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Author Topic: Confused about my Peyronies (and Prostatitis?) after 2 doctors  (Read 1192 times)

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Krime

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Confused about my Peyronies (and Prostatitis?) after 2 doctors
« on: January 25, 2018, 01:36:56 AM »

Hey everyone, I've been reading up on this board over the last couple months and thought it was time to make a first post. I'm getting desperate.

I'm 33 and started noticing an upwards curve and painful erection in late September of last year for the first time. Prior to this, there had been a handful of experiences over the years with my wife where I'd bent my penis during sex, but never enough that I ever stopped (just a brief hold to wait for the pain to subside). The most recent was probably in August or September. Prior to the symptoms, I'd also noticed in one instance during masturbation that the top of my penis shaft hurt, and I noticed some red inflammation on the surface.

So now here we are about 4 months since the onset of the symptoms. The curve has progressed upwards and now slightly to the right. It's a hinge like effect and I'd guess about 20 degrees. I noticed the raised bump on the top portion of my shaft (where the inflammation was previously) which led me to diagnose myself with Peyronies early on via a quick web search of symptoms. I've since noticed perpendicular bands (almost like veins) along the shaft that go from the top to the left side (there are 2 well defined ones, and another above). It's between the two where the curve is happening. The odd thing is that since these bands are on the left, I'd imagine my curve to be upwards and to the left, not the right as it is. I've also noticed some slight hour glass shape forming between the two bands.

I've seen 2 urologists at this point. The first was a very young doctor that was a fill in for the most reputable peyronies specialist in my area. He didn't spend much time with me, saw the picture (at this point the curve was very subtle) and told me that the best thing to do is wait it out and go from there. Since I was desperate to be as proactive as possible to mitigate the disease, he prescribed Pentoxifylline (twice daily), low dose amount of Viagara, and L'Arginine but he recommended against taking them as none of them were proven to actually work. He also mentioned traction devices but discounted them immediately as they take to much time, and that injections may run the risk of forming additional scar tissue and making it worse. He did say if I wanted the injections he would do them during a follow up visit. Interestingly at the time, I also noticed a non localized burning like ache in my penis (when flaccid) for a few days after he'd stretched it during the assessment.

I left and got the Pentoxifylline and L'Arginine as the Viagara made me nervous. Being generally averse to medications (I always seem to find a side effect), I started with the Pentoxifylline on its own first along with 400UI of vitamin D. I took it for about 2 weeks and noticed heart palpitations and stopped. My doctor mentioned I could try and ease back into half a dose and see how it goes which I did and have been doing for the last month or so (never upping it to the twice daily, at least not yet). I also never started with the L'Arginine as I was skeptical from reading fellow members thoughts on it.

Most of the time I've been getting pretty bad general aches that are painful when flaccid. It's a different ache than the type I'd get during an erection, as this one is often characterized by burning sensations and the pain moves from different areas in my penis (mainly the underside/urethra) and radiates down all the way to my scrotum and anus. I've had this type of pain probably 4 times since my first urologist appointment in November, and it lasts for around a week before subsiding.

Desperate to try something more I got an X4 Labs extender and waiting for a gap between the flaccid flair up pains to use it. I used it for about 1 week for 2-3 hours a day and then started getting the flaccid aches again, which made me stop using it for fear of making things worse.

This takes us to 2 weeks ago when I saw a second urologist. This doctor was much older, but what put me off was that he told me I didn't have peyronies... yet. He said the curve would be much worse and that it would need to have hardened plaque (the permanent state) to constitute it. He was of the mindset that I'd injured my penis and all it needed was time to heal, and that I should stay away from the traction device or anything else as I'd only re-injure the tissues and make things worse. When I asked him about Pentoxifylinne he didn't know about it, went online to learn and then said that it's pointless for my needs and to stop taking it. Where I did find him helpful was when I mentioned the ache and burning sensation when flaccid. He did a prostate exam and it was excruciating - a very sharp pain that lasted about 2 minutes after he was done. He said I had prostate inflammation (Prostatitis) and that I need to take antibiotics (Ciprofloxacin) for 15 days to clear the inflammation. I told him how these symptoms had been coming on and off starting months ago and that they were alongside my curvature and peyronies pain. He didn't know of any correlation.

