My story 6 months in - input appreciated

[da0092]

Hello all, I’m a 23 year old from the UK who lives a very fit and active lifestyle. Here’s my story so far, given as a timeline of events:

1. At the end of January this year I got a urinary infection, which then developed to epididymo-orchitis. I was given a 10 day course of Cipro by my GP.

2. My symptoms subsided, and I thought problem solved. However about a week after the course had finished, I started getting horrible burning sensations from the tip of my penis, as well as a dull testicular ache. The pains seemed to come and go in cycles of about a week - for 3 days I would feel 100% fine, then for the next 3 or 4 I would feel terrible. I saw my GP and sexual health clinic, all the tests came back clear but was given doxycycline anyway.

3. After a few weeks with no change, I saw my GP who referred me to a Urologist, and started me on a 6 week course of Cipro - which was swapped to Trimethoprim 3 weeks in. At first the symptoms didn't really seem to change; I went through cycles of thinking things were improving only for them to worsen again. However towards the end of the course there were signs that my symptoms were starting to settle. The urologist arranged an X-ray, ultrasound and flow rate tests (which all came back clear), and a follow up appointment to review them.

4. I finished the 6 week course and within a couple of days my symptoms had returned badly. I returned to GP and was given another 6 week course of Trimethoprim but this time on a low/suppressive dose of 100mg daily. During this course my symptoms really seemed to be settling and I was becoming very positive about everything. Finished 2nd course about 3 days before follow up with urologist.

5. Saw urologist for 2nd time about 2 weeks ago, at this point everything was very settled and things looked to be heading in the right direction. Nothing much happened in the appointment, other than being told that the tests were clear and that it should all settle with time, and given a follow up appointment for about 6 months, but told that if things flared up again I should return sooner. I didn't push for anything else as I was confident that things were moving in the right direction.

6. A few days after seeing urologist, and about a week after finishing 2nd course of trimethoprim, all my my symptoms returned very badly and were persistent for over a week. The most persistent they had been in months. I went back to my GP, and he has placed me back on a suppressive dose of trimethoprim for the foreseeable future, at least a few months. I'm 4 days in to this 3rd course of trimethoprim, and my symptoms have already settled to a noticeable but manageable level.

In summary: I've finished 2 courses of trimethoprim, and each time my symptoms have returned with force within a week.


A few other notes:
a. My worst symptoms occurred a couple of days after sustaining a very nasty groin muscle tear from playing tennis. As a result of the injury my whole inner leg was extremely swollen and there was significant bruising. At the same time, my urethral burning symptoms were unbearable. Does this suggest a link to muscular tension/dysfunction being a main source of pain?

b. I've been following the stretching routine outlined in Amy Stein's book, Heal Pelvic Pain. I've only been doing it for just over a month so hard to pass full judgement but everything in the book makes sense to me and I will continue to follow the programme. I also have A HEADACHE IN THE PELVIS on order so look forward to comparing the 2 books and seeing what is suggested for my specific symptoms.

c. Other than the initial urinary infection, all urine cultures have come back clear.


My current list of meds/supplements:
Trimethoprim
Tamsulosin - not sure whether this is helping but I don't get any noticeable side effects from it, so will finish the 3 month course.
Daktocort cream - prescribed to see whether it helps with penis tip inflammation. I think it does, a little.
Quercetin with bromelain


I know I’ve only been suffering these symptoms for 6 months which is less than others on this forum, but the way that the symptoms keep flaring up just when things seem to be improving is really getting me down. Reading the stories of others on here gives me mixed emotions - either terrified that this is going to continue forever and my life is restricted from the age of 23 when I should be enjoying everything to it’s fullest, or confident that it will settle with time and persistence.

I'd really like to hear from others on the forum, any advice or thoughts would be hugely appreciated. Thanks in advance.

[webslave]

Astonishing and disappointing that, in 2016, uros are still prescribing months of antibiotics with no evidence of infection. Stop taking trimethoprim ASAP and stay away from urologists; they are simply not equipped to deal with this issue. Read Dr Shoskes's advice to urologists here: http://ucpps.men/1/

You seem to have a fairly typical case of CPPS, so spend a week or so reading all the stories here. You'll see a pattern develop.

[da0092]

Thanks for the input webslave. I'll follow your advice and also look forward to getting A HEADACHE IN THE PELVIS this week to follow their protocol as much as possible. I'll keep this thread updated with my progress.

