My Journey

[DMcU]

Hi!
This is my first post, and I would like to share with you my journey with CPPS.

Here it goes – I know you don’t discuss infections on this site, that’s fine. I strongly believe that chronic prostatitis / chronic pelvic pain syndrome isn’t caused by infections but rather as a result of the things commonly discussed on this site. I developed chronic prostatitis / chronic pelvic pain syndrome 6 months after an infection had cleared up. I was infected with chlamydia by a girlfriend a year ago, fine, went to STI clinic and got treated, 4x Zithromax. Symptoms reduced but returned. Went to doctor, she done a swab test, returned positive but gave me 4 more Zithromax on the same day. Symptoms returned so I went back. Another swab test and given Doxcylcone for 10 days. Results came back negative. I was happy at last. But then symptoms weren't alleviated so I returned yet again. The doctor was baffled saying that it was probably just inflammation after the course of the infection (treatment took 3 months just to get rid of chlamydia even though I had went to the STi clinic 2 weeks after contracting it in January). I mentioned prostatitis from my own research and she 'google'd' it and agreed that there was a chance but that I'm very young (not long 23) and that I should be able to fight it.

So that was the lot. I lived with it. I went to the herbal store and got arnica for pain and inflam and saw palmetto. Nothing but pain in bladder as it was full and post-urinary pain really and maybe pain in testicles after ejaculation but nothing too major. But then in September I noticed I felt as if the glute muscles in my thigh's were always tight, as if I had been exercising abnormal amounts. I head for a walk every day for 45 mins. I didn't think much of it. I noticed that when I was in the cinema I was uncomfortable, restless, as if I couldn't relax my legs. I noticed that it was hard most of the time to pass urine and that the flow wasn't great and that I started to need a tap running to start the flow (flow was hardly the correct word).

As October came I began feeling heat and inflammation in my testicles along with burning in the urethra (dysuria). I was awoken at night and early-morning to urinate. Also these pelvic pain started to lock up my legs. Strips of heat ran down my legs when I went to bed and it felt so hot that I was burning myself. Driving, sitting, sleeping, everything was painful. Because of the inflammation in my testes, they hung very low, making walking painful. I felt an epididymis feeling in my testicles regularly which is truly terrible. This flared up and I went to A and E one Friday evening after struggling to finish the working day. Prostate exam revealed a seemingly normal prostate, epididymis wasn’t more uncomfortable than it should be when it was evaluated. But why the inflammation?? My whole scrotum flared up after the routine exam.

I was given a week of doxycyclone anti-b's which did seem to help. But I thought this was non-bacterial??

I went to the urologist (apparently the best in Ireland) and showed him a diary I kept of symptoms. He did the same check I received in A and E, nothing out of order. I was prescribed 6 weeks of Ciproxin and 3 months of alpha blockers which relax the muscles of the prostate and bladder and Diafene, an anti-inflam. He said I had chronic pelvic pain and non-bacterial prostatitis.

The pelvic pain became worse after seeing him despite my many treatments. I had to leave work - a 23 yr old having to go home because of some embarrassing excuse - I mean this was given to me - these were some the things going through my head at ninety miles an hour. I obviously left that girlfriend and was seeing another girl before this became a problem, a really good person. I suffered around her but never mentioned anything. I couldn't tell her as she was always so cheery and I liked having that, it cheered me up too.

I went home though, and had hot baths, reiki treatment (my mother is a reiki healer) and went to a spiritual healer. Symptoms changed. I wasn't so 'locked up' in the muscles. I developed pain in the perineum between the legs and still burning in urethra and night-time visits to the toilet but I grabbed back some quality of life. I went to a leisure club on Friday night's had my jacuzzi and swim and steam room and some relief. I did Kegel pelvic floor exercises which aggravated my problems but I learnt that I needed to work through this pain. My mam's reiki showed some improvements in my heart shakra after two weeks at home, there was actually a faint red to be seen by her as opposed to black, the absence of all colour and energy. My form improved but I would regularly associate with the pain through relentless thinking and saying 'but what if this or that hadn't happened'!?! I had to stop this. I had this condition. It wasn't mine, my body wants to heal and be normal so this has to go. That was my new attitude, it was hard though.

