Endo Diaries

This page gives those living with endometriosis – plus their families – the opportunity to share their experiences in a bid to offer others hope. We also endeavour to educate people and affect real change in the funding of research into the condition and cut waiting times for diagnosis.

The physical, psychological, logistical, and even financial impacts of endo can be explored here. 

Want to share a day in your life?

Contact petergibsonderby@gmail.com 

The term “in sickness and in health” is not just a marriage vow for us anymore; these words have taken on a whole new literal meaning since our battle and my diagnosis with endometriosis.

I was already married to my husband when I received my diagnosis last year, quite late-on in my adult life at 31. I do count myself lucky that despite now being a 32-year-old with diagnosed stage 3 endo, I was able to live my early 20s without too much life disruption or limitation from the disease. That I was able to experience meeting my husband, developing a relationship with him, and getting married - having a life before the disease took its physical toll on my body.
When James first noticed
My now husband James can still remember when we first started dating back in 2016 that I was already experiencing the uncomfortable bloating and constipation symptoms of the disease. 

But having endometriosis can affect any relationship at any stage, as we both sadly discovered over the last few years. 

Mapping out our plans properly now

Our whole way of living has completely changed, compared to before experiencing the chronic symptoms of endo; and we have both had to adjust and adapt the relationship to accommodate the condition. 

For example, together we used to make exciting plans and look forward to them as a couple; we were always out socialising enjoying food and drinks. But now it's difficult due to the chronic and persistent symptoms of bloating. Having endo means more last minute and cancelling plans instead; endo makes going out more stressful for both of us and it's taken a lot of fun out of it. 

We struggle to spend positive quality time out of house because of how restricting, debilitating and dictating the condition can be. We can’t go away on long holidays and have breaks away together because of the added anxiety of the unpredictable symptoms of endo, which only adds to the difficulty in us planning anything nice. 

We had to work on it.

Since my unemployment due to ill health, there is also the added financial pressure on my husband James to carry on working throughout all of this to support us. On top of his full-time job, he also has a demanding full-time role at home, physically and emotionally caring for me as a sufferer. Since my endo diagnosis he has also taken on more physical household chores and responsibilities.

Furthermore, not only am I experiencing psychological struggles as a sufferer, but I see indirectly the condition is also taking a mental toll on him, as he tries to juggle all of these extra responsibilities. 

Wearing-down his wellbeing

At times he often feels exhausted, but my husband tells me that he feels obligated to continue, to the point where at times he's even neglected his own mental and physical wellbeing to look after me. 

This is really difficult to write down because all my life I have been fiercely independent, and now I feel more like a burden, having to rely on him so much due to the condition and how it makes me feel. 

Prior and after my endo op, James had chosen to take an extended period of time away from work to look after me. 

Closeness closed.

Until we sat down together to write this piece, I didn't even realise how not only is it lonely for the one suffering the condition but also for the partner and loved one as well. He expressed to me that he misses my social company, not only physically but also as a comforting presence. This is because of me wanting to spend more time alone, due to the uncomfortable nature of the swollen, bloating endo belly. I also feel that uncomfortable in my own body, that the last thing I want is to be physically touched either; so, this has subsequently led to a lack of intimacy and affection within our marriage, especially in the months leading up to my op. 

As I feel that physically uncomfortable, I am often in bad moods, which causes me to act out of character and become argumentative with my husband. 

Understanding means a happy ending.

Every relationship has its ups and downs but throw in an unexpected chronic illness like endo and it does create a whole new level of pressure which not only affects the sufferer, but also those with whom they have romantic relationships with as well.”

                                                                                                           Siobhan and James Kennett

“Endo belly” is not just typical bloating experienced by many women, whilst on their period. For those battling endometriosis, it can mean chronic physical pain, mental health shame and diet and lifestyle changes. Siobhan Kennett explains what it is all about, and why she has had a bellyful of the condition.

“For me personally, endo belly is an excruciatingly painful level of discomfort caused by severe swelling and bloating, typically experienced in my lower abdomen. My stomach is not only abnormally swollen, but also visibly noticeable (even making me appear pregnant at times); rock hard to touch and it feels like all my organs are pushing on the inside of my skin and ready to burst out.

And when I have a flare-up, this happens EVERY SINGLE DAY.

It is an ongoing nightmare of severe pain that would make me dread eating food, and so I would eat as little as possible, as late in the day as I could. And I would go to bed with pain and discomfort and wake up with it all over again.

Ignorance was hard to stomach.

The invisible curse of endometriosis is always accompanied by mental health torment and misdiagnosis. And endo belly is no different. 

