My Story - 4yrs of CPPS and 2yrs of CFS/ME, 31 yrs old, UK based

[mjh2020]

I am not after any answers per se with this post, but just thought I'd post in case anyone else is going through anything similar to my experience and also to say what a brilliant website and resource this is, and how useful it has been reading the tips and the recovery stories! Thanks a lot @webslave. I wish I had found the site at the start of my CPPS journey (rather than the prostatitis foundation or reddit) but at least I am here now.

My CPPS started in 2020 after an anal fissure trigger and a very stressful time at work, plus covid lockdown and working at home in an un-ergonomic position. Since then I have found I had an incredibly hypertonic pelvic floor (due to a history of IBS and connected anxiety) so I am sure that was just a problem waiting to happen. Symptoms were perineum pain, pelvic floor pain (though I did not know what the pelvic floor even was at the time), golf ball up the bum (metaphorically), pain at tip of penis, redness of penis, shooting pain in groin, urinary frequency and urgency, I was pretty much unable to sit at all.

I went through what seems the standard story of multiple gastros, colorectal docs, urologists, doctors, cystoscopies, tests showing nothing but then still being given incredibly strong antibiotics (ciprofloxacin), a bit of an obsession of trying to find some infection or something, urodynamics procedure, and even a bladder neck incision procedure. I basically lost count of the number of fingers and instruments that were put up my bum and penis.

A urologist literally told me that he doesn't believe pelvic floor physical therapy (PT) helps (Julian Shah in London who does prostate massages as his treatment - they did actually help to a point but were excruciatingly painful), and only referred me to a PT after months of me suggesting it. I wish pelvic floor PT was a known option for all these urologists but no single doctor even mentioned the pelvic floor to me throughout months and months of appointments. It was only my own research that found pelvic floor dysfunction as a possible issue, and looking back I have had pelvic floor issues e.g. urinary urge and slow/split stream, for years and years, but just ignored them. That is just the human condition though so I can't kick myself too much for that. No one wants to think about that kind of stuff really.

To add insult - or more accurately illness - to injury I also got the actually statistically co-morbid condition of chronic fatigue syndrome (CFS/ME) in late 2020 (not sure if started by covid or not) to the point of becoming bedbound for 7 months in 2021/22, being spoonfed, peeing in a bottle and using a commode. At this point I had completely given up on life. I had obviously stopped working, left my fun life in London where I was living with my friends and moved back to my parents and was 100% reliant on them. All great stuff for a previously fun, very sporty, gyming, successful and incredibly handsome person in your late 20s. I thought those were meant to be a fun years of your life!

I did found a good physical therapist after finally convincing my urologist to refer me in 2021 before I became bedbound, at which point I realised what was going on with a hypertonic pelvic floor and starting understanding about the pain/inflammation/fear/anxiety cycle that my brain was in, both for the CPPS (and later also realising this was the CFS). But the CFS obviously completely derailed any progress with my pelvic floor.

I was saved from my CFS via psychiatry as a first port of call (benzos + antidepressants + more), that calmed me down but I was still bedbound, and then by a psychological intervention called the lightning process. There are a few psychological therapies likes this that are viewed as quite left field, indeed I couldn't have been more sceptical about trying it (me being an analytical engineer). But I was completely fucked in bed so had nothing to lose in giving this a shot. The theory is that the body is stuck in fear response mode (fight/flight/freeze) and you learn all about how the brain-body connection is so important and how you can influence the physical via neuroplasticity of the brain and specific thought processes i.e. rewiring synapses and the learnt impulse for negative thoughts and emotions, being kind to yourself, thinking positively and having belief etc etc. A few years ago I would have said that that was all a load of bollocks, but it literally got me out of bed and pretty healthy again within about 6 months. Crazy stuff what the brain can do. And this is a growing field of science that I think is extremely relevant for CPPS sufferers.

After getting out of bed and learning all these processes to calm myself, and even getting off medication over the course of about 6 months, the CPPS was at a minimal level, only with pain on one side of my pelvic floor, no longer even triggered by sitting, ejaculation, gym, and I even started some cycling again. All with the info from this website, my now self-done internal physical therapy with a therawand, and the psychological therapies. The CPPS was at a point where I hardly thought about it anymore.

