Santa in the City London- Endomitosis UK

I'm raising money in aid of Endometriosis UK and every donation will help. Thank you in advance for your contribution to this cause that means so much to me. I will be doing the walk in London on December 4th to raise money and awareness for the charity.

Endometriosis is a chronic medical condition in which tissue similar to the lining of the uterus (called the endometrium) starts to grow outside the uterus. This abnormal tissue can be found on the ovaries, fallopian tubes, the outer surface of the uterus, and other pelvic organs. In rare cases, it can spread beyond the pelvic area. This tissue responds to the hormonal changes of the menstrual cycle, leading to inflammation, pain, and the formation of scar tissue (adhesions).

Symptoms of endometriosis can vary but often include:

- Painful periods (dysmenorrhea)

- Pain during intercourse

- Pain during bowel movements or urination

- Chronic pelvic pain

- Fatigue

- Infertility

- Heavy menstrual bleeding or bleeding between periods

Diagnosis Delay in the UK

In the UK, the diagnosis of endometriosis is often delayed due to the complexity of its symptoms, which can mimic other conditions like irritable bowel syndrome (IBS) or pelvic inflammatory disease (PID). It is common for women to experience symptoms for years before receiving a proper diagnosis.

On average, it takes 7 to 8 years from the onset of symptoms to get a confirmed diagnosis in the UK. This delay can happen for several reasons:

- Normalization of painful periods, with many people thinking it's just part of the menstrual cycle.

- Misdiagnosis or confusion with other conditions.

- The need for a laparoscopy (a minimally invasive surgery) to definitively diagnose endometriosis.

Efforts are ongoing to raise awareness about endometriosis in order to reduce diagnosis times and improve the quality of life for those affected by the condition.

My Story

After years of visits to health professionals and countless trips to A&E, I was finally diagnosed with Stage 4 Endometriosis in September 2023. My laparoscopy revealed "kissing ovaries," large cysts, endometriosis in the pouch of Douglas, and advanced endometriosis throughout my pelvis, affecting my bowel. This disease has completely taken over my life.

I am often bedbound, in excruciating pain, shaking, sick, and unable to walk. Despite trying to manage the pain, it feels uncontrollable most days. Endometriosis has also impacted my fertility, and I will likely need IVF in the future to have a family.

Fast forward to 2024, and my MRI scan showed that the condition has progressed further into my bowel. I now face major surgery, likely in 2025, to remove the affected tissue. Depending on what the surgeons find, I may need a stoma for a short period. My ovaries are now stuck to my back, impacting my ligaments and pelvis, making every day a struggle.

This journey has been mentally and physically draining, and I'm sharing my story to raise awareness about this debilitating disease. Endometriosis affects millions, yet many suffer for years before receiving a proper diagnosis.

With love and gratitude,

Rebecca