By Emma Felgate
I first woke up with right sided flank pain in 2012, had laparoscopic surgery for a ruptured ovarian cyst in 2013 and was readmitted six months later where I had a CT scan which showed ‘pelvic varicies’ but no one could give me answers as to why they were there. Many hospital admissions later and diagnoses of Hypermobile Ehlers Danlos Syndrome, Long COVID and Postural Orthostatic Tachycardia Syndrome (POTS), I am finally getting my answers.
As my health changed, I found it harder to get anyone to listen and my frustration came out in tears which lead to clinic letter stating I was tearful, leading to the perception it was:
'All in my head.'
Over the years, I had developed chronic right-sided flank pain, back pain, all over joint pain, dragging feelings in my pelvis, worsening POTS symptoms; even I struggled to differentiate between which problem was causing which symptoms.
The more hospital admissions I had the more complex it became therefore the less willing they were to run tests.
It wasn’t until I saw a specialist rheumatologist in 2016, after worsening joint pain that he questioned if it was normal for someone my age to have varicose veins in their pelvis despite no pregnancies. He put together many pieces of the puzzle.
I was diagnosed with Hypermobile Ehlers Danlos Syndrome (after having tests to rule out the vascular type).
It didn’t solve the question of why I had them but I finally felt like someone was on my side, even if a repeat scan was clear. When I was readmitted to hospital years later in 2022 the sonographer scanning me said she thought I had Pelvic Congestion syndrome and a wave of emotion came over me. As I was wheeled into the corridor to wait to be taken back to the ward I felt my eyes sting with tears, I was overwhelmed that I had been gaslit about the veins for years by many different doctors. When I was discharged the surgeon I was admitted under tried to finish with:
“Sometimes women just have pain that can’t be explained.”
In that moment I gave up. Two hospital admissions within weeks of each other and 16 hours waiting for a bed on the ward during an A&E visit that made me question myself and very nearly broke me for it just to end up with him saying that. But I heard a voice from beside me who told him:
“No! Do you not think she’s heard that phrase enough times over the years."
She then proceeded to quiz him on his lack of knowledge about the subject. It was my sister one of my biggest advocates.
After an awful gynaecology appointment I ended up going privately to a specialist clinic made up of vascular doctors and interventional radiologists and I finally felt heard. I had a specialist venous duplex ultrasound with the sonographer asking me questions about the timeline of symptoms and confirmed the congested veins where definitely still there. I managed to keep it together and not cry with relief. The veins were still there and massive.
I had my diagnosis! Pelvic Congestion Syndrome.
They were very thorough in investigations compressions linked to PCS like Nutcracker and May Thurner Syndrome sending me for a MRV scan which came back with probable non-significant May Thurner something which doesn’t need treatment at the moment.
I have learnt that I am my biggest advocate (with the support of my sister). I know how my conditions affect me and I’m the one that lives with it. The research in how these conditions are linked together is developing however there’s still a huge gap, however I can see the light at the end of the tunnel. I still have a lot of things to figure out before I commit to treating the Pelvic congestion like vascular compressions higher up in my stomach, what I suspect to be gastroparesis which can be linked to compressions, the effect of EDS on my veins and metal allergies. However, if things were more simple I wouldn’t hesitate to go ahead with treatment under the specialist. With blood pooling in my feet from POTS and blood pooling in my pelvis from Pelvic Congestion Syndrome it can feel like a mission just staying upright which makes everyday life incredibly hard but not everyone recognises this as they are invisible illnesses.
The gender pain gap is real and I know that some of the comments that have been made by professionals throughout my journey would not have been made if I wasn’t a woman. My advice would be to educate yourself on your health. In an ideal world you would be listened to by every healthcare professional and gaslighting wouldn’t exist but that isn’t the real world. Don’t be afraid to research, question and advocate because you deserve an answer!
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