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 new here, same old diagnosis - my story. 
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Joined: Mon Jun 19, 2017 10:50 am
Posts: 31
Post new here, same old diagnosis - my story.
Hi everyone,

at first I wanted to tell my story very detailed but I have not enough energy left to write everything down what has happened in the last ~2 years.
I'll be unemployed by the next month therefore I'll have quite some time to figure this disease out for myself.

about me:
- 27 years old.
- I was sporty and quite healthy (besides some unrelated things) to that day.

brief story:
- had unprotected vaginal intercourse in October 2015 (condom broke) with a stranger.
- developed symptoms like red meatus, burning in the urethra (especially after ejaculation), pain in the bladder(?) after urination, weak stream, occasional pain in the rectum.
- visited 3 urologists and a few clinics.
- had dozens of urine-, semen- and blood-tests for, I suppose, "everything".
- things that were found in the urethra or semen: entorococcus, pseudomonas, proteus.
- ate antibiotics like candy (amoxiclav, doxy,amoxicillin, metronidazol, cipro).
- never have felt any different on antibiotics, after the last 6 weeks of cipro everything seems to be sterile.
- the latest diagnose was: NIH IIIB (chronic pelvic pain without evidence of inflammation in prostate secretions or ejaculate).

Well, that is not the bad part.

today:
- cpps related symptoms as I've mentioned above (pain level mostly 2/10 if I abstain)

Things I relate to my first session of cipro - started working out (light) 2-3 weeks after that and developed the following symptoms a few weeks later:
- pain on the left side of my sternum if I put pressure on my left pec.
- pain in my thoracic spine at the same level (now mostly resolved due to physiotherapy (20 sessions, 3 physiotherapists).
- left collarbone and shoulder are cracking when I rotate my arm.
- left scapula is "cracking" (sounds like tendons rubbing over bones) when I push it upwards.

Things I relate to my second session of cipro:
- my overall joints are cracking ~100 times a day, sometimes I got pain in the knees, weak muscles, tendon pain in legs and arms if I do anything abnormal but I am able to walk. This started 2-3 Months after the last pill and it's getting worse. You may be asking why the fu** did you take cipro a second time:
I hurt my lower back (pain level 10/10) with heavy weightlifting at the age of 22 and suffered for round about a year from that. I thought that the problems I've mentioned above were totally my mistake, but I questioned that after I took my second round of cirpo when my joints began to crack all over the place for no reason.

- and finally, my hair is falling out a lot (visible), which I really noticed a year ago (my parents and grand parents got full hair).

Thats about it. My life is pretty sad since then but I won't give up that easily. I've been in surgery because of skin-cancer prevention 7 times already (naevi), luckily they were all benign.
I am not afraid of anything anymore so I'll try everything that makes sense to try in the next months.

I'll keep you posted.

TheProstator


Mon Jun 19, 2017 2:40 pm
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Joined: Mon Jun 19, 2017 10:50 am
Posts: 31
Post Re: new here, same old diagnosis - my story.
Well since nobody is replying anything (I guess it's a classic case) I'll post an update.
As I mentioned above, I got now plenty of time and will try anything that is in my budget and makes sense to me. My urologist prescribed Tamsusolin due to my diagnose in March 2017 "NIH IIIB, residual urine ~ 200ml, 13 ml/s". A few weeks ago I had a cystomanometry in a local hospital which I will discuss in a few days with him. The result was also an urine flow of 12-13 ml/s but no residual urine.
I created a table in excel where I track some values of different variables which may have an effect on CP/CPPS daily. I also track a pain score regarding to my symptoms.

