for you on those days where you have questions, need advice, and I have genuinely gained so many new friendships. Being chronically ill is something I still struggle with, but I am grateful for what this journey has taught me, about women’s health, about myself and about so many other people. I still have a long way to go, but every now and then I stop to remind myself how far I’ve come and how I’m still smiling.

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