A Woman’s Story: Living With Pelvic Congestion Syndrome
For almost 30 years, I lived with chronic pelvic pain without clear answers. Over that time, I saw many doctors and specialists and underwent repeated investigations, yet no one was able to explain why I was in pain.
I was referred by my GP to a gastroenterologist, an endocrinologist, and multiple gynaecologists. I was also sent to a vascular surgeon for leg pain and treated several times for varicose veins. Despite all these, no one connected my pelvic pain, leg symptoms, and daily worsening discomfort to Pelvic Congestion Syndrome (PCS). Most of the time, I was told to manage the pain with medication.
I have had multiple pregnancies. The pain I was suffering was a heavy, dragging sensation in my lower abdomen and back that worsened as the day went on, especially with prolonged standing. At times, the pain was severe, associated with nausea and vomiting, and radiated to my legs and vaginal area. Symptoms often worsened after intercourse. A Mirena did not give me long term relief.
The ongoing uncertainty and lack of diagnosis were deeply frustrating. The pain affected my work, family life, and important social moments. Over time, I began to believe that this was simply something I had to live with.
Everything changed when I decided to change my GP. My new GP took the time to listen and referred me to a gynaecologist in the Hills area who carefully considered my long history and pelvic venous congestion (PCS) was finally raised. I was then referred to a Sydney interventional radiologist for further assessment treatment.
I underwent ovarian vein embolisation (OVE) which was performed local anaesthetic and sedation by the Sydney Interventional Radiologist. In the days and weeks that followed, my pelvic pain settled significantly. I gradually stopped needing regular pain medication, the heaviness in my abdomen resolved, and the leg pain did not return. I no longer have to experience the severe, debilitating pain that once dominated my daily life.
Looking back, I wish pelvic congestion syndrome (PCS) had been considered much earlier. If you have long-standing pelvic pain that relates to upright posture and activities, keep asking can this be PCS — being heard can make all the difference.
This story describes an individual patient’s experience. Outcomes vary between individuals and this information does not replace personalised medical advice.