I was told by healthcare professionals numerous times to “change my job” because it was the changes in shifts and subsequent differences in eating patterns that were said to be the cause of my bloating and constipation. 

I started to note down everything I ate, because for a time I actually thought I had irritable bowel syndrome or a food intolerance/ allergy. I quickly ruled those conditions out! 

Endometriosis physically changes how your body can look and how you feel on the inside. Endo belly can become very isolating for the sufferer and can make the world become a very lonely place. The extreme level of pain can be overwhelmingly debilitating for the individual; making them just want to lay in bed and hide themselves away.

No reflection on the real you.

The swollen endo belly has drastically and negatively changed and affected the way I see myself and feel about my own body. 

The physical bloating/swelling of the endo belly within my lower abdomen area has exasperated existing my Body Dysmorphia Disorder (BDD). An endo belly flare-up would cause me to obsessively look in the mirror and cry and say the most horrible things about me – calling myself “fat” and “ugly,”  

Exercise offered some relief, both mentally and physically. A growing reliance on alcohol certainly did not. I even had to change my wardrobe, having to wear baggy clothes with elasticated waist bands and think about my portion sizes when I ate.

I also struggle to do the normal daily household activities around my own home. Over the last couple of years (even now after my op) I rely heavily on my husband to juggle the exhausting task of working a full-time shift and carrying out /and picking up the slack at home, doing more household chores that I now find myself physically unable to do.

A stomach for the fight

Almost a year post op at 32, I am still struggling with endo belly but thankfully and fingers crossed, I just have to be grateful that it is not as bad as it was this time last year. 

And, along with the familiar calls from Endometriosis Awareness North for quicker diagnosis and more research into treatment and cure, I am asking everyone to be a bit more understanding around the mental health of anyone facing issues around appearance and weight. 

And, be kind! 

How going to a Taylor Swift concert empowered one endometriosis sufferer

“Feminism is probably the most important movement that you could embrace, because it's just basically another word for equality”

I went to see Taylor Swift recently at one of her sold-out Eras Tour concerts at Liverpool’s Anfield Stadium, and I really wanted to write about my experience there and share the importance of it from an endo sufferer’s point of view. 

I wanted to begin by expressing my highest respect for the way I feel that she is a massive empowerment role model. This is important for me in particular because of what she has managed to achieve over the last few years within her personal and professional life, actually positively influenced me and that gave me the confidence to stand up and speak out, don’t give up, and to advocate for myself for my own health concerns, that up until that point had been ignored. 

Take it as RED. We are too often ignored

You can say that Taylor Swift gave me the confidence to challenge the GPs and other healthcare professionals myself for an eventual diagnosis of endometriosis. And that as a group we are equally as passionate and are wanting to give that same level of empowerment and confidence to other women in the awareness raising things we do. 

As well as this I am also passionate about removing the stigma attached to words such as “challenge” and “confrontation”, because I feel as a woman the stereotypical negativity that surrounds these words almost makes some women afraid and reluctant to do this; in fear of being seen as a “troublemaker”. When in fact you can do both of these things from a positive angle as well. And by raising awareness, our group aims to remove taboos that surround the subject of women's menstrual health in general by getting more people talking about it, normalising it, hoping to stamp out the social embarrassment and hopefully improve it. 

Bad blood? 

One example of a taboo that surrounds women's menstrual health that I feel particularly passionate about at the minute is the sight of personal sanitary products in public. I myself for years have felt mortified at the thought of accidently dropping a tampon or sanitary pad on the floor in public in front of other people; and speaking to other women they seem to share the same level of anxiety and embarrassment about it. 

WHY??

So, for the concert, I had taken along with me a see through small cross body bag, and amongst the personal items in there I included several sanitary pads which were clearly visible and on show in front of thousands of people the entire time. By doing this I didn’t feel self conscious, I felt empowered, and felt I was making a positive statement around menstrual health. That as women we shouldn’t have to hide the fact that periods happen; they aren’t a dirty secret, they are natural and normal and we shouldn’t be made to feel embarrassed by them. 

The story of us endo warriors 

I also wanted to share a few examples to highlight and help raise awareness, how even post-op my endo still has a massive impact of on my everyday life and impacted my time while at the concert.  

During my laparoscopy procedure the surgeon found that endo tissue had completely covered the surface of my bladder – to the extent that it was almost sandwiched to my ovaries. Post op I am still experiencing the effects / symptoms of this, as I still feel the urge and the urgency to frequently wee, and particularly every time I leave my house I am filled with the overwhelming anxiety, dread and distress about having easy access to toilet facilities. 

