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
After months of preparation, the team at Endometriosis Awareness North attended their - and Rochdale’s - very first pride event.
The Rainbow Rochdale Pride event itself has been running for a few years now, but this year they held their premiere parade.
Personal greetings
It all started with me seeing a Facebook post pop up and applying to join in, via email. We actually got to meet the organisers at the event, and they were as lovely, friendly, and welcoming in person as they had seemed in our online conversations.
This year’s gathering was held in and around Rochdale’s newly refurbished iconic Town Hall building; and it was nice to see it looking so grand and magnificent, just like the event itself.
It was largely based in the Bright Hall – a very apt name for the colourful event!
Endometriosis Awareness North also got the dress code memo, proudly sporting our iconic yellow t-shirts and taking our pride of place within our community’s rainbow.
Magical memorable moment
Post-parade, the hall was filled with rainbows, sequins, and glitter, with an infectious atmosphere full of positive energy. And I thought to myself what a magical, memorable moment. Where else can you rub shoulders with our Rochdale Mayor, our newly elected Labour MP, and the most fabulous drag artists?
On a more personal level, by attending events like this with the group, and just by being at the pride event itself, I was filled with more confidence. It really helps me try to overcome a massive amount of social anxiety that I have and being around lots of people in busy noisy environments. This is due to ill physical and mental health, keeping me pretty much prisoner in my own home for the last few years, and rarely having the courage to venture out and be social.
Working alongside the group is giving me the confidence to be able to talk to people with more ease, and to approach strangers and start conversations with them again, on the subject of endometriosis. As a result of the overwhelming anxiety I experience, going up to someone and talking to them is the hardest thing for me to do. But because of this newly acquired confidence, I actually got to speak to my newly elected MP Paul Waugh at this event. Earlier this week on behalf of the group I had already sent him an email about us, what we do as a group, and expressing how we would love him to get involved with us supporting our important cause. So, it was amazing to have this opportunity to speak to him in person and have this conversation face to face with him.
Politicians of all persuasions, need persuading!
We as a group are excited to hopefully work with him and many more MPs going forwards and positively change the way we view and deal with women’s menstrual health and endometriosis within our healthcare system.
The parade itself was also such a special moment for our team to be a part of. As one big community we all proudly marched together around the outside of the Town Hall, along to huge LGBTQ+ anthems from empowerment icons such as Kylie and Lady Gaga, blaring out as we danced and walked around.
We all then lined up outside the front of the Town Hall and created a fabulous catwalk to mark the end of the parade.
Endometriosis Awareness North strutted our stuff, whilst waving our flags; supporting an important event, ourselves, and most importantly we were there to support LGBTQ+ and raise awareness of endometriosis.
Dazzling feedback
Back at our stall inside the Bright Hall, we ended up having a positive response from all those who visited us. Whilst there, we invited several people to join our ever-growing group and encouraged them to come along to our next meeting.
Even after the event had wrapped up and the team were sat having a well-earned drink in a coffee shop chain in the town centre, a girl who worked there spotted our bright tops and came over to us and started talking to us about what we do. It coincidently turned out she is due to have her laparoscopy surgery for endo in the next few months, so we spoke to her about it, and also added her to our group.
Serious suffering
Despite the event being a lot of fun, the subject of endometriosis is sadly no laughing matter. Endometriosis effects 1 in ten of those who are born female; and is an extremely painful condition, which effects sufferers both physically and psychologically. As we know, living with endo can be tough enough on its own but add being trans or non-binary into the equation, and things can become a lot more challenging for that individual.
Our founder Dr Anita Sharma told me: “Endometriosis Awareness North’s mission is to make sure that all women, transsexual men, and non-binary people are treated equally. NICE guidelines on endometriosis does not differentiate the management options of gender nominations. With advocates like our patient ambassador Siobhan Kennet, we will all become empowered with knowledge about this condition."
Endometriosis Awareness North recently hosted their second walk and talk event of the year, this time in Alexandra Park, Oldham. But despite the lack of ‘summer' the grey clouds didn't damper our spirits; as a team we brought the bright yellow sunshine, by proudly sporting our group’s new t-shirts. With even the weather supporting us in the end, as we did manage to avoid the rain.
Everyone had a lovely time, and I thought the turn out for our event was a great success! It was so lovely to catch up with group members, and even lovelier to meet and greet new faces. Our walk event was also supported by an Oldham ladies group, and it was also great to see more members of the BAME community turn out for us too.
Keep it in the family
For me and my husband James, it was amazing to get to share this positive endo experience again with him, and further, getting my mother-in-law involved too- a proper family affair. It was also an honour to be asked to lead the walk alongside Dr Anita Sharma – it felt like since attending our very first endo north walk event back in March, that we had come full circle with the group.
The event consisted of us walking around the beautiful Alexandra park for a short while, and enjoying a well earned brew and chat afterwards. Even though I was helping lead the group on our walk, it was still a great opportunity for me to interact with a few of the people who had taken the time to show up and take part with us.
Giving them a voice
I couldn't tell them enough how having the courage to turn up at my first event was the best thing I could have done, and being a part of this group is positively changing my life. Also encouraging them to follow us online, to help get involved in what we do, and spread the word about us, too.
In particular after hearing how one lady had read about my own experience and that that had encouraged her to come along today, was very heart-warming and humbling to hear. Further hearing about her journey being post endo op herself; us just having a moment to share our experiences and similarities was something very special. It is exactly why we are a group do the work we do, and the reason we hold these events. We are passionate about raising awareness for endometriosis as a condition and it's effects, but more importantly we are here to let the one in 10 sufferers and their families know that they are NOT alone!
