UCPPS - Prostatitis, Interstitial Cystitis Forum

Hi All-

Lots of material for me to cover here and I am starting to read posts. I also purchase the Headache in the Pelvis book and am studying that as well.

I thought I would share my story since I am new and do have some questions at the end of this long post.

Symptoms in May 2012: constant dull pain in groin, constant urge to urinate, more frequent urination day and night, dull ache in testicles, burning at tip of penis after urinating, and sore lower back. Went to Doctor and he said my prostate felt soft and spongy, so it may be infected. He put me on 30 days of Cipro and said to stop after 2 weeks if I feel better. 2 weeks later my symptoms were gone and I stopped the Cipro. Yeah! I thought I was good to go and back to life as normal after 4 weeks of hell!

Symptoms return in October 2012: Urgh! I had a very traumatic personal event and 5 days later I started having a dull aching pain in my lower abdomen about 2 to 4 inches under my belly button that hurts worse while sitting or bending over. The next couple days I saw most of the symptoms from above return. Doctor suggested prostate infected again or still and put me back on Cipro for 30 days. Oh man did it hurt when he touched my prostate! I almost urinated right then. Also just did yearly blood work and they found hidden blood in my urine. Doctor said this could be from prostate.

After 2 weeks I felt no better and my anxiety was high thinking something was seriously wrong, so I went to ER for diagnoses/help. They did a pelvic CT scan without contrast and it came back negative. ER Doctor suggested prostatitis and that I need to see a Urologist. They gave me a small dose of morphine and all my pain disappeared! My wife said color came back into my face and that I was normal for the first time in a good bit. He gave me Xanax and some pain medication to help me until appointment. These medications helped me cope and I was able to function in my daily life.

2 weeks later I see Urologist and he takes urine samples before and after prostate massage. He said prostate felt normal, but symptoms suggest prostatitis. Told me to stay on Cipro until test results come back. He phoned 4 days later and said no more hidden blood or bacteria found and to stop the Cipro. I made an appointment to come in for a cystoscopy to check bladder.

By the time I came in to do the cystoscopy my remaining symptoms were frequency day and night, urge to urinate at most time with an occasional dribble, and the constant dull pain in lower abdomen under belly button. He took samples from my bladder and another urine sample to send to pathology. He said my bladder appeared normal during the procedure. I got to watch and saw the whole path to the bladder. The prostate looks like a small orange with its lobes with small vessels in it. He said my prostate looked good from the scope. He said my voiding issues could be due to residual inflammation of the prostate. He suspects the voiding issues/ lower ab pain will go away when the inflammation does and to re-visit in 30 days saying if pain still present then we have to do a ct scan with contrast. While I had hope my anxiety was through the roof at this time with all the uncertainty.

While waiting I have done the following: hot baths and night seem to help, several visits to the chiropractor who practices trigger point therapy, and have started seeing a psychologist to help with the anxiety attacks. I also picked up the Headache in the pelvis book to read. I already owned a well worn copy of the Trigger point therapy and the Touch for Health books dealing with back issues in the past. My chiropractor worked on my external trigger points and I did as well the best I could. Some days I would feel 80% or so and get excited, but each time meet with a relapse of lower ab pain and frequency. This causes me major anxiety thinking I will never be normal again....

I have made the following observations:

• lower ab pain worse while sitting, bending over, laying on left side, after strenuous activity like horse playing with my young kids, bicycling, or shoveling/raking leaves.
• pain is less while standing, walking, while I lay down, hot bath, after large meals, while taking deep breathes from the belly
• the following trigger points maybe helping with my frequency issues: pyramidalis, Psoas, and iliacus.

I am now 1 week away from the appointment and am still hurting in the lower ab with the frequency issues.

I do have a couple questions:

1. is this lower abdomen pain 2 to 4 inches under belly button at the surface common with prostatitis?
2. if so can anyone point out some stretches or trigger points to help this one?
3. anyone else have hidden blood in urine? if the Cipro helped this as my Uro suggested then shouldn't I feel better now? maybe I was in the 10% with actual bacteria?
4. why did symptoms vanish after the round of Cipro in May, but not in October?
5. Does anyone know of a PT in Houston Texas for internal trigger points? I bought the ky and gloves and plan to attempt once I read a bit more and feel comfortable that I will not make things worse.