So now, I'm 3 days into my antibiotics for the Prostatitis, am still taking my half dose of Pentoxifylinne and 400UI of vitamin D. I've stopped using the traction device as he's told me it'll only make things worse. I'm stuck between a rock and a hard place here as if I listen to the doctors, I shouldn't do anything in terms of peyronies treatment, but I want to be proactive to mitigate the long term effects. I've also noticed I've lost at least a quarter inch in erect length so far.

Any help/advice would be much appreciated. I have follow-ups with both doctors (one in April, the other May) but am not confident in seeing them again. The most reputable urologists that I'd like to see are scheduling 10 months out.

Thanks.
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pey ron

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Re: Confused about my Peyronies (and Prostatitis?) after 2 doctors
« Reply #1 on: January 25, 2018, 03:09:33 AM »

He said the curve would be much worse

That's BS. I have scarring of the entire septum and I am afraid I've had it for several years before I noticed even the slightest bend.
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Paolo

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Re: Confused about my Peyronies (and Prostatitis?) after 2 doctors
« Reply #2 on: January 25, 2018, 03:42:28 AM »

Hi Krime, take vitamin D3 with K2 (mk7) included in one pill. Also consider ALC but take it with Alpha Lipoic Acid included in same pill.
D3 with K2 helps keep calcium where it should be and out of soft tissues, that would include (of course) your penis.

ALC helps somewhat with pain. Also consider probiotics after finishing the antibiotic  :)

Please keep posting and welcome  :)
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JohnWright

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Re: Confused about my Peyronies (and Prostatitis?) after 2 doctors
« Reply #3 on: January 25, 2018, 08:44:03 AM »

Welcome to the Forum. Sorry you need to be here.

Caution: I do not have any friends or loved ones willing to take Cipro. It can have devastating short and long-term consequences. Pay attention to the slightest new signal your body gives you. AND, you wouldn't regret eating lots of probiotics starting now.
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Tsanchez12369

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Re: Confused about my Peyronies (and Prostatitis?) after 2 doctors
« Reply #4 on: January 25, 2018, 09:33:43 AM »

Hello, it sounds as if you may have more than one medical issue going on which may prevent you from aggressively treating the peyronies until the others are resolved.  Definitely treat the protasitis.  Meanwhile, get an appointment with the peyronies specialist even if it’s months out and ask to be called if when they have a cancellation (even call early in the morning to see if they have any cancellations called in overnight for the day).  It does sound like you’ve caught peyronies early.  Consider the low dose Viagra or cialis daily as it can soften the plaque.  If you can’t tolerate the pentox consider substituting CoQ10-or add to your low dose pentox.  Diclofenac sodium gel may help with pain.  Sorry you’re going through all this, stay hopeful and active in getting the best treatment.  Glad you found the forum.
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betterbend

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Re: Confused about my Peyronies (and Prostatitis?) after 2 doctors
« Reply #5 on: January 25, 2018, 01:05:10 PM »

Krime - I am more and more convinced that many urologists don't bother to treat Peyronies, or keep up on any of the research, which is a pretty small amount.  If you have a reputable peyronies specialist then try to get an appt with him.  You can use L-citrulline in place of l-arginine, its probably a better alternative because of the way it metabolizes in the body.  I am using 400mg coq10.  Its fairly expensive, but that was the dose researched for peyronies in one of the studies. 

It is confusing because there is no standard treatment regimen that works on a majority of the men.  They have to find what works, and most regular Uro's dont want to be bothered with that.  Its up to you and a good doctor to figure this out ...
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Tsanchez12369

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Re: Confused about my Peyronies (and Prostatitis?) after 2 doctors
« Reply #6 on: January 25, 2018, 02:07:00 PM »

Use a straw or capsules for l-citrulline as acidic to teeth enamel
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Krime

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Re: Confused about my Peyronies (and Prostatitis?) after 2 doctors
« Reply #7 on: January 25, 2018, 09:43:38 PM »

Thanks everyone for the responses and welcome, much appreciated.

