New here - thought I'd say hi - my story so far

[dvdx2]

Hi

I’m new to this forum, but having had symptoms of chronic prostatitis / chronic pelvic pain syndrome (on and off) for over 17 years. Until last year it was very manageable; mild discomfort after ejaculation/nerve pains in upper thighs. Been through all the usual support from doctors and consultants. Essentially told to live with it; never really diagnosed with anything until this year (CPPS) although I was to get prostate heat therapy, but didn’t go ahead with it about 10 years ago. I had an awful flare up last year with all the classic traits; discomfort during and after urination/ejaculation, lower back pain, pain in left testicle/increased anxiety etc. Still in discomfort : (

Recently, I have also had a cystoscopy, (which came back clear), an ultrasound (which was clear, except some varicose). In my recent visit to the consultant I was given the diagnosis of CPPS. He ruled out chronic prostatitis (he did an internal examination and said my prostate felt fine). He is sending for a MRI scan as the back pain on the spine can get quite severe.

I have been exploring trigger point therapy (from a headache in your pelvis) tried all the recommend supplements, (although I will be trying any accredited quercetin product soon) /exercises/counselling/massage/physio/medication (amitriptyline/Lyrica)

I had a breakdown in Mar 09 (not related to the condition) and was on Prozac – during this time I was about 70-90% pain free. It wasn’t until I came off the medication and started sexual activity, non-monitored eating and drinking, that things got worse.

Sorry if this is a bit of a ramble – its just some quick thoughts.

Thanks for listening, if you feel I am missing anything that may help, I would love to hear any feedback

PS Can I ask if anyone know of good physical therapists/CPPS help in Ireland/UK (I live in Northern Ireland)

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[Nick]

Hi dvdx2,

I feel for you on the discomfort after urination sex thing, it is not pleasant. I am still looking into physios, it is not easy living in the UK, there is no real expertise in this area. I did stumble on this site a short while back, it looks to be more female based but you may get lucky, there is an entry for N. Ireland. I would be interested to hear how you get on with amitriptyline, I started taking it just over 2 weeks ago, I have not noticed much difference so far but it may kick in soon. I am on 20mg a day with no real side effects apart from a little tiredness.

http://www.pelvicphysiotherapy.com/Manu ... pists.html

Good luck

Nick

[dvdx2]

Thanks for the reply Nick - much appreciated - I will email the contact for NI and let you know how I get on.

I tried amitriptyline for a short period of time during a bad flare up - it did help ease urinary discomfort, but the side effects were awful and increased my levels of anxiety to the point of panic

I did a session of internal trigger point therapy on Friday and my lower back pain vanished. My left hand side just felt like hard muscle; funnily this is the side is where I get all the pain. I had a great day (about 90% pain free) - got a bit greedy and tried it again (Saturday) with poorer results.

I had sex twice yesterday and was expecting great discomfort today, but I felt ok (except nerve pain in my legs and mild discomfort after urination).

Have you tried internal trigger point therapy? I genuinely believe it is the key to this condition.

[dvdx2]

Hi guys

A quick update on my chronic prostatitis / chronic pelvic pain syndrome - I have had a good week, for the first time in months!

About 80% pain free - I feel my mental health is improving; (I have been taking 5-HTP for the last few months) doing regular stretching (external/internal). I have also been taking any accredited quercetin product for 3 weeks and trying to maintain a positive attitude to the condition.

However Iast night I had a return of the full bladder feeling and burning during urination/urgency sensation. 5mins after I urinate, the discomfort subsides a little : ( Does anyone have any suggestions as to things I might be missing? The only thing I can think of is that I ate a lot of bread yesterday -perhaps this was responsible for the flare up I am wondering if I have elements of IC.

I had an appointment with my GP, and have been referred to a pain clinic and a physical therapist.

I hope you all are doing well

[dvdx2]

Bad weekend

Getting that really bad burning/discomfort after urination (usually goes after 5-10 mins). I keep telling myself its NOT an infection, (I have had all the tests at the clinic) had a cystoscopy etc. Lower back pain is getting worse too - just above the base of spine. I have been following the exercise suggestions in a headache in your pelvis and doing some internal stretches, but its slowly getting me down again. I am aware of the pain /anxiety cycle, but its tough sometimes to keep positive.

Can anyone give me any advice or things I could try??

[dvdx2]

anyone??

[dvdx2]

I have had an ok month. As I have said I have been diagnosed with CPPS, but think I my have IC or elements of IC. At the moment the main issues are discomfort whilst urinating and for 5-10 afterwards and lower back pain/nerve pain around the thighs. I have been to a pain management doctor and advised to begin a course of Lyrica, then to introduce doloxitine. I am really trying to avoid taking these meds (especially the SSRI) and see physical therapy the best route although if there is no improvement in the near future, I may have to look at pain medication/anti-depressants as a way to manage this awful condition. Another option is the European clinic in Amsterdam.

