Do you suffer from 5/6 cystitis a year?

Was I going to Pee bloody fluid every day?

My name is Zoe. I am 37 years old, from Trento, and I was adopted as a child. I got married 6 years ago in Trento but now live in Milan. At the age of 18, I had my first hemorrhagic cystitis. No one warned me about the Ureaplasma test for an infection. I still remember it was Christmas, and my parents were returning from a trip, and I was alone at home. I know now that STD Lab tests are part of life. It always resulted in dull, very sharp pain.

I called a family friend who was the contact for any problems. He tells me to take tachipirina and go to bed.

From there, my ordeal begins.

Endless Search for Relief

For years and years, I suffered from 5/6 cystitis a year. But they weren’t cystitis with normal pain; it felt like a knife was piercing my clitoris. Pain in the lower abdomen like that of childbirth, complete with small contractions.

I go to an STD Urologist recommended to my mother by a friend. He visits me for an ultrasound, but nothing is revealing. He also gives me spasmex to take when I feel sick. Urine negative culture.

He makes me do an STD renal scan. Everything is fine except for a small malformation in the kidney basin. A higher kidney and a lower one. But he doesn’t give me much advice other than to stop wearing jeans and wool underwear, drinking a lot and using Ureaplasma antibiotics. Always.

Chinoplus, Augmentin, Ciproxin, Neo Fouradantin, Levofloxacin, Cistalgan, a cranberry-based supplement, Monuril, which I refuse to take because it doesn’t do anything at all!…and Tachipirina, like a candy.

No gastric protection.

Impact on Daily Life and Relationships

Browsing the internet, I came across the STD Home Test Forum. It was fantastic! I order the Ausilium immediately and finally have some peace. Peace that stops after 4 months of taking Ausilium.

I’m moving to Milan (I feel really bad in Trento) to live with my boyfriend, who will later become my husband. No cystitis up to 3 months. Cystitis. Ureaplasma Antibiotic. Hemorrhagic cystitis. A

And I continued like this…until one day, I passed out in the office. When they pick me up, I have no STD symptoms. Nothing at all.

Frustration with Care

According to company policy, they call an ambulance and take me to the hospital. My boyfriend joins me. They do a thousand Ureaplasma and STD tests and 4 x-rays of my abdomen, but nothing at all.

Also, they find my value a little high, and the STD urine tests are slightly off. They give me antibiotics and lots of rest.

After 3 days, I’m at work because I love my job and where I work.

I get to the year when my boyfriend asks me to marry him…

And I am very happy we have begun the preparations. After two days of cystitis, I go to the gym to lose weight and ride my exercise bike. I’m going swimming… burning urination. Antibiotic. I desperately call my urologist in Trento… he tells me to take antibiotics and not to complain (it’s normal!).

Okay. I still go to the gym, but after a week, I give up.

Difficulties with Diagnosis and Treatment

And I can not stand it anymore. I continue to have ureaplasma-related cystitis twice a week. The wedding day arrives. I’m in a sorry state. I’m not smiling…I’m excited. The afternoon arrives, and I go to the bathroom during the reception. Burning. I ignore it.

We’re going on our honeymoon. Two cystitis… and my husband complains that you can’t make love even on your honeymoon…. I indulge, and the next day, I get cystitis. I take antibiotics.

I’m going back to Trento to see my parents. On Saturday (one week after our return to Italy), I feel like I’m getting hemorrhagic cystitis.

Desperate Search for Relief

I run to the emergency room. They make me wait 4 hours (because you are there, neither standing, nor sitting, nor sideways… but you’re not serious. You have cystitis!) for a pregnancy test even though I scream at him in exasperation that if I were pregnant, it would I would be of the holy spirit!

They finally visit me. They hear my STD story through tears, and in a moment of kindness, they tell me they will keep me there for the night. Ole!

The next day, they sent me to the urologist, who happens to be the department director.

He curses in Turkish for his own business. And he is livid because they sent 3 people to him from the emergency room, all on stretchers.

