What was the beginning of your endometriosis journey like before you knew what was happening?

I always felt that the pain and bleeding weren’t normal. I would have this awful heavy dragging pain for days on end. I knew it wasn’t normal that the ibuprofen I’d have to religiously take didn’t help much, and how tired I felt for being so young. But I still felt dramatic, like my pain threshold must be very low, or I was just depressed and not functioning well.

It was never me, it was my body

When were you diagnosed, and what was your journey to getting diagnosed like?

I was diagnosed in early 2025. I’d had an ultrasound in 2024 which indicated that I may have endometriosis, my GP read it incorrectly and I paid for a private appointment to get on the NHS list for a laparoscopy. I feel like the only reason this even happened was because I was trying for my second child. If I wasn’t complaining of fertility issues, I think even the consultant would have tried to fob me off

What did it feel like to finally have a name for what you were experiencing?

Incredible. Validating. Like I hadn’t imagine it all – it gave me an enormous sense of hope that I may get help and guidance.

How does endometriosis show up in your body and daily life?

Fatigue. Having to think and plan ahead to make sure I have the meds I need. Ruining my appetite at times, making me weak with hunger at others.

How would you describe the pain or physical challenges of endometriosis?

Feeling tired to my bones and having to function. Being in extreme pain despite max doses of medication, heat, TENS. Curling up in the only position that brings the slightest relief. Feeling shaky and weak when the cramps start to kick in. Leaving it half an hour past the time you were due to take your next dose, and feeling it for the next two hours while your body plays catch-up. Feeling dazed because you can’t focus on anything except the pain. Crying until you can’t anymore

Do you have “good days,” and if so, what do they look like?

Sometimes. I’ll wake up and the pain will be minor, just there in the background and not screaming. I won’t need to take painkillers every few hours. My mind will be a lot calmer

I maybe get 4-5 of those days per month. I actually used to estimate more until my husband corrected me that even if I wasn’t in severe pain, I was still in some pain. It just seemed so much lighter

How has endometriosis affected your education, work, routines, or ability to make plans?

Feeling guilty I can’t make fun plans with my child in case I feel terrible during and afterwards. Going through with those plans and feeling bad I was counting down the minutes till I could lie down.

Feeling bad about cancelling on friends even though they’re so lovely and understanding and never make me feel bad.

Sitting in work feeling like I could pass out and having to act normal.

I have so many memories of things I’ve looked forward to for months (family events, concerts) ruined because my pain is so severe. I’ve been living from one painkiller to the next.

I’ve spent so many afternoons lying in bed with a heat pad, feeling sad and anxious.

Has endometriosis had an impact on your finances or access to care?

I’ve only got where I am today by paying hundreds for private appointments. And even then the standard of care has been barely acceptable, but it’s a necessary evil to get ANYWHERE

What has your experience been like with doctors, specialists, and navigating the healthcare system?

Frustrating! I find myself having to explain a lot about this disease to people who are meant to be more qualified in it and helping me. Feeling dismissed, feeling like I’m asking for too much when really I’m asking for the bare minimum and following their colleague’s suggestions. Having to navigate things myself because there is no care pathway.

I was told this week by a consultant (I had paid to see) that it’s a lifelong condition so you don’t need to be monitored. I’m struggling to imagine any other severe, lifelong, progressive disease where you are left to get on with it until… what? An organ is at risk?

Again, it’s down to amazing advice and guidance that I’m even this far. If I’d relied on my GP/the NHS I would be no further forward. Which is so maddening.

What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?

Again – any medication I’ve tried has been researched and asked for by me. No guidance or recommendations by any professionals. Just help from fellow sufferers and a lot of googling

What has it been like to live with a condition that often isn’t visible to others?

So isolating. I’m tired of explaining things and absorbing other people’s anger at things not being good in our health system. Getting diagnosed has been the biggest change in my life – I’m more confident explaining things and weirdly feel less pressure to make things seem like I’m OK when I’m not

Have there been times when you felt dismissed or not believed about what you were going through?

Not since diagnosis but constantly before. And actually since, by medical professionals quite often! I can count on one hand the amount of doctors who have really heard and understood and empathised with my story. Mostly I go in to every encounter expecting to be dismissed or told how little can be done about my problem.

What has the emotional or mental side of living with endometriosis been like for you?

Really hard. For years I felt weak and like I couldn’t cope with something that every other woman experiences. Since diagnosis I’ve had to try to come to terms with it and slowly realise the help isn’t coming because it doesn’t exist, that’s been really tough. Just the uncertainty of it all and feeling like I can’t rely on my body.

How has endometriosis affected your relationship with your body, identity, or sense of self over time?

I was a really skinny child and when puberty hit I got quite curvy. I feel like I’ve been held back with pain – I can’t commit to a daily exercise routine because even going out for a walk is out of the question when I’m really bad. I’d love to take on a fitness challenge but I’m scared I would feel so ashamed if I had to bail/didn’t make it to the finish line.

How has endometriosis affected your family relationships, friendships, or dating life?

Ironically I feel like my friendships have got easier for me since my diagnosis and me being open – maybe being able to explain things is helping people realise that I’m struggling and they are cross and sad for me (and not AT me like I guess I always feared?). My husband is incredible and has been so strong for me. Since diagnosis I’ve learned how brave he believes I am and how much he cares for me

Has endometriosis had an impact on intimacy or your sexual life?

Yes, hugely. I have no desire when I’m in pain. Even if I did have desire the pain is so all-consuming I’d struggle to relax into sex. It feels like as I’ve got older, that short window where I’m in the mood has shrunken with every cycle

If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?

We are so lucky to have a child – it took a long time to conceive and I now can’t believe it was even possible, considering the state of my pelvis. We just had failed IVF – endometriosis has caused one of my ovaries to be inaccessible, so at retrieval our already slim chances were halved. I’m sad that my daughter won’t have a sibling but we had made peace with the fact we may never have any children, so our little one feels like the biggest blessing ever.

Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?

Medical cannabis has been a revelation! Specifically a lower THC, higher CBD blend. And lots of rest, heat and reading help me tons

Do you feel supported in your journey? Who or what has helped you most?

My husband, my sisters and my best friends. They are incredible. I also feel like my mum gained new awareness and respect for me

Have you connected with others who have endometriosis, either online or in person? What has that experience been like?

I’m lucky enough to have a friend and colleague who has guided me perfectly and continues to. She said for years she believed I had it too, and she was of course right. She’s been through so much yet still helps me navigate it all

How has your relationship with endometriosis changed over time?

Before I had my lap, I still thought I surely don’t have it. After my diagnosis I felt optimistic like I would definitely get sorted. Now I’m much more realistic about my future. I guess I’m getting to be at peace.

More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?

Generally very poorly. It’s seen as ‘oh well, nothing to be done’ and pain especially gets minimised. If my pain was acute and I’d never had it before, I’d be at A&E and I’d get better treatment than I would having had a diagnosis because they see it as ‘normal’ for me

How do you feel endometriosis is represented in society or the media? What would you like to see change?

It’s gaining awareness which is good. But still more understanding is needed

What would you like more people to understand about endometriosis?

That it’s so very difficult and not just ‘bad periods’ – it can take over your life

When you think about the future, what fears, concerns, or hopes do you have?

I’m a little worried about how my endo will progress and how far I’ll have to get before it’s helped. I’m very worried my daughter will have endo. I hope that things will get easier and treatment will become the norm instead of something to fight for

Is there anything else you’d like to share?

I’ll never forget reading about a nurse talking about caring for women, saying something like ‘these women are in so much pain that they are relieved to be diagnosed with an incurable illness’ – it describes my experience perfectly