Interesting about the Ciprofloxacin. I've been on it for 6 days so far and today I noticed a slight numbness and tingling feeling in my right arm. I spoke with my doctor (who hadn't heard of this case) and he advised that I stop taking it for two days and then get into it again on Sunday and call him when he's back in office on Monday. I took my last one for the day just now, although I probably should have skipped it all together. I've heard you're suppose to continue antibiotics all the way through, so stopping it makes me nervous. The pain in my pelvic floor all day today was intense. This pain that comes when flaccid from the prostatitis is much worse than the Peyronies pain when erect (at least so far). I find it really odd that I got both symptoms (peyronies and prostatitis) around the same time, it really feels like they're completely somehow connected, but haven't heard of any correlation.

Apparently the Urologist I saw last week never forwarded his notes to my doctor, so now I've got to chase them to get on that. Another red flag there.

Thanks for the tips regarding the supplements. To be clear, is coq10 and l-citrulline the same thing? I was hesitant taking all these meds (pentox + L'arginine + viagara) as it seems like a lot of things that can mess with your heart and the natural flow of things. On top of that my insurance plan won't cover the viagara and it's $300 (CDN) to fill the prescription of the no name variety. I was planning on continuing the half dose of Pentox since from what I've read it seems to be the most consistently used supplement for those in the active phase of Peyronies.

Regarding probiotics, do I need to wait until after the antibiotics (assuming I do continue them on Sunday) or can I take them alongside. Also wondering what else I can take for the prostatitis if I need to stay off the Cipro. I asked my doctor about how to find out if I have bacterial or non-bacterial and he said it's hard to tell, even from a urine sample. So I may be taking this Cipro antibiotic for absolutely nothing if it is the non-bacterial kind.

It's hard playing doctor but glad I found this community.
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Tsanchez12369

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Re: Confused about my Peyronies (and Prostatitis?) after 2 doctors
« Reply #8 on: January 25, 2018, 11:04:30 PM »

I’d follow the doc re the antibiotic.  Try buying generic tadalafil peptide (cialis online) pretty cheap.  Take the probiotics with and after the antibiotic.
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Fsnco

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Re: Confused about my Peyronies (and Prostatitis?) after 2 doctors
« Reply #9 on: January 25, 2018, 11:32:04 PM »

My peyronies started as imflamation at the urethra with localized pain. Started with a GP who gave me Zythromax for urethritis which did nothing. Went to a Uro who gave me multiple antibiotics that ran the gamut for about 3 months which did nothing for the imflamation. Finally started noticing an upward and left curve and finally got an MRI that confirmed peyronies.

First I will echo what others said, start a strong probiotic now. My guts are brutalized by the 7+ antibiotics for 3 months. 400mg Pentax 3 times daily doesn't bother me in the least since my guts couldn't get much worse.

Second, I am on pentox as stated plus CoQ10 and ALC. last week I was traveling and ran out of ALC and the pain and lumpiness came back. Started back up on ALC this week and things are much better.  I think anecdotally many on here can identify one or more regimens that seem to help them more than others.
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NeoV

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Re: Confused about my Peyronies (and Prostatitis?) after 2 doctors
« Reply #10 on: January 26, 2018, 08:32:18 AM »

How long have you abstained from sex?

I had the exact symptoms, and it went away after long periods of abstinence.

betterbend

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Re: Confused about my Peyronies (and Prostatitis?) after 2 doctors
« Reply #11 on: January 26, 2018, 12:47:03 PM »


Thanks for the tips regarding the supplements. To be clear, is coq10 and l-citrulline the same thing? I was hesitant taking all these meds (pentox + L'arginine + viagara) as it seems like a lot of things that can mess with your heart and the natural flow of things. On top of that my insurance plan won't cover the viagara and it's $300 (CDN) to fill the prescription of the no name variety. I was planning on continuing the half dose of Pentox since from what I've read it seems to be the most consistently used supplement for those in the active phase of Peyronies.



