Lily's Story

I first started experiencing symptoms when I started my periods at the age of 14 and, after a couple of months, my mum took me to the GP because she was worried that what I was experiencing was not normal. However, back then, we just had to accept their answer of “painful periods are normal and you should just try the contraceptive pill”. So, I did just that and stayed on the pill for around 9 years. My periods during this time were still pretty painful and heavy but less detrimental than before.

I stopped taking the pill at 23 because I was struggling with my mental health, and that's when things became a lot worse. My periods returned to how they were before but even more painful and other horrible symptoms (vomiting, fainting, fatigue etc) and so I went to the GP again. This time, I saw a different (female) GP and it made the world of difference. After I described my symptoms she immediately asked if I had ever considered it may be endometriosis. She explained that her mum has it and everything I described sounded very familiar, so she sent a referral for ultrasounds and to see a gynaecologist. The ultrasound came back clear and the gynaecologist I saw was unfortunately very dismissive and had little knowledge of endometriosis so I was back to square one.

At this point, my symptoms were worsening by the month and in July 2023 I made the decision to pay for a private consultation with an Endometriosis Specialist (BSGE). He listened and believed me and sent me straight for a pelvic MRI scan which revealed clear signs of endometriosis and adenomyosis. Although this news was upsetting, I have never felt so relieved because I finally knew I was not imagining it or being dramatic about the pain. My wonderful Endometriosis Specialist immediately set out a plan for my excision surgery on the NHS which, I unfortunately had to wait a long time for due to wait lists.

Finally, I had my surgery in June 2024 where they found widespread endometriosis all throughout my pelvis as well as on my bowel and diaphragm along with adenomyosis as suspected from my MRI. I will never forget being wheeled out of recovery, seeing my Mum for the first time and saying “they found it” and watching her burst into tears of relief after watching me suffering for 11 years. 

I was surprised endometriosis was found on my diaphragm until the surgeon asked if I'd had any indicative symptoms to which I responded that I have chest pains and shortness of breath on my period and ovulation but was told that is normal. She laughed with concern and said no, this is definitely not normal. I've never felt relief and validation to the extent I did on the day of my surgery because I finally had answers to my pain and knew I wasn't imagining it all these years. 

Despite my current GP being extremely supportive and knowledgeable, and my specialist being so wonderful; I have had more than my fair share of negative experiences with medical practitioners when it comes to endometriosis. This is one of the many reasons I feel so strongly about raising awareness, ending the stigma and advocating for more education and research on endometriosis. I don't want future generations to go through what I have and we can change that with more funding and support.

I heard about Endometriosis UK when my GP first suspected that I may have it and she advised that I take a look at the website because there are some great resources on there. I used the 'Getting a Diagnosis' questionnaire to take with me to my first appointment with my specialist and it proved very handy. I have also used the Web Chat feature when I have been really struggling and the volunteer was very friendly and helpful.

I am so lucky to have an amazing support network, including my beautiful mum (pictured) who comes with me to every single medical appointment - often speaking on my behalf when I am struggling to talk through tears. However, I know this isn't the case for everyone which is why it is so important to have Endometriosis UK to help provide this support where it's needed.

Thank you Lily for sharing your story.

If you are struggling with endometriosis and need support, we are here for you. Find out more about our support services here.