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 Newly Diagnosed 
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Joined: Wed Oct 24, 2018 11:19 am
Posts: 37
Post Newly Diagnosed
About 5 years ago, when I was 34, I had slight pain at the tip of my penis. It was noticeable when I moved. I didn't have any other symptoms. I went to a urologist, he felt my prostate and said it was inflamed. He gave me a rectal ultrasound and confirmed the inflammation. He gave me an antibiotic (I don't remember which) and an anti-inflammatory and I was all better in two weeks.

About 2 years ago, when I was 37, I had slight pain at the tip of my penis. It was noticeable when I moved. I didn't have any other symptoms. I went to the same urologist and he felt my prostate but said it was fine. I did not want to take the rectal ultrasound because I didn't know anything and I asked for antibiotics and anti-inflammatories. He gave me Amoxicillan and Naproxen and I was all better in two weeks.

On Sunday, now 39 years old, I had slight pain at the tip of the penis. I also have a little bit of dribbling when I finish urinating - urine dribbles into my underwear even though I shake myself clean after I urinate. I went back to the urologist but this time I did some research and had questions. He felt my prostate and said it was fine and he also said I don't need a rectal ultrasound. He gave me Cipro (15 days) and Naproxen (10 days). He said I had “semi-acute prostatitis.” This term doesn't exist on Google!If it was acute I would have felt pain when he touched the prostate.

He also said he gives all prostatitis patients antibiotics and anti-inflammatories. He does not check the urine for bacteria because "it doesn't show up." He did not ask for a sample of my semen or of prostate fluid.

My father has had prostatitis a handful of times and each time he took antibiotics and he was fine. Originally I was relieved I wasn't a chronic case, but based on reading these forums I appear to be a minority if bacteria is the culprit. I am also confused as to why the doctor didn't identify the bacteria before prescribing the anti-biotic. I am also confused as to why the doctor gave me 15 days of Cipro while others get a lot more. I'm nervous about taking Cipro because I read about the black box warnings (so far so good).

I have an appointment to go back in two weeks. I also have an appointment with a different urologist because I want a second opinion and maybe more tests (semen and prostate fluid). Additionally, the original urologist isn't local and he is retiring at the end of the year so I need a different doctor if this is something that will keep happening.

Before reading these forums I thought "okay, anti-biotics and anti-inflammatories and I will be fine again." But seeing how many people are struggling - and with much worse symptoms - has made me quite anxious that I won't get better and I will keep getting prostatitis more and more frequently. And the symptoms will get worse.

My next step is to figure out what supplements to get. The urologist recommended vitamin C but my father takes a ton of other stuff (saw palmetto, pumpkin seed, stinging nettle).

Good wishes for everyone,
Moe


Last edited by Moelicious on Wed Oct 31, 2018 10:14 am, edited 1 time in total.



Wed Oct 24, 2018 12:08 pm
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Joined: Sat Dec 08, 2012 4:30 am
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Post Re: Newly Diagnosed
Welcome to the forum. Assume you are well into the Cipro at this point. As there was no test for bacteria you are currently taking what could be described as one of the most dangerous antibiotics on the market for no reason. Think about it. As for being ok so far, that means absolutely nothing with that class of drugs. The problems can show up months after you stop the drug. So as you need to find a new Dr I would suggest making that a priority and asking for a different antibiotic if that’s what you consider the best option. You’ve had this previously and gotten over it with antibiotics and anti inflammatories so it’s reasonable to try it again. The fact you have been good after just a couple of weeks in the past is unusually fast but that’s a positive. As for getting it again I would say considering how many times you have had it, and your age, it’s a good bet you will continue to have off and on problems. However the fact that you have recovered quickly in the past should be a source of encouragement for you.
By the way, unless you are having tests performed you are going to a Urologist for no reason. You’ll get a better level of care from a GP or primary care Dr.


Wed Oct 24, 2018 5:35 pm
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Post Re: Newly Diagnosed
Thank you. I am scared of the Cipro but it has good penetration and kills most bacterias that lead to prostatitis so I have to have faith it will help and not ruin my life.

I think the approach of testing before meds is a sound approach but I didn’t research my condition until this past Sunday - the third time it happened. I thought about asking for a different medicine after I learned about Cipro but a few friends and relatives convinced me not to be so anxious about everything - if a doctor is recommending it there is a reason for it.