I received eight reiki treatments from my mother and two spiritual healings. My mother said that my heart shakra was dead, i. e. I wasn't doing good. This didn't surprise me as I was hit fairly bad with depression up to going home. Also, she commented that my route shakra (pelvic region and organs) was black, dead. She could feel the cold right down to my knees which signifies pain/inflam etc. The alpha-blockers were said to cause the sperm and semen to enter the bladder due to the (now) relaxed state of its muscle. I didn't find that this entirely occurred. I noticed a decline in the amount of ejaculate but there was always some.

At this stage I was also taking herbal echinachea, arnica 30c, quercetin, zinc (prostate uses more zinc than any other bodily organ), turmeric (anti-inflam and anti-carcinogen), ginger (good for burning in urethra and anti-inflam), chlorophyll tablets, calcium citrate, vitamin supplement although I found that nothing ever alleviated my symptoms remarkably. There was always something there. I developed chronic fatigue, I stopped socialising.

The anti-bi's were causing constipation, or are said to, and this seemed to press onto the bladder causing it to fill quicker and I always felt that I couldn't empty my bladder fully. I often felt a burning pain in my tummy if a toilet wasn't available, driving etc and needed to go. I think that the fact that I always felt I had a stool in my anus and that it was pressing on my bladder didn't help. I felt pressure in my anus when I tried to pass urine, as if some muscle had to relax. Sometimes it felt as if it was pushing up against my coccyx or tail bone. So if I had a stool to pass, and I often felt I needed to up to 24hrs before I actually did pass it and that it wasn't ready to pass, I had problems urinating, perhaps due to the stool obstructing or pushing against the prostate, I'm not sure. This also meant I was a number one candidate for a return of haemorrhoids which I was a most suitable host just before all this happened. The degree of pain in my anus increased, stinging more and more, creeping, crawling feeling and swollen feeling. My penis felt very cold and it dripped for minutes after urination, particularly if I sneezed, sat down or got up.

My evening walks were dreaded due to the testicular pain and the fact that they didn't seem to recede back up but were left hanging and hitting off my legs. I also began to forget how to walk - this sounds crazy I know. I hurt my right foot every time I went for a walk, I couldn't control it, it flapped stupidly down on the ground and caused my toes to become numb. It was as if I lost control over my co-ordination.

Urinary frequency began increasing. I noticed in work that I needed to go a lot more constant. I cut down my six cups of tea a day to 1 and drank herbal tea (4 cups) plus 4 glasses of water a day. But I couldn't get relief, the pressure in my urethra was unbelievable. I could actually go to the toilet four times in the half an hour before bedtime, trying to clear out all the urine so that I'd stand a better chance of sleeping. But I had to realise that anytime I awoke it wasn't that I had so much urine in me that I was bursting but that my urethral burning made me feel the urge to urinate, perhaps to subconsciously 'flush out' any bacteria/pain etc. I hadn't a ly-in in 6 months due to this!!

I took prune juice for the constipation which softened things, I religiously ate porridge with honey for breakfast with a glass of prune juice. I drank the water from boiling broccoli (I had broccoli with EVERY meal), even putting turmeric and ginger in it - yuck! I laced everything in both these spices which are meant to de-acidify the urine. I was very disciplined. I drank cranberry juice with dinner for months but then realised that this probably irritated things and stopped.

I went to a chiropractor for the pelvic pain he didn't do much. He found small amount of tension in my back but said otherwise I'm very fit, (farming background, physically fit, weight – 70 kg, Yoga etc. ). I went twice but stopped then as I had learned Yoga from my parents and practised this in the mornings before my journey to work and in the evenings after work. I became aware of all the alternative methods of healing and never declined anything.

