• Read more about Endometriosis Action Month 2025: A message from our Chair of Trustees

Edinburgh-West Support Group Leader Johanne shares her story.

My first experience with endometriosis started at the age of 12, 27 years before getting diagnosed.

I knew about endometriosis from a young age as my Mum suffered with the condition. When I started my periods and my monthly cycle wasn't right, my Mum took me straight to the doctors. I was told 'I was one of the unlucky ones', 'It's just a bad period', 'you will just have to get on with it'. I was made to feel it was all in my head and I was just being over dramatic.

The pain was unbelievable and it affected my schooling. I had days off of school due to pain, feeling sick etc. I had to come home on breaks to change my clothes. I later had to take time off work with the pain I was in and at times I had to miss out going out with friends. This was hard because while some friends understood, others didn’t. It was having a big impact on my life. I was still not being listened to, I felt so alone and did not understand why no one was taking me seriously.

By the year 2022, I’d had to give up my career as a hairdresser due to the symptoms I was experiencing. I was eventually given another treatment to try but this was not helping and the pain was getting worse. I had continuous trips to the doctors. I was told my pain I was experiencing was anxiety and again made to feel it was all in my head. I felt so hurt that not one medical professional believed me. So the warrior in me decided to take the matter in my own hands. I thought well if you don't believe me I'm going to make sure someone does.

In May 2023, I could hardly stand with the pain, let alone walk. I got given a telephone appointment with the doctor who prescribed strong pain relief. That evening, I phone NHS24 and was given an out of hours appointment where I was then sent through to A&E and taken straight up to gynaecology. I was extremely emotional as you can imagine. I said “no one believes me, all I would like is for someone to help me”. For the first time in my 27 year journey, the doctor and nurse looking after me said “Johanne, we do believe you and we are going to help you”. I finally felt I was not going insane and what I had been experiencing for years was not normal.

My surgery to diagnose was very difficult. They found stage 4 endometriosis and my organs had fused together. My right ovary and fallopian tube had to be removed along with endometriosis around my bowel. It was a very complicated emergency surgery and I am so lucky to have gotten through it, I will forever be grateful for what the surgical team did for me and they all have a special place in my heart for that.

Through my experience I wanted to give something back and during my recovery I came across Endometriosis UK. I attended a volunteer training day in Edinburgh November 2023 and I’m so glad I did. It was extremely empowering to be in a room of others going through the same condition as myself. I didn't feel alone, I felt emotional, I felt supported, and I definitely felt I had found my tribe. I started up the Edinburgh-West Support Group in March 2024. It is held once a month where those with endometriosis in the local area can come along and share their story, or just come along and listen. It’s a safe space where they are supported and most importantly, they know they are not alone. You know your body better than anyone and if something doesn't feel right, keep advocating for yourself and never give up.

This is Caitlin's Story.

I first started experiencing symptoms of endometriosis when I was 16. My periods were excruciating, pain so intense it stopped me from going to school, socialising, or doing anything remotely normal. But every time I spoke about it, I was dismissed. Doctors told me it was “just period pain” and something I’d grow out of. Deep down, I knew something was wrong, but no one seemed to take me seriously.

I started seeking medical help at 16, hoping for answers. But it took six years before I was finally diagnosed. That’s six years of being ignored, six years of pain controlling my life, six years of being passed from doctor to doctor with no real investigation. I didn’t even get my first ultrasound for this pain until I was 21 years old and by then, the damage had already been done.

Being a Black woman made the journey even harder. The racial disparities in healthcare are real, and I had to fight to be heard at every single appointment. I had to learn how to advocate for myself, push for tests, ask the right questions, and refuse to be dismissed. It’s exhausting, but it’s the reality for so many Black women in the healthcare system.

I describe my daily life as Russian roulette—it’s completely unpredictable. Some days, I can push through and get things done. Other days, the pain is so unbearable that even getting out of bed feels impossible. I never know how I’m going to feel, which makes planning anything incredibly difficult.

Not having a diagnosis for so long forced me to leave university and put a pause on my education. The pain was too much to manage alongside my studies, and without knowing what was wrong, I felt like I was constantly falling behind. Now that I have answers, I’m back to pursuing my career, but I’m still figuring out how to balance my studies with this new level of pain. It’s a learning process every day.

I’ve started looking into freezing my eggs to preserve my fertility and give myself a chance to have a family in the future. It’s something I never thought I’d have to consider at this age, and honestly, it’s emotionally overwhelming. The uncertainty of whether I’ll be able to conceive naturally weighs heavily on me, and the whole process is exhausting.