No, L-citrulline is the same as L-arginine.  When you take l-arginine alot of it get metabolized into a useless form before it hits the blood stream.  L-citrulline doesnt have that issue.  There is a generic version of Viagra now, although it is still expensive (about 1/2 the price).  If your doctor is willing, sildenafil is available in 20 mg tablet, much cheaper, but its not indicated for ED so most doctors wont write for it for liability reasons, and it cant be promoted for that use.  If your doctor is good about that you can ask him to write for it.  He may not even know about it.  coq10 is different so you can take citrulline and coq10.
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Byre

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Re: Confused about my Peyronies (and Prostatitis?) after 2 doctors
« Reply #12 on: January 27, 2018, 11:59:45 AM »

Cipro...can have devastating short and long-term consequences.... AND, you wouldn't regret eating lots of probiotics starting now.
YES and YES.

Cipro can definitely have devastating consequences (which can occur very soon after beginning the medication) - from ruptured tendons - especially damaged Achilles tendons -  potentially permanently crippling - to severe C. difficile infection of the intestines (high-quality probiotics should be taken between doses of Cipro or Levaquin, esp. probiotics that include saccharomyces boulardii), to life-threatening induced "cold turkey" withdrawal from any benzodiazepine one might be taking - e.g. Valium (diazepam), Xanax (alprazolam), Klonopin (clonazepam), Ativan (lorazepam), etc.

Cipro and the related drug Levaquin both come with "black box" warnings ("high alerts") about these possibly severe side effects. Cipro and Levaquin are in the category of drugs called "fluoroquinolones" or just "quinolones" for short.

“As of 2016, the U.S. FDA recommended that ‘serious side effects associated with fluoroquinolone antibacterial drugs generally outweigh the benefits for patients with acute sinusitis, acute bronchitis, and uncomplicated urinary tract infections who have other treatment options. For patients with these conditions, fluoroquinolones should be reserved for those who do not have alternative treatment options.’" --https://www.fda.gov/drugs/drugsafety/ucm500143.htm FDA Drug Safety Communication: FDA Advises Restricting Fluoroquinolone Antibiotic Use For Certain Uncomplicated Infections; Warns About Disabling Side Effects That Can Occur

“Administration of quinolone antibiotics to a benzodiazepine dependent individual can precipitate acute benzodiazepine withdrawal symptoms due to quinolones displacing benzodiazepines from their binding site.”
--Fish DN (2001). "Fluoroquinolone Adverse Effects and Drug Interactions". Pharmacotherapy, Volume 21, Issue 10P2, October 2001. Pages 253S–272S.

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Krime

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Re: Confused about my Peyronies (and Prostatitis?) after 2 doctors
« Reply #13 on: January 27, 2018, 06:41:49 PM »

My peyronies started as imflamation at the urethra with localized pain. Started with a GP who gave me Zythromax for urethritis which did nothing. Went to a Uro who gave me multiple antibiotics that ran the gamut for about 3 months which did nothing for the imflamation. Finally started noticing an upward and left curve and finally got an MRI that confirmed peyronies.

First I will echo what others said, start a strong probiotic now. My guts are brutalized by the 7+ antibiotics for 3 months. 400mg Pentax 3 times daily doesn't bother me in the least since my guts couldn't get much worse.

Second, I am on pentox as stated plus CoQ10 and ALC. last week I was traveling and ran out of ALC and the pain and lumpiness came back. Started back up on ALC this week and things are much better.  I think anecdotally many on here can identify one or more regimens that seem to help them more than others.

That's brutal. Since I didn't have the prostate inflammation until the onset of my Peyronies symptoms, I didn't realize that it could cause peyronies which sounds like is what happened with you. That's concerning, since I already had peyronies and now Ive got the inflammation from prostatitis which sounds like it can make it even worse. Brutal. The burning sensation is getting progressively worse to the point that it's always painful with no releif (getting worse even since I started taking the Cipro). I've stopped for 2 days and will resume tomorrow (on Sunday) as my doctor mentioned. Turns out my wife already had probiotics for me, so I started taking it yesterday.