My uro gave me sachets of cranberry solution 'cystopurin' to help with the burning, it helped for one day that's all. I don't have nor never did have cystitis. This is what my urologist prescribed me who is actually the most advanced one in my country (Ireland). My experience of these people isn't good. That's all I'm going to say. It annoyed him I knew so much and kept a diary.

I felt my manhood was gone, I hadn't looked at myself in the mirror for months, barely shaved, did the bare essentials, didn’t wear any of my nice clothes, just threw on whatever was comfy, what was the point of treating myself to anything nice when I couldn't enjoy it. My relentless excuses for having appointments here and there roused suspicion in work. I didn't want to be an item of pity. Work made me get up out of bed ( It wouldn't be any good staying there in pain) and see all the other morning people of this world - they looked sick but they weren't. As I looked at past photo's I just used to say to myself 'you didn't realise how lucky you were to be able to really smile, to sit down and not feel pain, to socialise, to watch a film (I tried five times to watch 'Ray' the film but wasn't at ease)'.

My symptoms were cyclic, I spent hours during the week researching things to do with prostatitis/pelvic pain/urethritis (which the urologist said I might also have). Imagine prescribing someone who has been suffering for 1 year 6 sachets of over-the-counter concentrated cranberry without having even received a prostate secretion! This condition had cost me nearly €2, 000 and lots in regard to personal enjoyment of life.

I kept myself very busy, always walking somewhere, I hadn't watched TV for months, even though I had digital TV being paid for! I started to ignore pain, I kept walking with arms flailing wildly (chiro's advice) and used to say out loud - 'Come on is that all the pain you can give me!?' Aggressively I fought this after coming off the anti-b's. I had my daily routine of herbal tablets and when I prayed I didn't pray FOR help, I didn't beg, I thanked God and the energies of the world for the help they WILL be giving me. This, I believe, is the desired way (ref: book 'Conversations with God'). Positive thought. Ok, I was in pain, but I could live, eat, smell, taste, talk and hear. I could do anything anyone else could do, ok I'd need an extra pit stop or two for the toilet but I held onto the day that this would be gone. This is what I wanted, this is what I wanted for Christmas, this put a smile on my face.
I don't know, I think that when a person has a chronic illness that the patient becomes the doctor. I seemed to know more about this than any doctor (I do have degree of biology as well) and that I knew a daunting amount of information about it which annoyed the urologist.
Disease is only DIS EASE at the end of the day. I try to be at ease, to relax, play music, make plans, show this foreign entity that it's stay is up. I want to revel in the bliss of advancing, of climbing, of ascending up that hill inch by inch every day, that's all I want. Just an inch, this is my journey. I had never lived so much or felt so alive ironically as I do. I'm paying so much attention to my body.

If anyone out there has got through a similar condition I would appreciate any help/recommendations/alternative remedies. I have a homeopath in the new year. Fingers crossed.


"Health is a crown worn by those that are well and only seen by those who are sick"

[webslave]

Wow, well described, and easily recognizable as the history of a UCPPS case. I suppose you've read David Wise's book by now?

[carld]

This is a fantastic account of UCPPS...and what we have all gone through...this is our anthem. Well written. I can tell already that you will recover...

Please read my starter list...

Best

[DMcU]

Wow, well described, and easily recognizable as the history of a UCPPS case. I suppose you've read David Wise's book by now?

Thanks, and thank you so much for all your work, you've brought together people who are suffering and shown them not only is there a safety in numbers but also that the overwhelming desire to get better that everyone fosters is so compelling.

I have the book AHIP thankfully. The largest bookstore and book suppliers in Ireland - Eason's (English firm) couldn't find the book on their search engines so I made them google it. But still they couldn't actually get it for me. (Which only voices yet again the lack of awareness about this condition). I went to a small and local bookstore who told me - It's coming from the States, €33 and it's yours in one week! Sorted!

