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

My name is Katy, I’m a journalist and radio presenter from Scotland and I have endometriosis. I was diagnosed with stage 4 endo after a decade of severe period pain back in 2018. The process was drawn out and painful but, like most people with the condition, I thought my symptoms were normal so took a long time to ask for help. 

My symptoms have always been agonising menstrual cramps, bloating, nausea and pain during sex. All issues I convinced myself were just part of being a woman. I did my best to ignore my pain for most of my teenage years but between my Undergrad graduation and the start of my post-graduate studies in Journalism things came to a head. I gained and rapidly lost around three stone. My body was changing beyond my control. My menstrual cramps were daily. My impulse to vomit uncontainable - I was at breaking point. I went to the doctor and was referred to gynaecology. I was terrified of what they might say about my health and my fertility but there was no way round it. 

By the time my appointment came around I was housebound. The pain was so bad I could no longer walk unaided. I had to drop out of my dream course and the issue I’d denied for almost half of my life seemed to have me beat. 

I was referred for a scan that revealed several large edometriomas, a twisted fallopian tube and that my bowel had fused to my uterus. I was seen by a specialist and had my first laparoscopy on the 4th of April 2018. Since then I’ve been menopausal, had more scans than I’d care to remember, started a podcast about women’s health and made it my mission to make sure nobody suffers in silence the way I did for all those years.

What has been your biggest challenge in living with Endometriosis?

I think one of the most challenging things about living with endometriosis is the uncertainty. This is an invisible condition that affects my life on a daily basis yet some days I feel invincible and on others I’m not sure i’ll ever make it out of bed. Getting the diagnosis was huge for me but a diagnosis alone doesn’t mean equate to a cure and recovery is not linear. I’ve worked hard to understand my body but what it needs changes constantly and people don’t always get it. That’s why the endometriosis community is so essential to living well with this disease. 

What advice would you give to someone who thinks they may have Endometriosis?

The best advice I can give is to speak up and ask for help. You don’t get a badge of honour for suffering in silence and, I promise you, your pain is valid and you deserve support. Don’t give up either. You might not be listened to the first time (or even 3rd or 4th!) but reach out to the community, consult resources from Endometriosis UK and be ready to fight for the care you deserve! 
 
Finally, thank you so much for all you do, what drives you to raise awareness of endometriosis?

I am passionate about raising awareness of this condition because I know what it feels like to be in the dark. For years, I blamed myself for my pain, I thought I was weak and dramatic and my symptoms were ‘all in my head.’ and I’m not alone. So many people living with this condition are made to feel the same way and it’s heartbreaking. The statistics speak for themselves, over 8 years on average for a diagnosis is unacceptable. I want to see that wait time shattered in my life time. 

What are your hopes for the future in terms of seeing change to the way endometriosis is viewed by society?

I hope everybody knows the word. I hope people are informed (even just a little) about this condition that affects 1 in 10 people assigned female at birth. I hope it’s a conversation at home, in schools, in politics! And I hope the people suffering have their pain taken seriously because this illness is very real. 
 
What’s the biggest change in healthcare you would like to see In terms of how Endometriosis is treated in the near future?

I would love it for everyone to have access to specialised endometriosis treatment. I’ve only recently been referred to an endometriosis centre and I still feel like I’ve won a golden ticket! This is a disease with specialist complications and every case is so different. Until every gynaecologist can perform the complex surgeries/treatments needed, every patient should be allocated an appointment with a specialist. 

What advice would you give to someone who thinks they may have Endometriosis?

If you think you might have endometriosis, it can be useful to record your symptoms and have an appointment with your GP. Endometriosis UK is a great source of information. The charity and other organisations run support groups and online events where you can hear from medical professionals and endometriosis sufferers.

Finally, thank you so much for all you do, what drives you to raise awareness of endometriosis?

I started raising awareness at the start of the pandemic because it gave me time to reflect on all I had been through. This chronic illness has dominated my life for so many years and more recently, thoracic endometriosis and infertility. I realise that through campaigning, I can encourage others to share and consider getting referred to endometriosis specialists.

What are your hopes for the future in terms of seeing change to the way endometriosis is viewed by society?

I hope that in the future, many more people will know about endometriosis and that it is taken as seriously as other diseases. I would like to see more employers recognising this debilitating condition and putting support in place for their staff. There have been so many myths about endometriosis over the years, in relation to treatment options, fertility and race. The diagnosis time needs to be cut down. GPs should be considering endometriosis when patients present symptoms and more funding is needed.