How long have you abstained from sex?

I had the exact symptoms, and it went away after long periods of abstinence.

I haven't. I'm having sex once week or once every 2 weeks and trying to masturbate as all doctors have said to keep it active and erect. I also read that with prostatitis, it's good to ejaculate often as well. Were you advised differently?

 
No, L-citrulline is the same as L-arginine.  When you take l-arginine alot of it get metabolized into a useless form before it hits the blood stream.  L-citrulline doesnt have that issue.  There is a generic version of Viagra now, although it is still expensive (about 1/2 the price).  If your doctor is willing, sildenafil is available in 20 mg tablet, much cheaper, but its not indicated for ED so most doctors wont write for it for liability reasons, and it cant be promoted for that use.  If your doctor is good about that you can ask him to write for it.  He may not even know about it.  coq10 is different so you can take citrulline and coq10.

Okay, thanks for clarifying.

YES and YES.

Cipro can definitely have devastating consequences (which can occur very soon after beginning the medication) - from ruptured tendons - especially damaged Achilles tendons -  potentially permanently crippling - to severe C. difficile infection of the intestines (high-quality probiotics should be taken between doses of Cipro or Levaquin, esp. probiotics that include saccharomyces boulardii), to life-threatening induced "cold turkey" withdrawal from any benzodiazepine one might be taking - e.g. Valium (diazepam), Xanax (alprozolam), Klonopin (clonazepam), Ativan (lorazepam), etc.

Cipro and the related drug Levaquin both come with "black box" warnings ("high alerts") about these possibly severe side effects. Cipro and Levaquin are in the category of drugs called "fluoroquinolones" or just "quinolones" for short.

“As of 2016, the U.S. FDA recommended that ‘serious side effects associated with fluoroquinolone antibacterial drugs generally outweigh the benefits for patients with acute sinusitis, acute bronchitis, and uncomplicated urinary tract infections who have other treatment options. For patients with these conditions, fluoroquinolones should be reserved for those who do not have alternative treatment options.’" --https://www.fda.gov/drugs/drugsafety/ucm500143.htm FDA Drug Safety Communication: FDA Advises Restricting Fluoroquinolone Antibiotic Use For Certain Uncomplicated Infections; Warns About Disabling Side Effects That Can Occur

“Administration of quinolone antibiotics to a benzodiazepine dependent individual can precipitate acute benzodiazepine withdrawal symptoms due to quinolones displacing benzodiazepines from their binding site.”
--Fish DN (2001). "Fluoroquinolone Adverse Effects and Drug Interactions". Pharmacotherapy, Volume 21, Issue 10P2, October 2001. Pages 253S–272S.



Well that's concerning and makes me not want to start up on them again tomorrow as my doctor's instructed. I've heard alot of people using Cipro with no complications so this is surprising. I'm also super desperate since the constant pain from the prostatitis is getting intense and constant (all day and night). What else could I take for this if I'm not doing the Cipro or a related antibiotic?

FYI, the probiotics I just started taking are by Usana and ingredients mentioned are: Zea Mays L. Syrup extract, Inulin, Lactobacillus rhamnosus,
LGG® and Bifidobacterium, BB-12®, Silicon Dioxide.


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Krime

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Re: Confused about my Peyronies (and Prostatitis?) after 2 doctors
« Reply #14 on: January 27, 2018, 07:20:16 PM »

Also forgot to mention some good news that came to light yesterday. That reputable urologist I was originally trying to meet with (Dr. Ethan Grober in Toronto) who's waiting list was around 9 months+, just fit me in for an appointment next Wednesday. Super lucky to get the news from his receptionist. I'm going to put together a list of questions to prep myself for the appointment.
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Byre

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Re: Confused about my Peyronies (and Prostatitis?) after 2 doctors
« Reply #15 on: January 27, 2018, 09:45:42 PM »

Well that's concerning and makes me not want to start up on them again tomorrow as my doctor's instructed. I've heard alot of people using Cipro with no complications so this is surprising. I'm also super desperate since the constant pain from the prostatitis is getting intense and constant (all day and night). What else could I take for this if I'm not doing the Cipro or a related antibiotic?
Yes, it scared the s*** out of me when I was shown the black box warning and did some research on Cipro. The stats say that the serious side effects occur in one person out of 5000, but I was not willing to take that risk because the damage can be irreversible - and with my luck, I would be that one in 5000 (that's really not such good odds when you consider the possibly permanent damage!). And the serious side effects can set in immediately or weeks after starting therapy - tendons can even snap months after Cipro therapy has ended!!

