Navigating The Complex Web Of Endometriosis

27th October 2023

Living with endometriosis can be an incredibly challenging and frustrating journey. It's a condition that affects every aspect of life, from physical health to emotional well-being. In my six-plus years since diagnosis, I've experienced numerous ups and downs, tried various treatments, and navigated the intricate web of healthcare options. I wanted to give an update and share my recent experiences, appointments, and the hope that comes from continued support and exploration.

1. Thoracic Torso Pain

In May this year, I had a follow-up with my thoracic surgeon, who referred me to a pain management consultant for the persistent pain I've been experiencing following lung/diaphragm repair surgery. The process of receiving the referral and appointment approval from my insurance company took several months. Finally, I saw the pain management consultant, who provided me with some options for managing the thoracic torso pain. This appointment was a glimmer of hope in my ongoing journey.

2. Pelvic Endometriosis Flare-ups

During the summer, I found myself in A&E with severe pelvic pain, lower back and shooting left leg pain, and at this point, I was referred for a repeat pelvic MRI to investigate the causes of my pelvic endometriosis flare-ups. My journey led me to the COPE Centre of Pain Education as part of the NHS. While I received an invitation to attend an introduction session, I had to complete a 14-page application. The catch was that there were no available sessions until at least 2024, which left me without the support for managing my pain yet again after a short window of hope.

3. A Supportive Endometriosis Nurse

One ray of hope emerged in the form of an endometriosis nurse, who was not only helpful but also empathetic and compassionate. For the first time in my journey, someone was there to holistically connect all the dots between my thoracic and pelvic endometriosis, private and NHS appointments, and the countless reports. This support was invaluable and long overdue. She was so kind. I remember her saying to me ‘It’s a lot’ as I broke down in tears.

4. Exploring Pain Management

After being referred to NHS pain management, I was told that I was indeed a complex case. I was offered six acupuncture sessions to help manage my torso pain. Additionally, a neurologist appointment was set up to explore the possibility of a spinal cord stimulation device trial. While I'm still awaiting a response regarding this, it's yet another option to consider in my pursuit of pain relief.

5. Hormone Treatment

The journey took an interesting turn when I consulted with my gynaecology consultant. We decided to try an off-license Progesterone-only hormone treatment for three months, which did alleviate some symptoms related to peri-menopause and hormone imbalances caused by endometriosis. However, it came with side effects, including frequent and disruptive bleeding, and increased fatigue, inflammation, and pain. Currently, I'm exploring a new hormone pill to halt my cycle, in hopes of reducing symptoms before my next pelvic surgery. As of now, it's too early to draw conclusions.

6. The Next Steps

My gynaecologist referred me to a multi-disciplinary team at a BSGE Centre (British Society for Gynaecological Endoscopy) to discuss the potential need for bowel and bladder endometriosis excision and their opinions on a full hysterectomy. This represents a significant step in my journey, and I'm taking the time to process the information, research, and consider the end goals and potential outcomes.

Endometriosis is a complex condition, and my journey has been filled with ups and downs, but with the support of the endometriosis community and continued hope that coming from my quest to find the correct healthcare professionals and my determination to explore various treatment options it keeps me going. As I continue to navigate this challenging path, I'll keep you updated on my progress, with the hope that my experiences can shed some light on the intricate web of endometriosis management and the importance of seeking the right support and information.