I started my period when I was 12. They were always painful and heavy. I have a distinct memory of putting a tampon in and going to a drama club and by the time I got there it was soaked through. My mum took me to the GP and I was given pain relief. Then when I was 14 I went on the pill which just ended up masking my problems.

I got on with my life but when I was older I started experiencing painful sex. I also started having issues with my bladder – I was regularly having infections and always needed the loo. I was always run down, tired or unwell with something. From the first moment I started my period to the point at which I was offered a scan was a period of 10 years. So I was 23 when I had my first internal scan and I finally saw a doctor who took the initiative to think about my situation laterally.

The scan revealed that I had a huge cyst on my ovaries which was 8cm long and the doctor said I needed a laparoscopy. I had the surgery in June 2018 and it had to be extended by hours because, to quote my doctor: I was “a mess inside”. He had a daughter my age and told me that he felt compelled to do everything he could to help me. So put all my trust in him because he was the first person to listen and take me seriously. He said I had a severe case of Endometriosis and my fallopian tubes were crushed. He removed everything he could, I continued to use pain relief and sex stopped hurting for a while.

In 2019 I met my fiancée Tristan and the pain during sex returned. I stuck it out for a while then went to see a doctor who told me that that I was fine, but I was sure something was wrong, and later I discovered that I had ruptured a cyst. I had a second laparoscopy and that’s when a discussion about fertility came up. My egg reserves were extremely low and I found out my fallopian tubes were blocked. I got medically diagnosed as infertile and told IVF would be our only hope of having children.

We planned to start IVF at the beginning of 2020 but then Covid happened and it got cancelled. That was fortuitous because I got pregnant naturally which my consultant said was a miracle. We lost her at 18 weeks and that was awful. I started talking about the miscarriage on Instagram as a way to process the pain and because so many women go through it.

Then in March 2021 we had our first round of IVF and it worked. I feel so very lucky because a lot of women go through several rounds and it doesn’t happen. I’m still scared. When you go through a miscarriage at 18 weeks It’s always at the back of your mind. But I’m also trying to stay positive and hopeful.

That’s why I’m passionate about people being diagnosed sooner. Endometriosis has to be taken seriously because it’s a full body disease. It’s not just painful and heavy periods. I wish someone looked at everything going on in my medical history and pieced it together earlier. People weren’t looking at the bigger picture. There needs to be more research and education to help.

I also think there is an inherent sexism with some doctors which has to change. I was a young girl and I think that was part of the reason why I wasn’t taken seriously. I want people to feel they are heard because you’re told too often that there’s nothing wrong so you doubt yourself, and that’s the most isolating thing. I don’t want people to have to go through what I did.

It’s taken me 30 years to get a diagnosis and I know I’m not alone in being told it’s normal or just a ‘bad period’. I want to help to bring change and raise awareness. This disease takes so much from us. As someone with multiple chronic illnesses I can say endometriosis is the one that has impacted me in every way, my relationships, my friendships, my mental health and my career aspirations.

As a child I thought all women suffered with horrible pain during their periods and that I must just be weak..that is not the case. I still remember my gynaecologist waiting for me in recovery to tell me I was not mad and that they had found endometriosis during my excision surgery in Dec 2019.

I have only felt comfortable sharing my experiences more recently due to the stigma attached to anything period related. I still remember being told that periods are dirty and we don’t discuss them!! Well here I am discussing sharing and shouting loud. More must be done and with twin daughters nearing menstrual age I will be right there campaigning for more to be done.  No one should have to wait this long for diagnosis or treatment.

I was diagnosed with endometriosis in 2007 and spent years trying to manage the pain and live a “normal” life. My mental health suffered and I didn’t feel I was in control of my body. Endometriosis has affected my bowel, lung and diaphragm, and infertility. I had to live with a colostomy for a year and more recently was diagnosed with thoracic endometriosis. I’ve spent my thirties doing IVF treatment and still hope my dreams will become a reality. 

I’m very fortunate to have supportive family and friends who I can talk to honestly about the impact of endometriosis on my life. Through this online community, I have been able to share my journey and connect with a diverse group of people. By opening up about my own experience, it has helped others to realise they are not alone.

Endometriosis is debilitating and millions of us are battling with it on a daily basis. But together we are stronger.

My name is Emma but on Instagram you will know me better as mummyspaininthearse. I first started my periods when I was 10 years old in quite a horrific way to say the least. The pain was completely debilitating and they would last for 14 days at a time only to start 14 days later. 

