Prostate :: Chronic Prostatitis For 18 Years - My Experience


Jan 9, 2009

I am 36. I have chronic prostatitis for 18 years, that's half my life. My experience in the disease and treatment follows:

The pain is intense and crippling. I have to be in bed all the time. Intense spasms. Symptoms move from urethra to prostate, back,ass, testicles so when you feel you finished with a symptom there starts another. I also may have difficulty urinating and some time ejaculating. This condition has remained idle for a total of 6 years out of 18 and whenever I feel it is gone I have a really good flare up the very next day. Idle means I am not in pain but I get to wet my pants after urinating.. That is the closest I can have to normal life. My sex life is not good because I get erectile dysfunction when chronic prostatitis is active. When it moves to being idle there is a tendency for restoration of erectile capacity however it is clear to me that I do not respond to visual stimuli any more . Reason for ED is venous leakage. Location of pain is as such that I frequently check both my urinary system and intestines.

Findings: High bladder neck, non typical inflammation of colon, prostate has no infection

Medical checks so far: Urethroscopy, Colonoscopy. prostate, testicular, bladder, kidney ultrasounds. urine and prostate fluid cultures.

All cultures have come back negative. Bladder ultrasound shows some urine remaining after fully urinating.

Experience with medication: I have used antibiotics, a-blockers, mesalazine for my intestines and cortisone (buddy cole). For ED I have used Viagra and Cialis.

When I have flare ups NO medication works to control the pain. Or it may work for some weeks and then all of a sudden stop working. Medication for ED seems to be effective provided my symptoms are either gone or are not too intense. Symptoms come and go and it seems I cannot really control them.

Psychological impact: I am desperate and seriously considering suicide when I have flare ups

Social impact: No friends left. I do not have the energy to move out of bed

Fertility: Thankfully no problems whatsoever. However I am extremely worried whether my offspring will have the same problems as I do.

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Prostate :: TURP Experience

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For the last couple of years been suffering from weak urine stream, having a full night sleep and waking up in the morning with the urge to go wee just to wee a small trickle. I also suffered from time to time having blood in the urine.

Went to see the Urologist, he did some testing, test on the strength on my urine flow (very weak the doc said) he put a camera up my penis to see inside and we could see clearly that my prostate was enlarge and was putting pressure on my bladder which probably explained why sometimes I could see blood on my urine. I have a benign enlarged prostate, no cancer worries which is good.

While I decided if I wanted to have surgery, doctor put me on Avodart. It did help but I wasn't sure if I wanted to take antibiotics for the rest of my life. Avodart temporary reduces the size of the prostate but if you stop taking it, you will still have the same problem again and it will only get worse.

Decided to have the surgery, I had it three weeks ago. spinal block, stayed in hospital one full day with a catheter inserted. Catheter was removed the following day in the morning, had to urine a few times into a container, followed by a scan machine pressed to my belly to see how much urine was left in the bladder. Passed the test and  was allowed to go home that day at midday.

I can see the immediate benefit of the surgery where my urine stream is very strong. When I get up in the morning with a full bladder, no more urine trickle, just a strong urine flow. On the other side, I'm still suffering from post surgery effects, for example, frequent urges to go to the toilet and pee ( I probably go every 40 to 60 minutes) blood on the urine and pain (burning/stinging) every time I have to take a piss. The doctor says is normal for this symptoms to happen and it will take weeks before everything is back to normal. how long?  it depends on the individual. I can get an erection, it feels a bit different and I will suffer from retro ejaculation ( I was warned about this)

Anyone that had Turp done, how long it took until you were pain free? (no blood and pain)  Did you take any medicine to stop the pain or the bleeding?