Thanks in advance for any feedback.

I'll try to answer your questions and give you any advice that I have learned over the year of my issues. You can read my full story in the general discussion.

Anyway: Before I answer your questions, I want you to understand that "Prostatitis" - which you will learn in the book that you purchased, is a term that probably isn't the best for the condition you are suffering. In general, we like to call it "Chronic Pelvic Pain Syndrome" or CPPS, because there is NOTHING wrong with your prostate in 90% of the cases.

You have to understand that if you have no bacteria in your prostate, then you don't have Prostatitis. Uros often miss-diagnose patients with this, and that's what happens to most of the patients with this.

To answer your questions:

1. Yes this is normal, its called "SupraPubic Pain" -
2. You will be able to find out what to do in the book.
3. Some uro's believe that an infection in the prostate is hard to find, have you had your semen cultured? I did this... My Uro still thought it may be beneficial to stay on Cipro. Let me add that this isn't a great idea. The Cipro even for 1-2 weeks is an extremely strong medication. It will destroy bacteria anywhere. Stay away from Cipro if you don't have an infection. And remember that sometimes the power of a placebo works extremely well.
4. Most likely the Placebo effect, it happened to me too.
5. Webslave will probably be able to help with finding a PT.

I suggest that you do this:

1. READ headache in the pelvis, it's astonishing how much information is in there (including stretches etc..)
2. Buy any accredited quercetin product or any accredited quercetin product from farrlabs, there is a free trial posted on this forum if you search. I have been taking any accredited quercetin product / any accredited quercetin product and it's done wonders. Please please try this. I know that they are pricey, but give it a try. It's a natural anti-inflammatory which will help sooth the walls of your pelvic muscles.
3. Understand that you do not have an infection, and you do NOT have "Prostatitis" - what you have is pelvic tension due to stress and anxiety. You need to learn how to relax. The reason why your symptoms are helped by taking Xanax is simply because it's meant to relax you. Try taking a muscle relaxer like Flexiril or a Benzodiazepine like Valium and you will see how it created wonders - this is not a long term suggestion, it's merely an experiment you should try to prove to yourself that there isn't anything really wrong with you, but more of an anxious problem that is causing so much pain.

I am currently taking anti-depressants and Alpha Blockers to stop nerve pain (Elavil) and sooth the walls of my pelvic floor (Rapaflo). It may be in your interest to get on a regiment while you heal yourself. I say this because it is VERY difficult for someone to focus on relaxation and getting better when you are in pain, it's what's called a never ending "Downward Spiral". And don't get confused with the "anti-depressant" part of the medication of Elavil, its function is to block nerve pain cause by the tight walls. This will help you with your symptoms and allow you to free your mind to heal yourself.

FINALLY - please see another Urologist. I stress that because most Urologists nowadays are not well informed about CPPS / Prostatitis. I was lucky and I found a good doctor who has helped me tremendously in the Beverly Hills area. Webslave may be able to help you find one as well in that area, see the doctor and get on some helpful meds to help you with your recovery, because it can be done, and it will be done if you have the support and help you need around you.

Try to always stay positive, I know it's hard, but try hard.

Good luck

Tylerk, you are another classic case of CPPS. The microhematuria is not significant.

To find a therapist, do to the Doctors and Clinics forum and search that forum for "houston" (the search field is on the left hand side, don't use the global search on the right hand side of the screen).

sufferinginpain: Thank you so much for the response.

No semen tests have been run on me or mentioned yet.

So does the cystoscopy showing the bladder in well condition mean interstitial cystitis is not a diagnosis? My GP and Uro mentioned IC many times as a possibility, but felt too soon to give that diagnosis. I meant to ask if it was ruled out after the bladder camera procedure, but I will this week. At that time I was worried it was a lesion in the bladder causing my pain issues.

