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As some of you know, I have been suffering from interstitial cystitis for a while. In this post I want to share all I have learnt from this experience.

I practice Linguistic Empathy and I expect you to do the same. Please bear with me if my English is not perfect.

Many women suffer from cystitis. A smaller number suffer from interstitial cystitis.

I have learnt this and other things on my skin after months of pain. I want to share my experience with interstitial cystitis to help those who suffer from it, or will have to face it in the future.

When I was young, I used to suffer from cystitis a lot. After the birth of my first son, however, I was completely cured, and for year I did not have the least problem. Until my stay in Jakarta completely upset my immune system, and cystitis came back.

It started with bacterial infections that I more or less managed to solve, albeit only temporarily.

Since January of last year (2018) however, the problem became more serious, and continuous. Up to the month of July I was unable to get rid of the hated bacteria, until a good urologist found the right treatment.

I thought that was the end of an already too long torture, but in fact one month later the classic symptoms of cystitis came back. I then underwent a cystoscopy, which revealed a huge infection and a bullous edema of the bladder.

This last mysterious thing is nothing but the reaction of my bladder to repeated infections. I won’t give you more horrifying details, but the diagnosis was all but encouraging, especially because it introduced a new and totally unknown condition to me: interstitial cystitis.

The diagnosis, however, gave me a clear scenario about what I could expect. This was a relief because I was exhausted by keeping on hoping to get better, but being constantly frustrated by the re-occurrence of symptoms that sometimes would come back very suddenly.

The interstitial cystitis, also called pelvic pain, is a non batteriological infection of the urinary tract that becomes chronic, and whose causes are not clear yet (like all pathologies I suffer from 🙂 ).

There is no decisive treatment at the moment. One can only try some strategies that in some cases give relief to the constant pain. Among these, the assumption of antibiotics for a prolonged period of time, food supplements with mannose, lactic ferments, and vitamins.

I tried all this and even more, but nothing helped me. My urologist, who from time to time patiently listens to my desperate cries of help, tries to give me hope by saying that it sometimes happens that interstitial cystitis disappears on its own.

As a last resource (but without guarantee it will be a definitive solution) he has recently suggested we try a cystoscopy in general anesthesia, during which they would collect bladder’s tissues in different points where the infection is stronger, and burn the bullous edema.

Terrified by the perspective, I gave a further cut in my diet. I had already banned alcohol, chocolate and olives (without improvements), I still had to eliminate cheese, pasta and white bread.

I have practically turned into a monk. I only eat vegetables and a bit of white meat or an egg from time to time, I drink 2 litres of water a day, only one coffee in the morning, and I break the rule only if we have dinner with friends or in case of special celebrations.

I have been feeling better in the last month, though, which would confirm the idea that it’s all about diet. For the moment I keep on like this, and as soon as I feel the symptoms again, I start drinking like a camel facing a desert trip, and I fast for a day.

Maybe I have finally understood how to manage this interstitial cystitis, and I would therefore like to give a piece of advice to those who have to face this pathology, with which it’s so hard to come to terms:

*it is difficult to accept that you won’t heal from interstitial cystitis. However, part of the solution is exactly in giving up searching for a solution and accept to live with it;
**everyone will suggest all sorts of solutions. When desperate, you might be tempted to try them all. When you realize that none of these work, you’ll be even more frustrated. My advice is to only try things that make sense to you, and trust your urologist for all the rest;
***after suffering for a few months, you start understanding what can help you. Listen to your body, and don’t be afraid to try new things: it takes time to understand which ones are really beneficial;
****talk with people around you and don’t be ashamed to tell them you suffer from interstitial cystitis. It is really important that those who are close to you fully understand how hampering this pathology is, and how the continuous effort to live normally under such a painful condition can weigh on your mood, too;
*****have a thorough check of you hygiene practices: maybe you will spot something that must be changed or introduced to absolutely diminish the risk of bacterial infections (which in case of interstitial cystitis is higher because the whole urogenital area is more vulnerable).

Should you wish to contact me to share your experience, please do not hesitate. I promise to update this post in case I discover new important truths about the hated interstitial cystitis.

 

Claudia Landini
June 2019