This condition is completely rare in Ireland, the doctors all say that they just never come across it amongst us Irish. Every PT I've spoken to wouldn't dare do the necessary TP release and are completely untrained in this specific ailment and actually laughed at me when I said that there would most likely be internal TP's to release! The last time I had an appointment with my uro (the supposedly best in the country) he got angered at how much I knew and said 'Are we going to sit here and talk about chronic prostatitis / chronic pelvic pain syndrome all day'! Here's some info about me:

I was a vegetarian for most of my life, only eat fish and very small amounts of white meat.
I was diagnosed with IBS 3 years ago, diet of too much potatoes seemed to be the cause after I kept a food diary but I'm grand now and manage it fine and spuds don't bother me anymore.
I do Yoga and am extremely flexible (foot over back of head etc.).
Farming and rural background - physically fit (without playing highly aerobic sports)
I fell through a roof year and half ago and fractured the sole of my foot along with injuring most of my limbs - perhaps this 'shock' helped start CPPS? I made a complete recovery and the x-rays showed this also. (My mother is a reiki healer and I took Arnica which has notorious bone stitching qualities).
I feel that I have 'forgotten' how to 'hold' myself in my lower abdomen and pelvis basically. How to sit and what to do with my legs! It might sound crazy but it's as if they are buzzing all of the time. Keeping my feet close together, be it sitting or in bed exacerbates things too. And the scrotum is continuously shortening and lengthening. Every time I have an appointment with a PT they always say they want to 'talk' first, which is fine but as I explain to them my condition they back away. I may learn myself how to find and treat these TP's as detailed in AHIP. I had a staff party last night and actually drank for the first time in 6 months - 6 pints of Guinness! 'A drop of the pure, the Paddie's cure' as they say!
I felt this morning that my muscles where fairly relaxed but of course as the day goes on the feeling returns slowly.

Let's stick together as we are special and we are good people and let us get better together and revel in health. I'm so happy to be part of the movement that this site commands and I'm thanking everyone in advance for any thoughts/correspondence I receive.

Be well.
DMcU

[Jay]

Hi there,

Welcome to the boards. Sorry that you have to be here, but glad that you found your way!

Your experiences are not surprising. While there are exceptions, urology is a surgical specialty, which means most urologists are unfamiliar with (or plainly uninterested in) issues they can't resolve in that fashion. It's beyond their comfort zone, and not nearly as profitable. Very few physical therapists are intimately familiar with the techniques necessary to treat CPPS, most of those being in the United States. I believe the only PT on your side of the planet with some knowledge is Bill Taylor, who is in Scotland.

I would agree with the others (as a layman, mind you) that your case does sound like CPPS. There's no way of discerning the root cause in most men, and especially not in men who've had physical trauma. You've arrived at the point where diagnosis is behind, and treatment is ahead. However, for what it's worth, a lot of your symptoms are telltale of muscular dysfunction. For example, the contraction and relaxation of the scrotum is controlled by the cremaster muscle - yep, your scrotum has muscles. If you're having spasms down there, that can be affected.

If you're able to attend something like the Wise-Anderson Protocol clinic in California, that would be a great option to explore, but I understand the financial burden. I've been unable to make it from Florida for that reason. Your next best alternative for PT is to see Bill Taylor, who is quite a bit closer. For the mental aspect of things, I would suggest seeing a cognitive behavioral therapist, or another kind of therapist who is familiar with chronic pain. I say this not because you're crazy, but because people so trained can teach you how to control your anxiety over your condition, and to relax in turn.

[webslave]

The last time I had an appointment with my uro (the supposedly best in the country) he got angered at how much I knew and said 'Are we going to sit here and talk about chronic prostatitis / chronic pelvic pain syndrome all day'!

See, that's why I run this site. I too suffered at the hands of callous urologists.

I was a vegetarian for most of my life, only eat fish and very small amounts of white meat.

Iron and B12 could be a problem; supplement them perhaps.

I was diagnosed with IBS 3 years ago, diet of too much potatoes seemed to be the cause after I kept a food diary but I'm grand now and manage it fine and spuds don't bother me anymore.

Telltale sign of food intolerance; see my sig for link to Amazon store and Brostoff book on this topic.

I fell through a roof year and half ago and fractured the sole of my foot along with injuring most of my limbs - perhaps this 'shock' helped start CPPS?