So what helped was:

• Stretches, I love the happy baby pose most
• Internal therawand therapy
• Meditation (calm that nervous system down!)
• Deep diaphragmatic breathing to engage the parasympathetic nervous system
• Exercise
• Standing desk
• Low FODMAP diet for IBS
• A lot of patience, and kindness to yourself/self-forgiveness
• Acceptance of pain and getting on with your life, seeing your friends, doing what makes you happy. Going on trips etc. Of course this was doubly powerful for me after being bedbound with CFS/ME.

Unfortunately I had a dodgy 2023 with a relapse of CFS type symptoms (though now I know they were just stress responses) and I found myself sedentary, stressed, and sitting and playing lots of computer games as that was one of the only activities I could really do apart from watch TV. Three guesses what happened next... flare of CPPS in late 2023. I got myself out of the CFS relapse with the help of the pyschatrist again (benzos are great! but we are very careful about addiction) which allowed me to properly use the psychological therapy processes I had been taught again. But I am still left with the CPPS flare. I have very strong regretful feelings as I am sure many of us do (why did I play computer games and sit so long?! I knew that was bad! It says so on this website even..) but you have to be able to forgive yourself as you aren't thinking rationally at those points.

My symptoms are now pain in my left pelvic floor side and some urinary urgency; the pain is worse when sitting, stressed, tired, after ejaculation, gym etc., so nowhere near as bad as in 2020 and what I would class as a bad flare. And now I am a sensible mostly-happy rational thinker again and am ready with my plan. What do you guys think?:

1. Meditation - I am doing this a lot and I combine this with the deep diaphragmatic breathing too (this was after reading Headache in the Pelvis again, but then promptly packing it away again as I prefer to now focus on what works for me). I will try to paradoxically relax but find normal meditation with the headspace app helped in the past. I am just ramping up the times a bit now.
2. Stretching as much as possible, I like Amy Stein's 'Heal Pelvic Pain' book for these, but they are all on youtube too. At least twice a day and for 30+ secs per stretch. Also after any exercise. I am in the very fortunate position of being off work still from the CFS and still being paid a proportion of my salary through an insurance scheme so am able to fully commit to this and the meditation for longer periods. I cannot imagine how hard it must be for those of you still needing to work full time when you first get CPPS.
3. I am going to try Quercetin, I tried it at some point in the past but had too much going on for a proper test I think. So will do 500mg/day with a 3 weeks on, 1 week off as this website suggests
4. Amitriptyline, currently on 20mg but haven't noticed any help from that yet. Increased dosage messes with my sleep/hangovers the next day so I am sticking with this for now to make sure I get my full 8 hours. I think the sleep part is hugely important for all aspects of life. And am happily accepting of the fact that my all-nighter partying days are behind me.
5. Exercise, loads of walking, progressing to running in due time
6. Exercise in the gym - I know this as a trigger but luckily the flares are manageable and as a previously incredibly sporty person the benefits to my mental health far outweighs the pelvic flares. My roadbike is on a definite retirement in the shed though.
7. Dry sauna, a new discovery of mine is a pool near me with this. Excellent suggestion from this website. Apart from the obvious benefit of rubbing up against sweaty old ladies it is super relaxing and can be combined with some meditation. Would recommend - I'm going to try going at least once or twice a week
8. Ejaculation - my libido is understandibly low but I get that once or twice a week is sort of recommended to 'keep the pipes clean'. BUT all with a relaxed pelvic floor (again, from the tips on this website). Though I am re-entering the dating world in January so we shall see were that goes...
9. Internal therawand work daily
10. Pelvic floor PT - I am going to go regularly again although I have most of the knowledge now and can do the internal work myself - but my PT was also a bit of a therapist too. It really helped me talking to someone who understands the problems. I've tried with actual therapists and it wasn't particularly helpful.
11. I found a doctor who does pelvic floor Botox injections so might give this a try in the new year. He is super into this CPPS type stuff and mind-body-gut connections and seems very trustworthy and knowledgeable compared to all others I have seen. He wants me to get my nervous system arousal down first, and then we could try Botox (as a short term solution and in conjunction with all other therapies) afterwards. Maybe a good solution to calm down this flare and get me back on track. I am interested to see how that goes and will update here as I know it is a bit of a novel therapy for male pelvic floors. For UK people interested, he is Shahab Siddiqi in Essex and not mentioned on this website. Technically a colorectal surgeon but has a holistic approach. He has his own website actually if you give him a google. I saw him privately initially but now am going via the NHS. Wait time for the initial appt with the NHS clinic was about 2/3 months after GP referral. Privately the Botox injection procedure would be ca. £3,500 with a wait time of around 3 weeks. I am not sure of the wait times for this on the NHS. I have asked his secretary but I imagine it would be a good few months. I will wait till my first NHS clinic appt and then discuss...
12. AND PROBABLY MOST IMPORTANTLY - I am going to focus on getting happy again: being kind to myself, doing fun stuff, seeing friends, exercising, mediating myself into a zen master, and then trying to remember how to talk to the ladies and go on a date (I will definitely open with chat about all the things I've had up my bum). So basically all stuff to take the mind off CPPS. It is so much worse when sitting around feeling sorry for yourself.