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Prostate :: Clean Intermittent (self) Catheterization (CIC) - My Experience

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My story in a nutshell. 68 years old with BPH probably since my late 20’s. Watch and Wait strategy with on-and-off trials of Tamsulosin (Flomax) with poor results.  Symptoms were the  normal retention issues resulting in frequent urination with incomplete emptying, urgency, and having to go to the bathroom at night in increasing frequencies. Near the end, two or three uti’s per year often accompanied by gross hematuria (bleeding).  

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Six weeks later my bladder was rehabilitated to the extent they could do a Turp, and the hydronephrosis was gone. After doing some research and a lot of thinking I decided to put off the Turp due to the potential of irreversible side effects, primarily retrograde ejaculation. Two years later, I am still doing CIC while waiting for newer procedures with better outcomes and fewer side effects.

I will detail my experiences with CIC in following posts -- but to summarize, once mastered, it’s a painless five minute procedure that allows you to empty your bladder completely any time you want. With CIC, I therefore have no retention issues, no urgency, and in most cases sleep 6-8 hours through the night without having to get up and go to the bathroom. No UTI’s in over 18 months. And because my bladder has been partially rehabilitated, I can urinate normally about 50% of the time without using the Crede maneuver.  My IPSS Score (International Prostate Symptom Score) would be Zero (the best), albeit with a little mechanical assist.

As of now, nothing that I have read about the various current procedures has tempted me to have an operation. That could, or could not change, in the future, but the nice thing about CIC is that you can stop it any time you want with no repercussions. The caveat is that CIC should be done under the supervision of a doctor who will monitor your BPH as required. Similar to seeing a doctor on a regular basis during a Watch n’ Wait BPH strategy.

I know many of you here have already had operations like Turp, and in most cases people seem pleased with the outcomes. CIC certainly isn’t’ for everyone, and I can understand why someone does not want to carry around a urinary “tool box” with them. On the other hand, with practice, it’s not the traumatic and scary procedure some think. I can honestly say right now that for me it’s about as traumatic as brushing my teeth.

I’m offering my experiences and thoughts on CIC for any of those who haven’t yet made up their mind on an operation. It even can make sense for those of you who don’t need an operation yet, but want to increase their IPSS quality of life score. In fact, wish I had done CIC earlier while on Watchful Waiting. Didn’t realize how much BPH had been affecting me for most of my adult life until I was able to empty my bladder completely.

CIC doesn’t have to be a permanent solution, it could just part of a waiting strategy like I’m on, until better surgical operations are developed with better outcomes and fewer permanent side effects.

For any number of reasons, the majority of urologists don’t seem to offer CIC as an alternative to surgery. My current urologist doesn’t as far as I know, but he’s OK with what I’m doing because it works for me. So, either you have to find a urologist you can convince to go along, or go to some of the major teaching hospitals where CIC is probably more in use and better understood. That is where I was taught, albeit not very well, but that is another story.

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Prostate :: Holmium Laser Enucleation Prostatectomy Experience

Well, I got home this afternoon (Thurs) after the op Tues @ 7 p.m. And things seem to be working OK. No more Tamsulosin needed, so that's one benefit right there. I'll update after a few days as the the other possible effects.

The anesthetist chose a spinal anesthetic, which I was somewhat chary of, preferring to be totally knocked out. Later I remembered that there'd been some research that found that older people who had anesthetics died earlier, so he was right on that score. He also told me that this way I had a smaller number of anesthetics (general meant 14!, this way 1 to 3).

I didn't like the thought of being awake and watching the op, but he assured me I wouldn't feel a thing; I wouldn't see anything; and I'd be able to feed and drink more or less straight afterward rather than many hours later. And so it came to pass. Just numb legs for a while. I really didn't feel anything. All over in about an hour. I even dozed a bit on the op table.

However, that night (Tues) was not good. I had a constant feeling of wanting to sh*t. However, no matter how hard I tried (and I used two laxative suppositories), virtually nothing happened. I later found out this is a side effect of the somewhat larger catheter and balloon that was put in place.