[da0092]

Webslave (or anybody else who feels they can help),

I have read that a red and inflamed penis tip may not be associated to CPPS, yet this is one of my primary symptoms and goes hand in hand with when I experience pain.
Is this symptom something you would associate with CPPS, or are there any other diagnoses that might explain it? I have no perennial or rectal pain, only penis tip/urethral. Thanks in advance

[webslave]

Penis tip pain is a very common symptom, and many men have an inflamed and even protuberant meatus (opening). It's worth searching the forum for "meatus".

[da0092]

Thanks webslave, as I originally understood. I was definitely guilty of believing what I read without giving due attention to the reliability of the source. I've searched as you suggested and have found numerous posts from forum members for whom this has been a symptom.

I notice that a few former members who have very interesting and detailed stories (such as DMcU) no longer have profiles, is this an automatic step once their profile has been inactive for a period of time or have they decided to delete their profile? It's a great shame being unable to follow their more recent progress and whether their symptoms have resolved.

I'm remaining proactive in my approach to try and beat this, and am booked in to see Bill Taylor the weekend after next. I know some forum members (yourself included) have reservations about him, but I've read significantly more positive reviews than I have negative (not trying to shoot down the negative comments on him, just take a balanced view) whilst also noticing that the negative comments are from 2010 and before so I'm sure he has gained significant further experience since then. As members have said, the UK isn't blessed with a huge number of options and so I'm looking forward to hearing what Bill has to say and what treatment he provides. From a phone conversation with him he was confident that he would be able to help me.

I also recently started yoga which has introduced some great new stretches and so I'll continue with it, in addition to my home stretching routine as suggested in Amy Stein's book. I also find that swimming, saunas and jacuzzi soaks really help so am doing all of those frequently. I also have an internal massager on order! From the psychological side of things I'm using a meditation app called headspace, it's early days so hard to say how much it's helping but I will stick with it. In terms of supplements I'm taking quercetin with bromelain, as well as cranberry extract tablets. Generally I'm trying to live as normal a life as possible, whilst keeping an eye on things which seem to cause/intensify/ease my flare ups. After a summer away from pilot training, I will be resuming this next month. My symptoms are very cyclic and can disappear for up to 2-3 weeks at times, each time that happens my confidence in beating this condition is renewed!

I'm keen to not leave any stone unturned, so would really appreciate comments from members on whether you think I'm following a good approach and whether there's anything else to be added/tried.

Thanks :)

[webslave]

1. Member profiles are under their control
2. Cranberry is very acid and only useful for bladder infections, so I wouldn't take that.
3. You seem to be proactive and you have a good chance of overcoming CPPS

[da0092]

Thank you :)
I'll keep this thread updated with my progress.

[da0092]

I met with Bill Taylor at the weekend and it was a really encouraging meeting. Externally, he found very sore points in my left groin and right abdomen. Internally, he found several very sore points generally between 11 and 3 on the 'clock face'. He worked all of these points until they felt a lot more relaxed but said that I shouldn't get a flare up as he hadn't went in too aggressively. He also showed me how to use the EZMagic, an internal massage tool similar to the therawand. Bill seemed extremely knowledgable and understanding and I left feeling very confident that he can help me.

I felt great for a couple of days after the appointment, and then took the plunge with internal massage a couple of evenings ago. I think I may have went in a bit too hard, I found sore spots in the areas that Bill described but may have been pressing too hard, as I've now been in a nasty flare for the last couple of days. Hopefully this will settle soon and I won't get flares every time I use the massager...

I'm hopefully seeing Bill again next week before he refers me onto a PT in America as I'm soon to be relocating there for 6 months.

Webslave, I've noticed on a couple of recent threads that you've suggested that due to a lack of pain caused by sex the poster may not have CPPS. This interested me as I find that I don't have pain with sex, at least not any more. A few months ago I would feel very sore after ejaculation and needing to sit on the toilet for up to an hour afterwards as it felt so sore. However now when I ejaculate I'm almost fine. I must add that I only really ejaculate when my symptoms have subsided, since I feel low sexual desire when flared due to the pain in my penis. Does this pattern sound typical of CPPS to you?

[Luxemburger1977]

Hi da0092,
I started PT months ago (first session was before Xmas last year) but I went to see Bill Taylor for some extra advice or reassurance perhaps in early April and I still have mixed feelings about the 2 appointments we had back then. He surely is very compassionate, told me he'd seen many men with CPPS over the years and quite a lot of them felt desperate as they could not find proper treatment.