Why have regulations been put on ICE?
Dr Anita Sharma, our founder told me: “The NICE Guideline on Endometriosis were published in 2017 but haven’t been implemented. I have been involved with various NICE guidelines and QS. Why is there a delay?
“Implementing these guidelines and the associated NICE Quality Standards on Endometriosis would be a positive step in improving diagnosis and early treatment.
“Listening to the many sad experiences of endo sufferers yesterday during the walk and talk, I strongly feel that getting access to the right treatment by specialist endometriosis professionals is the right way forward. This will reduce the wasted appointments in A&E, stories I heard yesterday.
“Research into endometriosis is vital to find out more about the disease. Only through research one will find out more about what causes endometriosis, how to treat the symptoms, better ways to diagnose, the support people need, and hopefully one day find a cure. This is a much under researched area despite affecting one in 10 women.”
“Prof Kay Marshall and Team in University of Manchester is involved with Research and hopefully one day we will find a cure” says Dr Sharma.
Dr Sharma is writing a Book on Endometriosis in Primary Care designed for Primary, Secondary and Tertiary care, including pharmacists.
“We were invited to take part in a health event at Derby High School Bury, during the morning half of the school day. Representing Endometriosis Awareness North, and lead by Dr Anita Sharma founder and chair of the charity, was myself and team members Margaret Heywood and Janet Kennett. We were given a stall, dressed in iconic yellow and proudly sporting our endo banners and leaflets.
Whilst there, we had an amazing opportunity to be able to engage with the high school's students from years 7,8,9 (ages ranging from 11-14year olds) and raise some much-needed awareness about endometriosis amongst the younger generation.
Daunting Derby?
Although going into the school in this particular format was a new experience for our group, the team at the Derby High school were extremely welcoming and collectively we had a productive and brilliant day.
We thoroughly enjoyed our time chatting to students and faculty members alike, handing out leaflets and enthusiastically educating/ raising awareness of endometriosis.
We left the Derby High school full of so many positives, one of them being that we got to speak to and reach out to so many younger people - and from both genders which was extremely important for us.
Grown up attitude
Occasionally we received a few giggles, but it was also pleasantly surprising that the majority of the students from both genders seemed really positively engaged with us. They showed a genuine, mature interest and were equally responsive about female menstrual health and what we had to say. This was incredible and filled us with so much optimism and hope for the future.
It wasn't surprising however (like adults) that the majority of the students we spoke to this morning, had never heard the word endometriosis, and had no idea what it meant; which made our presence at the event even more important.
A technique we used as a group was to ask students how they would pronounce the word ‘endometriosis’ to initially get them involved. We also thought by the school providing students with interactive worksheets for them to fill out during their time at the event was a great idea. And by getting so many of them to even just write the word ‘endometriosis’ down along with a little about what we do, was a massive win for us; because even if we have just helped one person from the event, we feel like our work is done and going there was worthwhile.
The work we do at Endometriosis Awareness North is to improve the poor state of women’s menstrual health. We fight and raise awareness to hopefully make things easier and quicker when it comes to the diagnosis of this condition especially for the next generation; so, they can have a much better experience of endo than I, and a lot of the other 1 in 10s currently have.
Telling my story to Derby
As a group member and a sufferer of this condition, getting the chance to share my story as a 32-year-old with people that are half my age (and younger) was also so amazing! I couldn't say the word period enough today. Asking them if they spoke about periods, and sharing my own experiences at high school, acknowledging I also used to be embarrassed to even say the word out loud too at their age.
In terms of my own high school experience there was quite a lot of negative stigma around period talk, particularly period blood - which was seen as “gross”. That proceeded to run into my adult life, and affected my attitude and made me more reluctant to even talk about the topic itself. I regret this so much and wish I’d have had the courage and confidence to speak about the state of my own periods a lot sooner; because unfortunately at the age of 31 this led me to having to undergo an operation and finding stage 3 endometriosis.
As a group we are passionate about wanting to get people (of all ages) talking more freely about periods, to try and hopefully avoid situations similar to my own. We repeatedly explained and emphasised to them today that by encouraging both the boys and the girls to talk more openly about periods amongst themselves, we were trying to stamp out this embarrassing taboo.
More importantly by talking about our periods more openly, we can learn from other females what's “normal”, and maybe even pick up a lot sooner if something isn't right. I was however pleasantly surprised on a few occasions by a small number of female students, when I asked them, they replied that they actually already spoke about periods- I really thought this was amazing.
Let’s hear it for the boy
I was again pleasantly surprised by the positive response and reactions from the large number of male students who visited our stall. One male student in particular stood out when he had said to me in regard to the disease only affecting females, that it wouldn't affect him. I replied “like my husband, men cannot directly suffer from the condition, but indirectly it does have a huge affect on both our lives”. We also tried to emphasise that having endo doesn’t just affect the sufferer, but also those close to them/around them.
Despite the atmosphere being quite energetic at times, we thought it was so brilliant and a massive achievement towards our awareness raising mission to get so many of these young people saying the word endometriosis, learning and even asking questions about it.
High mark
We cannot express how grateful we are for this invitation from the Derby High School today. As a group we had a really pleasant first experience of attending the high school; and going forward we also hope we can carry on working with them, after we feel that we have left making a positive impact there today.
“Our mission is to raise awareness and empower girls to talk about periods” says Dr Anita Sharma. “Having regular sessions aiming to ultimately hold more specific talks for students of all ages and genders to understand the importance of menstrual and endometriosis health is the only way forward for earlier diagnosis”.
As Team Endometriosis Awareness North, we hope we have more opportunities to attend similar events like this one at more schools across Greater Manchester going forward.
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.”
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