A mothers experience - My Daughter has Endometriosis

Our Board Member Teresa - spoke at our World Menstrual Health Day event to share her daughters journey with Endometriosis.

My name is Teresa and I am the Mother of four children and a holistic therapist who has spent over 13 years working with the body, studying anatomy, understanding systems and supporting women through stress, hormonal fluctuations and skin health.

I thought I understood women’s bodies quite well, but I learned something very different when it came to my daughter’s experience.

In my thirties I read a book called Code Red by Lisa Lister. It introduced me to the idea that the menstrual cycle isn’t just something that happens to us but is something we can understand, work with, and respect.

That stayed with me. And I made a promise to myself that I would teach my daughters about their bodies and raise my sons to respect them.

When my eldest daughter Ciara started her period in 2021 it felt like a milestone. It was during lockdown so we couldn’t celebrate in a big way. Instead we sat on Newcastle promenade with chips and I was so proud of her and who she was becoming.

At that point I had no concerns. I expected things to be normal. After all I had so much more knowledge to share with her than I was ever given.

But over time she began to get pain.

 Not during her period, but before it. Mainly on the right-hand side of her body around her kidney area.

Sometimes it was mild, sometimes it was strong, and it didn’t make sense.

We were constantly told it was kidney infections, she would be started on an antibiotic only to be told days later that there was no infection.

Even with my background and my knowledge I didn’t link it to her cycle.

Over time things got worse, and we ended up in hospitals more and more. Thinking  it was kidney problems or appendicitis or bowel problems… No one could give us an answer.

Watching your daughter in severe pain with no answers or solutions is much more than frustrating. Its heart breaking on another level. As a mother it was my job to take care of my daughter, to make her better. But no amount of painkillers or antibiotics was doing anything to reduce this pain.

At one point, after spending a full day in A&E, after all the usual tests, a doctor came into the cubicle and announced to us that, “There is nothing wrong with you. You have to stop this.”

As a mum hearing that when you can see your child in pain is something you don’t forget.

Her pain was being completely dismissed as being all in her head.

I know my child. I knew she was suffering. Some days she was unable to even stand up straight, she would be pure white with the pain. The days off school were becoming more and more frequent, and the reply she got from a medical professional was simply to stop it.

That one statement was like a slap in the face to both of us and I knew that to get to the bottom of this it was going to have to be up to us.  I started writing everything down, from what she ate to when the pain came, when it would disappear and what was happening around it.

Slowly a pattern appeared and it became clear that it was linked to her cycle, even even then, with all the evidence we had gathered, that connection was dismissed.

During this time her pain was getting worse. It was more severe when it came and was lasting longer.  The days missed from school became weeks missed of school. She had to leave her netball team, missed social events, couldn’t make plans with friends and even missed out on a family holiday.

At an age where life should feel fun and full she was just trying to get through each day. Never knowing when the pain was going to start again, but certain that it would. When it did star, she had no idea how severe, or how long this episode would last as it could be anything from five days to two weeks. Her whole life was reduced to episodes of severe, crippling pain that left her unable to walk or an existence of trying to catch up on school work while waiting on the next bout.

Eventually we were offered the contraceptive pill. It didn’t help her.

Then we were told the waiting list to see a gynaecologist was five years. Five years.

So we gathered what we could and made the decision to do without so that we could go private, which we know was a privilege. Even then it wasn’t easy to find someone to see her as paediatric gynaecology isn’t really a thing.

We eventually found an amazing female gynaecologist who agreed to see an under 16 and initially she was sceptical too because of her age. We jumped through all the hoops, all the scans, all the medications to rule out everything else. All the while documenting every little thing.

Eventually the doctor agreed with us that this looked like endometriosis and ordered an MRI which was refused, solely because of her age. Thankfully she fought for Ciara and eventually secured her a spot on the MRI waiting list. At that time she was one of only two girls under 18 to be approved for one to investigate endometriosis in the trust.

The MRI confirmed endometriosis and she had surgery in January.

She is not with us today as she is sitting a GCSE like a normal teenage girl. She hasn’t missed a single day of school since, though there is no doubt that her education has been massively impacted. She’s social, active, healthy and happy. The difference is huge, not only for Ciara but for our whole family.

If you take anything from this today, let it be this:

• If something doesn’t feel right in your body speak up.

• Track what’s happening.

• Educate yourself on your cycle.

• Don’t ignore pain just because someone tells you it’s normal.

• PAIN IS NOT NORMAL

For those supporting young people: listening matters. Early investigation matters.

Because the earlier we take these symptoms seriously, the less impact they have on education, confidence, and quality of life.

We shouldn’t have to fight this hard to be heard. But right now, many women and girls still do.

And the more we talk about it, share experiences and support each other the more chance we have of changing that. This is why I wanted to be involved in Changing Cycles we need to educate, empower and support each other.