Real Life: Meet Endometriosis warrior and educator Jenni Moore

Suffering pain from the age of 11, Jenni Moore fought for two decades to receive an endometriosis diagnosis. Today, the 34-year-old speaker, writer and campaigner from Cambridge is doing an incredible job raising awareness of the debilitating condition

When did your endometriosis begin and what were the first signs?

I was 11 and my periods had just started. I remember being in a foetal position on the floor, unable to straighten my body and screaming because it was so painful.

Endometriosis isn’t a period disease, contrary to popular belief, but it responds to hormonal fluctuations in the body so can be worst around your period.

Jenni Moore, Picture Emma Jackson Photography
Jenni Moore, Picture Emma Jackson Photography

That must have been frightening for yourself and your family?

My Mum had endometriosis and we think adenomyosis, and had a hysterectomy when I was a toddler, so she recognised some warning signs. We did go to the GP about my pain but it was dismissed as heavy periods, and I was put on the pill aged 12 to ‘help even them out’.

Did the pill help?

The pill can dampen symptoms but it doesn’t do anything to slow or prevent the growth of endometriosis. So, although my symptoms were reduced, for the 22 years I was on the pill I was left with this disease growing rampant in my body and doing a lot of damage.

During this time, you ran your amazing business, Two Little Cats Bakery, didn’t you?

Yes, I ran that for nearly nine years and wrote baking books, flew cakes out to New York, baked cakes for Stephen Fry, Michel Roux Jr and Prince Charles. I loved it, but behind the scenes every time I had my period I was in agony, grey faced, being sick and passing out. I was bleeding through clothing, and the pain was paralysing; like stabbing, burning and barbed wire pain, all in one. It was a real struggle, then Covid came along and forced me to stop, which was heartbreaking.

You decided to come off the pill after two decades. How did that feel?

Like being hit by a truck. Every symptom I had felt during my period over the past 20 years amplified by a thousand every single day. I had nausea, migraine, pain in my hips, my back, my flanks, my legs; my hip joints got so weak they would give way so I had to start using mobility aids. It was horrific, I had no confidence and became housebound. Thankfully my husband Chris was incredible and so supportive.

You were finally diagnosed with endometriosis and adenomyosis in 2021 and had your first surgery in May 2022. Did that help?

That surgery did not reveal the true extent of the endometriosis, but it was bad enough. I had a cyst filled with blood and endometriosis cells in my ovaries, my ovaries were stuck behind my uterus and my uterus was pulled backwards and the entire pelvic cavity was riddled. And then there was adenomyosis in my uterus as well.

After the surgery, you were still in pain, but your surgeon refused to help, didn’t he?

He was very much: ‘I’ve done my job, you’re fine, perhaps your brain is telling you that you are in pain when you are not’. But there is a distinction between a surgeon that can do endo surgery and an endometriosis specialist, so I was lucky to find a specialist in Cambridge who ordered another MRI at the end of 2022.

What did that MRI reveal?

It showed there was still a lot of disease in my body, including an 8 x 5cm plaque of endometriosis wrapping itself around my ureters and choking my kidneys and deep infiltrating endometriosis throughout my pelvic cavity. There were concerns it could be on my diaphragm, potentially trying to invade my bladder and heading towards my bowel. So, it was far more extensive than the first surgeon led us to believe.

How did it feel to finally discover the source of your pain?

It was hugely validating, but also soul-destroying as I knew I was going to need even more extreme surgery. I felt so angry, not just at the first surgeon but a system which allows people who aren’t specialists to operate on our bodies. I had been gaslit by GPs for so long who had told me nothing was wrong.

Recovering in hospital post-surgery
Recovering in hospital post-surgery

You had your surgery, including a full hysterectomy for adenomyosis, in May 2023. How long has it taken to recover?

I still am recovering, 10 months on. I think that’s because these diseases do so much damage inside; they invade organs, they distort tissues and pull organs out of place. So even if you remove the physical disease, you still have to unpick every single one of those pelvic pain generators, which takes time.

How do you keep the disease at bay?

One of the main things I do is pelvic floor physiotherapy to relax the muscles which have become hyper tense from reacting to the pain. You can also avoid certain foods which trigger inflammation and stretch to help lengthen muscles and prevent painful adhesions forming.

Has the surgery helped to alleviate the pain?

The heavy bowling ball adenomyosis pain has gone, so that was a relief. But I still haven’t had a pain-free day and I don’t know whether that’s because so much damage was done or it’s possible that it’s already back and recurring. I can do more than I could pre-surgery but I still get days when I need to lie on the sofa to alleviate the pain with a hot water bottle so scorching hot that it almost burns my skin.

You’ve done an amazing job at raising awareness, especially via your Instagram page @jen.dometriosis. Tell us about that?

I launched it before my first surgery because I was feeling really alone, and initially it felt a bit like shouting into the void. But then I did a photoshoot with FlashKate Bridal Makeup that really captured peoples’ imaginations. I was tired of people saying ‘you don’t look sick’ as if that made it better so I spoke to Kate about applying makeup to my body to show what my endometriosis feels like, but on the outside. I posted it on Halloween 2022 as it felt like the scariest thing I was dealing with at that moment.

Jenni's picture which went viral on Instagram, showing how endometriosis feels, but on the outside
Jenni's picture which went viral on Instagram, showing how endometriosis feels, but on the outside

The post went viral, didn’t it?

It was shared with millions of followers around the world and I got thousands of messages for months from people saying they finally felt seen. People took the picture to the GP to get treatment or showed it to parents to get support. I decided I wanted to do something to help the people in my inbox telling me they didn’t have a voice.

How did you help?

I created posts that were educational, empathetic and allowed people to describe their own experiences. It took off from there and as well as being my passion, it’s become my career, which I never expected. So, I do talks and workshops at corporate headquarters and for pharmaceutical companies, which is so fulfilling.

What’s next for @jen.dometriosis?

I want to help people with endometriosis and adenomyosis feel heard through my social media work and in tandem help bring about systemic institutional change for future generations. I’m working on Endo Education, a project to educate future clinicians in endometriosis, alongside the Everyday Endo project, which is a documentation of women’s experiences of medical gaslighting, medical misogyny and dismissal.

Beautiful Jenni
Beautiful Jenni

What are your hopes for the future?

I hope to see positive change from the organisations, institutions, government departments and national charities that are meant to represent us. And on a personal level, I hope to live a life where pain – or the anxiety of pain - does not rule every single waking moment. Chris’s life has been put on hold too, so I want to resume our life and be able to fulfil our dreams together.

Find out more about Jenni at and follow @jen.dometriosis

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