My GP suggested a visit to the GI DR as well, so I visited him Friday and he has ordered 4 tests looking for IBS or lesions in the lower bowels. Ultrasound of pelvic/lower ab is one of them. I did a Colonoscopy/endoscopy last year, so no need for that again he said. I do not have any GI type symptoms that the GI asked me about accept the pain in the lower abdomen. I asked if anything in the gastro side of things could be causing my frequent urination and he stated that only constipation may affect my urination issues and nothing else GI related would. Going for tests this week and then have to wait for results/re-visit.

“I am currently taking anti-depressants and Alpha Blockers to stop nerve pain (Elavil) and sooth the walls of my pelvic floor (Rapaflo). It may be in your interest to get on a regiment while you heal yourself. I say this because it is VERY difficult for someone to focus on relaxation and getting better when you are in pain, it's what's called a never ending "Downward Spiral".”

My mind is twisted right now and relaxing seems like a pipe dream. Mentally I am struggling with catastrophic thoughts about my pain and feel the need for the Dr’s to convince me otherwise. Urgh... The fact that I am in constant pain and always making note of the bathroom locations is fueling these emotions. It is a vicious cycle right now. Even though I have no evidence of something “serious” I can not seem to shake the thoughts of doom or life long suffering.

I did mention to my uro that Xanax seemed to give me temporary relief and he did allow me to get some. I am terrified he will not refill my script this week, since they are my only hope for sanity at this time. I will talk to him to see if valium maybe a better option. As well as Elavil and Rapaflo. The Elavil sounds like something I want to try for sure to see if we can stop some of the pain.... He mentioned a anti-spasm medication, but with a different name. Reading the book and posts here has given me some hope that I can fight this beast.

“Understand that you do not have an infection, and you do NOT have "Prostatitis" - what you have is pelvic tension due to stress and anxiety. You need to learn how to relax.”

I most definitely have an anxiety issue. Looking back I also had many of the symptoms for the previous 2 years but didn’t acknowledge. Pain at the tip of penis, occasional groin pain, and frequency(including at night) is something I have dealt with since the summer of 2010. I just assumed it was that my pants were bothering me, working out too hard, and an increased fluid intake. I recall buying all new softer underpants that summer to try and help. It just got much worse here in 2012.

Thanks again for the advice!

webslave wrote:Tylerk, you are another classic case of CPPS. The microhematuria is not significant.

To find a therapist, do to the Doctors and Clinics forum and search that forum for "houston" (the search field is on the left hand side, don't use the global search on the right hand side of the screen).

Thank you webslave!

Do you mean the microhematuria is not significant to CPPS? Like it maybe caused by something else?

Yes. There may be an unrelated problem with your kidneys, so get the appropriate tests for that.

working out too hard, and an increased fluid intake. I recall buying all new softer underpants that summer to try and help. It just got much worse here in 2012.

lower ab pain worse while sitting, bending over, laying on left side, after strenuous activity like horse playing with my young kids, bicycling, or shoveling/raking leaves

By the by, you probably want to stop this for quite a while.

For some reason, I seem to know who most of you are before you even show up. My signature has been the same for quite a while. I must be :

1. Brilliant and clairvoyant. (Hint- not likely)
2. Reading roughly the same story repeatedly - from multiple sources.

(hint- we live in a western world in an obesity and diabetes epidemic, the large majority refusing to do **any** exercise consistently except at gunpoint, much less in pelvic discomfort)

-jjf

Yeah superuse besides giving up exercise I have given up four of my favorite things for now: sex, beer, coffee, & smoking grass....

life in pain kind of makes you see things different.

Spent this am in the hospital imaging center getting lots of X-rays and ultrasounds the GI doc ordered. Now the waiting begins for results.... He suggested possible IBS causing pan.

Uro wants me to wait another 30 days and see if pain continues before we try Elavil and head to PT.

Hope everyone is doing well heading into the big holiday week!

