This is 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.