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.
Why I Volunteer: Michelle's Story
I had always suffered problems since starting my period on my 11th birthday (such a good birthday present!). I'd miss a week a month from school stuck in bed in agony with no one to understand or listen. It was a very lonely time. At the age of 23 in 2016, I was diagnosed with endometriosis, I had never even heard of it before. It was a relief to finally know what I had been suffering with and to prove that it wasn’t in my head.
I was at a dark time in my life living with this illness as I felt it was controlling and ruining my life. Thankfully, a new group in my area had just been set up and I joined as it’s first member. It was a lifeline to know I wasn’t the only one in the world with this despite it feeling that way.
Shortly after, I had the opportunity to become a group leader at the Forth Valley Group and I knew I had to do it as I remembered how it felt to be alone in a dark place with no way out and I didn’t want anyone else to go through that. I hated how the condition can sometimes control lives and bodies so much, yet so many still don't know about it. So, I use a lot of my energy to try to educate people as much as I can and I’m passionate about bringing about some change as I feel it’s been brushed under the rug for far too long.
I’ve noticed that having the group and being able to support other sufferers has allowed me to regain some of my power that I felt endometriosis had taken from me.
I always aim to make sure the group is as relaxed and welcoming as possible, I like the meetings to be casual with no pressure to speak if someone doesn’t want to, a safe space for people to come and be around fellow sufferers. That in itself takes the weight off peoples shoulders, which makes a massive difference and it means a lot to me to be able to help people in this way.
Thank you Michelle for sharing your volunteer story with us and for your support for those with endometriosis in your local community. If you'd like to get in touch with the Forth Valley group, or find your local group, please visit our Support Groups page.
Jakia's Story
"I started my period at 9 years old and we hadn't had 'the chat' at school yet. I thought I was dying. Since then, my pains were frequent and my periods painful and heavy.
Back then, the only treatment offered was to be put on the pill. It helped slightly, but the pains got worse and I wasn't any closer to getting answers.
Fast forward a few years and my absences from work were getting worse. I would have to ring and explain how I couldn't stand up or had heavy bleeding. Discussing with senior managers why my absences were so frequent was nothing short of embarrassing.
I am now 40 years old, have had three surgeries and have diagnosed endometriosis and adenomyosis. Coming from an Asian background, talking about this, or anything gynecological/sexual health related had always felt taboo and many of us would only get information from the classes provided during the last years of junior school. When seeking advice, I was fobbed off and asked varying questions of 'why wasn't I married?', 'don't you want children?'.
This prompted me to be more open about having my condition. I feel more dialogue and transparency is required to be open about these issues, so that we are prepared from a young age. Luckily, I met support group leaders and joined my local group, and I haven't looked back since. Having like-minded sufferers is a comfort and not having to explain why you feel rubbish, or low made things feel easier.
Currently, I am undergoing induced medical menopause, with an impending hysterectomy*. I am pleased now to have a medical team who are empathetic and considerate and do not judge me based on my age and ethnicity."
Thank you Jakia for sharing your story.
Discussing endometriosis is not always easy. If you feel that talking to someone with lived experience may help, our support services, run by trained volunteers are here for you. Find out more here.
*Treatment and management options for endometriosis vary from person to person, it is always best to discuss your unique needs with your healthcare team.