Matthew's Story

[connellm]

Hey everyone

This is the first time I have posted so here is my story,

My problems started in 2002 with a bout of non-specific urethritis. A week of doxycycline largely resolved the problem although from time to time I would still get a bit discomfort in my urethra although it didn’t interfere with my life at all.

In the summer of 2004 I began to get some discomfort again, nothing unusual there but it persisted and my penis would often appear red and feel sore. I thought it might be thrush but Canesten failed to resolve the problem. The pain began to get worse and I started to feel ill with it – chills, feeling hot and clammy, swollen lymph nodes in the groin and armpit, no appetite, nausea and vomiting. I went to a GUM clinic thinking perhaps I had a urine infection, all tests came back clear. I then went to my GP who did more tests – urine, bloods, specific tests for diabetes and thyroid trouble – again nothing doing.

My symptoms persisted, my GP prescribed 4 days of trimethoprim, which did nothing so she prescribed another 4 days, again with no joy. The pain got worse, at times it was agony in my perineum and urethra. She referred me to a uro who prescribed 2 months of Cipro and Flomax. I lasted 6 weeks before giving them up, my body was in bits. I started to experience additional symptoms such as increased frequency, nocturia, and when at its worst, reduced flow

My uro then tried a Botox injection into the prostate which again made no difference.

Since Spring 2007 I’ve been signed off and have effectively been on my own. I’ve tried virtually every supplement under the sun including any accredited quercetin product for 18 months and Prelief with little appreciable difference. Acupuncture and Bowen therapy have also resulted in no improvement.

I paid for a YORK food intolerance test which showed reactions to concentrated proteins such as dairy, tuna, lamb, pork, salmon, duck and turkey. I’ve tried eliminating these foods but see little improvement and sometimes can pig out on the wrong kinds of foods with no discernable worsening of my condition.

I’ve been trying the HITP stretches, abdominal massage with a Theracane and a bit of internal massage with little success thus far although flow and frequency now seems to be ok most of the time and since doing some abdominal massage my lymph nodes in my groin have gone back to their normal size and don't feel achy and tender.

Currently my worst symptoms are nausea and urethral discomfort and I often get redness on my penis, foreskin and scrotum. This week has been particularly bad with lower back pain, nausea, chills and feeling hot and clammy. I find the redness can suddenly appear after a bowel movement, urination and even an erection. Sometimes it just seems to appear for no reason. At best I might get 10 days feeling reasonable although I never feel 100%

I have a few questions that hopefully some of you maybe able to shed some light upon, does having urethritis previously make me pre-disposed to this?

Is this redness just due to general inflammation?

How do I know if the foods I am eating are linked to my condition? How quickly can one expect a reaction after eating something they shouldn’t?

Does anyone have any hints about using a Theracane or doing internal massage?

I’m yet to try any real relaxation methods so again any tips on how to go about this would be greatly appreciated. I found the explanation in HITP and Trigger Point Therapy workbook a bit difficult to follow.

I live in England so accessing physical therapy is very difficult but I’m willing to try anything really.

Sorry for rambling on for so long. Thanks for taking the time to read this. All the best

Matthew

[webslave]

Does having urethritis previously make me pre-disposed to this?

Yes, although the NSU may have been the vanguard symptom of the condition rather the cause.

Is this redness just due to general inflammation?

It's due to the overactive nerve endings in the pelvis releasing chemicals that degranulate mast cells and cause inflammation.

How do I know if the foods I am eating are linked to my condition? How quickly can one expect a reaction after eating something they shouldn’t?

You should see a worsening of symptoms within a day or two of eating something to which you're sensitive. I'm not a supporter of tests that find out what those substances are. I rely on food challenges and exclusion diets. Also, observe how you react to foods. Are there foods that, after eating, make you clear your throat of phlegm? Foods that tend to give you loose bowels or a sore stomach? Be observant!

Does anyone have any hints about using a Theracane or doing internal massage?

Read the posts by cppsdad.

I’m yet to try any real relaxation methods so again any tips on how to go about this would be greatly appreciated. I found the explanation in HITP and Trigger Point Therapy workbook a bit difficult to follow.

People tend to ignore this side of things, when it is more important or as important as the trigger point treatments. But I cannot be more specific than the book. I suggest you re-read that section a few times. It'll come to you.

I live in England so accessing physical therapy is very difficult but I’m willing to try anything really.

Have you tried Bill Taylor?
viewtopic.php?f=45&t=5384

[garyholc]

Hi Matthew

I would recommend a trip up to Edinburgh to see Bill Taylor, I have seen him many a time and he is excellent, particularly at making sense of what you have and easing your fears.

Not sure what part of England you live in, but get a cheap flight up there, BMIBaby or EasyJet for example. His clinic is a 20 min bus trip away costing £5 return, and then a 10 min walk. Really easy to get to.

He charges £100 for the initial appointment which can last up to 2 hours if he knows you are travelling considerable distance to see him, and appointments after that are £75. At least he will shed some light on where you need to be concentrating on your treatment.

Give his clinic a ring on 01313 328698

For me, seeing him was the best thing I ever did. I went up 4-5 times and it made a huge difference to me. Not just physically but mentally too.

As for relaxation, depends on what you find of use, for me, I find a glass of red wine and a long soak in a bath with Radox bath salts does me the world of good. I also find going for a swim, sitting in a sauna or hot jacuzzi also helps. Some people find just laying down with some relaxing music on of benefit. Remember we can relax outside the house too, my recent holiday laying in the sun all day totally got rid of all my symptoms, or just going for a drive and sitting somewhere peaceful, by a river or a scenic area can also focus the mind away from your symptoms. Try various things and see what works best for you.

