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.

Daniela's Story

My name is Daniela, I am 27 years old and I was first diagnosed with endometriosis and adenomyosis in June 2020.

I first started noticing symptoms of endometriosis in 2012. Painful urination, excruciatingly painful periods and sexual contact was extremely painful. At the time I had no knowledge about sexual health and went to my local clinic to check whether I was dealing with an STI which brought feelings of shame. This was not helped by the judgement I felt from the clinician dealing with someone of my age. With the symptoms I was dealing with I was so scared and was relieved to receive my results back as ‘all clear’ but still had no answers to what I was experiencing.

A few months went by and the pain was no better, so I decided to go the GP. Due to the nature of my symptoms I was granted a smear test. Unfortunately, my results showed abnormalities and I had to do another smear to ensure everything was okay. I received the all-clear for HPV upon another smear but still had no answers. I just convinced myself that it was normal for everyone to have this pain.

All this for a 16 year old was incredibly challenging. I’m usually very private and to have all these clinicians looking ‘down there’ made me incredibly self-conscious.

Fast forward to December 2019 I was at work and suddenly a rush of pain spread across my abdomen and I had to go straight to the hospital. I was completely distraught and frightened. I went to A&E as they suspected I could have has an ovarian cyst burst. The clinician told me ‘I would suggest you speak to your GP about endometriosis’ I was befuddled. I had never even heard of endometriosis. She was the guiding light that led to my diagnosis. I’m still so grateful to her until this day.

Following this, my GP signposted me to the Endometriosis Clinic in my local area and within 4 months I was sent the letter for a diagnostic laparoscopy. Unfortunately, the pandemic hit the week I was due surgery and everything shut down. My health anxiety was overwhelming and became insufferable during covid. I was up all night googling my symptoms and even reaching out to the Samaritans as my fear had dominated my whole existence.

In June 2020 I was diagnosed with endometriosis and adenomyosis and I felt validated knowing that my symptoms were not ‘all in my head’. My left ovary was fused to the side of my womb and my fallopian tubes were covered with endometriosis. My consultant and I came up with a plan for management.

For 6-8 months things were better after surgery but then the symptoms came back worse. Over the course of 3 years, we experimented with different hormone treatments. After a multitude of attempts at hormone treatments, I had to really beg and advocate for a second surgery and I’m glad I did. I had my second surgery in September 2023.

Endometriosis UK have really informed me about endometriosis and I was signposted by one of my clinicians. I found the information so easy to read and really prepared me with those questions to equip me for appointments as it’s quite intimidating having to advocate for yourself.

To all fighting endometriosis: Your struggles are valid, and you're not alone. Keep advocating for yourself, use a symptom diary and seek second opinions if needed. You deserve understanding and relief. 

Daniela’s story highlights the urgent need for faster diagnosis and improved understanding of endometriosis.

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

 

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