This is Nicole's story.

I have recently undergone surgery for suspected endometriosis in February and have finally been diagnosed after 5 years of fighting for answers. Endometriosis UK have been a big help for me before and after my surgery/ diagnosis as I follow their social media accounts which share so much information and offer support to those with endometriosis, suspected endometriosis, and people who know of someone who has been diagnosed. They really go above and beyond to spread awareness and help make endometriosis become well-known to as many people as possible.

I had been going to the doctors from about the age of 19 with pains and common symptoms of endometriosis. My main symptoms were painful periods, lower back pain & aches, painful intercourse, bloated stomach, fatigue and aches. I was constantly prescribed with antibiotics for urine infections when most of the time it never was the case. I was told I have PID (pelvic inflammatory disease) at the beginning of my journey and was given tablets again. I’ve been fighting for so long and never had the right answers as I was told I was ‘too young’ to have anything serious.

Only in 2021 did they start to take things more seriously and I was later referred to a gynaecologist. After seeing my gynaecologist, I was given some tablets to try to see if they would help with the symptoms I was having. This didn’t work. When I went back, I was told I needed a cystoscopy, which I had in 2022 and was diagnosed with Interstitial Cystitis (bladder pain syndrome) and given one course of tablets to take to help.

I then left hospital and had no follow up at all. I called back in 2023 as I was suffering more with symptoms, especially pain during intercourse, and I went back to my gynaecologist who said she will put me on the waiting list for a laparoscopy for suspected endometriosis. I then had my operation and diagnosis 3 weeks ago (at the time of writing).

My biggest implications through having endometriosis has been on my relationships, mental wellbeing, hobbies and activities, and education and work. I’m finding it so difficult to keep a relationship, which is having a huge impact on my mental health. I’m struggling to do what I love which is to dance! I compete nationally and it’s currently preventing me from going to my classes and doing dance competitions. My work life is affected also as I’m having time off work which is having a negative impact. My mental health is suffering too, I’m struggling to stay positive when I’m just going through so much pain and stress. I’m in constant worry about my future with no actual cure for endometriosis. The worry of infertility is huge and affects me every single day.

We need support, funding and I want to do whatever is required to get the help we need. I’m just a 24 year old wanting to live a standard life.

To others out there, it is important to remember that you know your own body, and not to be afraid to fight for the answers you need! Whether you’ve been diagnosed with endometriosis, have suspected endometriosis or know someone who has it, please reach out and get support if needed. It’s still fresh for me and I have found it extremely useful reaching out through Endometriosis UK.

Thank you Nicole for sharing your story.

If you are struggling with endometriosis and need support, our volunteer-led support services are here for you. Find out more here.

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This is Saffiyah's story.

I first began to notice symptoms in 2022. I immediately sought a GP appointment and an ultrasound scan, when the scan came back clear, I began to suspect endometriosis.

In March 2023, I had a severe night of pain where I was left breathless and tears. I went to the hospital for emergency care, but my concerns were dismissed.

I went through a severe depression and I told my loved ones that my pain was making me feel suicidal because I lost all of my independence, I couldn’t walk to the shops 5 minutes away by myself out of fear of falling in pain. They pitched together to help me pay for private excision surgery, which I am still paying off now. By July 2023, I had a diagnosis of endometriosis on my right fallopian tube and bladder. I will never forget the relief I felt when I heard in an anaesthesia haze that I had endometriosis.

I felt immediate relief on my bladder and that was a joy. Now I experience pain still, but I am able to do more.

I found in my personal experience as a Pakistani woman, I’ve felt I have had to over explain myself to white doctors and only felt fully believed by doctors who were women of colour, the only time this wasn’t the case was with my endometriosis specialist. Every time I go to speak to a doctor about the pain, I am afraid they won’t believe me.

I heard about Endometriosis UK through an endometriosis support group on Facebook, which were my lifeline in this whole journey. They made me feel less lonely.

I feel like some of my friendships have suffered because I can’t go out and do things like a healthy person can. But others have strengthened beyond belief, my best friends made special efforts to accommodate my illness and visit me at home to keep me company and feel less alone. They let me vent and felt my pain with me.

My partner has been amazing, he has supported me, mentally and physically in every single way from taking on cooking and most household chores, all whilst working in the NHS himself. He actively learned more about my condition and researched things for me, so I didn’t have to carry more mentally. He found activities and places that would accommodate my health. He’s supported me financially and helped me figure out how to pay for surgery in my own time. He has seen the absolute worse of me, mentally and physically. He has waited with me until 6am in the hospital all while he had to go to work the next day. He has advocated for me when I lose my words in doctors appointments.

I am lucky I have an understanding employer who cares for my health and wellbeing, and supportive team to carry my workload when I can’t carry myself.

I feel like my family relationships have suffered because I’ve been unable to travel to visit my parents often. I haven’t been able to be a good emotional support for my sister. I got bad at calling because work would drain all my energy. But they stood by me in every way. I have now been able to talk to my dad more about my period health, what endometriosis is and how it affects me. For many Pakistanis, period talk was reserved for women only and taboo, though it is no longer one in my family.

It should not be a case of ‘wait or pay’ for Saffiyah and those like her when it comes to endometriosis diagnosis and care. Reducing diagnosis times is vital to the mental and physical wellbeing of the 1 in 10 women and those assigned female at birth in the UK with endometriosis.

Read our report, ‘”Dismissed, ignored and belittled” The long road to endometriosis diagnosis in the UK’ for more information on new data on diagnosis of endometriosis in the UK and our recommendations for improving diagnosis times.

If you are struggling and need support you are not alone. The Samaritans offer 24 hour emotional support - in full confidence. If you're in distress and need someone to talk to, you can call 116 123.

