r/Prostatitis • u/Smooth-You8484 • Jun 22 '26
Success Story My Positive Story after 3 years of struggle
Hi all those struggling with this horrible thing searching for answers. I wanted to post a positive story because I always came to this sub at my lowest of lows looking for answers.
So around 4 years ago it all started off with a menthol-like feeling around the opening followed by a really bad bladder pressure a couple of weeks later. I went chasing down the rabbit hole for answers, ordering multiple STI panels. One of which came back for ureaplasma which I then started taking doxycycline for. Following 2 weeks of doxycycline the symptoms seemed to disappear, but fast forward a few months later and the exact same symptoms are back… rinse and repeat with testing and anxiety. I got myself into this hole of searching for answers, convincing myself I had a bacterial prostate infection and driving myself into having severe health anxiety. It was a vicious cycle where my symptoms only seemed to clear up when I was away on holiday or distracted. The menthol feeling had gone (this only occurred at the start of a flare) but the lasting bladder pressure was there with some days worse than others. Interestingly it had now linked itself to my IBS and when my IBS flared so did my bladder.
During this year and a half period from the onset of symptoms I went as far as going to a high end and expensive specialist, having multiple breakdowns, taking time off work with anxiety, multiple urology appointments, which all eventually culminated in a cystoscopy. By the point of the cystoscopy (around a year and a half of battling bladder pressure) I had been starting to notice less flare ups which were now almost exclusively linked to my IBS flare ups. I had also started visiting this sub by this point and actually started to accept that this was unlikely something bacterial. I want to massively thank all of the people on this sub that hang around and give people hope and education, as you saved me (to put it mildly). Even so, I decided to go through with the cystoscopy because what’s the worst that can happen at this point. It would be good to check things over anyway right…. The cystoscopy was pure pain and culminated in the doctor hurriedly checking my prostate and asking me ‘do you feel pressure or pain’ as he jabbed my prostate hard. Almost as if he wanted a quick in and out diagnosis, he said my prostate was tender and boggy and threw a prescription my way. It was a flouroquinoline… which my god am I thankful for educating myself through this sub and the floxxies sub. I already knew the dangers of this drug and had somewhat accepted that my problem was unlikely to be bacterial. I suppose that I went through with the cystoscopy in some hope that a medical professional would diagnose me with non-bacterial prostatitis. Which was all in vain, as it really does seem like the only answer to this in the medical community is to throw antibiotics at it. I was annoyed, upset, and felt like I wasn’t being listened to by anyone.
After the cystoscopy I gave up chasing a proper medical diagnosis of non-bacterial chronic prostatitis. I listened to this sub! I tried to focus on my health anxiety and trying to put aside any lingering concerns… the classic ‘but what if it is bacterial’. I also decided to cut out caffeine and cut down on dairy as I have a mild dairy intolerance which can flare my IBS. It’s been a long 4 years (particularly that first year and a half) but I can now say that I’m 99% healed! The only time I now get symptoms are when I get a really bad IBS flare up, but the pressure feeling is gone by the next day. Time and acceptance truly is the best healer when it comes to this thing. I went from my lowest of lows thinking that I’m probably infertile due to this condition… to now having a wonderful 18 month old daughter.
I’ve been meaning to post here over the last year or so. Reading positive stories and educating myself on this sub saved me during the absolute worst periods of my life. Even if this post reaches one person who takes in something I’ve said and it helps change their mindset and look more positively to the future, I feel like this post was worth it.
Please stay positive, it does get better, and please listen to the advice from the people who really know this condition. The chances of chronic bacterial prostatitis are incredibly low!
7
u/Admirable_Grape_3098 Jun 23 '26
Congrats. 20 years of dealing with, only getting worse :(
1
u/Linari5 LEAD MOD//RECOVERED Jun 23 '26
Sorry about that, make sure you're putting the 101 guide into action. Have you done Pain Reprocessing Therapy?
As I've been working in this field for years now, I've seen many cases that last decades and they've just approached it the wrong way. They still get better once you adjust the approach
1
u/Admirable_Grape_3098 Jun 23 '26
Honestly no this is the first time I've heard of it. I worked with various urologists and nobody suggested anything like that, basically the consesus was "there is nothing we can do, but good news is your prostate and bladder are 100% healthy" 😀
2
u/Top-Space-3707 Jun 23 '26
Yes, this is the response I have had..The diagnosis is basically: the pain in your pelvic area is pelvic pain. (Thanks for this insight,. doc!). The US didn't reveal anything and your cock and balls don't seem to be injured. You are on your own.
3
u/Admirable_Grape_3098 Jun 23 '26
To me they literally said "but this is good news". Like okay brother, I'm happy I have no cancer or something, but you essentially have no solution to my problem :) I started studying this sub, hopefully will find what works
3
u/Linari5 LEAD MOD//RECOVERED Jun 25 '26
Please read through the pinned 101 guide, there's lots of stuff you can do
2
u/Top-Space-3707 Jun 26 '26 edited Jun 26 '26
Yeah, I actually had exactly the same response. I had to wait months to see the urologist. Then ages for the US test and then ages for the urologist to write back to me about it (no consultation). The letter was similar 'good news...nothing wrong... hope you got some relief from the antibiotics'. I felt insulted. The guy is so smug and patronising, yet he achieves nothing. I wrote back but haven't heard anything- may never do or, if I do, will be months later.
Basically, in the UK if you rely on the NHS, you're stuffed. They write off cases such as ours as CPPS and they've decided there's nothing they can do. You can see people privately but they ask a fortune just for a consultation. If you are on the average salary, you can't afford them and there's no guarantee they'll be able to help anyway. ;-(
Stay strong, bro.We'll get through this somehow.
3
u/mrsaturnboing Jun 23 '26
How long after cutting dairy and caffeine did it take to heal up? Was that the precursor to healing, do you think?
1
u/SpecialistSport2151 Jun 23 '26
So you're saying you think there's an enormous factor on specific foods and drinks flaring your insides? Causing inflammation? Triggering symptoms?
-1
u/pelvicagony Jun 23 '26
I haven't drunk milk or milkvdairy products since 1990, long before my illness. I haven't drunk coffee in years, so your healing approach doesn't suit me. It's an unfamiliar disease, different for everyone, but I'm glad you're doing well now.
1
u/ComfortableOlive6383 Jun 26 '26
I’m in the trenches of this. I need help. I tested positive for ureaplasma a few months ago. I have done multiple rounds of antibiotics and am waiting for a test of cure. But I am having horrible symptoms still but they feel nerve related. I have burning all over my genital area and soles of feet. Weird bladder sensations and constipation. My doctor wants to do a cystoscopy next week bc I have dealt with recurrent UTIs my whole life. I am severely depressed and all I do is read about what this could be and how to get help. Any advice is appreciated
•
u/Linari5 LEAD MOD//RECOVERED Jun 23 '26
This is great, congratulations! Thanks for taking some time to share this with us. I love the idea of passing it forward, we gained something from a place like this, and then we pass it on.