So I found it hard to sleep. But just when I did doze off once, the nurse came in for the fourth time to take my blood pressure (2.00 am?). I was really upset and told her not to do any more (all the previous ones had been OK anyway). But by then I couldn't get back to sleep. So I was wretched all the next day (yesterday).

However, last night I got to sleep about 8:30 pm; and slept right through to breakfast. Bliss.

The surgeon had come in on Weds; told me about the defecation urge origin; said I could go home today if my urine was pretty clear by then and the catheter had come out. I see him again in a couple of weeks, when the result of the biopsy will be with him. He also said only 10% need the op again in 10 years; most are fixed for good. Here's hoping.

I was apprehensive about the removal of the catheter. In the end though, it wasn't too bad. I did most of it myself, easing it and rotating it a bit when it seemed to stick. Whew! Great. Then I pee'd  a couple of times to test things; told I was OK to go. I left.

Home by 3 pm today. Then did a good walk (4 miles) and all's well. Still some blood and bits, but most clear. Good flow. Now to see how I am at night.

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My Experience Of Chronic Bartholin's Abscess And Cyst

After roughly 5 years of experience with these beasts I opted to have my gland removed. I feel as though I've been through hell and back and almost feel a sense of obligation to share my story to those who may be going through the same thing. I know I wanted to know everything about them, so the least I can do is contribute my knowledge of the topic.

*I am NOT a medical professional and I am not dishing out medical advice, just sharing an experience*

I got my first abscess towards the end of my senior year of college. I'm now 27. I had the abscess drained by OB and it did not reappear until several years later. And guess when it decided to return? My honeymoon. My honeymoon was completely ruined. We were in the Dominican Republic and I noticed it starting to swell up the morning after we arrived. By that afternoon I was already starting to feel sluggish and almost like I had the flu. By the third day I was in bed with a 102 degree fever. I was too embarrassed and nervous to see an actual doctor in the Dominican so we went to the resort clinic and I faked a sinus infection knowing they would give me antibiotics. The antibiotics did not help (cephalexin) and I still had several days until I could get a flight back to the states. I writhed in pain for days, I didn't sleep for 3 days straight. I made a half-assed attempt at popping it WITH A NEEDLE. That is what desperation will do to you! The pain was so bad I had to stop and LAY DOWN IN THE AIRPORT when we were trying to get home. Do you know how disgusting and humiliating it is to lay down on the ground in an airport? I refused to get help until we got home. There is just something about getting cut open by someone you don't know in an unfamiliar place that is just unsettling...I cried for the entire day during the course of our 2 flights home. My husband rushed me to the ER as soon as we landed. The doctor lanced the abscess and gave me a word catheter. I felt amazing afterwards. It hurt to sit, but I could work from home and within a week I was back to normal. Story should end there with a happy ending, right?

Wrong.

Fast forward to a few months later and it's back. I tried the sitz baths, but it did not change. When it got big enough and I started to feel that awful flu-ish feeling, I saw my OBGYN who once again lanced it and inserted a catheter. Went home, did my sitz baths, back to normal in a week...

Fast forward another two months and I feel another one coming on. Once again, I got the catheter. Except this time my OB stated she made a larger incision than before. It hurt extremely bad this time. I cried at the pharmacy waiting for my pain meds and cephalexin. I almost couldn't make the drive home. That night, I got chills and noticed I was bleeding way more than normal. I also developed another high fever. By that time I was a veteran with the word catheter so I knew something was wrong. Me and my husband called local hospitals trying to figure out how to classify "too much blood loss". I toughed it out and tried to sleep through the night. I was sure it was infected and that it was bleeding too much. 3 days of bleeding with chills and fever, puss burst through the catheter, almost as if it had re-burst again after it was lanced. It was a horrible, horrible experience.

Later that winter it came back once again...like clockwork, I swear. This time I had a marsupilaization. The procedure seemed almost TOO good to be true. I felt way better afterwards than when I had the catheters. We even went out to eat that night! This blissful feeling lasted for 3 whole months! I know it seems odd, but when my husband and I were intimate after the incision healed and the stitches dissolved, it was better than it was before this whole mess started!

