My recovery from Chronic (and debilitating) Pelvic Pain/PN

In January 2016, at the age of 23, I came down with severe pelvic pain that would go on to cripple and debilitate me for the next two years of my life.

Even thinking about it just now is a difficult experience because it causes me to relieve all the suffering that I had to endure. But I've decided to tell my "story", in the hope that it will encourage others not to lose hope (trust me, if I can recover from this given the severity of the symptoms, anyone can).

After initially being diagnosed with prostatitis in June 2016 and spoon-fed a useless cocktail of antibiotics (one class of which, ciprofloxacin, temporarily damaged the tendons in my legs for a whole year), I was subsequently diagnosed with both CCPS and Pudendal Neuralgia by different urologists.

I underwent test after test (digital rectal exam, prostate massage, cystoscopy etc.), with every result being negative for any sign of structural defect, infection or physical cause.

All the while my symptoms were unrelentingly painful, often meaning that I felt the need to either consign myself to bed or bathe in a warm bath. I had burning uriniation, sharp shooting pain in my rectum, perineum and sometimes testes along with ejaculatory discomfort. As you might expect, the pain severely impaired my quality of life and interfered with my career moves, which were at that time just beginning.

For a long time, far too long, I got caught up in the inevitable and understandable quest for a definitive structural explanation for my agony.

Then, one day last year, I read about both TMS and the research of Dr. Lorimer Moseley and decided that I had nothing left to lose. I began posting on this forum and trying to practise a set of mental techniques.

Firstly, I got over my "fear" of sitting or engaging in a range of physical activities out of deeply-seated apprehension that I would further 'damage' myself in some way (i.e. pudendal nerve, pelvic floor muscles etc.). I would sit and walk and run and ejaculate and do all these other things, no matter the pain - with the understanding in the back of my mind, the constant message to myself, that the pain (while very real) did not arise from structural damage.

Over months, I purposefully relaxed and reduced all signs of perceived danger whenever I experienced a bad "flare-up" in pain. In time, I disengaged myself from the 'narrative' that I had built up in my psyche - by which I mean, every time I felt the 'pain' I would usually 'rate' it i.e. "that was worse/better/the same as last time and I'm feeling this way because I did xyz physical activity and I'm going to feel really bad in the future because of the way I'm feeling right now".

It was hard, really hard to fight against the narrative that I'd allowed to play out in my head. But I did. I stopped worrying about whatever pain I'd experienced an hour, day, week or month ago. I stopped fearing that I would experience that same pain in the next hour, day, week or month. I stopped telling myself that I was in pain because I'd sat down for too long, or ran too fast, or lifted something too heavy, or ejaculated or whatever. And I stopped fearing that I'd be the same in the future.

I lost my fear. Lorimer Moseley's scientific studies were instrumental in helping me to believe, against all my inclinations to the contrary, that pain did not need to have a structural cause. That's why I credit him along with Sarno and the other TMS literature.

And after many months, losing that fear gradually led to a rapid reduction in both the magnitude and frequency of my symptoms. I stopped experiencing pain while sitting, whereas before I could only lie down or risk provoking a flare-up. I stopped experiencing any great pain while urinating or ejaculating, save for the odd flare up or two. I started to go days, weeks and now even months, without any or hardly any noticeable pain.

When the pain went away, sometimes I'd get a burst of excitement. "This is working, my pain is gone, I used to have pain every hour of every day and now I don't!" And then I'd get a major flare-up and all my confidence would ebb away. I'd fall back into the same negative thought-patterns and have to pull myself back up from the deep, back onto the road of progress that I was slowly but surely travelling down.

Eventually, I stopped feeling dejected and depressed when the pain flared-up and contrarily happy, elated when it went away. I became sort of apathetic, with practise, not reacting to one or the other.

And, to cut a long story short, over the past couple of months - with the odd flare-up here and there - I've been doing great and feeling fantastic. For days upon days, week after week, I've gone without any pain - which is apparently impossible if I really had PN or some kind of other serious structural defect.

In other words, IT works guys. This is no "pipe-dream" for chronic pain patients, as some doctors I now realise wrongfully assume or allege. It really was the "cure" in my situation and thanks to practising the mental techniques and honing the state of mind that I've just described to you, my brain appears to have been gradually re-wired - neuroplasticity, if you will. And the results for me have been nothing short of astonishing.

By conventional structural explanations, how is one to account for my dramatic improvement as a result of practising a set of psychological techniques and reducing all feelings of being in danger?

 

This is fantastic! Thank you for sharing your story!

 

Thank you for sharing your story! Like most of us here, I have read many success stories, but I'm always excited anew because each story is a first for the one that has overcome. Like sunrises and sunsets are so amazing every time, this never gets old!