I have a severe anxiety disorder and hypochondria so having a potentially chronic condition is terrifying. Right now the pain is a zero when I sit or lay down and sometimes a 1 when I move around but I am afraid it will get worse and worse and be chronic.

Thanks for the message and I will update my progress. Thus far the pain is the same since Sunday but the urge to urininate constantly has decreased.


Thu Oct 25, 2018 2:51 pm
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Post Re: Newly Diagnosed
It has been eight days since the pain at the tip of the penis began. The pain is still a 1 out of 10 and it only occurs when I move (but not always). Sitting, laying down and sleeping I feel 100% fine. This is day 7 of Cipro and the only relief seems to be that my urge to urinate frequently is gone. So far I haven't had any side effects except some insomnia and depression, but I am a chronically anxious/depressed person (and a hypochondriac) so I don't know if it is fair to blame the Cipro for my mood.

I purchased "Headache of the Pelvis" and Amy Stein's "Heal Pelvic Pain" in case the meds don't work and I am a chronic sufferer. I also found some PT places in NYC that do pelvic floor exercises. My next appointment with the "bad" urologist (the guy who gives meds without testing) is on November 7 (after 15 days of Cipro) and I will see a different urologist 10 days later. I will insist on the full gamut of fluid tests with the new urologist before taking any meds.

On YouTube there are some good Prostatitis videos and exercises by a guy named Uptown Mike. I started doing the exercises on Sunday.

I reached out to MicroGen labs to see about sending them samples via a NYS urologist who uses their services but they aren't registered in NYS and I would have to work with an out of state doctor to use them.


Mon Oct 29, 2018 12:07 pm
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Post Re: Newly Diagnosed
How does the NYS uro use MicroGen's services if they're not registered in NYS? The uro you're going to, who doesn't do testing before prescribing antibiotics, is actually more of a realist than I've heard of from other uros. Basic urinalysis is not a sufficient test to detect the levels or all species of bacteria that cause prostatitis. They're also quite unreliable in terms of lab results due to contamination, time constraints, and other factors. That is why MicroGen and other places have become a new standard. They test based on DNA scraped from the sample, rather than bits of mRNA which are sometimes more hypothetical data observations than a complete DNA analysis would be. In other words, the DNA is far more accurate for identifying the actual species and strain than mRNA.

I agree that you should go to a different doctor, and not go back to that uro though. You'll only get the same medicines most likely, and you're not getting much psychological/emotional support there. It's important to talk with people who are willing to give you a chance and listen to your anxiety to help you dispel it or at least to offer some compassion and at least practical understanding. You're not alone in being terrified. I've anxiety and depression for years, and when I first started getting symptoms, anxiety increased more than it had before in intensity and frequency.

The first signs of prostatitis / CPPS for me were increased urge to go to the bathroom, including waking up at night to relieve myself, perineum pain, and hypersensitivity to touch in certain pelvic areas (primarily penis, scrotum, inner thighs sometimes, perineum, and inner glutes). It wasn't until a year or two later that I developed pain in the tip of my penis, more abnormal sensations (cold feeling during and after urination, stinging/biting in small spots in the groin or other areas of the pelvis, electric shock type pains, wet feeling without wetness, and more).

I also have the feeling of the urge to go in my urethra almost every time now, rather than in my bladder or knowing I have to go without feeling it. I tried a course of cipro prescribed by a PCP-referred uro, and after 5-6 days, I felt like I was about to get a terrible flu so I stopped and haven't tried them again. The pain is still mostly constant. I don't have it as much at night, but I get cold or hot easily now, with or without a blanket and warm or summer clothes. The problem I think that is not discussed much regarding prostatitis and chronic pain in general is that it tampers or messes with normal body health.

Temperature, muscle relaxation/tension, nerve signaling, chemical balancing, and energy level are all drastically affected by chronic pain. Even a recurring pain, which isn't chronic, can induce changes and is alarming at the least. From what I've heard and experienced, PCPs, GPs, Uros, and even PTs do not address these issues much. They're so focused on providing their own continuum of care and preset solutions that they don't see a number of aspects of the problem(s). They're also quick to dismiss the patient's ideas/thoughts of what's happening and what's wrong, while dispensing their own advice and not testing or double-checking it with other knowledge/expertise/ideas prior to writing a script or coming up with a plan.