Too good to be true, you say? You are correct.

Here we are...summertime, a little over a year after my honeymoon disaster. On a holiday weekend I felt it coming back. I went and saw my OB and she said she would lance and insert a catheter. At that point, I finally took control of what I thought should be done and declined the catheter. I requested a lancing instead because at that point - I already know it will come back, so why go through the extra pain of the catheter? She lances it, it got infected (despite the antibiotics) and re-burst again a few days later. Same fever, same pain, no sleeping, etc. I cried once again, but this time not just because it hurt, but because I felt broken. I felt like it had officially taken over my life.

Before I left my OB's office the day I got it lanced again, we talked about a more permanent solution. I mentioned removing the gland entirely (because like you people, I troll the internet looking for all possible solutions to this thing) and she shrugged her shoulders and gave me an uneasy look suggesting that removing the gland was not something she would advise. 

The fact that she wouldn't even hear it out made me feel a bit less comfortable with her even though she had been my OB for 14 years! I once again took to google and searched for the BEST gynecological surgeon in my area. I settled on one and set an appointment for a second opinion. My visit with her was borderline inspiring. She was so confident, she explained that I was considered an ideal candidate for the surgery and even went so far as to draw pictures of the actual procedure for me. It sounds weird, I know, but it helped. She sent me on my way and said to call back when I was ready. I called back two months later when I just barely felt another abscess coming on and she put me on the surgery calendar. I met with her the night before and even sat down with the anesthesiologist to get a very clear picture of how everything the next day would run. The surgery went great. I'm 3 weeks post-op and feeling really well. There is still a little pain, but definitely no bleeding. I'm used to healing really quickly so I keep expecting it to not hurt at all, but that is just unrealistic considering a gland was removed from my body. 

I'm not going to tell anyone on here to go out and do the surgery. It is up to you.

Below is what did not work for me. 

Sitz baths

Tea tree oil

Epsom salts

Silicia

Serrapeptase

Probiotics (these are good for you anyway)

Drawing salves

Massaging the area

Steam/warm compresses

Ice packs

Antibiotics

Calamine lotion

The Bartholin Cyst Miracle e-book

Here is a little procedure cheat-sheet for those who may be unfamiliar:

Lancing - the area is numbed with a topical anesthetic, again with local anesthetic and a small incision is made into the abscess/cyst to allow the built up puss to drain. **soooo gross**

Word Catheter - incision is made similar to the above, except a small tube with a balloon on the end is inserted into the hole. This allows the hole to remain open and encourages the cyst to continue to drain. My first doctor said the catheter should stay in place for a few days. The internet told me 4 weeks. My second doctor that performed my excision also said it should have stayed in for at least a few weeks.

Marsupialization - incision is made per the above and instead stitched open to allow the hole to remain open. From what I've heard, this has been a permanent solution for some! Not for me, but I definitely preferred it over the catheter.

Gland Excision - exactly that. The entire gland is removed. Recovery time is around 6 weeks, pain is mild, I was also warned that disfigurement is a possibility, but that was not the case for me. Yes, I've looked at it. 

It may be too early to tell if my surgery has a good prognosis, however, my doctor did say she was able to remove almost all of the gland. It is important to know that the gland is so small and the area is so vascular, that it can sometimes be difficult for the surgeon to remove the entire mechanism. Understanding how much was removed will help you better figure out your chance for recurrence. 

Well friends, I wish everyone on here the best of luck with this awful condition. It blows my mind that this disorder doesn't get a whole lot of attention considering how life altering it really can be. I leave you with just a few of my mantras for battling this crap: you are not alone, you are not broken, and you are not crazy. Do your research, don't be afraid to get second opinions and do what you feel is best for your body and your well being. 

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