Explains the limp foot. You could have damaged a disk that is impinging on the spine; only MRI will see that. This trauma could easily have played a part in starting the condition.

Overall, I am confident you will improve. You have the right attitude.

[DMcU]

Ok this is interesting -

I was walking through a supermarket today and I saw two consultant chiropractors at a stand offering advice and I approached a male who was from America and I explained my condition to him and told him that my previous chiro had reported that apart from a bit of tension midway down the back, that I was in good physical shape.

He sat me down and after 2 mins he said that my pelvis was rotated to the left (probably due to the fall I had through a roof from 14 foot).
He then told me that he had suffered this 'non-bacterial prostatitis' and agreed that this very diagnose was vague and all-encompassing, especially after he made a full recovery after getting his pelvis adjusted a number of times.

He said that he often thought that he had testicular cancer in the time of his suffering and that urinary urgency and frequency became a haunting in his life. This was the first time I ever met a fellow (former) sufferer in the flesh. He is going to do a full-body examination (which was done before by another chiro) and then take x-rays of the pelvis.

I hope that this might shed light upon a possible cause of this condition and I will keep you posted as to how the results go.

It must have been faith that 1. he had suffered this, 2. that he was aware of the Stanford/Wise-Anderson Protocol, 3. that his own pelvis was rotated too!

This is all very exciting and perhaps even may hint that a checkup of the pelvis physically and/or x-ray could be worthy of being on the trouble-shooting list!!

[webslave]

Don't want to discourage you, but giving credence to a chiropractor may be a mistake. Did he actually show any real knowledge of the Stanford/Wise-Anderson Protocol, or merely nod wisely when you mentioned it and agreed with whatever you said about it?

[DMcU]

My first chiropractor who did a full-body evaluation didn't notice that my pelvis is slightly rotated after a farm accident a year and a half ago. This other chiro whom I stumbled across in a shopping centre noticed this along with other things in the spine and neck which need attention. When I mentioned my condition he said that he too had suffered from it a few years ago and that he recovered after his pelvis was re-adjusted. I did mention that there is very little known about this condition in Ireland and the only place that solely treats it is in Stanford. He was aware of this, saying 'that's right, I have heard of that'. I have a physical evaluation tomorrow followed by x-rays of the pelvis. It is physically rotated though, I can feel that myself as one side of the back of the pelvis is portruding more than the other. I understand that I will still have chronic prostatitis / chronic pelvic pain syndrome even if the pelvis is corrected as it will still take time to relax the muscles but it would be great if this corrected and things started improving slowly even.
I have a question for you webslave: My urethral opening is fairly red and swollen each side and it even constricts urine to some degree. Is this a regular enough a symptom?

[webslave]

Yes, that's a common symptom. Search for the word "meatus" here.

[DMcU]

Update:
X-rays received back -
8 vertebrae needing attention, 2fused vertebrae in neck since birth probably
Pelvis rotated 12mm, anything over 2mm can be troublesome

The vertebrae are pressing on nerves going to prostate, intestines,testicles etc.

Conclusion: I went to chiro before just to troubleshoot and was told that I was grand, just a bit of mid-back tension. Turns out after x-rays that years of hard physical work have left my back half-worn out. X-RAYS are extremely important in ruling out physical misalignments etc.

Physical Therapist: First session showed trigger points in psoas muscle with chronic tension. This caused the spine to bow out of alignment as well.
This is all thankfully correctable, or so I have been told and I have paid 1,500 for treatments to correct my back over 16 weeks plus spine care classes. chronic prostatitis / chronic pelvic pain syndrome has developed due to all this so it's a matter of treating the physical bones, muscles and then seeing what is left to sort then.
I hope that this could be of some help to someone who may, as I have, had an accident.
Be well.

[webslave]

Good that you're getting somewhere with this. Most people have no test results to point to.

Please keep us informed of your progress in this thread.

[DMcU]

Ok a quick update.