I've had too much indifference and uncaring attitudes from doctors and "care providers" to continue trusting that they'll soon resolve my problems if I just follow their advice and 'stay the course'. If I could afford MicroGen services, I'd do it. But I'm on Medicaid and it isn't covered, and my PCP won't do it. Perhaps some day this'll all simply disappear and I'll be back to normal. I don't retain the hope though. It's too tiring and overwhelming.

If you need to talk about what you're going through, send me a pm and I'll try to help how I'm able. I don't want to discourage you from taking steps that could bring you solutions. Being realistic is sometimes more of a healing approach than staying in "I have no idea what to do" limbo.


Mon Oct 29, 2018 2:24 pm
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Post Re: Newly Diagnosed
Thank you for the generous response. From my understanding of their email, NYS urologists are not using MicroGen at the moment. It is still a relatively new company.

"Basic urinalysis is not a sufficient test to detect the levels or all species of bacteria that cause prostatitis. They're also quite unreliable in terms of lab results due to contamination, time constraints, and other factors."

I was hoping they would analyze my sperm and secretions after they squeezed my prostate. My doctor did say the urine analysis wouldn't show anything.

"You're not alone in being terrified. I've anxiety and depression for years, and when I first started getting symptoms, anxiety increased more than it had before in intensity and frequency."

I battled anxiety and depression for ~8 years spanning high school, college and young adulthood. I got a reprieve for 9 years but the last 6 years my anxiety has skyrocketed and I bounce from self made crisis to self made crisis. And along the way I became a hypochondriac. In just this year alone I ran to a hematologist to make sure I didn't have blood cancer (due to chronically low WBCs), a walk in clinic to check for lymphoma and three doctors for double vision (nobody found anything wrong with me). Now the prostatitis is back and although it is currently manageable, it is all I am thinking about and I am checking myself for pain symptoms all day long. I am scared of it getting worse and becoming chronic. I am scared of it going away and coming back every two years and then the antibiotics stop working. It doesn't help that I can't find a local doctor who is a champion of the condition. I'm not ready for Dr. Toth's injections.

Life is hard enough for me when I am healthy. Having chronic pain is more than I can cope with.


Mon Oct 29, 2018 4:43 pm
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Post Re: Newly Diagnosed
So yesterday I was pain free for pretty much the entire day and today I am pain free. And I don't have any urinary issues. That's great!

Yesterday I went to the local hospital's 20 person urology unit to get a second opinion. The urologist I saw said urine cultures are never positive for prostatitis. He said recurring prostatitis like mine is not easy to resolve. They could do a semen culture but it is usually not positive with prostatitis.

The doctor disagreed with me being on Cipro and put me on Doxy for seven days - so I will have 7 days on Cipro and 7 days on Doxy.

The doctor said I did not have acute prostatitis because that comes with flue like symptoms and I never had those. He said I had low grade inflammation.

The doctor said not to worry about bacteria resistance if I have to take two weeks of antibiotics every two years.

The doctor said that contrary to the guidelines it is okay to prescribe antibiotics without positive test cultures. He said there aren't any clear tests to justify the use of antibiotics for prostatitis. He said he won't let patients suffer, the antibiotics have anti-inflammatory properties and his patients respond well to them. He has many prostatitis patients and none of them are on disability for pain.

The doctor didn't have any suggestions on how to prevent prostatitis from coming back over and over but he said the practice has a nurse practitioner who is a champion of the issue. Her business card even says "specializing in pelvic pain." So I made an appointment with her in December to see why this keeps happening to me and how I can prevent it.


Wed Oct 31, 2018 10:13 am
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Post Re: Newly Diagnosed
Moelicious wrote:
The doctor said not to worry about bacteria resistance if I have to take two weeks of antibiotics every two years.


I’ve taken an average of 2-3 months of antibiotics almost every year for over 20 yrs straight. You will be fine.


Wed Oct 31, 2018 11:42 am
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Post Re: Newly Diagnosed
That's pretty much all positive and enlightening news.

It is truly unbearable to deal with chronic pain along with anxiety and depression at times. To say the least of being in the house most of the time and rarely ever talking to or hanging out with friends. It's embarrassing to be in public with chronic pain in my pelvis/groin. I also have some kind of neuralgia in my head and face now, trigeminal I think, and that causes me to twitch occasionally or to contort my face and turn my head in odd ways to relieve the pain temporarily. Even looking up and to the side or down and to the side intentionally with my eyes for relief is enough to make me uneasy while in public at a store or restaurant.

