Alice's Journey

My Endometriosis Journey:

My name is Alice and I am a 24 years old, discussing my journey and diagnosis of endometriosis, adenomyosis and PCOS. My first period was at the age of 16, which lasted 3-4 days. Since my first period I experienced irregular patterns of menstruation which could range from 1 to 8 months in between. Ever since I can remember I have had painful periods which involved days off school and withdrawing socially from unexplained severe pain. From my first period I struggled to wrap my head around whether it was normal to have this much pain and how much it should impact my social, physical and mental health. I received my PCOS diagnosis first which involved what felt like hundreds of appointments with GP’s, endocrinologists and gynaecologists. It was picked up on an external and internal ultrasound when I was 17 years old. I tried the pill first to see whether this helped my symptoms, which it didn’t. If anything things seem to have gotten worse since getting my PCOS diagnosis. I experienced severe stabbing pains not only around my period but intermittently throughout each month. I presented to ED several times as a teenager and young adult with excruciating pain crisis on my left and right lower abdomen. These turned out to be ruptured cysts on my ovaries. Lower back pain became an ongoing and regular discomfort that made me wonder whether it could be muscoskeletal instead of gynaecology related. I tried heat packs, pain killers, TENS machine, anti inflammatories and more which only just took the edge off. From the age of 18 to 21, I had a rare period every 8-12 months. Nothing seemed to be getting better. I saw so many gynaecologists who couldn’t give me an explanation or a solution to this pain that was becoming an increasing disruption into my life. I was told to exercise and have a healthy diet which has always been an important routine in my life. I had my first hysteroscopy and D & C at the age of 20 which didn’t provide many answers. A mirena was inserted during this procedure and I experienced a few months of pain relief. Unfortunately 3- 4 months post this procedure I seemed to relapse again with more severe pain, acne, back pain and nausea. I had an MRI scan at the age of 22 and was constantly in and out of my regular GP practice struggling with my mental health due to the unexplained pain. I went to pelvic physio to help relax my pelvic floor and was struggling to have sex without agonising pain. Pain killers were only a short term fix and came with their own side effects including constipation and grogginess. I finally got told by my GP that they were able to tell me that I had adenomyosis which was picked up on the MRI. I was then referred to my current gynaecologist who was incredible and able to manage my symptoms and perform a laparoscopy in March 2023 which discovered stage 2-3 endometriosis. It was resected from my uterus and parts of my bladder and bowel.  A new mirena was inserted to help control the growth of my adenomyosis and I was put on the progesterone pill to stop any future internal bleeding. I had six months being pain free, but end of 2023 things seemed to go back to how they were pre procedure. I had another burst cysts and stabbing cramps that made it hard for me to work or do anything. I withdrew from my friends and family and my mental health deteriorated. I was then put on Syneral a nasal pray that suppresses the ovaries. This made things much worse, as I was practically going through menopause at 23 years of age. Two months of the spray and I decided to come off it as I was still experiencing pain and it was impacting my mental health too much. I work as a nurse and felt so much shame constantly calling in sick to a job that I love, but was physically unable to do. I began the Mediterranean diet at the start of 2024 which gave me some relief and I started seeing a chronic pain specialist. This was the turning point for me, my symptoms got much better with regular management from a specialist who understood me, my condition and was able to provide me with some options for long term relief, including a lignocaine infusion and a regular small dose of pain relief. 7 years it took me to get my diagnosis and it has been such a hard path for myself and my friends and family who I couldn’t have gotten through without. I still have a long way to go but by sharing my story to those who are struggling, I hope that it can give you some support to know that you are not alone. I feel like I have seen every doctor and specialist under the sun and tried every drug out there. I have had specialists who had told me that a period is normally that painful and that I have just been drug seeking when asking for pain relief so often. My journey to this point has been so incredibly challenging but it has made me a more empathetic person and oncology nurse as you sometimes can never understand what someone else is going through. The important thing that helped me is having people to talk to and fall back on for support. Friends who understand why I have to bail pre catch up because I am in the fetal position at home. And family who have stood by my side and supported me from the get go. Throughout the past 7 years I seemed to have hit rock bottom with my gyny health so many times. My story is similar to so many other women out there and I hope that a change is coming soon to be able to diagnose and improve quality of life for those struggling. I want to share my story and help others if they need support during their own diagnostic journey.