I was put instead on Bactrim DS (double strength) for 28 days as I too had developed chronic, increasingly painful bacterial prostatitis along with Peyronies. Unfortunately, the connection seems all too common (I was wondering about that, but now I feel more certain about it reading these posts). Bactrim DS can knock the energy out of you (and you may get a LOT more sleep than you want to), and you have to be careful to keep your salt intake up a bit higher and your potassium intake lower. Bactrim dumps your sodium and chloride and retains potassium. Good ways to limit your potassium is to eliminate all legumes (all beans), all types of potatoes, beet greens (the highest potassium of all), avocados, and spinach (loaded with potassium). As far as meats go, poultry, cod, pollack, flounder and sole are much lower in potassium than beef, pork, and salmon (which are of course are my favorite meats). Choose cauliflower over broccoli or brussel sprouts, as the latter two are higher in potassium. Kale is an excellent choice - lower in potassium, but high in many other nutrients (but collards and chard are high in potassium). Brown rice is a good choice.

Too much potassium causes the syndrome called hyperkalemia, which manifests as tingling hands and feets that may turn numb, and a slower than usual heart rate (and paradoxically sometimes a faster heart rate) - if not controlled it can become serious, but I had only minor symptoms when I started restricting my diet - it was worth it to get rid of the prostate/UT infection!!! (My urinanalysis yesterday showed ZERO infection! Yay!) I also was prescribed a selective anti-inflammatory, Mobic (meloxicam), which is similar to Celebrex, but has apparently had fewer side effects. It allowed me to sleep most of the night without getting up to pee every few hours. I took 7.5 to 15 mg before bed and took 650mg to 1300mg of Tylenol during the day (meloxicam can make you pretty drowsy) to control the urgency.
Quote
FYI, the probiotics I just started taking are by Usana and ingredients mentioned are: Zea Mays L. Syrup extract, Inulin, Lactobacillus rhamnosus, LGG® and Bifidobacterium, BB-12®, Silicon Dioxide.
Personally, I would encourage an even greater number of probiotic strains (but don't go cheap! - a cheap probiotic can be worse than none at all). I took a probiotic prescribed by my doctor that had L. acidophilus, L. paracasei, L. platarum, L. rhamnosus, B. lactis, B. bifidum, and saccharomyces boulardii (a beneficial yeast that actually prevents harmful yeast from settling into your intestines). I never developed any intestinal problems at all.

Hope this help! Best of luck in beating this ordeal you're going through!
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Krime

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Re: Confused about my Peyronies (and Prostatitis?) after 2 doctors
« Reply #16 on: January 28, 2018, 04:21:12 PM »

Thanks for the detailed response Byre. Based on it, I've decided to stop the Cipro alltogether since it's not worth the risk. I also find it suspect that the pain got progressively worse as I started on Cirpo, as well as the slight numbing in my right arm and hand. I'll call my doctor tomorrow to see what he advises until I wait for the Urologist appointment on Wednesday.

I was really on the fence this morning since the pain has been pretty intense and constant the last 4 or so days, I really need to take something for it. Hopefully I can get on another antibiotic soon, although I'm wondering how long it takes for the Cipro to get out of your system, and if it's safe to try something else so soon afterwards.
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LWillisjr

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Re: Confused about my Peyronies (and Prostatitis?) after 2 doctors
« Reply #17 on: January 28, 2018, 05:09:29 PM »

This is now locked as an introductory topic. Please feel free to post in other areas of of the forum.
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Les - 10 yrs Peyronies Disease free
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