The story of Nadja
Hello! My name is Nadja and I‘m 28 years old. I got diagnosed with Pudendal Neuralgia caused by a Tarlov Cyst.
Last year was hard for me: In February 2021 I felt a sharp pain in my pelvic area and here starts my story. I remember exactly how it started. My Mum and I had a cosy evening with a good movie, chilling on the couch and as I wanted to get up to get some water I felt a pain which I` have never had before. A sharp pain on my right site, pelvic area. But sitting down with this was even worse! We thought it might be sciatic pain or some muscle tension and that‘s what the doctors within the next months also assumed. They tried a lot for treatment: Physio Therapy, muscle injections and many, many pills (novaminsulfon, dicloflenac, predinsolon, etc. – even Oxycodon). Without success.
The last hope were pills for neurological pain release and I finally had a little relief. Not much, but a little bit – within the next weeks my dosage got increased and the side effects also hit me. But still: No diagnosis.
In April I went to a Neurologist and finally got my first diagnosis: Pudendal Neuralgia. I should stick with my meds, because in my hometown, Munich, there isn’t a specialist for this kind of Neuralgia. As soon as my body seemed to get to used to my dosage, the pain came back as hurtful as before. Month later, in August, my doctor from pain department re-analysed my MRI scans and told me about a Tarlov Cyst which could cause my Neuralgia. After sending all my diagnosis’s, my pain documents and MRI images to the Vigdis Thompson Foundation in October, I received my report and the confirmationand in January 2022: Yes, I have this little horrific cyst which causes my pain. I am on the waiting list for a treatment and will not give up. But I want to spread awareness about the Tarlov Cysts because I know that many doctors (I heard it pretty often) say, this cyst does not cause any pain. But trust me. It does. So to anyone struggling with those statements and those cysts: Don’t feel alone! I am with you.
Not to forget: My wonderful Mother Eva was with me the whole time and helped me in my darkest and saddest hours. We cried together but mostly, she gave my strength. Thank you, Mum! Thank you for being there.