Jessica's Story
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.
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.
Mollie's Story
I first noticed symptoms of endometriosis when I had my first period. I noticed that all my friends didn’t seem to be in as much pain as I was and that their periods were much shorter than mine too. I also had extremely heavy bleeding and experienced pain using the toilet when I was on my period. I thought there was something seriously wrong with me.
I first sough medical attention when I was 14. I went on the pill to "help" my periods. This didn’t work for me however and led to me bleeding for 2 months straight. I went back to the doctor every few months or so until I was 23 years old.
For me, it took 10 years (from when my period started) to receiving a diagnosis.
My diagnosis journey was horrific, I underwent so many invasive procedures throughout my teens in an attempt to work out what was going on. They even did an operation to expand my urethra to see if this would help. I was constantly told it was normal and “every woman experiences it”. It was only when my Mum told doctors she would not leave the room until they helped me, that they really started to listen.
I begged to have an appointment with a female doctor and thank goodness it was her who did my appointment. She was the very first and only doctor to refer me.
When I was referred, they did an ultrasound and found nothing so I was referred for surgery. My diagnosis of endometriosis was confirmed through a laparoscopy/ excision surgery. Unfortunately my referral landed just as the pandemic hit so I had to wait about 2 years for surgery in the end due to back log.
I constantly had days off throughout high school and sixth form due to pain and fear of leaking etc. Due to the endo, some days I'm so exhausted and I genuinely feel bad for having to cancel on friends. It's easy for them to think I just can't be bothered, but actually I'm in agony. I get really bad brain fog as a result of the condition and I do believe this has led to a misconception that I'm "ditsy" or forgetful, but I’m not.
I'm so lucky to have the most supportive partner, but I know he sees how much pain I'm in and he doesn't know how to help. I have to plan days out, hobbies etc. around when my period will be due as I know I won’t be able to enjoy things for those 8 days of pain. I'm also scared to have children in case I have a girl and she goes through the same as me.
I first heard about Endometriosis UK through Instagram. The organisation came up on my explore page and I'm SO glad it did. I now feel "normal" and not like I’m struggling alone. I wanted to share my own experience to help others feel less alone too.
Thank you Mollie for sharing your story. 10 years for a diagnosis is far too long, but stories like Mollie's are all too common and highlight the urgent need for greater awareness and understanding of endometriosis and its symptoms.
For more information on diagnosis times in the UK and our proposed actions for reducing them, please read our report, Dismissed, ignored and belittled: The long road to endometriosis diagnosis in the UK
If you are struggling and need support, please find our support services here.