And that's about it. This post turned into a bit of an essay so if you read all that kudos to you, and it has been a cathartic exercise for me. I don't think there are many other things from the tips on this website that I have missed but if anyone has any other suggestions or spotted any glaring omissions that I should try please let me know.

Otherwise keep it up and don't give up fellow CPPSers! Be kind to yourself! And remember this is not forever and we will get better. I still haven't got my head around that fully but am keeping at it. Mind-body-gut-bumhole connection and all that.

It's just so easy to fall back into negative thinking that this is what my life is now. Especially when that has been literal advice from medical professionals e.g 'just learn to live with it'. Yeah very helpful thanks mate, well worth the £300 for that private appointment and god knows how much else on those tests (though luckily I did have private insurance at the start). But I am trying to see the light at the end of the tunnel and I hope you are too!

[webslave]

Good post. You are the sort of very intelligent patient who invariably gets better and moves on from UCPPS, even if you do have the occasional relapse to keep you on the straight and narrow. Botox may be unnecessary given all the other things you are doing. I'm glad you are getting involved in meditation. It's a whole world of its own and can be very rewarding.

Go forward knowing that you are somewhat fragile, and protect yourself with that knowledge. Some people are fire-eaters and able to tolerate massive amounts of stress. That's not us.

[mjh2020]

Thank you so much for you kind comments. Any external affirmations like this always help.

Yes I am committing myself to some extensive meditation/relaxation as per the Wise-Anderson protocol so am interested to see how that develops. I used to only be able to do 15 mins at a time but now (even just a few days into this 'new' journey) am already ramping up the times to 30mins+ and have been fine and will keep increasing the times. I know we are talking in months here though to see progress so will be patient. Something I was forced to learn with 7 months stuck in bed with CFS/ME.

Agreed with the Botox, it was something I read about when I was in a bit of a desperate state. I may still try it, depending on our NHS/cost/timelines here in the UK, how I feel at the time and what my PT thinks about it. Could be something to cut through that brain/pain/fear cycle in the short term. The way it works with our NHS is that this is available when you find the right doctor but you have to wait long periods of time (for things not deemed urgent like cancer care, say), just because the NHS is so overstretched. But you can essentially 'skip the queue' by going private if you have private insurance that covers it or are willing to pay yourself. So something to weigh up costs/potential benefits once I have all the info.

Stress Stress Stress - you've hit the nail on the head there. I was one of those 'fire-eaters' I suppose previously but have a complete new outlook now. Career/healthwise etc. I may go back to working in my old job, which I did actually like, but will be starting on a part time basis from home and my attitude has completely changed now. I would also not be completely averse to a new career, maybe not a pro e-sports player though. And stress is something I will be much more vigilant of now going forward, though hopefully at some time in the future this will all be a distant memory and I won't have to consciously be vigilant but will have that engrained on a subconscious level. Fascinating stuff how the brain works and how powerful it is.