input variables:
- ml, sec, urine flow (ml/s), urine color (yellow etc.), urine appearance (clear, cloudy), comment; on morning, before midday, midday, afternoon and evening
- rectal prostate massage (min), stomach massage (min), kegel exercise (rep*sec), ejaculation (0-2), sitz bath (min), sitting on heating pad (min), heating pad on stomach (min), daily sitting (h), cranberry powder (mg), vitamin c (mg), alpha blocker (mg), blood pressure sys (mmHg), blood pressure dia (mmHg), pulse (bpm), saw-palmetto (mg), vitamin d (I.E.), vitamin B12 (μg), garlic powder (g), garlic (g), onion (g), broccoli (g), broccoli boiled water (ml), turmeric (tsp), cinnamon (tsp), stretching (min), pelvic floor trigger massage (min), glucosamine (mg), stress level (0-5).
output variables:
- pain in urethra (0-5), pain while urinating (0-5), pain near bladder (empty) while stretching (0-5), meatus redness (0-3)

I am still looking for some attributes and I would like to know what I should add to my regimen. I've got some basic knowledge in statistical learning and data mining to analyze the data afterwards and determine which variables may have an effect on the outcome - hopefully this is gonna help me to figure out the significant ones when I am getting better.


Mon Jul 03, 2017 5:58 pm
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Joined: Mon Jun 19, 2017 11:11 pm
Posts: 42
Post Re: new here, same old diagnosis - my story.
Wow I give you a lot of credit, those are some impressive variables and supplements.

I have gone in the opposite direction, essentially I've given up, and have decided not to think about the pain, or what may have caused it. I have spent many thousands of dollars on supplements and herbal potions etc...none of which has helped at all. I may try some pelvic floor physio...

I admire your tenacity and I hope you feel better soon.


Mon Jul 03, 2017 9:33 pm
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Joined: Thu Sep 04, 2014 11:39 am
Posts: 608
Post Re: new here, same old diagnosis - my story.
racebannon wrote:
have decided not to think about the pain, or what may have caused it.


You may like Dr. Sarno's books.


Tue Jul 04, 2017 4:09 am
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Joined: Fri May 08, 2015 2:59 pm
Posts: 548
Post Re: new here, same old diagnosis - my story.
The more I think about it the more I think we should ban cipro and drop the remaining supplies on ISIS.

Hmm your taking a lot of supplements, many of them you could just get through a healthy diet like onion etc. Garlic powder might help, I think people take allicin a fair bit too which is more concentrated. If your interested in herbal supplements, I recommend a book called 'body into balance' by Maria Groves, it is very detailed and covers a lot of different stuff.

Is it a stabbing pain you get or tingling like nerve pain? It sounds like you haven't got inflammation? So anti inflammatories won't help like the brocolli treatment or NSAIDs? It is best to go for supplements according to the type of pain: inflammation or nerve. Then again, there is a fair bit of overlap because turmeric or curcumin for example effects the nerves and inflammatory pathways. I take curcumin because it is more concentrated and supposedly better, but I haven't seen any science to back that up so far.

I wouldn't add anything, actually I think you probably have too many things, and diet is key and you can get a lot of that stuff from that. Routes you could go down; 1. Supps to boost your immune system incase it is still infected, like reishi, echinacea, etc. 2. Something for the nerve pain (if it is nerve pain) like, cannabidiol, st johns wort. Cannabidiol is supposed to work on inflammatory pain as well, it takes a week to start kicking in apparently.


Tue Jul 04, 2017 12:26 pm
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Joined: Mon Jun 19, 2017 10:50 am
Posts: 31
Post Re: new here, same old diagnosis - my story.
Thanks for the kind replies.

@chris85
Yes, and I take and will take some more that I haven't listed yet. Some of them may have an impact on CP and some don't (i.e. biotin).
I don't wanna try each supplement or physical therapy one by one for more than 60 days just to get the result "oh it didn't work, lets try the next one and be hopeful" - then I would still be here in 2-3 years testing each supp for its effect. I just want to feel and see a change, for the better or worse, I don't care.

I don't have stabbing pain. As I mentioned above, my urethra feels inflamed, especially after ejaculation and it burns while urinating (sometimes more sometimes less). If I pee immediately afterwards then the pain is much less. If I squeeze the urethra with my fingers, the pain is higher. The Redness of the meatus is also more present after ejaculation. I can massage my prostate without pain, but I am not sure if I am doing it right - I guess skill comes with practice.