I have an appointment on 3rd April with a physiotherapist who specializes in pelvic pain, (thanks for the heads up Nick!) so i am looking forward to that - I have been doing consistent exercises as advised in Amy Stein's book.

Hope you are all keeping well and positive!

[Nick]

Sorry, missed your updates. I hope the physio goes well. I really need to see a physio but am still undecided as to which one to go to, I am sort of hoping that I can manage this myself, but, I really don't think this is the case at the moment. I am getting frequent episodes of burning after urination, although I have never had pain while urinating. I get periods of either burning at the tip of my penis or shaft discomfort which looks like some form of allodynia. I am finding that nothing that I am doing is having any effect, I can get a day or two, sometimes a week of only minor discomfort then the pain comes back again, very frustrating. Amitriptyline isn't helping so I am back to the doctor soon to see what else I can try.

Have you had your lower back checked out? Are your disks OK? According to my chiropracter L5 disk problems can cause chronic prostatitis / chronic pelvic pain syndrome like symptoms.

[dvdx2]

hi Nick

I also meant to say that I have just had an MRI scan on my spine and should be getting the results next week, so hopefully that will show up any problems.

Yes, I can really empathise with you - i have been following an exercise/stretching regime, but progress is slow. I often have problems dealing with the mental strain this condition places you, but must avoid anxiety as it feeds the discomfort. I am off on holiday early April, so I'm hoping a week of relaxation and sun will help things!

Have you considered doloxitine as an alternative to amitriptyline? I was told by the pain specialist that it works well with burning type sensations, but bear in mind its an SSRI - I am really looking forward to meeting this pelvic physio. I know she has experience working with women, so I hope she has worked with some men too.

[dvdx2]

Can I ask if any of you guys get bad lower back pain with chronic prostatitis / chronic pelvic pain syndrome (as I don't see it mentioned much). Yesterday after a few miles walk, I felt like my lower back had locked and I was in a lot of discomfort when I tried to bend down. I have just bought an exercise yoga ball and that helps along with the usual stretching.

Also I am really concerned about the spider veins on the left side of my scrotum - they are getting redder and larger and I feel quite a bit of that 'dragging' sensation.

Any advice or comment would be welcomed.

[Mike Kavo]

I have never had lower back pain for this. What I have had is separate minor back Injuries and spasms over the years separate from this that everyone gets a few of. Not often 2 or 3 mabye. Just because you have this does not mean you cannot get other things not related going wrong even in close areas.

Veins never heard that one you should see a vascular guy about that...again a lot of stuff mimics chronic prostatitis / chronic pelvic pain syndrome and vice versa what your looking for is symptoms not shared you have with this. A quick cheap ultra sound can look into this more.

[dvdx2]

Thanks for the reply Mike; I talked to my doctor and showed him the veins and he said to was nothing to worry about - so I'm letting it go.

I had another bad flare up in the last few days, which has left my mood very low. Bad burning on urination and discomfort afterwards, lower back pain and nerve pain in the legs, back with a vengeance....

To think I had an almost pain free day last Friday too......

However on a positive note, I saw my physiotherapist today and after an initial 1hr consultancy, she was hopeful that she may be able to help me. She will be starting to undertake internal trigger point therapy on the 24th April. I am also off on holiday at the end of the week and I am hoping the experience (and heat) helps me. The weather here in NI is bad, cold with icy rain!

I have also started some basic meditation and made an appointment for a counselling session

hope you guys are well - stay positive

[Mike Kavo]

Wow "internal" trigger point therapy in the UK. You are lucky! Try to do some mild stretching in the run up to this if you're okay with that before a bath...it will get you more flexible and ready.

You're trying to heal your pelvis so keep positive; try your best to shake any bad moods and anxiety - preferably without a chemist shop. You're going to get better with therapy — keep telling yourself this and it will happen!

Ask your councillor to teach you relaxation techniques. Meditation is good - practice trying to stay between thoughts and let the world flow around you and disconnect from your body. You will only get a few mins of it at the start but keep going and you can do 15-30 mins easily in time. That won't work overnight but don't get upset or disillusioned - remember it is road your travelling to get better and you must stay on it!

This time next year you will post how much better you are, or even better, never post again, so keep going. You have pointed yourself in the right direction feel good about that!

[dvdx2]

That's an incredibly positive post - thanks Mike

I have Nick to thank for the referral - The PT seems very positive too, which is great after poor experiences with the health service practitioners to date