I’m lucky to have a very supportive family and close friends who understand what I go through. That kind of support makes a huge difference. However, when it comes to colleagues and the workplace, it’s a lot tougher. There’s always that underlying anxiety—you want to excel and prove yourself, but when you’re in constant pain, it’s so much harder. I’ve had to learn that constant communication is key in helping people understand my limitations, but it’s still a challenge.

As for how I feel about it all? Some days, I don’t even know how to process it. Having a chronic illness where the baseline of your existence is pain is overwhelming. It’s frustrating to know that this is something I have to manage for the rest of my life. But at the same time, sharing my story has been both therapeutic and empowering. It has connected me with an incredible community of women who understand exactly what I’m going through, and that sense of solidarity makes all the difference.

I discovered Endometriosis UK when I was desperately searching for resources to help me understand what was happening to my body. Their work in raising awareness and pushing for change is so important because no one should have to wait six years for a diagnosis. In 2024, I had the opportunity to volunteer with Endometriosis UK, furthering my commitment to spreading awareness and supporting those who are still fighting to be heard.

Endometriosis has impacted almost every part of my life, but I refuse to let it define me. I’m still figuring things out, still adapting, and still pushing forward—one day at a time.

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This is Beth’s Story

My experience with endometriosis I believe started in my late teens when I first became aware of symptoms such as pelvic pain and heavy and irregular periods. As the symptoms grew worse over the next few years, I decided to get help from my GP where I was diagnosed with IBS and given a different pill to ‘deal’ with my periods. For a period of 9 years I went back and forth my GP where I was always prescribed other medications to treat IBS with no other conditions being considered. My symptoms became more and more severe, I was in agony most days, started to have issues with my bladder and bowels and just felt really poorly everyday.

I remember researching things on google myself to try and get some answers because I knew I was unwell and came across endometriosis. When I mentioned this to my GP, it was dismissed straight away due to me not having heavy periods, even though I had already been put on a different pill years prior to deal with heavy bleeding. I was made to feel as though it was all in my head.

I eventually received a diagnosis of endometriosis and adenomyosis after paying to go private where I had my first laparoscopic procedure. I was diagnosed with deep infiltrating endometriosis and the inside of my body was described as being ‘in a right mess’. Despite surgery and other ongoing interventions to manage the conditions, I found this has given me very little relief.

I have and continue to suffer greatly as a result of these conditions. I currently work but am constantly relying on painkillers or having a hot water bottle strapped to my stomach at my desk most days just to function. I still try to be as active as I possibly can, however this comes with its own challenges. After any type of exercise, I bloat severely and end up in excruciating pain leaving me feeling really depressed. If I then choose not to exercise due to the fear of causing a flare up, this impacts on my mental health so I feel completely helpless on what to do for the best. I have had to miss out on numerous social events which has a lasting impact on my mental health and well-being. On particularly bad days, the pain is so severe I struggle to get about properly and will stay in bed or on the sofa pretty much all day without moving.

I hope that medical professionals will finally be able to offer some treatment to give me the freedom to enjoy my life again without the issues that endometriosis cause on a daily basis.

My friends and family are very supportive but I often feel as though people will never fully understand the impact, since the condition is hidden from the outside. I feel sometimes people may think I am being over-dramatic or to sensitive when I’m saying how much pain I’m in, or lazy when I physically don’t have the energy to get up and do anything. It can be really lonely.

My interactions with medical professionals has been inconsistent throughout my diagnosis journey. I've come across some really sympathetic and helpful professionals who have listened and reassured me that I was not completely mad and imagining this as I had been made to feel for many years.

I first came across Endometriosis UK when desperately searching for answers and feel like they have played a huge part in me being able to finally get a diagnosis. The resources, help and information they have available, has been invaluable in helping me though this and allowing me to continuing learning about this lifelong condition I have to help me try and manage it as best as I can.

I hope my story helps others people who may be in a similar position feel less alone, and encourages anyone who is still struggling for a diagnosis to really listen to your body and don’t allow yourself to be fobbed off.

• Read more about Endometriosis UK Volunteers feature in Music Video: RuthAnne - The Way I'm Wired

This is Laura’s Story.

I was diagnosed with Endometriosis and Fibroids in 2014. Until then, I thought having very heavy, painful periods was just normal. As it turns out, everything I was suffering with was not normal and was part of a disease I was not yet familiar with. I'm from Afro-Caribbean heritage as both of my parents are Jamaican. My mum and my sister have both suffered with endometriosis but had assumed that I would not inherit it, so it was never really mentioned.

