I was 14 when the pain started, to the point I couldn’t get out of bed. I thought it was normal to have pain like that, my Mum took me to the doctors only to be told “It’s just bad periods“. I suffered over the course of my teenage years and a few times I even collapsed as the pain was so intense.

In 2009, I collapsed at work from the pain and was told it was a sign of an STI - I was mortified. I went to hospital and a gynaecologist - luckily on call from another hospital - read my notes and took over my case. That day changed my life. He suspected the reason for my pain and put me forward for my first laparoscopic surgery. That revealed endometriosis.

After surgery, life was a bit more comfortable. After 5 years though, the symptoms returned and in 2014 I had my second surgery. My Husband and I had already tried for a family, but it didn’t happen for us. We ended up having IVF and had our daughter in 2015. I was told having a baby would stop pain but that was not true in my case, in fact, it came back worse than before afterwards.

In 2021, I had my third laparoscopy and later my surgeon suggested a hysterectomy, which I had in March 2023.

My experience of endometriosis has impacted my life. I’d worry about having a painful episode while out and I worry that my young daughter may have it too. Talking about endometriosis is so important and I tell all my friends to feel free to ask questions as I know how hard the journey can be.

Thank you Ria for sharing your story.

If you are struggling with endometriosis and need support, please find our support services, including helpline, web chat, support groups and 24/7 online community forum here.

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I was twelve years old when I had my first period. It was normal, lasted four days and wasn’t heavy or that painful. However, that was the last time I had a ‘normal’ period.

I had to wait another six months before I had my next period, though I was told it was normal to be irregular when you’re just starting out. The next two weeks was hell, I had not long turned thirteen but I was bed bound. It was heavy and I couldn’t walk for so much pain. The pain felt like I had been stabbed every day for two weeks.

My Mum took me to the doctors and told them that this wasn’t normal. They put me on the pill and said to come back if it didn’t get better.

It didn’t get better, it shortened my period so it lasted only a week, but it was as painful and heavy as before. It started to affect school and my mental health. I would have to pack extra tights and underwear because I’d bleed so heavily.

It was a huge back and forth, saying I was too young and that it would regulate itself.

It wasn’t until I was 18 that I was sent for my first ultrasound. There was nothing on the scan, so it was back to square one. They did refer me to the gynaecologist, and she said it was possibly PCOS. However, over my whole journey it has felt like there has been a lack of willingness to help me, that the pain is in my head, I just needed to wait. I know I am not the only one to experience this, but for the last ten years, I have felt incredibly alone. And I have had to fight tooth and nail to get my answers.

I am now 21, and am only in the early days of receiving my diagnosis of endometriosis, and it is an incredibly emotional experience. I feel vindicated, but also drained because it has taken me almost ten years to get here.

I urge everyone who has abnormal periods, don’t stop fighting until you get your answers.

Thank you Jessica for sharing your story. No one should feel dismissed due to their age, or for any other reason on their endometriosis journey. 

If you are struggling and need support, please visit our support services here.

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My symptoms started as soon as I had my first period. Debilitating pain, ovulation pains and extremely heavy periods. I was put onto the pill from the age of 16 to around 18.
To parallel this story, I came out when I was around 20 (I identify as a lesbian). I was brought up in a home where sexuality wasn’t something to be ashamed of, therefore my coming out story was a pretty straight forward one, unlike my endo story!

Fast forward to recently, as a 28-year-old woman still dreading my periods each month. Having to wear a pair of shorts under all my dresses in case of any leaks, always having to sleep on a towel. I decided enough was enough and went back to the doctors to get some answers. My family have a history of gynae issues including endometriosis so I was pretty well informed.

When discussing managing symptoms with my GP, it was suggested that my options were the pill or the coil. My Mum and Sister both have a coil so although the process of having it fitted scared me, I thought it might be a good option. However, I was told that I wouldn’t be able to get the coil on the NHS if I said it was for my periods and that I might have to ‘bend the truth’ about my sexuality. I was told that I would only get it if I said it was for contraceptive purposes. I wasn’t prepared to lie about who I was, I had already spent 10 minutes convincing him I wasn’t pregnant even though I’ve never been with a man and my long term fiancé is female!

In the end, I opted to have my coil fitted privately which cost a lot of money, but I just wasn’t prepared to lie about my sexuality. It just felt so wrong and unfair that just because I’m a gay woman I wasn’t given the option to try something that would potentially help with the symptoms I was experiencing.

Another ‘sexuality and endo’ related tale is a very recent one. Two weeks ago (at the time of writing), I had my endometriosis excision surgery - after showing up and A&E with a ruptured cyst, I was finally taken seriously!
Before surgery, I was asked to bring in a sample so they could test to see if I was pregnant. As I always have to, I explained that I was in a long-term relationship with a woman so there is NO WAY I was pregnant. They tested my urine but couldn’t get a strong enough test so they said they would have to take my bloods to prove I wasn’t pregnant. I fortunately had a great nurse who really tried to push for me to not have to have the bloods done as it was a waste of time, NHS money and also stress for me, given that I was already nervous about the surgery. Ultimately I did end up having to have my bloods taken and as a surprise to no one, I wasn’t pregnant!

I do understand that it’s a ‘just in case’ thing, but it does often make my feel like my identity is minimised and not taken seriously.

However, a perk of being in a lesbian relationship for me is that I have the most supportive and empathetic partner. She makes me all the hot water bottles and has fought my corner every step of the way.

For all other endometriosis sufferers, as tiring as it is can be to advocate for yourself, please keep pushing. I've found the Endometriosis UK forums a really useful tool to help me process my symptoms, feelings and reach out for support. I feel a lot less alone. 

No matter what barriers, keep going! 

Thank you Josie for sharing your story. No one should feel that their experience is undermined due to their sexuality. Endometriosis UK are committed to supporting and advocating for everyone affected by endometriosis, regardless of race, gender identity, class, sexual orientation, or disability. You can read our latest update on our work to support those from LGBTQIA+ communities here.

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