Pelvic Congestion Syndrome Stories

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.

Ovarian vein embolization was a day procedure with little pain.

I was always in a lot of pelvic pain before my period and after days of being on my feet, which is every day. I also experienced pain after sex and it bothered me that I couldn’t understand where the pain was coming from. There were many times when I couldn’t ignore this pain and it would stop me from doing my work at home and in my workplace. I could only get relief if I was to lie down, but that was very unrealistic – especially while at work.

So, just like before, I tried to get answers but as no one could figure out the pain, I lived with it. After consulting with specialists at Sydney Fibroid Clinic, I was diagnosed with pelvic congestion syndrome. I had the ovarian vein embolisation procedure for PCS in early October 2017. This was a day procedure with little pain.

The result was wonderful. Since then I feel like my quality of life has improved immensely. I no longer suffer from pain while doing my normal daily activities and there’s no more pain after sex. I feel like I’ve gained a new lease on my life and I feel liberated. I truly hope that women who suffer from the same conditions as I have can find their way to Sydney Fibroid Clinic and experience such freedom with little down time and not have to resort to invasive surgery such as a hysterectomy.

Once again I’d like to say THANK YOU for everything that you have done to help me and give me a freedom from a condition that is unrecognised by many professionals and so simple to treat.

After the procedure I’m enjoying this new me…

Where do I start. For 11 years, I have seen many GPs, gynaecologists, chiropractors, physiotherapist, naturopath, kinesiologist, pain management specialist, the list goes on, but nobody could tell me why I was in agony and disabled every single day.  It hurts down my legs, in between my legs, my vagina, my bottom and my back. It feels like the pressure pushing down as if my insides were going to fall out. I struggled to stand.

After my third pregnancy I spent thousands and thousands of dollars searching for answers. I would stay up every night Googling my symptoms and was on chat groups with other women.

I struggled for years and had multiple MRI and CT scans, yet nobody could tell me why I was in constant agony.

I had 6 steriod injections in my back and I had no improvement whatsoever.

I was put on Lyrica, Mobic, Celebrax, I lived on Voltaren. I practically was living off pain medication and steroids for years and they weren’t doing anything to help me with the pain but I was gaining weight on steroid.

At one point I gave up searching for answers and became a miserable negative person. I saw a young women doctor hoping maybe she would understand but instead she prescribed me antidepressants because I was crying. I know I’m not a depressed person.

I went online Googling and found a gynaecolgist working together with an interventional radiologist. They heard me and listened to everything I had to say , and thoroughly went through my scans. This is something no other specialist has done before. Every other specialist I went to was just looking at the report instead of actually looking at my scans.

I was diagnosed of Pelvic Congestion Syndrome and was treated with Ovarian Vein Embolization which was a local anaesthetic day procedure with no down time.

After the procedure I was feeling amazing. I feel like I am a new woman. I am exercising again. I am sleeping again; I am a happier person. My life has changed in the most positive way because I am able to do the things that I couldn’t do for so many years.  I’m enjoying this new me.

Every day when I wake up and I’m ready to go for that jog and run I am so grateful that they gave me my life back.