I'm thinking of going to a different PCP, or at least switching within the practice I go to. According to my mom, there are only two entities, Mercy and Spectrum, in Grand Rapids, Michigan which have PCPs and GPs, and which also are able to refer me to specialists. I don't know if this is completely the case, but it is certainly a dystopian prospect that only two huge corporations are overseeing all health practitioners and patients in one city.

I think prostatitis is most likely overdiagnosed or underdiagnosed in lots of cases. I was thinking about how bacteria could be trying to defend themselves from something other than the inflammation, and thereby form biofilms for protection while also causing other problems which could include chronic inflammation and pain. Sometimes modern medicine chooses one cause as the culprit, or primarily views a disease/condition from one perspective (e.g., cancer, arthritis, gingivitis, anxiety) and then treats from one perspective. Alternatives and other possibilities often get enough suspicion that they're ignored, denied, rejected, and not offered until much later, if at all. The preoccupation with yoga exercises to treat prostatitis and CPPS is an example. It's like it's enforced as the only thing there is that'll solve chronic tension and thus, pain, in some places or some therapists. Yet, reading this forum it is obvious it doesn't work for everyone, and is often a precursor to worsening issues. Approaches that are labeled "holistic" have constraints and questions placed upon them because it becomes common practice to espouse the philosophy of it, or the ideology of treating the whole person. They're really not even considering what is meant by it, or how it is to be appropriately and safely utilized in treating each individual though.

Anyway, perhaps the NP you're going to see has more definitive answers and is prepared to help you. Thanks for the updates.


Wed Oct 31, 2018 11:46 am
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Post Re: Newly Diagnosed
I am sorry you are having such a rough go of it. I wish I could help


Wed Oct 31, 2018 1:07 pm
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Post Re: Newly Diagnosed
So it has been 17 days since the pain began and one day since I stopped antibiotics and I am pain free. I have been pretty much pain free for about a week. Fingers crossed. But remember - my pain was only a 1 or 2 out of 10.

However, three days ago I started feeling tingling in my scrotum - sitting, standing and laying down. Ever couple of minutes. The tingling doesn’t hurt. So I am not out of the woods. Next Friday I see a highly decorated urologist and in early December I see a NP who specializes in CPPS.

Yesterday on the subway I was ruminating on my condition and I got a panic attack. I started sweating, needed to sit and when it was my stop I passed out and fell onto the platform. I called my doctor and he sent me to the ER. They did some basic tests (BP, EKG, blood sugar) and sent me on my way. I never had an experience like that before and the ER doc said I could have caused the attack and fainting with my thoughts.


Wed Nov 07, 2018 7:12 pm
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Post Re: Newly Diagnosed
So the pain went away on about day 10 (8 days of Cipro). The tingling in the groin began on day 16, while I was finishing up Doxy. The antibiotics helped remove pain but now I have a symptom I never had before. So do I have bacterial prostatitis or not? At first I thought the tingling could be a side effect from the Cipro, but I searched these message boards for "tingling" and found enough posts to make me realize that tingling is a symptom of prostatitis.

I called the last uro I met with to tell him the pain is gone but now I have tingling in the groin. I spoke with a nurse and am awaiting a call back from the doctor. I don't really expect him to say anything useful.

In one week I meet with a different uro. I will be off of antibiotics for 10 days at that point. Not sure if that is enough time to run any fluid tests. FWIW, I passed the urine test I took last week.

On December 3 I am meeting with a NP who specializes in CPPS. She works for Dr. Robert Moldwin (Director of the Pelvic Pain Center at The Arthur Smith Institute for Urology). I also made an appointment with Dr. Moldwin but that will be in January 2019. He is a busy guy. His website says they do a full workup for CP (detailed history, physical exam, lab exams, bladder emptying, urodynamic, cystoscopy, ultrasound, CAT scan, MRI). Not looking forward to these tests.

In the meantime, I do Uptown Mike (YouTube) and Amy Stein's pelvic exercises 2 times a day. They are the same exercises as the ones in Headache in the Pelvis. Headache in the Pelvis is okay, but they want you to put your finger in your rear (with supervision at first) and I am not ready for that. I found a PT place that does pelvic floor work - it is only a few blocks from my office and is reasonably priced because my insurance will pay some of it. So I may go there in a few weeks.

