Here, Sarah shares her story as part of our “Just a Period” campaign.

My journey began when I was at school. I would always wear a pad and a tampon at the same time because I was so scared about bleeding through my skirt and would live in black trousers/jeans the rest of the time.

I went to the doctors about my heavy periods early on in my journey, and I was prescribed the combined contraceptive pill, which I continued to take until my early 20s. Once I came off this, my periods were heavy again.

Whilst sleeping, I’d regularly bleed through my sheets to the mattress. I was scared when I stayed at my boyfriend's in case I bled through the sheets there too. I dreaded staying at hotels and I would take my own towel to have sex on in case of any bleeding. I found relationships difficult, because you need someone who is emotionally intelligent with a lot of empathy and kindness.

As I was getting older, my periods got lighter, but I had spotting nearly every time I had sex. My STI tests came back negative, but I was still having excruciating pain during penetration.

In my early 30s, I developed other symptoms; I would be extremely bloated and felt like there were bowling balls in my uterus weighing me down. Intense pain would leave me bed-bound during ovulation and a few days before my period and would settle slightly during my period. I was pretty much in pain every few weeks.

My GP suspected I might have endometriosis and I was also convinced that I had it after research and speaking with friends. I went for an ultrasound and an internal examination, but the results came back clear.

I was still convinced that I had endometriosis – I had multiple baths a night to manage the pain and felt like a cat was trying to scratch out of my uterus. I visited A&E many times, despite my boyfriend at the time telling me he thought I was making it up.

Eventually, I was booked in for a laparoscopy. I was excited to have this because I thought it would mean that I would finally have a diagnosis and feel better. The surgeon left straight after the surgery, so it was up to the nurse to read the notes. She told me I didn’t have endometriosis and that I would be discharged. I was heartbroken and hysterically crying because I felt dismissed and alone, knowing the pains were going to continue.

I received a letter to say there would be no further investigation, so I went back to my GP for answers. I knew there was something wrong. My GP was amazing and went to a women's health conference where she spoke to a gynaecologist who thought it sounded like adenomyosis. He referred me for an MRI, which he told me to book for when I was going to be in pain, so that it is more likely to show up. I timed it a few days before my period.

When the MRI came back, he said my uterus was diffused throughout, making some treatment options impossible. He offered me an injection that would stop my period, but also put me into an early menopause-type state, which I didn’t like the sound of so I decided to try the Mirena coil.

After the coil was inserted, it took around eight months to fully settle until I felt normal. I really wanted to take it out but my advice for all women is that if you can persist, it’s worth it for the longer-term gain as they last around 5 years.

I am now on my second Mirena coil, and I don’t get periods but have the odd ovulation pain. I carry pain relief in my purse so I can take it when I get a ‘stabby’ feeling – I call these my ‘womb attacks’. I haven’t had a ‘womb attack’ in a while, but I now know that prosecco, stress and poached eggs cause me to flare up. I look like a fancy pants because I’ll only drink champagne instead of prosecco at gatherings and events!

After my diagnosis, I tried to find support groups and information on adenomyosis but couldn’t find any information on the condition. I felt so alone but I thought ‘I can't be the only woman that this is happening to’, so I set up an Instagram account to connect with others.

Therapy was useful for firstly coming to terms with my diagnosis and then coming to terms with potential struggles with becoming pregnant as miscarriages are more likely with the condition.

Now, I try to talk openly. For anyone else going through it, I’d encourage them to find support groups and lean on your friendships.

I also think it’s important to trust when there is something wrong with your body. Don't doubt yourself, you know your body more than anyone.

Women are so resilient to pain and we try to not make a fuss but this needs to change. Recently, I have refused to leave doctors surgeries until I got copies of my referral letters. You have to be persistent and fight for yourself as if I hadn’t, my diagnosis could have taken a lot longer. We need to be our biggest cheerleaders. It is hard to do because women’s health is so underfunded and we need to start feeling heard so we don’t have to hide our pain.

My hope is for younger girls to know about their bodies and understand about the different conditions like adenomyosis. It is not normal to have painful periods which leave you missing out on school, work or fun with friends!

To anyone else reading this, it’s not ‘just a painful period’ and you deserve to get help. 

If you can relate to Sarah's story, you could have a medical condition that needs treatment. Always see your doctor if you have any concerns.

Find more information and advice in our periods information hub.

If you need to access a support service, please visit our helplines and support services page.