I first started experiencing symptoms when I was 15 years old. My GP at the time sent me for an MRI which came back with a cyst on my left ovary, and I was told it wouldn’t be bother me or cause any issues. Then my pain started to worsen, I went back to my GP with continuous pain, being told by one GP I had to do exercises for backache, physio for restless legs etc, at this point I was taking strong painkillers. I finally put my foot down and thought at the time this is not okay for a 17 year old to be in this much pain.

My previous GP retired so I was given a new, male GP. I didn’t have high hopes because I had been brushed off, but how wrong was I. He sent me for scans, ultrasounds, internal ultrasounds and test after test, and the one thing that will always stick with me is that he said ‘I will never truly understand your pain, so all I can ever do is help you’ and that’s all he has ever done.

I had my first laparoscopy in July 2022, but was told I was ‘perfectly healthy and no issues at all’. Obviously disheartened, I went back to my GP who then referred me last year to a specialist where I had the same surgery almost exactly a year later,  I was told I had endometriosis all over my right and left abdominal wall, in between my uterus & bladder, on my sacral ligament and fallopian tube, and that my uterus ‘looks adenomyotic’ (see adenomyosis).

It was a relief to know it wasn’t all in my head but it has terrified me at what my future is going to be. I’ve had some good experiences with medical practitioners and some bad, some who have told me it’s all in my head and have been extremely rude and some who are extremely kind, caring and supportive.

Endometriosis has impacted me in so many ways of my life to be honest. Going without a diagnosis for 10+ years, I have genuinely struggled mentally, I’ve been gaslighting myself for this long into believing it wasn’t real, that it’s all in my head, even now I have the diagnosis I still do the same thing. I have to take each day as it comes, and I don’t plan too much when I’m off work because my flare ups are so irregular that they’re out of my control.

I used to work full time as a hairdresser but I only work part time now as I struggle so much to be on my feet for a long period of time. Luckily I’ve got understanding friends but sometimes it is hard to be explaining all the time why I have to go slow, why I can’t do a lot of walking etc. Of course fertility is such a big worry for myself too, and more so that I’m not getting any younger either.

I heard about Endometriosis UK before I was diagnosed, when I set up my own endo insta, I then felt I wanted to raise money for something that is extremely close to my heart.

Thank you Rebecca for sharing your story.

More than 10 years for a diagnosis is much too long. Join us in taking action and calling for much needed change this Endometriosis Action Month. Find information on how you can get involved here.

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• Read more about Westport Veterinary Clinic become first Veterinary Practice to join the Endometriosis Friendly Employer Scheme

Please note: Michelle's story contains mentions of fertility struggles.

From the time I started my periods they were extremely painful, way more painful than my mum and sister. After seeing my GP at 16, I was put on the pill and prescribed stronger painkillers and this continued all the way through my twenties - I'd see the GP, complain and be prescribed stronger meds. I was investigated for unexplained fertility at the age of 27, but again no mention of endometriosis.

During my thirties, my period pain got worse and worse and I also started to have other symptoms. I pleaded with my GP to get a gynae referral and finally, after 18 months I was seen. I had an internal ultrasound and based on this I was told I had a few small fibroids and that I should ‘get pregnant to resolve my issues’, again no mention of endometriosis.

Around a year later, I changed jobs and with my new job I had private health care. I got a referral to a gynae, in my first visit she instantly said that sounds like endometriosis, immediately booked me in for a laparoscopy which took place a few weeks later and I found out I had stage 4 endometriosis. I was 38 at this time, so it had taken me over 10+ years to be diagnosed.

My bowel was stuck to my womb, and I had multiple spots of endometriosis and adhesions. The surgeon removed what she could in that first surgery and then 6 months later I had to have a 3 hour laparotomy to remove all the endo patches as well as un-attaching my bowel. I was pain free for about a year after that, but my symptoms started to come back. I was told I needed a bowel resection and total hysterectomy and had my op three weeks ago. Luckily, they managed to remove all the endo, un-attach the bowel in all the places it was stuck, excised all remaining endo and complete the total hysterectomy without having to do the bowel resection.

Endometriosis has impacted me in so many ways, because of my symptoms (bowel and bladder), whenever I go out anywhere the first thing I do is scan for where the toilets are as I need to know where to go and quickly.

I believe my endometriosis has impacted my fertility, I've tried to fall pregnant naturally and apart from one pregnancy, which ended in miscarriage at 8 weeks, never succeeded and then after my first surgery, I was told my only option was IVF, I wouldn't be able to have a natural birth and I was at risk of further complications due to my adhesions. I then took the decision to not have children, though I feel lucky as my husband has children from previous relationships. It's impacted my relationships as sex is so painful that I have to take painkillers immediately afterwards and have bleeding, this impacts my desire to have sex as I'm so fearful of the inevitable pain.

I work in banking which is fairly intense, requiring long hours and have had to take long periods of sick leave for surgeries as well as time out for medical appointments and endo flare ups. All of this has impacted my progression as it's taken me far longer to get promoted compared to my peers, I can't say for sure it's down to my sick leave but you cant rule it out. As for my mental wellbeing, managing pain and low moods is difficult, I always feel like I'm letting someone down which also impacts my mental health.

I wanted to share my story as, like many others impacted by endometriosis I’m passionate about spreading awareness of the condition.

Thank you Michelle for sharing your story.

More than 10 years for diagnosis is far too long. Michelle’s story highlights the need for urgent action among governments and healthcare decision makers to improve pathways to care for those with endometriosis.

This Endometriosis Action Month, Endometriosis UK will be hosting events in all four of the UK Parliaments, where we will share the findings of our diagnosis report and ask politicians to pledge their support. Join us in taking action by asking your local representative to get involved today. Click here to access our easy to use template.

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