8 sessions wit my chiro and every time about 4/5 vertebrae have been 'out' or squashing nerves going to organs such as the adrenal glands, kidneys, testicles and stomach. This is what I'm told anyway.

How have I been feeling? Well the pain/heat running down my legs when I'm sitting or lying down stops for up to a day after a treatment. A friend of mine does sports massage and muscle therapy and he found some chronically tight muscles in my back and legs that are contributing to my condition by pulling my pelvis out continually. I get pain in hip flexors after walking for a short period and have to stretch to rid this for a while.

Foamy urine especially in the morning. Now it feels as if the burning in the urethra builds up over time and gets worse as the bladder fills. I feel that the levator ani muscle is the main culprit at the moment as I'm always constipated and I feel that this muscle or others aren't moving things along at all. I came across a physiotherapist who specialises in urology problems. I have to meet with her soon and I will ask her if she can treat the levator ani. Most PT's etc. aren't comfortable treating this muscle and aren't properly trained to do so.

I have a re-evaluation and a second x-ray in 2 weeks to see how much my spine and pelvis have been re-adjusted. The chiro's believe that the mis-alignment could easily have caused this condition, we will see anyway.

What I would like to see improving is:

1. Urethral burning. 2. Pain in anus. 3. Testicles - always being lowered and heightened. 4. Muscular pain making me feel like I have a fever.

I do feel a bit better though I am still worried about the foamy urine, I never had this before and I bought a urine tester which shows a trace of protein in the urine. My GP did send a sample off for a complete evaluation back in November but didn't find excessive amounts of protein, but I feel that the foamy urine has worsened since then. Anyway I would be very surprised if I have kidney problem and I do drink plenty of good fluids such as water and herbal tea (non-caffeine).

Any comments welcome from my allies!!

[webslave]

My comments are

1. Get your spine evaluated with proper imaging (eg MRI) through an orthopedic surgeon. Expensive but worth it. You are spinning your wheels in the sand with chiros.
2. Visit the Wise clinic or a good local PT who knows how to do internal TrPt release (if you are in Ireland, your choices are very limited though)

Small amount of protein in urine is not a problem.

[DMcU]

Good advice, I have a re-evaluation in 2 weeks where more x-rays will be taken and compared to my 1st set. An MRI was conducted back in december showing nothing abnormal thankfully. My PT is reading my copy of A HEADACHE IN THE PELVIS and is very interested in my case.

I have even since found out that not only is my pelvis rotated but has lateral posterior tilt. I have thought a good bit about IC and PFD/CPPS and I feel that now, after getting this physiological information from x-rays, that it could well be chronic prostatitis / chronic pelvic pain syndrome rather than IC, but I'm not ruling out IC as a condition that could have developed after CPPS/PFD. I feel I'm gaining more knowledge as to which came first, the chicken or the egg, i.e. was the accident I had where I feel and landed standing up the cause of all this (which would be structural and skeletal)? Of course then the muscles would adapt to this new skeletal posture over time (I was pain free for a time) and then start the vicious cycle we are all too familiar with.

I'm actually to meet with a physiotherapist who specialises in the urology side of things this week for a 'chat'. I feel personally that my levator ani is the major muscle affecting me at the moment and my anal sphincter becomes very tight when I feel the more stronger cramps and spasms in this muscle which radiates pain to the perineum and urethra making the meatus red and more inflamed than it already was.

If this physio seems reluctant to treat this muscle and to check around, as I have a suspicion that the piriformis could be causal of symptoms as well, well then she is wasting both our time. My experience so far is that PT's and physio's all try to refrain from doing internal TP release. One PT even said that he is a homeopath as well and that he would prefer to treat me with homeopathy. I wouldn't think this would help with spasms of such strength, I would have no problem taking homeopathic remedies as supplements, as I do - arnica 30c and Sulphur which help with healing, pain and burning in the urethra (sulphur) apparently.

Orthopedic surgeon - I will definitely consider this as the next thing to do as I want to give three specialists a chance 1st -
chiro, PT and physio.

Thanks.