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My Diagnostic Journey

I was diagnosed with Endometriosis in March 2023 after 9 years of chronic pain, sleepless nights and countless missed days of school and work.

I have been struggling with pelvic pain since my early teen years and was put on hormonal contraception at 15 years old, told it was probably IBS and no further investigation was taken. Since then, after continuously going back to the GP and asking for them to look into it further, I got sent for a colonoscopy and then ultrasounds, which all showed nothing. I mentioned Endometriosis to my GP's and they told me "it couldn't be that". I was finally referred to gynaecology, added to the waitlist for a diagnostic laparoscopy, and Endometriosis was found.

During surgery, my Endometriosis was treated by ablation and I thought I was finally on the road to recovery. Unfortunately, there is no cure and my symptoms came back 3 months later and new symptoms appeared too, debilitating me again. I was told I have to learn to live with it even though treatment options are poor and limited, nothing helps and I just have to wait for the pain to pass or dull down.

There is a lack of resources, awareness, treatments and research into this condition, which is why it takes so long for a diagnosis and so many of us struggle with a poor quality of life. I became an ambassador for the ENDO1000 Project in September 2024 and believe it is projects like this that will help reduce diagnosis time and provide better treatments for myself and so many others.

About Endometriosis

Endometriosis occurs when cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body. These cells can grow and change in response to hormones in the menstrual cycle, this can cause inflammation, pain and scar tissue. Endometriosis is most commonly found on the lining of the pelvis (peritoneum) and may occur in the ovaries and involve other pelvic organs, like the bowel or bladder. Less commonly, endometriosis can also be found outside the pelvis, such as in the chest. Endometriosis affects 10% of women and those assigned female at birth from puberty to menopause, although the impact may be felt for life. In the UK, that’s over 1.5 million from all races and ethnicities living with the condition.

Endometriosis can have a destructive impact on quality of life, participation in daily and social activities, physical and sexual functioning, relationships, educational and work productivity, mental health, and well-being.

It causes serious and debilitating symptoms, such as chronic pelvic pain, pain with menstruation, and pain during sex, urination and bowel movements.

Many endometriosis sufferers also have trouble getting pregnant and suffer from fatigue.

It is estimated that at least 190 million women may have endometriosis worldwide, but this is probably an underestimate.

Although some cases can be diagnosed with imaging, there are currently no reliable blood tests for endometriosis and many people have to wait for surgery to look inside the pelvis to make the diagnosis.

About ENDO1000 Project

ENDO1000 is a UK-wide research project that will collect data and biological samples from 1000 individuals with endometriosis. The aim of the ENDO1000 project is to accelerate discovery and advance data-driven research into endometriosis diagnosis and treatment, paving the way for a brighter future for women affected by endometriosis. We need to raise £1million to include all 1000 women in the study and we can’t do this without your help. The cost per woman on the study is around £1000 and although participants cannot pay to take part in the study everyone is welcome to make a donation or fundraise to ensure the project can recruit all 1000 participants. Donations of all sizes will have an impact.