[connellm]

Hi all

Thanks to webslave and Gary for their replies and to superuse for his e-mail. It's great to finally get an explanation for what could be causing the redness. It's been difficult for me to convince myself that I don't have an infection when I've had redness and been feeling ill as well. Glad to put that one to bed.

I've taken up your advice Gary and got in touch with Bill. He sounded like a top bloke and we were on the phone for about 20minutes going over the condition, his experience, what I could expect from the treatment etc. Going to make an appointment to see him. I live in Bradford so will have to save up some cash for the flight as well as just the session. Hopefully I'll get something booked in next month as Bill says he is also away the next few weeks. Still feeling much more positive than I was this time last week.

Have started an exclusion diet cutting out all wheat, dairy and fall the oods that showed up as having a reaction against although this is going to be very difficult over the next few weeks as I'm here there and everywhere with work and then it's my cricket team's end of season do next week which means 3 days on the lash in Magaluf!! It will be interesting to see how eating the wrong foods and drinking too much, balances out against being relaxed and having a good time - the physical vs the mental I suppose. Last year I felt better for it, in 2005 when all this was just kicking off I felt horrendous. Still this time I'll be keeping a watchful eye on how I'm reacting to certain foods. Certainly today for the most part I've had a lot more energy.

In general I wouldn't say my life is all that stressful, I do have an office job which sometimes has long hours and a heavy workload combined with sitting with bad posture which is all linked in I'm sure but the most stressful thing is just dealing with this condition when it's bad. I also have a long suffering girlfriend who has stuck by me and got me through many bad times. Touch wood I've been pretty good this week and am off to London tomorrow on a business trip so fingers crossed I hold up.

Thanks for the correspondance. Certainly feeling much more positive. Will keep you all updated

[garyholc]

Hello again

Glad you feeling more positive, keeping positive is the key to beating this thing.

Also really glad you spoke to Bill. Yes he is a top bloke, and the good thing with him is that he does it because he genuinely cares about people, and his support isn't just in the office, but if you are having a bad day, just ring him up for a reassuring chat. I know it can be expensive to see him, but it is WELL worth it, even if just once. I saw him 4 times, and it helped me lots.

As for cutting out foods and drinks, I found no foods irritated this for me, but tea, coffee and fruit juices definitely made my frequency worse. As for alcohol, I have no problem with it, and it actually makes me feel much better as it relaxes the muscles and takes your mind off the condition. You will find that when you are abroad, having a good time with friends, having a few drinks, you will totally forget you even have this. I was in Ibiza last month and felt normal, infact since coming back, I have felt (bar one or two days) very well with little or no pain whatsoever. So go there, enjoy it, have a few drinks and let your hair down.

Sitting all day is a killer for me, so I try and alter my posture as much as possible and take frequent breaks away from the screen, even if its just getting up and walking to look out of the window for a few mins. And remember, work isn't as important as your health, maybe you need to cut down on the long hours. But at least you have a partner who is standing by you - mine left me just as this came on so its been pretty tough for me on my own, but I'm getting there so feel thankful for that.

Let us know how you get on in Shagaluf (sorry, you have a girlfriend, I mean Magaluf) and how you get on with Bill.

Gary

[graeme]

Also really glad you spoke to Bill. Yes he is a top bloke, and the good thing with him is that he does it because he genuinely cares about people, and his support isn't just in the office, but if you are having a bad day, just ring him up for a reassuring chat. I know it can be expensive to see him, but it is WELL worth it, even if just once. I saw him 4 times, and it helped me lots.

Good advice (Bill will take good care of you )

Alcohol is hit and miss with many on here, big no-no for me

Glad to see you still doing ok gaz

[connellm]

Hi all. Just returned from Magaluf. Overall a good trip and the condition certainly didn't impact on my enjoyment of the holiday. I did notice that drinking lots of alcohol seemed to itensify an aching feeling in my perineum. It's something I have noticed before and was wondering why that might be. Apart from that I had a bit of mild urethral discomfort and my stomach felt swollen at times no doubt due to caning the booze a bit and indulging in foods that I probably shouldn't have. Before the trip I had been keeping a diary of what I was eating, I was trying to cut out all wheat and dairy and noticed than on a day when I was away from home and had little option but to eat what was available a day or so later I was pretty bad for a few days. I also get the feeling that I'm currently on the cusp of another flair which is unsurprising really, but will see how I go in the next few days by switching back to being healthy.

As far Shagaluf Gary, honour was maintained mate. Although to be fair with it being end of season there weren't that many birds about to tempt you!!

[webslave]

I did notice that drinking lots of alcohol seemed to itensify an aching feeling in my perineum. It's something I have noticed before and was wondering why that might be.

Alcohol and caffeine acidify urine, so that's part of it. Alcohol, especially in binges can cause an attack of gout or kidney stones in some men. The effect of alcohol is to cause dehydration, which then increases the risk of more concentrated uric acid precipitation and acid urine. In smaller doses, some men say alcohol relaxes them and helps with symptoms.

Caffeine is a common bladder irritant as well. Caffeine in any form--coffee, tea, chocolate or soft drinks--tends to tighten the bladder neck and make it more difficult to pass urine. Some of the prostate is made up of smooth muscle, and anything that causes that muscle to constrict will make urination more difficult. Caffeine does this quite a bit.