He tells the nurse that he only visits the first two and sends the others home.

Traumatic Experiences with Diagnosis and Treatment

He gives me an ultrasound by jumping on my belly. My bladder hurts a lot, but he doesn’t care. I have nothing.

He sends me home. He doesn’t want to give me a prescription for Ureaplasma antibiotics; I have to buy them for him…

Fed up with this treatment, I go to my old urologist, who, in the meantime, has moved to a nearby hospital. He visits me, nothing significant.

He tells me he wants to do an STD focused Cystoscopy. All right.

I do the cystoscopy and leave the operating room SCREAMING.

I have something there, right there, that causes me excruciating pain. While I’m still under the effects of the delirium of anaesthesia, he comes there and screams in my face that I have a stenosis of the Madonna… and that it’s my fault; the cystoscope didn’t fit.

Emotional and Physical Toll

I feel like crying… but I’m also sleepy, so I try to calm down and sleep.

My ever-present husband would like to punch him, but he controls himself and stays close to me.

They call the nurse, and after 3 hours, they remove the dilator. When she takes it away from me, she is surprised, “But ma’am, they put a man’s dilator in you; that’s why it hurts so much… poor girl!”.

I cry and cry. I try to pee, but I can’t.

They take me to the clinic and try to insert a CH 16 catheter. Nothing to do. The urologist gets impatient and scolds me. He tells me I’m too tight.

In the end, he makes it… I scream in pain. Blood everywhere.

Seeking Answers and Validation

My husband is agitated outside. When the urologist opens the door, he asks for explanations and needs a response.

They take me to the room and tell me I must get up. I sit down, but I feel bad. So, I called an infirmary, and they knocked me down straight away because I was about to pass out. I feel better.

My husband catches the urologist and asks him why I feel so bad. She replies that I’m emotional and I don’t understand anything.

On the resignation paper, he also writes, “The lady does not cooperate because she is too emotional and anxious.”

As an STD diagnosis, they write that I have the walls of the bladder ruined by strain and a stenotic and ruined urethra.

I feel screwed.

Turning Point: Meeting Dr. Salonia

After two days of rest at home, I go to the bathroom very well; sometimes, I’m surprised by this torrent in the flood!

They schedule me for manual dilation while awake every 3 months. Waking up!!!

I refuse. In the meantime, he gave me Levofloxacin 1000 for 10 days. I think I don’t even drive. And I don’t leave the house.

I feel awful.

Rehabilitation and Recovery

My mother became interested, and I met the physiotherapist, Borella. He is a saint!!! And he received me and explained what I had.

He gives me exercises, and we do a series of meetings and treatments that get me back on my feet.

I returned to Milan, and the Ureaplasma cystitis returned. And I noticed that since I returned from my honeymoon, I have dysentery twice a week.

I do all the STD Lab tests to find out if, by chance, I have caught any parasites or viruses. Everything clean.

I’m healthy as a fish. I spent 800 euros on STD Gynaecological visits, a gastroenterologist, a urologist, and laboratory tests.

Diagnosis and Treatment by Dr. Salonia

Exasperated, I searched the San Raffaele website and found the doctor. Salonia.

I’m going on my first STD visit. He lets me talk for about 40 minutes. He has also read all the emergency room papers for 15 years.

Reads the Ureaplasma medications I have taken. Read everything.

Understanding the Condition

He looks at me and tells me I’m with him now and must stay calm. Also, he makes me pee in a vase under a toilet (uroflowmetry), a test I have done for the very first time in 20 years!!! He looks at it and tells me, “You have a urethral stricture, ok, but if you allow me, I would like to do a cystoscopy”.

Okay.

Let’s start with the exams. Urodynamic examination. Total fright… putting on the catheter is a trauma for me.

Instead, the STD Doctor I found was very kind. He put me at ease and explained things to me step by step.

He looks at the result and explains to me that I have a urination valve that gives the wrong signals to the brain.