Cheers
TK

Tylerk:

You need to switch Uro's if its taking this long. A trained or knowledgeable uro can tell if you have a tense pelvic floor in minutes honestly. So if you aren't seeing any results or recommendations towards that, I would tell you not to prolong it. (Obviously testing for other things are good, and its only a start point)

Just make sure you do regular tests, and don't get too crazy of doing the unnecessary ones. Always get a few opinions, I can't stress this enough. I had to see 4 different Uro's and this is LUCKY! All other 3 uro's did all kinds of dumb tests before they just sent me home with another 30 days of Cipro / Alpha Blockers... You name it. STD tests, semen culture, camera's... not cool.

If you need help finding a good doctor, it may be worthwhile to spend the money to see one that knows how to diagnose CPPS or has good experience with it so that you can at least maybe avoid all those expensive tests. You have classic signs of CPPS - and your anxiety is leading you to think the worst of things, which just isn't true.

The reason why the Xanax works is because its an anti-anxiety pill :)

Either way, you should pick up the Headache in a Pelvis as soon as possible, and read the book - you will see eventually that no drug will make you better but yourself. There are a lot of recent studies that are showing that all medications are nearly just a placebo, and doesn't really do anything - true or not, the best way to completely recover is relaxation.

We gotta focus on relaxation of the pelvic zone - learn how to do that in the book, or you can attend the protocol. But since you are new to this, I'd suggest you pick up the book and read it, more than once :)

Hey Tylerk, I've been where your at. But don't give up. There is a fix. If you need help, I'm at your service.

SufferingPain thank you for keeping an eye on me and sharing your advice.

My URO suggested he wants to see if pain subsides before we hit the 90 day mark before he calls it CPPS. If pain still present when I visit this month he wants me to start Elavil and go to physical therapy to work on pelvic floor muscles. I will say my prostate wasn't near as painful this time around when he massaged for fluid tests. It only hurt when he touched the left side. Ouch! Last time it hurt all over while he massaged for fluids. I am hoping that is a sign of it healing? Do you think we're heading down right track?

All scans and ultrasounds ordered by GI doc came back negative so not sure what else to rule out. Uro says my kidneys are good and he says he sees no evidence of lesions. Not sure my anxiety is any better but nice to know nothing catastrophic brewing.

I have read the book and am still studying it. I am seeing chiropractor once a week who is working the external trigger points and working on t12 and t6. I hurt like hell for 2 days after, but feel some improvement after that. I am stretching and practicing relaxation daily. Not sure I understand the relaxation methods mentioned in the book, so I contacted Dr. Wise about tapes but he suggested finding relaxation methods online for less. I also have been doing yoga to help relax and stretch. I am meditating while envisioning blood and oxygen rushing into my pelvic area. Oh and started taking any accredited quercetin product this week as well. So I am working hard to combat this ailment! I plan to attempt some internal trigger point work soon.

Still taking a benzo a day, but more for anxiety attacks as they creep up on me most days. The benzos are only thing keeping me sane at this time as well as easing my pain or worrying about the pain.

Any tips on relaxing the pelvic area?

I had a string of 6 days where I felt about 70% normal, but had a relapse after jogging a mile while teaching my 4 year old how to ride a bicycle without training wheels. I knew it may cause trouble, but just sucked it up since I didn't want to miss such an exciting event. Shortly after I was meet with pain and frequency issues for days to follow. Chiro read me the riot act and said I need to let the muscles heal. Saying, "you wouldn't arm wrestle with a broken arm would you?" So I am trying to figure out the trigger for frequency issues since they are only present at certain times. Urgh! Not sure if it's activity or maybe something diet or just anxiety. Seeing these windows of improvements has definitely lifted my spirits. Please please please may they continue.

I feel kind of cheated for going thru holidays while dealing with ailment as I wasn't fully present since I am so consumed with either not feeling well or worrying about not feeling well. Urgh! I keep chanting in my head "live life"! I am just happy to be here! "Stay positive!"

TrunksXVI wrote:Hey Tylerk, I've been where your at. But don't give up. There is a fix. If you need help, I'm at your service.

Thank you! I am seeking a fix and will not give up.