The tingling is really annoying - it happens every couple of minutes when I am sitting or standing or laying down. When I walk I am fine. It doesn't hurt - it is the same feeling you get when you are anxious or cold and you have scrotal tightening.


Fri Nov 09, 2018 6:15 pm
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Post Re: Newly Diagnosed
So I still have the tingling in my scrotum. It has been 9 days without improvement. Did the meds mess with my circulation? Am I still infected? At least the pain is still gone. And I don't have urinary urgency anymore.

I spoke to a nurse with the second urologist and she said to avoid sitting and move around more. I asked if the tingling is from the meds or infection and she said "it could be." Not helpful. I called the first urologist - the one who put me on Cipro - let's see what he will say.

Can anyone recommend some questions for me to ask the new urologist on Friday? This is what I have thus far:

1. What is my diagnosis? Chronic bacteria prostatitits?

2. What is the tingling? Am I still infected?

3. Was two weeks of anti-biotics enough?

4. Why did I have pain in 2018 and 2016 if my prostate wasn’t inflamed on a DRE?

5. Will you analyze prostate secretions and semen to see what bacteria is present, if any?

6. Won’t biofilms eventually prevent anti-biotics from working? What can I take to break up biofilms? Apple cider vinegar, NAC, Serrapeptase, turmeric, etc.

7. Most people think this isn’t caused by bacteria but antibiotics helped me three times very quickly…thoughts on that?

8. Recommended supplements and dosage?

9. Should I go for physical therapy or physiological therapy?

10. What do I do other than diet, supplements and stretching?

11. Who are the experts in NYC in treating this condition?

Thanks,
Moe


Tue Nov 13, 2018 12:39 pm
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Post Re: Newly Diagnosed
What are medicines that would stop the tingling?

What conditions or illnesses cause it / present with it?

How does bacteria develop a biofilm?


Tue Nov 13, 2018 1:36 pm
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Post Re: Newly Diagnosed
Moelicious wrote:
So I still have the tingling in my scrotum. It has been 9 days without improvement. Did the meds mess with my circulation? Am I still infected? At least the pain is still gone. And I don't have urinary urgency anymore.

I spoke to a nurse with the second urologist and she said to avoid sitting and move around more. I asked if the tingling is from the meds or infection and she said "it could be." Not helpful. I called the first urologist - the one who put me on Cipro - let's see what he will say.

Can anyone recommend some questions for me to ask the new urologist on Friday? This is what I have thus far

6. Won’t biofilms eventually prevent anti-biotics from working? What can I take to break up biofilms? Apple cider vinegar, NAC, Serrapeptase, turmeric, etc.

7. Most people think this isn’t caused by bacteria but antibiotics helped me three times very quickly…thoughts on that?

8. Recommended supplements and dosage?

9. Should I go for physical therapy or physiological therapy?

10. What do I do other than diet, supplements and stretching?

11. Who are the experts in NYC in treating this condition?

Thanks,
Moe


On 6, as with the ones that follow, they will not be able to tell you anything you couldn’t find on this forum, or by using google. I repeat this often and will do again. Urologists exist to perform tests your GP can’t. They have no special knowledge about your condition that a GP won’t. Actually they have less, because GPs deal with it everyday of the week. A Urologist performs tests, looks at the results, and in the case of prostate related issues usually finds nothing causing it.
On 7, no one knows. You can find a variety of reasons why they work for some people but there is no definitive answer unless you are treating a confirmed diagnosis of bacteria.
On 8, a health food store employee will know more about supplements than 90 percent of the practicing Drs in this world. Drs know the drugs. That’s what they deal in, that’s what they do. They prescribe drugs.
On 9, he or she will either not know, dismiss it, or guess.
On 10, what you can find on this forum. A urologist will know nothing more.
On 11, If a Dr recommends someone it is usually a friend. They will rarely send you to a stranger, so again you could find that information better on your own.


Tue Nov 13, 2018 2:06 pm
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Post Re: Newly Diagnosed
Thank you both

For what it's worth, I called my GP to get his opinion of my symptoms and he was useless - told me to keep him in the loop as far as my next appointment goes and not panic.


Tue Nov 13, 2018 3:27 pm
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Post Re: Newly Diagnosed
Moe, if your GP told you not to panic, he told you what you needed to hear, because you are clearly overly stressed and have been. First, you can’t expect to have multiple Drs giving you advice. You’re seeing a Urologist and asking your GP for help at the same time. That isn’t how it works. You have to make a decision about who you are going to trust with your care. You can’t expect to jump from one Dr to the next and get taken seriously by any of them.