I do urethral STD swabs (incredible pain), vaginal swabs, urine tests, ultrasounds, CBC blood tests. PET exams.

All negative (thank goodness).

Initial Recovery and Hospital Stay

The day of the cystoscopy arrives. I tremble with fear. The urologist who sees me puts me at ease; he won’t dilate me. I’ll have a little pain, but he won’t put the dilator on me. My husband corners the urologist and forces him to call Salonia, who confirms that they don’t have to do the dilation.

Within. I sleep. I wake up. Pain, yes.. but bearable.

But my mood gives way, and I can’t even get up. They admit me.

I make friends with the lady’s daughter in the next bed. Very sweet. He helps me with everything.

The next day, I’m eating, and the doctor comes in. Salonia and the doctor who did my cystoscopy.

He smiles at me. Satisfied, he tells me that my bladder is fine (I have tears in my eyes) and that I don’t have such a severe urethral stricture. The walls are not fibrotic, as I was told in Trento; therefore, they are recoverable!

Treatment Plan and Adjustments

They managed to dilate it with much patience up to 26ch. I say.. “so all this Ausilium saved the walls of my bladder!!!”. He tells me to stay calm, and I’ll see you at the final STD visit.

My problem is the 1% in this industry. There are no studies or solutions. The solution would be plastic reconstruction surgery of the urethra. But for heaven’s sake, she tells me, she’s too young!!!

Let’s do a pelvic re-education program instead. Then, I take IALURIS soft gel every evening.

They cannot give me a therapy that is intended for men because I am too young a woman. So he asks me to try. But they are checked every 3 months.

They want to do some dilations for me but always with great calm and patience. They told me they would teach me how to make them myself.

I most likely have congenital stenosis. But it amazes and angers me why I wasn’t given a uroflowmetry test at 18.

It’s an exam that you don’t even pay for…!

Meanwhile, I reflect and have some memories. When I accompanied a classmate to the bathroom, she didn’t have the flow I had… I have a trickle.

I begin pelvic floor rehabilitation. The physiotherapist noticed that my urethra was a little protruding, not like other women and positioned very low towards the vagina.

In three years, I have recovered a lot, and the chronic pelvic pain has gone. Now, I listen to myself a lot more. Every day, I wake up and do the exercises; even peeing has become a relaxation routine.

Embracing Rehabilitation and Coping

Reports topic.

When I was 20, I was really happy to be making love. Now that’s a problem.

Every time I have my fertile period (we’ve been trying to have a baby for 7 years), I get Ureaplasma cystitis or a nuisance that doesn’t allow me to have intercourse.

Managing Relationships and Emotions

In short. Making love is an epochal event in our history. I have a very loving and very patient husband. And I admit that psychologically; I had become dependent on antibiotics, Ausilium and tachipirina. And after the wedding, thanks also to Dr. Salonia, I understood that the STD Doctors who had treated me before had doubled my Ureaplasma antibiotic doses.

Thanks to the physiotherapist, I stopped taking STD antibiotics.

I have an episode once every two years. I promptly go to the emergency room at San Raffaele, and they give me lots of fans until it all disappears. From 2013 to 2019, I will have had 3 hemorrhagic cystitis.

In 2016, our little girl arrived through national adoption. A dream… after only 4 months of waiting.

Looking Towards the Future

I continue: I no longer take the Ureaplasma antibiotic if I don’t need it. Also, I self-massage, rest when needed, and live day by day. And I gained 30 kilos. When I met my husband, I weighed 52 kilos; I was beautiful. I got married obese. I looked at the wedding photos, and I didn’t like myself.

Imagine that when I go shopping, they let me pass because they think I’m pregnant because of my swollen belly! And I follow a balanced diet. I will soon have two knee surgeries, so I can go back to doing some sport.

This is my Ureaplasma STD Test story. I hope that one day, they will find a cure even without having to undergo surgery, which they say is very risky.

Thanks, ladies, for reading this far.