Thanks a lot for reading webslave. Much love.

Admin comment: You're on the path. Be gentle with yourself, do nothing that causes persistent mental or physical tension or strain.

[LivingRoomFanatic]

Palmitoylethanolamide aka PEA is also good for pain btw. I found it better for me than the Quercetin / Graminex. Has no side effects to speak of. It’s one of the ‘things that help’ that I found on this forum. It can take a while to build up in your system but it started to help me quite quickly and kept getting better.

Admin comment: Thanks for this feedback. We need reports like this to confirm the things that help

[mjh2020]

Thank you LivingRoomFanatic. I will look into PEA. Quercetin hasn't helped me in the past and hasn't done anything at the moment so is definitely worth a try. I do feel that my triggers and pain are very physically-related (though I recognise the mind-body stuff too and am currently having a read of Dr Sarno's books), which leads me onto a question for webslave if you could spare a minute:

This time around I have now found that gym exercising is actually a much worse trigger than before. Previously I could workout in the gym without causing extra pain, and internal wand therapy would reduce pain. But now gym work, even upper body (which of course does involve tensing of the core etc anyway) is causing pain in the pelvic floor / levator ani afterwards, plus internal work is no longer relieving the pain. (I did see my pelvic floor PT and we realised I was doing internal work much too vigorously, too long and often - so I have reduced this and will be much more gentle - as per your tip in the forum post which I obviously read but was too frustrated to follow properly!). My PT's re-assessment of my pelvic floor was that the left side upper quadrant was tender and very hard and tough to the touch, whereas my pretty much pain-free right side muscles where soft and springy. But that I do now have very good control and the ability to relax and consciously drop the pelvic floor which I didn't previously, so in theory the pelvic floor should be able to get enough blood flow and heal given time. I will take this info to the consultant offering Botox (as one of complementing therapies) who I am seeing next week and see what he says.. and will not make any rash decisions.

It's a very annoying one for me as sport and exercise is so important to me, plus coming back from CFS I do want to rebuild my body. But I have read in a couple of other threads which touch on the subject of gyming so am likely answering my own question here: I imagine you would recommend I cut back on the workouts and instead focus on gentler stuff; walking especially & swimming. I even have pain sometimes now when walking but I think that can be linked to the gym workouts. I had thought/hoped my stretches, sauna, mediation, conscious dropping etc. would be enough to counteract the short term contractions in the gym, but it seems not. And when I have rest days, there is a definite lessening in pain... so it's not exactly rocket science is it.

This will impact me a lot mentally though as I have very much enjoyed working out again after CFS, but I suppose I just need to focus on this as a temporary thing and tell myself I will be able to get back into the gym when better. And hopefully not in the too distant future.

Would you agree with that?

[webslave]

Look, I had CFS as well as a comorbid condition, and it usually denotes a more severe case of UCPPS. It took me YEARS to get over the CFS part. Any vigorous activity would flare it up. Even now, 30 years later, if I am too active for too many days, I get exhausted and have to spend a day or so recovering with plenty of rest. So when you say you love sport and exercise, I did too, and I hear you, but these activities don't necessarily love you back. I started with walks and even walks could flare symptoms. It took a long time before I could walk for an hour daily. Just keep pressing on, and if you have a flare-up, stop for a while, but then go back again. Keep going back. Eventually your body and immune system will build tolerance, but it is a SLOW process.

[mjh2020]

Yep understood. I have got over the CFS part, which was very extreme in 2022, relatively quickly I think with a pyschological therapy (+medication), though did have a bit of a relapse of that last year and needed to go back on medication that I had stopped in order to allow me the motivation and headspace to do the psychological stuff. And that was closely linked with CPPS pain too.