If I stretch myself with an empty bladder (and lean slightly backwards) it burns at the lower part between my belly button and pubic area. The pain level also isn't constant and almost not present 30 mins after urination. When I am driving I feel a little tingling sensation somewhere in my left buttock but that doesn't occur when I am sitting on my well cushioned chair (this might be unrelated). My urine stream also is weak, especially after ejaculation. In general, the pain is really bearable but who knows how it will be in a few years.

My diet is clean, but there is definitely room for improvement. I ditched meat (fish also) 1.5 years ago and went vegetarian. I mostly don't eat stuff that's high in sugar, wheat or milk.
I'll mix things up a bit in the next few months to ensure that I get lots of nutrients - hopefully your recommended book will help me with that. I also added Cannabidiol to my shopping list.

I'll visit my urologist in a few days to discuss the latest results of the cystomanometry at the hospital. The doc at the hospital also wanted to do a cystoscopy but I won't wanna have that in the next months if there is not enough evidence for something that can only be revealed by that procedure. I took cipro "blindly" and I am suffering the consequences, this won't happen again.


Wed Jul 05, 2017 7:34 am
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Joined: Fri May 08, 2015 2:59 pm
Posts: 548
Post Re: new here, same old diagnosis - my story.
It's a bit of an art, I tend to add things one at a time leaving at least three days to a week in between to see how I react. I go for between 2 and 8 herbs in formula, carefully chosen and researched. Then give it 2 months to see if the formula is helping. I start with low doses.


Wed Jul 05, 2017 3:59 pm
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Joined: Mon Jun 19, 2017 10:50 am
Posts: 31
Post Re: new here, same old diagnosis - my story.
chris85 wrote:
It's a bit of an art, I tend to add things one at a time leaving at least three days to a week in between to see how I react. I go for between 2 and 8 herbs in formula, carefully chosen and researched. Then give it 2 months to see if the formula is helping. I start with low doses.


Your method is totally legit. I'll take a similar approach if I don't feel a significant change in the next 2 months. But imagine that I do feel a positive change then I only have to figure out which supplement (or combination) might do the trick by cutting out one supp after another. I don't care about a couple of hundred bucks for supplements if I can reduce my symptoms months earlier.


Fri Jul 07, 2017 10:33 am
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Joined: Mon Jun 19, 2017 10:50 am
Posts: 31
Post Re: new here, same old diagnosis - my story.
Just a quick update because I've experienced a new symptom today. My GP advised me to go swimming because doing no sports is not the solution for my joint problems.
Therefore, I went swimming a few times now, which sadly turned out to be painful. I've had just a little soreness in my knees and the left hip but it was managable. The real problem started to occur after a few hundred meters somewhere in my lower abs near the area where I feel pain after urinating if I stretch myself. I had to stop because the pain increased and it felt like I did 50 leg raises and was holding the last rep. I need to mention that I was only breast-stroke swimming with my head above the water. This creates a hyperlordosis while swimming and might put tension on my lower tummy. I don't remember any pain in that area before my prostatitis diagnosis - this has to be related somehow.

Any additional thoughts on this?


Sun Jul 16, 2017 6:49 pm
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Joined: Mon Jun 19, 2017 10:50 am
Posts: 31
Post Re: new here, same old diagnosis - my story.
Update:
I stopped taking all of my "prostate" supplements earlier than I planned because I don't feel a change in any way. I am still on alpha blockers (0.4mg a day) though. I started biking and lifting some light weights because I am tired of doing nothing - if my joints and tendons are getting much worse, I'll stop. I was addicted to sports a few years ago and it helped me through "tough times", I guess now we do know what actual tough times look like, don't we?
In a month I have an appointment at an orthopaedic specialist who hopefully can help me with my joint problems.

What I actually wanted to say is the following:
My uroflow was measured at three different hospitals in the last months. The first time, I just peed standing into a funnel and my stream got measured correctly. Simple as that. At the second hospital I had to ejaculate into a cup first and then had the uroflowmetry taken (normally they would do this the other way round there) - this had obviously affected my urine stream. The third time, I peed sitting into a funnel while a catheter (~3mm) was still in my bladder, which also affected my urine stream for the worse.
How can each of those values be compared if every test had taken place under different conditions?
I hate to say this but if the docs can't even standardize a simple uroflow test, what in the world are they capable of in general?