Many years past where I was told all of this was ‘just how some periods can be’ and then to be diagnosed with IBS just didn’t add up. I was put on numerous contraceptive pills, the coil, pain medications, prostap injections to then finally at the age of 20 have my first laparoscopy where I was diagnosed with adenomyosis (no Endometriosis found). It was only when a few months later a Endometriosis specialised surgeon operated on me a few months later that he found stage 4 Endometriosis everywhere. There began the cycle of constant surgeries, recovery, procedures, and prostap injections. Me and my husband had our miracle daughter and then after 6 surgeries the Endometriosis had become to be beyond debilitating and I would bleed even whilst on prostap. At the age of 31 I had a full hysterectomy. This took 3 surgeries in total that each took around 7-8 hours where each surgery I had my bowel damaged twice, my uretha damaged twice needing a stent for 8 weeks, a catheter, a blood transfusion and months of recovery. Nearly 5 years on I’m STILL in crippling pain and have been referred back to another surgeon.

There are times I have felt so alone and lost. This pain has a way of doing that to you, especially when it’s 3am and the rest of your family are sound asleep. When it’s there, every single day. Then I came onto Instagram... and I started speaking to you guys. You have helped me feel less alone. You have helped me feel so much stronger when I have felt my weakest, physically and mentally. There is a reason why we’re called Endosisters, because we are a sisterhood, I truly believe that. Whenever one of us needs picking up, we all reach out a gentle hand a help lift that person up. 

Being asked to become a Awareness representative is such an honour. My PASSION is to spread awareness about Endometriosis, to help others not feel alone and to help the future generation know that they are never alone.

Endometriosis just makes everything harder - being a mum, being a partner, being a friend, being a sister. For so long I thought the pain that I was feeling all through the month was normal. I went to what feels like so many doctors who I felt didn't take my pain seriously, said it was just my periods and told me to take paracetamol.

It wasn't until about 10 years after I started getting the symptoms that I was referred to the hospital and had my first surgery. Endometriosis was finally diagnosed, but a second surgery and many months of pain later, I don't feel much has changed.

There is still no real treatment apart from painkillers and surgery to get rid of endo which in my case has returned each time, there is no cure and diagnosis still takes around 8 years. I've missed days off work, nights out with friends and spent so much time in pain it's insurmountable. For years I didn't talk about my condition because I felt like no one would understand what it was like.

Thanks to Endometriosis UK, I have realised I am not alone, that what I am going through is not unusual, but also that I can live a valuable life and manage my condition.

I am so pleased to be working with Endometriosis UK to be raising awareness of this condition and the time it takes for diagnosis. I also want women like me to know that they are not alone in this.

I started my period when I was 11 years old and I thought it was normal to be doubled over in pain every month. It only took 22 years to realise that, in fact, it’s not. For me, it wasn’t just about having a period every month. It was knowing that when I was due to start, my bowels would play up. Play up to the point that I’d pass out in the bathroom, or call my husband because I was going to pass out while on the toilet! 

I would (pre-Covid), plan holidays and nights out depending on when I was ‘period-free’. I'm used to this now, and I don't see my mind-set changing soon. Not just because my handbag or suitcase would be that much bigger, but it's so I know I would be able to walk, dance, have fun without being bathroom or sofa bound, or walking around with a limp because my leg is aching (yeah, that's a thing too!). There is a myth around endometriosis. “Have a child” they say. “Your endo will go away” they say. They forget that having a child in the first place might be difficult! It’s depressing and you can feel really lonely. 

After having a couple of colonoscopies and a laparoscopy, I’ve been feeling better. However, the pain continues. Not as bad as before the operation, but it’s still there. A couple of months will pass and it’s manageable. Then I’ll have a couple of months where it’s so excruciating, I’m crawling between the sofa and the bathroom. Those days are the worst, but thankfully will only last a couple of days. During those days I will sleep upright in bed, with my legs bent towards me... that's the only comfortable position to be in.

Since taking part in Walk for Endo last year, I have been introduced to an amazing Endo-Community on social media, and have met some wonderful people. There's a sense of relief about talking to people who are going through similar issues, and it's nice to be able to share our journeys together. To support each other. So much love going out to my Endo Warriors.

I would never have talked about periods and bleeding or such like at home or with my family. Just because there is a taboo attached to it. But that has all changed because the conversation has to start somewhere. My family and in-laws having been so supportive of my journey over the past 8 months, and it's great to speak openly about this. The next generation need to know that's it's normal to talk about periods.If you’re going through something similar, please remember you are not alone. Even if at times you feel like you are.