But the CFS is not the limiting factor anymore i.e. I have no energy issues from exercise and just get tired/recover normally. But I will have to change my focus I think which had been on the CFS and a couple of other injuries sustained in the recovery process (now pretty much fine again), and now focus back on the CPPS. As an example my main aim was to workout to get my body fit again with the end goal of being able to play relatively high level basketball in a team with a number of close friends (and then get down the pub after). But there's nothing stopping me going to watch the games and still socialising afterwards and being involved that way. And there are other hobbies I can take up in the meantime that are not sports.

I will roll back the exercise now and slowly build up like you did with the walking. And have a look at my priorities and make this adjustment in my brain (that will be the tough part) - but it's obviously no use getting in amazing shape physically but then having horrific pelvic pain that causes bad stress and leaves me in a bad state mentally is it. Rather it has to be the other way around - once I am back in control of the pelvic pain I can do gentle activity, happily socialise, phase back into work, move out of my parent's house etc etc. (which in the grand scheme of things is much more important than sports and for my mental health). And then maybe down the line in a couple of years look at slowly getting back into the gym and into more vigorous activity, with vigilance (but not hyper-vigilance!) on any pelvic pain.

Thank you so much for your input. It is all logical stuff really but hearing it from someone else who has been through it somehow puts it into the right perspective.

[webslave]

The other big comorbid condition is fibromyalgia, which equates to muscle pain. That is also flared by over-exercising. Your plan sounds logical, so I wish you luck. Keep posting as you make your way back to health.

[mjh2020]

Happily no fibromyalgia here. The couple of injuries I sustained during my recovery after CFS where very clear in their cause e.g. carpal tunnel from using power tools for an extended period, and have all healed and are fine now (though I did require a lot of psychological work to get over lingering psychosomatic symptoms e.g. I needed proof via an MRI that my wrists were completely fine before being fully confident in their use again). That being my over-eager subconcious stress/fear response there which was the main factor of my CFS and is of course also a huge part of the CPPS).

I've just finished reading Dr Sarno's books actually and have had a look through the stories regarding that on the forum. I am not convinced that my CPPS can be explained by my repressed emotions - the PT helping initially and me literally having a hypertensive pelvic floor a few year ago sort of going against that. That wouldn't have been solved by just letting all my anger out. But there were a lot of good points re the psychological side and mind-body connection that I have taken onboard. And I can definitely see how it is a useful book to get people away from the bacterial angle.

I will start some psychotherapy again I think on the back of some of that. And some of Dr Sarno's topics are very similar to this lightning process therapy I did whilst bedbound which literally cured my CFS; stuff that I as an engineer would never have thought would have worked, so I will redouble efforts on the mental front - and I already have proof in my case how powerful the mind-body connection is.

Thank you, yes I will keep updating.

[LivingRoomFanatic]

When I go to the gym I only do weights while seated on a bench (the irony). Nothing standing as it engages the core, as you mention. It limits the variety of exercises I do but it means I don’t get any flares.

I also don’t do any running as it isn’t good for the pelvis due to the impacting. I used to love running but now I use the cross trainer instead.

[mjh2020]

Thank you for those comments - good insights. I think I will wait for my current flare to subside (though that might take a while I think) then follow your advice re the gym. Even just light strength exercises whilst using a bench will still be beneficial physically but perhaps more importantly mentally for me. Going cold turkey has been very tough to adjust to.

Noted on the running/cross trainer. I am currently only walking as even that elicits pain but otherwise I'd be lying on the sofa at home doing nothing all day which I think would be worse for my mental state and thus pain anyway.

Do you do any swimming? I'm not sure how that would fare but if doing front crawl say you're not really engaging your core and legs much with just gentle kicking.

[mjh2020]

@LivingRoomFanatic I was thinking a bit about your comments re running on my walk this morning and think it strays a lot into the the mental too. Everyone is of course different and our cases are all different but from what I have learnt about myself over the last few years is the power of belief i.e. placebo/nocebo effects - which are well documented scientifically, and the physical effects they can have.

So nothing against your approach but I am going to conciously choose to believe that I will be able to run again and play basketball again at some point in the future. If I were to take you at your word and believe that running causes pain, then it will, if that makes sense? Especially once that becomes a subconcious engrained belief.