Wed Nov 14, 2018 12:47 am
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Post Re: Newly Diagnosed
I am ten days off of antibiotics and I still dont feel well. Tingling in the groin, frequency and dribbling. I also think my semen may be a little bit yellow. Today I met with a new urologist and PA and liked them both.

They felt my prostate and pelvic floor and said both felt good

They said Doxy isnt their abx of choice - poor penetration

They dont give out Cipro due to the side effects

They are willing to do a semen sample after a prostate massage but they said I am only off meds for ten days and the test would likely be negative

They said sometimes the symptoms lag an infection - I could be clean but still have symptoms (“residual inflammation”). I dont really believe this theory - I feel I still have a bad actor inside me.

They feel Cipro was working because I felt almost better on day 8

They said I probably don’t have CBP and I probably don’t have a superbug abx can’t kill.

My tingling is probably nerve irritation.

They don’t know the cause of my prostatitis - current or past - because I never had secretions tested.

They said you can’t feel inflammation via a DRE.

I forgot to ask about biofilms.

The doctor said I could wait things out a couple of weeks and then get tested or try two weeks of Amox and get tested two weeks after that if I dont feel better. I decided to take the meds and come back in one month for testing if I am not better. Amox worked for me two years ago.

I am taking apple cider vinegar for the biofilm and just bought Serrapeptase.


Fri Nov 16, 2018 6:19 pm
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Post Re: Newly Diagnosed
Today I have had symptoms for one month. The current symptoms:

urge to urinate when standing/walking (but not sitting, sleeping)
tingling in scrotum when sitting
dribbling after urination

One month ago the only symptom I had was minor pain in the tip of the penis when moving and that was knocked out on day 10 after a week of Cipro. I actually prefer that minor pain to the constant urge to urinate when standing.

Although the urologist on Friday felt my pelvic floor and said it felt fine I am going to one of those fancy pelvic PT places that are now all the rage. For a $60 copay I will see what they say about my pelvic floor.

I am taking PROSTA-Q, Amoxicillin, NAC, Serrapeptase, Vitamin C, Vitamin D and Apple Cider Vinegar. I eliminated beer and am down to one small cup of coffee a day. I stretch at least once a day.


Tue Nov 20, 2018 1:30 pm
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Post Re: Newly Diagnosed
"At first I thought the tingling could be a side effect from the Cipro, but I searched these message boards for "tingling" and found enough posts to make me realize that tingling is a symptom of prostatitis. "

Lol, and how many of those people have been on Cipro before, probably 100%. Tingling is probably nerve damage from Cipro.


Tue Nov 20, 2018 2:05 pm
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Post Re: Newly Diagnosed
On Wednesday I went for pelvic floor PT. I was there for 90 minutes. The PT wasn’t sure what was going on with my symptoms (urge to urinate when standing but not sitting, tingling in groin) but suggested something “mechanical” was at play. She poked and manipulated my muscles (inside and out) but was unable to generate pain, tingling or the urge to urinate. She said some of my muscles were tight but I am sure that’s the norm. I dont think my pelvic floor is causing my symptoms but I will try it again even though I did not enjoy having someone’s finger in my innards.

The PT wants me to train my bladder. Basically ignore the urges to urinate and only go to the toilet every 2.5 to 3.5 hours. I have been able to do that thus far (!) and I never wake up at night to urinate but the urge to urinate when standing is VERY uncomfortable. Fortunately I have a desk job and always get a seat on the commuter rail, so on a typical work day I don’t do a ton of standing. The PT said not to deny my body water - I need to drink water as if I didn’t have urinary issues.

I dropped the vitamin C (it can irritate the bladder and cause frequent urination), serrapeptase and apple cider vinegar (frequent urination was reported by a couple of people online). I started with Graminex pollen today and continue the Prosta-q, NAC and Amoxicillan. I read it takes 4-6 weeks for the Prosta-q to work and three months for the pollen. Boo.

My father takes Rapaflo and Finesteride for his BPH and he doesnt have side effects. He has been dealing with an enlarged prostate for close to 30 years. For several years he had to urinate every hour. So an alpha blocker and prostate shrinker medication may very well be in my future very soon.