He has an outstanding knowledge of the (internal) pelvic floor muscles and confirmed I had no neuralgia of any kind, just a bit of tension and soreness here and there. Instinctively, he noticed I still had issues with piriformis and glutes (external) as well as with breathing pattern. However, he definitely missed and possibly even overstreched very tight hamstrings full of trigger points and did not even have a closer look at quadriceps, which seems to be an overall less common issue in patients with CCPS but definitely is for me.

On the whole, I think it was useful for me to go and see him but his lack of structured and systematic approach is definitely a drawback if you ask me. For those out there with internal impairments, he surely is THE PT to see in the UK, whereas for those with external impairments, especially off the beaten track, he might actually miss minor and/or major issues.

Let us know how your situation improves over the next few weeks/appointments!

[webslave]

Webslave, I've noticed on a couple of recent threads that you've suggested that due to a lack of pain caused by sex the poster may not have CPPS. This interested me as I find that I don't have pain with sex, at least not any more. A few months ago I would feel very sore after ejaculation and needing to sit on the toilet for up to an hour afterwards as it felt so sore. However now when I ejaculate I'm almost fine. I must add that I only really ejaculate when my symptoms have subsided, since I feel low sexual desire when flared due to the pain in my penis. Does this pattern sound typical of CPPS to you?

Yes, as long as your history has some sign that ejaculation is linked to symptoms, I feel confident in thinking you have CPPS. As you improve, the link to sexual activity fades. But a complete lack of any link between symptoms and sexual activity, at any time in a patient's history, may indicate that something else is happening.

[Luxemburger1977]

Everybody has their own story and symptoms I guess, depending which muscles are impaired. I remember being off-work, feeling so ill and bedridden last year from Mid-November until Xmas and could wank a few times a day watching porn, no pain whatsoever after ejaculation and not even retrograde ejaculation. In retrospect, I guess my pelvic floor was still in a process of further contracting (which made tamsulosin uneffective after a few weeks of use only), spasming just only weeks later from early January until late February and with most urinary symptoms indeed from mid-November until late February. Off tamsulosin and no urinary issue AT ALL ever since late February.
That being said, I definitely had other symptoms (urinary of course, golf-ball feeling in rectum and pain with sitting) so common in CPPS
What I do see now is ejaculation being somewhat weak in fact, but no pain at all! As I said, everybody has their own story of symptoms

[webslave]

no pain whatsoever after ejaculation

One of the weird things about post-ejac pain is that it can show itself up to a day later, not immediately. The delayed aspect of it means many men do not make the connection.

[Luxemburger1977]

Never had any pain with it, nothing at all. I really feel it never had any impact, neither hours later, nor 24/48 hours later. Masturbation, even up to a few times a day, a few times a week, made no difference at all, except perhaps slowly tensing the pelvic floor somewhat more, which, in turn, impacted urinary symptoms (increased frequency).

Browsing through the site here, I came across a (sad) story strangely similar to mine in a way, that of brettboz, who has long recovered now. In his first post, he mentioned a knee injury duly identified by his PT as a possible cause for pelvic pain, mine was an ankle injury but let's assume for that matter that it could have had a similar effect.

I do believe (and this does not seem unusual to my PT) that such underlying issues could, even many years later, surface again. As if they had affected for many years the balance throughout the whole body, from tip to toe, and had the pelvic floor and surrounding muscles compensating for that as long as they could, with symptoms being very asymmetric in nature.

In my case, no sudden onset of symptoms like for many other sufferers, but rather symptoms slowly building up over a period of about 3-4 months
I would surely like to make sure that my PT is also addressing those underlying issues (and she apparently is as she also treated rather painless right ankle and calf more than once while I had issues in left hamstrings and quadriceps).

As soon as my pelvic floor normalised, I had no idea why the pain would stay/relocate but when I look at the whole picture now, there might be more to my whole story than just stress

Again, anyone with a similar story/pattern of symptoms is most welcome to comment and share their views

[European]

I can agree with the comment of webslave, that post-ejaculation pain onset might be 24, even 48 hours later. That was very misleading for me in the beginning, but now I see clear interlinkage there. Ejaculation is kind of neuromuscular mini-insult for pelvic nerves and muscles and impact might be sensible much much later.