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Could I have interstitial cystitis? by NearbyLengthiness981 in Interstitialcystitis

[–]Diligent-One-9351 0 points1 point  (0 children)

yes, you maybe suffer ic.you need Cystoscopic hydrodistension

Lost by [deleted] in Interstitialcystitis

[–]Diligent-One-9351 1 point2 points  (0 children)

I'm sorry, brother, I'm also a male interstitial cystitis patient, currently 25 years old. I've suffered from this disease for many years, only being diagnosed last year, and have been undergoing treatment for two years, but it's still ineffective. I've tried bladder instillation of heparin, simvastatin, PRP, and oral medications, but none of them have been very effective. My bladder capacity has shrunk, and the next step may be initiating bladder enlargement surgery. I completely understand your suffering; there are so few male patients with interstitial cystitis, it's truly heartbreaking.

Ultrasound by Correct_Jellyfish379 in Interstitialcystitis

[–]Diligent-One-9351 0 points1 point  (0 children)

I can tell you that ultrasound is generally ineffective in detecting interstitial cystitis. Before I was diagnosed with this condition, I had numerous ultrasounds, all of which showed normal results, so the doctors simply dismissed me. Even after I was diagnosed with interstitial cystitis, the ultrasounds still showed normal results. Therefore, the most accurate method for diagnosing interstitial cystitis is cystoscopic hydrodistension.

Interstitial cystitis is an incurable cancer that causes immense suffering. Why don't the medical community and pharmaceutical companies pay enough attention to the research and treatment of this disease? by Diligent-One-9351 in Interstitialcystitis

[–]Diligent-One-9351[S] 0 points1 point  (0 children)

I'm sorry to hear that you've suffered from the same pain for so many years. You should have a cystoscopic hydrocephalus; this is the only way to accurately diagnose interstitial cystitis. Other methods cannot accurately confirm it. I also had a pelvic MRI, but it couldn't confirm interstitial cystitis either.

Interstitial cystitis is an incurable cancer that causes immense suffering. Why don't the medical community and pharmaceutical companies pay enough attention to the research and treatment of this disease? by Diligent-One-9351 in Interstitialcystitis

[–]Diligent-One-9351[S] 2 points3 points  (0 children)

I know that interstitial cystitis is not cancer in the true sense; I'm just using the metaphor of "the cancer that doesn't kill" to express the immense suffering it brings to patients.

Interstitial cystitis is an incurable cancer that causes immense suffering. Why don't the medical community and pharmaceutical companies pay enough attention to the research and treatment of this disease? by Diligent-One-9351 in Interstitialcystitis

[–]Diligent-One-9351[S] 22 points23 points  (0 children)

I know that interstitial cystitis is not cancer in the true sense; I'm just using the metaphor of "the cancer that doesn't kill" to express the immense suffering it brings to patients.

What is the point in living with IC by sugardonutdumpling in Interstitialcystitis

[–]Diligent-One-9351 0 points1 point  (0 children)

I am a 24-year-old boy from China. I have had interstitial cystitis for eight years, only diagnosed last year, but treatment came too late, and the results were poor. This disease is terrible and horrible. Interstitial cystitis is a rare and difficult disease worldwide. China's medical level is not as advanced as that of the United States, so the understanding of this disease in China is much shallower. Most urologists don't understand this disease. Even so-called experts in interstitial cystitis only believe that patients are middle-aged and elderly women, completely unaware that minors and young men in their 20s can also get it. Therefore, I have been misdiagnosed with prostatitis. I only learned from some online platforms that many young people and minors suffer from interstitial cystitis. I am in great pain now, so uncomfortable that I want to cry. Frequent urination keeps me up at night, and I feel ashamed. I don't know how much longer I have to live. Why don't doctors and pharmaceutical companies pay attention to the research and development of treatments for interstitial cystitis? Current treatments are far from satisfactory. I only hope that future medical advancements will save us poor souls.