I still have the tingling in the scrotum but it really is a non issue at this point. Infrequent and not painful. I am much more concerned about the urgency when standing.

Keep fighting everyone,
Moe


Sat Nov 24, 2018 8:43 pm
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Post Re: Newly Diagnosed
I reached out to the urologist about the urgency to urinate following urination and the urge to urinate when standing. He wants to run some tests "that require a scope and/or catheter into the bladder." My next appointment with him is on December 7. I hope he can run the tests then. He also agreed to give me Rapaflo. Fingers crossed it can help with the urgency.

My urologist also referred me to Dr. Moldwin - the CPPS expert on Long Island. I already made an appointment with him but it isn't until January 2.

I was anxious and depressed before this bout with prostatitis. Now I am as low as it gets. Not sure how you guys deal with this for months and years.


Mon Nov 26, 2018 12:15 pm
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Post Re: Newly Diagnosed
Moelicious wrote:

It doesn't really matter at this point - I am sure the tests will show I am fine and I will be dropped into the bucket of CP/CPPS and left to fend for myself with supplements and meditation and prayer and whatnot. After all, there is no known cause or cure. I asked the urologist about Rapaflo - we will see what he says.

I was anxious and depressed before this bout with prostatitis. Now I am as low as it gets. Not sure how you guys deal with this for months and years.


You deal with it by realizing there is nothing unusual about what you’re going through. Illness and disease are part of life. No one is immune to it. How you live, lifestyle, commitment to health, doesn’t matter. We all have to deal with it sooner or later. My problems started over 20 years ago but I’m still dealing with it because that’s what I have to do. You still have a life to live regardless of how you might feel at any given moment. Once you realize that you will deal with it.


Mon Nov 26, 2018 12:53 pm
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Joined: Wed Oct 24, 2018 11:19 am
Posts: 37
Post Re: Newly Diagnosed
Thanks Madcap. If I didn't have a family to support I probably would have checked myself into the psych ward for a "vacation." Hopefully the Rapaflo will help with the urgency.

What is so frustrating is that many of the supplements take several months to work - if they work at all. So any experiment or hack we perform on ourselves takes a ridiculous amount of time to see results. And even if you get positive results, there is no guarantee it was the intervention that caused the result - time could have been the positive factor.


Mon Nov 26, 2018 2:23 pm
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Joined: Wed Oct 24, 2018 11:19 am
Posts: 37
Post Re: Newly Diagnosed
Day 47 of prostatitis. Current symptoms:

Occasional flash of pain at tip of penis - uncommon and only lasts a second or two. Non issue

Occasional tingling in the testicles. Not painful. More present in morning than afternoon. Non issue

Urge to urinate approximately 5 - 90 minutes after urination and then the urge dies down. This has been going on for three weeks. Sitting and lying down is more comfortable than standing/walking. This has been the worst symptom by far. On Day 8 of Rapaflo I had a good day - the urgency following urination wasn't nearly as strong and I didn't have a moment where I had to focus 100% on holding my urine in. I almost felt normal.

Results from my bladder journal:

Last week I urinated 6.6 times a day, I urinated every 2.6 hours, the average urination was 26 seconds, I consumed 37 ounces of liquid a day

The most recent week ending yesterday I urinated 5.7 times a day, I urinated every 3 hours, the average urination was 32 seconds, I consumed 47 ounces of liquid a day

So I am drinking more and urinating less. The intensity of the urgency is lower this week than last week. I read in a textbook that alpha blockers work quickly, but get maximum strength after "a number of weeks." Most users get a 30% or 40% benefit. So I may have some additional relief coming my way being that I am only on day 11 of Rapaflo. I got the retrograde ejaculation on day 1 but it is a non issue.

I completed my third pelvic floor PT session. I'm not a big believer that my pelvic floor is causing my symptoms. The therapist didn't find any trigger points inside or outside of me and she isn't able to replicate my symptoms by pushing or manipulating any muscles. I do the Uptown Mike and Amy Stein stretches once a day anyway.

Tomorrow I go back to the urologist. He will probably want to do a cystoscopy. I'm not worried about the procedure but I am worried about the side effects. There are some stories out there that the procedure made pain and frequency symptoms worse.

Current supplements:

PROSTA-Q, NAC, Graminex, Tumeric, probiotics, water soluble pumpkin extract, vitamin D.


Thu Dec 06, 2018 11:50 am
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