I will share my story.
I used to get acute cystitis as a child, but my grandmother would make parsley tea and it would go away. That's why I never gave it much thought, and even now I doubt that it has any bearing on my IC diagnosis. Because the size nightmare started like this:
12 years ago, after my first intercourse, I experienced bladder symptoms: frequent urination, just always wanting to urinate. No pain, no burning. Just a strong sudden constant desire. For half a year, no one found the reason. Eventually it turned out that my boyfriend at the time had infected me with the sexually transmitted bacteria ureaplasma parvum, which causes these symptoms. I got rid of the bacteria in half a year, it was difficult to give treatment. Finally, I cured it (and all other bacteria were negative), but my symptoms remained, and new ones appeared: a feeling of heaviness, stretching in the bladder, I don't know how to describe it... I call it "imagine that a 10 kg weight is placed in the lower part of your stomach and it's hard for you to stand, it just drags you down", burning urethra, worsening before menstruation and ovulation contributed, it became difficult to walk over the years, because it seems that my bladder is all moving, shaking, touching other organs, swollen and disgusting. ..
Of course, no conventional medicine helped me, the crops never grew anything, and the urine tests were perfect, so they did the first cystoscopy. During it, the entire bladder is beautiful, only the trigonum area of the bladder (the sides near the urethra) is red, the conclusion is trigonitis chr. Medicines did not help
Urodynamic tests were performed - neurogenic bladder.
After several years of follow-up cystoscopies and several biopsies, the answers are lymphocytic infiltration. It's like chronic cystitis.
Tested installations: vessilen, iArulil, cistystat. Effect 0. Absolutely.
This included many visits to psychiatrists, psychotherapists, acupuncture, all kinds of unconventional treatments, even fortune tellers and psychics, because I didn't know what to turn to.
When nothing helped and my symptoms were and still are horrible, so in 2018 I decided to have my bladder removed. I had and still have a great doctor who cares for me, he is a uro-oncologist, he believes in my symptoms but doesn't know how to treat IC, but he always helped as much as he could. What about the fact that I can't go out anywhere, I had to stop my studies, I can't work anywhere, etc. etc... I think with a bag I will live a much better life. In the morning before the operation, the doctor had a big consultation with psychiatrists, gynecologists, urologists, he started to explain everything about the operation, but finally the gynecologists came to the conclusion that I must give birth to at least one child first, because then, after the operation, conception may be difficult or even impossible. So, the operation had to be postponed, and botulinum toxin injections into the bladder were suggested. So that's what we did, they injected botulinum toxin. Effect 0. Absolutely 0.
No one helps me, absolutely no one...
Next, until I got pregnant, I tried to somehow just exist. And in the interstitial cystitis group I found an article about PRP injections into the bladder. I did 4 injections every month. was a little easier.
And then... in 2022 I found out I'm expecting! Finally! Because maybe after pregnancy I'll be fine, because there are those who say so, like hormones will sort it all out... or at least finally be able to cut out my bladder and throw it in the trash.
So now I am 6 months. I am pregnant, and the symptoms are very severe, I wake up 3-15 times at night, I do not sleep, I am in agony during the day... with the permission of the doctors, I take certain medicines, as well as antidepressants... that's it, I think another 4 months, I will give birth, somehow I will stretch it out , and then we can plan the operation. 🙏 but....now recently I found out about Dr. Stewart Bundrick from USA, microGEN test, embedded infections.
Well, I ordered the microGEN test and I wrote to the doctor, he said he could help me. I am now waiting for the test result and have a telemedicine appointment with Dr. B on June 8th.
My sympthoms are 24/7 12 years now. Without any remission. I'm always feeling bad.
maybe your story is similar?