Josie's Story

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.