Lizzy

 

Same thing happened to me . But not that bad. I was also given cipro. Which is a black box antibiotic !!! And I've read can cause you to be floxxed...

 

Yes, ciprofloxacin - and all the fluoroquinolone antibiotics - are poison. I took just 3 pills and thought that my legs would never return to normal. Walking any great distances or certain movements would give me a "snapping" feeling in my tendons along with bad muscle stiffness. in my calves. I felt like a cripple, on top of my pelvic pain. Thankfully, I did heal from the cipro (I'm in my 20s, so relative youth might have helped in that respect) but I have read true horror stories of victims of this drug who have been left with permanent damage and/or impairment.

No one should be medicated with such dangerous drugs, least of all people suffering from CPPS/PN who have no hint of infection in their prostates. It is medical irresponsibility on a level and to a degree that is frankly astonishing to me. I daren't even call it negligence, it goes beyond that for me.

One of the shocking things about CPPS/PN, is that sufferers ingest drugs or undergo surgical procedures or receive nerve injections, that are far worse in their implications than what these poor people are already going through. And its all, in the main, entirely unnecessary because the clear likelihood is that they had no infections or structural defects to correct in the first place, so they end up causing themselves actual tissue damage in an effort to find a cure.

If I may ask, did you suffer negative side-effects after taking cipro as well?

 

Hi. Yes I'm getting still now. Calf muscle twitching etc and pins and needles now and then. Feels like worms running through veins . Sometimes feel painful. But I power through it as I'm self employed drywall tape and jointer. And have a family to look after. Hope it passes like yours has soon. Have bad days and good tho. Anxiety makes it worse I think as the fuel feeding the fire ... How long did it take for you to feel better?

 

Thank you for your inspiring story. You gave me hope when I really needed it. I am so happy for you and hope to write my own pelvic pain succes story one day!

 

I'm very sorry to hear that you are still suffering from side-effects as a result of the cipro.

I was prescribed cipro around June 2016. The tendonitis did not fully resolve itself until sometime in late 2017, so it took me over a year. Every now and then, "niggles" would return - for instance if I stretched my legs in bed too much one morning or had a particularly brisk run/walk. But as of the start of 2018 till now, it has entirely healed.

I sincerely hope that yours does too.

 

You are more than welcome Sarah! I am so sorry to hear that you are suffering from pelvic pain but also happy that my success story has been able to offer you some much needed encouragement.

In my case, it was reading the stories of other people who had already come through this and out the other end that gave me the hope to go on and eventually, with time (a full year, more or less), get better/recover.

Please let me know how you get on, my thoughts and prayers are with you.

 

Thank you for sharing your story I've had symptoms of pelvic pain since February and lower back pain on one side but when I doctor prescribed cipro I told him I'm allergic as I did have a bad reaction to it on the third day a one or two years ago (burning nerve pain in my legs, watery eyes , hives , anxiety luckily I just took some benadryl and the symptoms subsided. I dont think I had any adverse effects from it. But recently that's what I was worried about in my recent post. I've since calmed down abit.

I dont really have my pelvic pain symptoms mine were more or so urinary symptoms but I realized they were stress anxiety related and the urologist cystoscopy and ultrasound came back clear.

I still have lower back middle and upper back pain very rarely in my left knee and hip and tightness in my back and calves as well (I had or have plantar fasciitis apprently) started last year around this time

 

Hi NameK,

I'm very sorry to hear about the problems you've been going through.

The first piece of advice I would give you is this: don't worry or freak out. Trust me, I know from personal experience how scary this kind of thing can be but you must not give in to panic, because this is one of the main triggers and gets you caught up in the cycle of negative thoughts/feeling in danger of further tissue damage etc.

As I stated above in response to another poster, I experienced adverse side-effects after taking cipro which persisted for over a year and I could tie them directly to the drug because they came on in the immediate aftermath of swallowing three pills. If you are in fact experiencing some kind of "floxx" from the antibiotic, that doesn't mean that you are going to be left with long-lasting or permanent damage. In my case, the symptoms could vanish and then recur (until they eventually ceased entirely).

It may, however, be the case that some of your symptoms are not from the cipro but could instead be anxiety-psychogenic in origin like my own pelvic problems were (and as you came to realize yours were too, as you said above "stress, anxiety related"). In that case, the symptoms can be overcome just like any other TMS ailment by following an approach similar to the one I described in my OP.

So, please, as dismaying as the situation is don't allow it to overtake you.

 

I also just had three pills (once a day ) and I had a bad reaction burning weak feeling in my legs,watery eyes ,hives all over my body I took some benadryl after and I was fine I think. Some people reported getting symptoms months or years later

I think in the following months I developed dry eyes and then in November of last year I got tight calves and plantar fasciitis. In February I've had lower back pain stiff also my pt said my si joint is inflamed. Along with occaisnal hip pain and occasional knee pain. Stiff shoulders and neck too.