When I first started having periods at a young age, they were heavy and traumatic. I had no idea how to deal with them. I wasn’t allowed to use tampons, due to my Mum's fear of Toxic Shock Syndrome. I would suddenly bleed through clothing, I was vomiting, I had severe stomach and back pain. I was miserable and embarrassed. My Mum took me to the doctor’s surgery, where my GP tried me on stronger pain relief and another medication to reduce the bleeding. When this didn't work, I was put on the pill. This allowed me to live an (almost) normal life.

Fast forward to the year 2012, I was 31 years old, my Husband and I had been married for almost 2 years and were starting to think about expanding our family. I stopped taking the pill and assumed it would be easy. I also assumed that the heavy periods I had started to experience were normal, and perhaps just part of coming off the pill. The link between infertility and gynaecology issues were not something I had considered at this point. I went to my GP several times and was put on various painkillers again. My GP said this was normal. I eventually went to see a gynaecologist at a private hospital, and a transvaginal ultrasound revealed that I had 3 small fibroids. My gynaecologist also suspected that my symptoms suggested endometriosis but said that this could only be confirmed via surgery (laparoscopy). I had my first laparoscopy and was diagnosed in 2014.

To date, I've had 11 surgeries. My most recent one was a hysterectomy. My husband and I had made the heartbreaking decision to end our fertility journey after 12 years and 4 failed rounds of IVF. My uterus was so full of endometriosis, fibroids and scar tissue. My consultant actually said it was the worst case of endometriosis he had seen.

Endometriosis has affected my career too and in June 2023, I handed my notice in at my Business Analyst job because my employer’s sickness absence policy had destroyed my mental health. I had been unwell with severe period pain on and off, and was constantly in disciplinary meetings for exceeding the number of absences allowed. I did ask for the sickness absence policy to be updated to support my condition but I was told there were “too many conditions to consider”. I believe workplaces should be more open and respectful of Women’s Health concerns. This should be reflected in their sickness policies.

I've had to explain what endometriosis is and how it affected me to so many people. This has included friends, family and colleagues. Most people think it's just a bad period. I discovered Endometriosis UK purely through research online a few years ago and now I’m sharing my story to raise awareness this Endometriosis Action Month.

To anyone reading this going through their own endometriosis journey, keep going, you’ve got this and you’re not alone.

"Like so many others, my diagnosis of endometriosis took such a long time, around seven years after I started having symptoms.

My “day job” as a full time athlete requires me to be in good health, to look after myself and be able to push myself physically and mentally, six days a week.

Having spent over 12 years as an international swimmer, I moved to paracanoe in late 2016, which coincided with the start of my symptoms.

As many other sufferers will know, on the bad days the pain is completely debilitating and I wasn’t well enough to get to training, never mind complete the sessions.  On good days, I could just about manage thanks to the medical support team we are lucky enough to work with.

I finally got my diagnosis in January 2021, just 8 months away from the Tokyo Paralympic Games, my Games as a paracanoeist.  Having been trying to find an answer to the symptoms for years, to have surgery so close to the competition was really worrying - but essential.

When I got my diagnosis I reached out to other athletes who had shared their experience and they were so kind in supporting me, sharing advice post-surgery, how to manage symptoms. Having supporters who really understood what I was going through after years of uncertainty was amazing - and I won my first Paralympic gold medal in September.

I think, like many women, getting the diagnosis gives you the power to make fully informed decisions, and that the days when I need to, I can give myself grace and be okay with not training, and not worry what my competitors may or may not be doing.

I was really keen to be that person for others who are also suffering. It was incredible how many people reached out when I put it on social media, with similar stories and how I pushed to get my diagnosis. It took a lot of persistence to get the diagnosis and I wanted to let others know, that it was worth it.

The online community is a beautiful thing, where we can come together collectively with our own experiences and use them for the greater good.

The best tool that I had in my belt before diagnosis was the fact that I tracked my menstrual cycle and it gave me this wealth of knowledge and evidence when I then went to a medical professional.

My biggest piece of advice in terms of seeking a diagnosis is to be persistent, advocate for yourself as often as you need to, and don't take no for an answer if you believe something's wrong."

Thank you Charlotte for sharing your story this Endometriosis Action Month.

• Read more about Endometriosis UK responds to the Government's response to the recommendations made by the Women and Equalities Committee's inquiry into "women’s reproductive health conditions"