But what I will of course do is now focus on the healing of my pelvic floor over fitness, and then only ever gradually reintroduce activities (and I do like you gym approach! and have read a few of your other posts). But two months ago (when my flare was not as bad) I was running 5 and 10ks with not even a thought for pelvic pain. It is only in the last months since my wrists healed and I did strength and conditioning in the gym again that the flare worsened to the point of pain whilst standing and walking (and that then doubly effected me of course with the new added mental strain/worry of not being able to return to work even with a standing desk!). It also coincided with an emergency of my mum in the hospital so I can't discount the stress factor from that either.. But in terms of the physical, what I take from that is that once the pelvic muscles are healed to a certain point again, running will be fine (for me). But it is likely the healing process will take a bit longer and require a lot more patience than the worsening process!

[LivingRoomFanatic]

@mjh2020: No swimming for me but I do the sauna thing also. Although I just enjoy it for what it is as thankfully I’m mostly pain free now with the Duloxetine and PEA. But I’m sure it helps without me realising.

That’s good in terms of your approach. Positive thinking. I hope you can enjoy the running again. As we all know, half the battle of fitness is doing something that you enjoy and isn’t a chore.

[European]

to mjh2020: I am a CPPS veteran, battling with this horrible affliction more than a decade. In my experiences, walking and swimming are easily the two best physical activities for CPPS sufferers. Both activities are whole-body activities and perfectly merge mental and physical side together. Every walk in forests and woods, every swim in the lake at our weekendhouse in summer is unique journey of mind enhancing your memory and imagination. On the other hand, exercising in gym is rather a repetitive strain, at least for me.

Regarding Sarno books, I still think that despite the huge portion of mental or psychological aspects in this condition, not every CPPS could be attributed to repressed emotions etc. Its rather the prevailing anxiety and anxiety driven behaviour which makes this condition so tough to overcome. Anxiety has tons of masquerades, and is often deeply rooted in our minds. But luckily our brain remembers not only the points of our deepest desperation but also the moments of our salvage, our improvements, our joy when things went better and moments of our happiness when we are symptom-free.

[mjh2020]

@European thank you for your input. Sadly I don't have a lakehouse for some swimming like that, sounds amazing. Sounds like some Swedish friends of mine. The whole month of August is a holiday for them pretty much spent at everyone's summer houses. Are you scandinavian by chance? But the equivalent for me might be shooting some basketball outside in the summer. But I will definitely keep walking both for the physical and mental benefits (even if it elicits pain, which I know isn't doing any damage anyway) and will slowly start some swimming too (at the same place where I go to the sauna).

I agree wholeheartedly with your opinions on Sarno's theory. The repression of anger, therefore TMS pain is a little bit too farfetched for me, though I can see how it may work for some people and may be a route to go down if all others fail. But the anxiety and thus fear aspect being key driving factors, like you said, I can completely get behind. Although I had extreme chronic fatigue syndrome/ME- which was obviously horrible to go through, I recovered from that through addressing the fear aspect psychologically (as well as with psychiatric meds), which was a big learning and proof of concept for me. At the time I was bedbound I was essentially stuck in the freeze response mode. And that is proof to me of that brain/fear/pain link whereas years before I wouldn't have even really given such stuff a second thought.

I have also actually just started using an app called Curable today (chronic pain treatment app) to change it up a bit from my normal routine which was getting a bit stale. They had an interview with a pelvic pain patient that really resonated with me. It has a lot of very similar approaches to the psychological therapy I did before (and worked for me before with CFS) so I am excited to keep going with it (alongside pelvic floor PT, stretching etc etc of course). Plus it has a good personalised meditation pathway which I will mix in with my own longer headspace meditation to reach a Buddha state of paradoxical relaxation and enlightenment. And after a bit of a dark mental time lately am feeling more positive and focusing on the mental side with a new vigour. Hopefully the first step on that re-recovery pathway.

Thank you so much for taking the time to comment, it really helps knowing you are not alone.