Sun Jul 23, 2017 5:41 pm
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Joined: Mon Jun 19, 2017 10:50 am
Posts: 31
Post Re: new here, same old diagnosis - my story.
just a quick update, which I try to do every month from now on:
No real change in symptoms - no matter what I eat, drink or supplements take. Sports don't affect them either. I've discovered some "triggerpoints" in my tummy which might contribute to my pain. Haven't found any in my rectum, but the prostate feels a little bit stiff on the left side. I'll get massage sessions at a pelvic floor specialist in the next month - maybe this will change something. Furthermore, I'll send a urine sample to a lab to test it for some additional pathogens. I've read hundreds of threads on prostatitis in different forums and I am not one step closer to a solution - this disease leads freakin nowhere. Eitherway, keep on fighting.


Fri Aug 25, 2017 8:11 pm
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Joined: Mon Jun 19, 2017 10:50 am
Posts: 31
Post Re: new here, same old diagnosis - my story.
update:
STD-Lab results came back negative.
I am currently on 100mg bromelain and 500mg quercetin and some other supplements for my joint issues - no real improvement yet. The pelvic floor specialist turned out to be "disappointing" because I won't get any massages - it's more about relaxing and stretching exercises. But at least she's read "a headache in the pelvis" and she seems to know what she is talking about. Today I had an appointment with my orthopedist who told me that I my left sacroiliac joint is inflamed. That might be the reason for my back pain which I got for years, but doesn't quite explain my left hip pain. On bad days I am walking like a 90 year old. He gave me a prescription for Ibuprofen and wants to take a blood sample next week to determine some specific values. Of course HLB A27 was on his list and told him that I am "HLB A27" positive - he also referred me to a rheumatologist. I've read that IBU isn't the best choice for floxies therefore I am not sure about taking it.
I am laying in bed 3/4 of the day (mostly pain free) watching movies. I don't have much hope that this story will have a happy ending but I'll keep you posted, even though nobody is commenting.


Thu Sep 21, 2017 6:21 pm
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Joined: Thu Nov 17, 2016 3:20 pm
Posts: 201
Post Re: new here, same old diagnosis - my story.
Keep us posted....we are reading and hoping you get better. Tough to comment when i have nothing helpful to add. Stay strong.


Thu Sep 21, 2017 10:35 pm
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Joined: Mon Jun 19, 2017 10:50 am
Posts: 31
Post Re: new here, same old diagnosis - my story.
Well, finally my ongoing lower back problems are diagnosed with Bekhterev's disease. Another incureable disease in the pocket - yey. I've to wait 5 months for an appointment at the rheumatologist - don't know whether I should laugh or cry.
I am at a point in life where I don't give a **** anymore. I'll change my diet more drastically in the next weeks and also try out fasting for at least 10 days. A few years ago I managed to fast for 7 days therefore I am confident that my mind can do a few more days - but I am not sure about my body (~15% fat).

I can't picture myself recovering from all this:

- bekhterev's disease (not cureable)
- seborrheic dermatitis, just slightly, but more intense in the winter (not cureable)
- CP/CPPS (not cureable yet)
- joint/tendon issues due to cipro (time will tell)
- yearly skin operations (not cureable)

Nevertheless, I have a few more months left for self-experimentation - I'll keep you posted.


Mon Oct 09, 2017 2:30 pm
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Joined: Mon Jun 19, 2017 10:50 am
Posts: 31
Post Re: new here, same old diagnosis - my story.
Has anyone tried fasting so far?
Has anyone tried being abstinent for a couple of weeks?

A few years ago I was on a low carb diet which killed my libido. I hope this will be similar when fasting - it would make things much easier. If non of this changes anything, I'll go back to the docs for some last tests. I'll also try out running (GaryxG had major success with it), but I am not sure if my joints/tendons or my lower back can handle it.


Sun Oct 15, 2017 4:20 pm
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