So im scared all my symptoms I've been experiancing are because of the cipro and not anxiety or like I have thought

 

Vouthon, thank you so much for your story. I was hoping I could ask you a question via private message, though I'm fairly new to this site and I'm not sure if that's possible. If not, let me know and I'll swallow my pride and ask on here!

 

Dear Max,

Please go ahead and send me a private message, posters converse that way all the time on this forum.

Best

 

I want people to know that not everyone who takes Ciprofloxacin has a reaction. I have been reading a few postings on this site lately about the drug being terrible and with enough postings, that can lead to people getting symptoms from it just through their mind alone. It is a powerful drug, but there are even stronger drugs and you have to weigh the consequences of not taking it. All drugs can give some people a bad reaction. I also really have to question how someone can attribute symptoms to it when they took the drug 2 years ago.

I took Ciprofloxacin 2 years ago and it cured my recurring infection. I had absolutely no side effects. For a few years I had been getting a urinary tract infection about every 6 months and the doctor would give me something for it, but not cipro. A week before going on a 10 day trip I came down with another UTI and was given probably the usual drug for treatment. Partway into my travels after finishing the meds I started feeling not good 'down there'. Then it became obvious the UTI was back with a vengeance as I felt sick and my urine was red. I went to an emergency clinic where doctor did tests and gave what he called 'the big guns' to get rid of the raging infection because the usual drug that was prescribed back home hadn't worked. ('the big guns' it was in Alberta, our cowboy province. lol) I continued on my trip, felt better quite quickly, and have never had a UTI since. A few months later I read on this site people talking about Ciprofloxacin and all its terrible side effects and I thought, "I'm glad I didn't read this when I was taking it as it might have scared me into getting symptoms."

 

Hi Eileen,

Many thanks for your post, I appreciate the alternative take on cipro.

I should reiterate the fact that I am speaking only from personal experience. In my case, the side-effects from cipro were immediate. I had taken other antibiotics without even one adverse consequence, so I had no reason to expect that cipro would be any different. Only, it unfortunately was for me. I have never had tendonitis in my life, yet was diagnosed with it within a week of taking the drug, and could barely straighten out my legs because of the constriction in my calves and thighs. It is very much possible, indeed I think likely, that the continuance of my tendon problems after the initial negative response to cipro (which I am certain caused it) were TMS-related, fear-driven just like the CPPS. But the initial adverse reaction was caused by the cipro in my case, of that I have no doubt.

I don't say this because I'm trying to frighten people, I just wouldn't want other guys suffering from CPPS who have no infection in their prostates to take the risk of using a strong drug that could result in an adverse effect, literally for nothing.

After I had the reaction from taking the cipro, a urologist subsequently told me that ciprofloxacin had caused similar problems for other patients of his and that for this reason he seldom prescribed it in the absence of clear evidence indicating an infection of the prostate (which 99% of men with CPPS don't actually have) and in which case such a powerful antibiotic might really be needed (because the prostate is notoriously difficult for weaker antibiotics to reach in high concentrations).

In hindsight, I definitely wish I hadn't taken it and I might have spared myself some added debilitation on top of my CPPS/PN.

But again, I thank you for offering a different and positive story with the drug.

 

Ah so that probably what I'm experiencing tbh I took it last April 2017 yes I had a allergic like reaction to it (hives watery eyes anxiety panic due to the hives my legs felt weak and warm numb. But I was fine after. Then in November I got plantar fasciitis knee pain and tight calves. Thought nothing of it but as soon as I was reading about it online (five days ago)boom I thought omg I might have it I was so stressed and paranoid I probably gave myself symptoms.

 

I took it for a supposed kindey infection which I definitely did not have. I had instances stomach pain and back pain before I went to the doctor and they found blood in my urine so they gave me cipro 500mg and after the third day I stopped due to the reaction. I wish I didnt take it because one I didnt need to and two it could have saved me alot od anxiety and stress I'm dealing with now

 

Yep, that is the kind of TMS-fear that Eileen is worried people lapse into and in that respect I do agree with her.

 

Another thing I've noticed is some people are like oh no doctors know about this ot dismiss it. It's more common then people believe. Well if it was wouldn't doctors know more about it. Also some people where like it's not rare the facebook group had 10 000 people in it. Yeah out of how many people that have taken the drug.

And alot of people like to mention or you can get symptoms up to two years after and you cant detect it via tests.

It seems alot od people that recovered did similar things to that of tms. Besides the whole take all these supplements or you won't get better etc. Or the people who are like there is no cure. That kind of negativity is what scared me and it happened before with prostitis so why should i believe those people?