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 Update on my progress 
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Joined: Sat Apr 23, 2016 7:06 pm
Posts: 13
Post Update on my progress
Well, It's been a year and a couple of weeks since I have been dealing with this condition. I still have frequent urination, perineal pain, mild penile pain, low back pains (with some butt numbness when sitting down) hamstrings are tight and feel tingling go all the way down to my left foot (some on the right but not as bad). Looking back I think I could be better now but it's been so long, it's hard to gauge. It started out as back pain only when bending over and mild urination to full blown cp/cpps after kidney surgery.

I have had a lot of tests and just recently a Spermatecolectomy for a 2.5 cm cyst on the left testicle on Nov 4th which is healing good but testicle is still 3 times bigger then normal! I have had ESI injections for the L-spine, 4 MRI scans that found only a bulging disc in the c-spine and nothing wrong other then that. I had the injections for L-spine for what the doctor explained as a pancake like disc, but others say its a mild disc bulge, but other then that it shouldn't be causing this kinda pain. The injections never worked long term if at all. I finally found a Urologist that performed a DRE. Getting my local urologist to do that examination was like pulling teeth! He said that the prostate was fine and I didn't have prostatitis as I would have screamed in pain otherwise when he did the exam. He also did a Cystocopy, and Urodynamic study. Everything was normal except the Urodynamic. He said that I have high pressure, low flow. He also said that I had a tense prostate and wanted me to take Terazosin for that. I haven't tried it yet as it is a blood pressure medication and I have perfect blood pressure. I don't want to ruin that! He classified it as BPH in the patient portal, but said that it wasn't BPH, it was just what he classified it as and it's just tense. Also, he wants me to follow the IC diet even though he doesn't think that I have IC. He feels like the IC diet may help my symptoms. So I have been giving it a try. Doesn't hurt to try.

I started soon after that doing Physical Therapy and this is when they found a Sacral Torsion and said that my Piriformis muscles are tight. (Which they said could be caused by the torsion or vice versa). I did PT for awhile and figured out it was a waste of time as I can do the stretches on my own and they do not do any internal pressure point stuff. I started going to a chiropractor and she found the torsion too and she has been trying to pop it back in place. It wouldn't move at first and she was getting frustrated at it, but it finally started to pop, but I still have yet to get relief. She is waiting on some big pop she says. Sometimes I think its the Sacrum and others times I get days where I wonder if these Doctors even know what they are talking about.

I wanted to update to contribute to the findings of this terrible condition! I swear if I ever get healed I am going to be whatever that type of doctor is so I can help people. Cause this freaking condition sucks! I don't want to be one of those people that got cured and forgot about it and never helped anyone.

So far what is helping or still helping:
Drinking water only or coconut water
Hot baths (Sits bath was annoying, but it works)
Chiropractor
Stretching
Clonazepam (Which I am considering maybe trying Valium instead)
Meditation (I use something called Holosync)

New things that didn't work or not working yet:
Prostate massage ( It doesn't hurt and I have got some fluid out, but so far nothing has happened. Just now getting good at it)
Lyrica (this did nothing for me)
Saw Palmetto
Quercetin
Quell (Wearable tens unit device I am probably sending back cause it is way to expensive and barely brings any relief)
Flowmax(I thought this was helping, but after quitting it nothing changed)
Uroxatral (Pretty much same results as Flowmax)
Rapaflo (Same stuff different medicine)

I have had a few more kidney stones (a cluster of them) which doctors found very strange when I said it was a good break from my pelvic pain. I guess cause you get morphine for that and the other symptoms kinda take a back seat. Kidney stones suck, don't get me wrong and it's worse even, but the sense of maybe it being the issue kinda helps things too. Kidney stones are all gone and I am now on a potassium supplement called Urocit-K. An x-ray scan showed no more kidney stones. Stress is also a major factor for me as I get 10x worse when stressful events happen.

Thanks for reading. This condition really sucks and I hope everyone that suffered had an at least a bearable Thanksgving! Sometimes this is so bad I wish I just would not wake up one day. But, I keep on fighting for my family.


Fri Nov 25, 2016 3:12 pm
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Joined: Thu Sep 04, 2014 11:39 am
Posts: 609
Post Re: Update on my progress
Thanks for the message. Do you know if the stones were oxalate stones?

There are things you haven't tried yet so I guess it is a matter of patiently trying the things that have worked for others until we find something that helps us.


Fri Nov 25, 2016 5:59 pm
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Joined: Sat Apr 23, 2016 7:06 pm
Posts: 13
Post Re: Update on my progress
Yup, they were calcium oxalate stones and I even got a five or so page paper of what not to eat to avoid them from my Urologist. I have always had kidney stones and avoided dairy products like the plague, but it says dairy is low in that. It's mainly green vegetables and french fries! The stuff I loved and never thought were a problem.


Fri Nov 25, 2016 6:28 pm
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Joined: Thu Sep 04, 2014 11:39 am
Posts: 609
Post Re: Update on my progress
I was on a low oxalate diet for years and it never solved my cpps. Now I eat potatoes everyday. The only dairy I eat is homemade goat yogur.


Sat Nov 26, 2016 8:36 am
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Joined: Sat Apr 23, 2016 7:06 pm
Posts: 13
Post Re: Update on my progress
According to this paper potatoes are super high in oxalate unless they are Idaho potatoes. Maybe switching to that could help?


Sat Nov 26, 2016 4:33 pm
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Joined: Thu Sep 04, 2014 11:39 am
Posts: 609
Post Re: Update on my progress
No way I can find idaho potatoes in my local farmer market or anywhere else as I live in a mediterranean island. It is interesting to know that anyway. Thanks for the info.


Sun Nov 27, 2016 7:39 am
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