This effected my experience at the concert because it was such a long day/ long show I was extremely worried, and found myself constantly panicking about drinking too much water; to avoid dehydration and potentially risk making myself ill/passing out, or find myself constantly back and fourth to the toilets missing parts of the show I had been looking forward to for a year, or even risk wetting myself. 

Another example of how having endo has affected my daily life, in particularly at the concert was that it was a completely sold out show, with a stadium full of almost a 62,000 crowd. I have said it before that with my experience of endo it has made me become a lot more isolated at home, spending a lot of time by myself. This is due to both the physical symptoms and mental health effects the disease has on you as a person; it stops you from wanting, and being able to easily go out and socialise with friends and family. So by being around almost 62,000 other people it was extremely overwhelming, and at times caused me a huge amount of mental distress and anxiety while I was there. 

Diagnosis means everything has changed

Lastly, it has taken a lot of courage to write this last bit down; but I feel it is really important to raise awareness of it, and it's relation to endo, because recently I have received a preliminary diagnosis of severe OCD and I really struggled throughout the whole time at the concert because of the lack of proper hand washing facilities available after using the porta loo toilets at the event. 

Even though I carried anti bac wipes with me at the concert, about halfway through I found myself in complete state of panic and at risk breaking down emotionally into tears because I was convinced my hands weren't clean enough. To avoid a complete meltdown my husband had to literally take me off to the side to sit down, so I could calm down and compose myself and anti bac wipe my hands again. 

The OCD I now uncontrollably suffer with and my obsession with my personal hygiene, washing hands and keeping things clean; I feel are behaviours that have been exacerbated and carried over from the mental trauma I experienced post op after my surgery last year. Post op I had the overwhelming worry and anxiety about keeping things as sterile as possible, in order to keep my wounds clean and infection free because I was so terrified of the threat of contracting sepsis once I was home and ending up back in hospital again. 

And finally, I wanted to conclude by saying that even though it is physically and mentally challenging, and hard living with a chronic illness such as endo and all it's effects; by doing this and going there it has helped given me more confidence, and hope for the future and going forward that I can still live a “normal ish” life, and do these “normal” things alongside having and juggling endo as well. 

“I found my experience of having Endometriosis very negative, and isolating and it resulted in me spending more time by myself. The condition doesn’t just come with physical effects, but can create mental illness, stop you from being social and make it harder for those suffering to go out. 

But the reason I want to share my story is to reach others struggling with endo and tell them that you are not on your own.

Unemployment and isolation 

I lost my job about two years ago, and prior to that I found myself on long term sick from work; this was initially due to debilitating facial and bodily eczema. At this time I became very self conscious of my appearance, I lost my confidence, and I began to stay in the house a lot by myself- not really wanting to go out or even see anyone. 

On top of dealing with that, I also got diagnosed with endo, and had laparoscopic surgery last year to confirm its presence. It was also to remove endometriosis within my pelvic area; finding extensive stage 3 endo on my bladder, bowels, appendix, ovaries and vagina. This came after years of also experiencing medical gas-lighting from GPs, who for years insisted that the severe, painful, and deteriorating physical symptoms of endo I was suffering with, weren't real. 

Dark thoughts

I’m not ashamed to admit that life for me over the last few years has been quite hard, and at times become overwhelmingly too much both physically and mentally trying to manage my health conditions. To the point where I have actually wanted to end my own life because I just couldn’t bare to live like this anymore. 

Present day- 2024, I became involved with Endometriosis Awareness North, and I only wish I had known about them sooner. Being a part of the group not only allows me to share my experience with others, to help support and empower women in regards to their health; but also by doing this helps give me closure on my own negative experience. It provides me with a healthier, more therapeutic outlet for the anger I am left feeling; and by raising awareness with them I am turning that into something more positive. 

Bringing purpose 

By attending these awareness-raising events, the group is helping to give me an excuse to set an alarm in the morning, giving me reason to get up and leave my house- all the things I have found extremely difficult to do because of my skin and mental health over the last three years. By sharing my story at endo talks, it’s giving me the confidence back in terms of the anxieties I feel about my appearance and being around bigger groups of people.  But campaigning for endo and turning up is teaching me that people aren’t interested in what I look like there; they are only interested in what I have to say about endo. 

More importantly being part of the charity is helping rebuild my shattered self esteem; and it is giving me an amazing sense of purpose and feeling of being valued – things that I have lost over the years since becoming unemployed due to ill health.”