Daniel's Story
Daniel reflects on the journey he and his wife Rebecca have shared on her journey to a diagnosis of endometriosis and navigating the condition together.
"Just short of a couple of months after we got married, my wife Rebecca began experiencing some sudden, unusual pains. Little did we know that this would spark the unfolding of a rapid, painfully severe decline in her health, well-being and quality of life.
It took immense amounts of time and energy, doing our research and advocating for ourselves to finally identify with doctors and specialists that one of the root causes of Rebecca’s constant pain is endometriosis.
Along the way, we have learned from the stories and experiences of many that this is the plight of over 1.5 million in the UK alone who are living with this condition and how on average it takes eight years for a diagnosis. On top of this, many, and in particular, women of colour are having to fight this condition and many others against the backdrop of the ongoing legacies of health and social injustice.
As challenging as the years have been we continue to hold on to hope. Supporting a partner with endometriosis can be mentally and emotionally taxing and it’s often difficult to know how to be, or what is best. Working out how out how to take time for yourself in small and sometimes bigger ways is key to replenishing your mental and emotional capacity and resources to be there for your loved one in the best way you can. Be kind to yourself and remember that this is a long term very unpredictable condition that both of you will be coming to terms with."
Thank you Daniel for sharing your story.
In our past webinar 'Supporting someone with endometriosis', Endometriosis UK volunteer Rebecca and Clinical Nurse Specialist Claudia share advice and insight for those supporting a loved one with the condition. Watch here.
Maeve's Story
“I had always suffered with excruciating periods but I was put on the pill quite young, which masked my symptoms. It wasn’t until 2013 that the extent of how unwell I was became apparent. I was told my symptoms were fairly non-specific, so I was put through 3 different diagnostic procedures in 2015, including a laparoscopy. However nothing was found and I was led to believe I would never get any answers and I would just have to live with the pain and other symptoms.
I persisted and did a lot of my own research which compounded my belief that endometriosis was the correct diagnosis. Armed with this knowledge, I went to see several different gynaecologists in 2018 and 2019 but they all told me that as I had already had a negative laparoscopy and nothing was showing on any scans it was unlikely I had endometriosis.
I decided to try again in 2021 and, having recently moved, found an amazing gynaecologist who was the first person to really take me seriously. He was happy, based on my symptoms and journey thus far, to provisionally diagnose me with endometriosis in November 2021. I went on hormonal treatment to try and manage my symptoms, which helped for a time but in the summer of 2022 my health took a turn for the worse and, after several trips to A&E, I went back to see the same specialist and elected to have another laparoscopy.
On 1 February 2023 I had this second laparoscopy and I was finally 100% confirmed to have endometriosis. When I came round from the operation and I was told they had found the endometriosis this time, I cried so many tears of relief. It had taken me 10 years to get to this point. During my second laparoscopy they found peritoneal endometriosis in the pouch of Douglas, on my uterus and uterosacral ligaments and particularly badly on my right fallopian tube. The surgeon also observed bowel adhesions to the wall of my abdomen and possible adenomyosis too. Unfortunately, the operation hasn’t helped with my symptoms, but I am just so relieved to understand what is happening to my body and to know that this is not just in my head.
It is so scary not knowing what is going on with your own body - you know it better than anyone else so if something doesn't feel right please keep on fighting to get answers. There are so many stories out there like mine - we have to put a stop to this and take this disease seriously. I am so proud of myself for never giving up because knowledge is power and getting a diagnosis has helped me to take back some of the control this disease has had over me. To anyone else out there on this journey, you are not alone.”
Thank you Maeve for sharing your story.
Talking about endometriosis symptoms can be difficult, even with healthcare professionals. We have dedicated resources created to support you in having helpful conversations with your healthcare professionals. Find them here.