Diary Entry: Valeria’s Story

I am convinced that there are a lot of patients with IC who struggled for a long time before receiving the correct diagnosis. I want to share pieces of my own experiences in this field to hopefully help others learn from my journey.

Introducing myself:

Hey there! My name is Valeria. I am 47 years old, coming from a medium sized town in Hungary. I got diagnosed with IC around 2 years ago. However, the symptoms started much earlier, already in 2019.

Until I was diagnosed, I had no idea what was going on with my body. As I was going through menopause, I thought it was something hormonal, a gynaecological issue because of the changes in my body and hormone system. Little did I know there was something else going on. Fortunately, a urologist who I have been seeing regularly, gave the proper diagnosis and told me what to expect. Knowing my new diagnosis, I did some research and read everything that seemed important regarding IC.

First, I started searching around Facebook; within certain groups I would look for tips and tricks or comments, publications from doctors, healing methods, treating schedules, whatever I could find. I think this can also be a little tricky if you are dealing with multiple health issues. It can be rather misleading and distracting, for both you and your doctor, to find the real issue which doesn’t lead to misdiagnosis. For me it was difficult going through menopause and finding out about IC, a sickness I have never heard of before.

My initial symptoms were dreadful; I was sweating, shaking, starting to have sleeping problems, constant pelvic pain, urging voiding, and I always had blood in my urine examinations. I learned through the past years to not always take antibiotics that are prescribed to me by doctors. Although it may seem like an easy way out of the pain, in the long run it may not always be helpful. Especially if you’re misdiagnosed and given antibiotics even when no are bacteria detected.

The struggle during the past 2 years has been tough. I think I even might be posttraumatic. In the numerous situations in the last few years, I found myself in a rather embarrassing setting trying to overcome the flares. I don’t know about you, but I can speak for myself when I say: I have some really bad memories because of IC. Those include getting out of the car in the middle of the road and running into the woods while the temperature outside was below zero or being member of an exam panel and not being able to think. I couldn't even give out the right scores to candidates, which had had been my job at that time. I have plenty of ’must solve this somehow’ memories. I remember being desperate, feeling ashamed, trying to hide how I felt and what I was going though, I had to go through some nasty experiences, like being stuck in a traffic jam on the highway with no escape to use a restroom. Before I was diagnosed, a friend of mine shared with me how she was suffering from IBS, she told me some horrible stories of what she was going through, now I must deal with it myself and man it can be so frustrating at times…

However, I have hope! Lots of hope to get better, I do whatever I can. Recently, I started with the elimination diet, and if I’m honest I noticed it has helped me. Mentally, I have learned to always add positive thoughts to the negative ones on a daily basis.

What worries me the most is the number of patients who have had symptoms for years and who still have ongoing issues with IC daily yet have not recieved the right diagnosis. That is unfortunate and very dangerous. This is why I consider it to be important to raise awareness towards IC, regardless of how sensitive the topic is to the patients. I believe this can be the first step to help IC patients with finally receiving the right diagnosis, treatment, and peace in their life.

Yours truly,
Valeria (UroSystem IC Ambassador)