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En engelsk anestesiläkares synpunkter på sin kroniska prostatit En engelsk mikrobiologs synpunkter på sin kronisk prostatit En engelsk psykologs positiva åsikter om medicinen Lyrica för sin kroniska prostatit Funderingar rörande kronisk prostatit och IC Observera! Cykelsadel/cykelsadlar/cyklist/cykling Behandlingar som varit mer eller mindre resultatlösa Behandlingar som hjälpt mer eller mindre
Jag har på en separat undersida sammanställt ett antal svenska sjukdomsberättelser, som varit införda på vårt diskussionsforum. Du når undersidan genom att klicka på Min sjukdomsberättelse. Se även sidan Cases in English (prostatitis) som innehåller sjukdomsberättelser från internationella diskussionsgrupper.
En engelsk anestesiläkares synpunkter på sin kroniska prostatit As a fellow chronic prostatitis sufferer, I have been reading your posts (BPSA's mailing list) recently. I am also a doctor (consultant anaesthetist, not urologist), but having suffered the disorder for 13 years, think I know quite a lot about it! I recently went to Addenbrooks Hospital, Cambridge, where there are 2 urologists, Mr Doble & Richard Batstone, who specialise in the disorder, on the advice of the urologist I normally anaesthetise for in Coventry. I met Mr Batstone & had a 2 hour session with him - blood tests, urine flow tests, urine specimens before & after prostatic massage - quite something! What I learnt you may find interesting - prostatitis usually starts witha bacterial infection, but becomes an autoimmune disease if it is chronic. Richard thinks that it is your owm body reacting to something in seminal plasma - possibly a protein- but finding this out is extremely difficult. There are many substances secreted by the prostate such as prostaglandins, which reduce the female's tendency to become allergic to the man's semen (this can happen in infertility). These make it almost impossible to identify the offending substance by normal tests. Richard is still trying to find out how to do this. I was put on their double- blind trial of tamulosin & naproxen (alfa blocker & non steroidal anti- inflammatory), but after 3 days had a sudden severe flare - up with severe backache. I had to stop the trial (because I could have been on a placebo) & go on to Voltarol & Quercetin complex ( which he recommends). Fortunately, after nearly 2 weeks of severe pain things are improving! So these are my experiences recently: "In the past I have had my prostate microwaved (worse), a mini TURP (worse), & every antibiotic know to man. Cipro & doxycycline are the only two that seem to penetrate the prostate, but most of the time the disease is an inflamation, not an infection." So that's my experience - hope it helps! Best wishes, Kevin Evans, M.B., FRCA. Email: EvansKevev@aol.com
En engelsk mikrobiologs synpunkter på sin kronisk prostatit Nedanstående är saxat från den brittiska gruppen BPSAs mailinglista. Dear Kelly! I know and understand what you and your partner are going through, I see hundreds of men who experience this debilitating illness but its not all bad news personally. I have had prostatitis for approx twenty years (I was 27) but I have not had pain/discomfort for all that time, there have been years between various episodes and hopefully the duration of the pain free stage will increase. The aetiology of the disease is complex and a lot more research needs to be done. The pain from prostatitis is similar to the worst type of period pain that lot's of women get each month but with prostatitis it may last weeks, months or in some cases years.The duration of the illness varies from person to person; this is obviously dependant on the stage of the disease, antibiotic or other therapy but generally speaking once a member of the prostatitis family always a member. There are a number of things that you both can do; you obviously care very much otherwise you would not be here asking questions. Don't just concentrate on the prostatitis; what brought you together in the first place "fun, laughing, going out, silly things". Sometimes men just don't want to talk about it, this is very difficult for women (period pain that men don't appreciate) to understand at times, he may well be moody, snappy, tearful, lost etc. It maybe affecting his work but you can help by just being there and supportive. He is not rejecting you he's could be rejecting himself after all its a new relationship and he may feel that he is not the knight in shining armour saving you from the dragon (or words to that effect). Sex can be very painful due to pain on ejaculation and aching in the testes long after, this can really affect a relationship men sometimes feel that if they cannot perform that's the end of life as we know it, well its NOT. Sex does not just revolve around the man get him to do things for you (making love can be very funny at times!) A good diet, oily fish, lean meat, fresh fruit and veg. He must not get constipated. Well-hydrated 2 litres of water a day. Tea coffee and alcohol keep to a moderate level if possible; some men cannot not touch a drop without exacerbating their symptoms. Exercise, walking, swimming etc. Sleeping is very important; if we don't sleep well we don't conserve serotoinin, which is one of our happy drugs hence we could get depressed. These are just a few things I hope they help if you have specific questions please just ask. Simon (Dr. Simon Rattenbury) Email: srattenbury@yahoo.ie
En engelsk psykologs positiva åsikter om medicinen Lyrica för sin kroniska prostatit The Magic of Lyrica (Pregabalin). Dr. Jon Bernardes, long term Prostatitis Sufferer, Shropshire, United Kingdom. From the BPSA 2005-08-21. Diagnosed with Chronic Prostatitis in January 1994, I have lived with pain and discomfort (not to mention more usual prostate symptoms such as urgency, frequency, pain on urinating) for over 11 years. I was a previously fit and healthy middle class professional then in my mid forties. Since 1994, I had not had one single day when pain management wasn't the over-riding issue in my life. As with many chronic pain sufferers, I managed to keep working but gave up any kind of social life, lost fitness and began to look forward to retirement just to end the daily struggle of getting to a (thankfully very flexible) job. The various management strategies involved 4 components: a regular (16 week) caudal block, acupuncture (4-6 weekly), Dothiepin (an anti-depressant which also interacts with acupuncture to relieve pain), and the main daily drug of Coproxamol - ranging from 2/3 tables on a 'good day' to the maximum dose of 8 on a 'bad day'. With the end of Coproxamol prescribing in sight in the UK, I tried a wide range of other prescription painkillers with my GP's help - all were far less effective than Coproxamol and some had unpleasant side effects. About to panic (and very depressed) I attended my regular caudal block and discussed the issue with my Pain Consultant who suggested a new drug: Lyrica ( a.k.a Pregabalin) - licensed for use on neuropathic pain in July 2004 - see European Medicines Agency: http://www.emea.eu.int/humandocs/Humans/EPAR/lyrica/lyrica.htm ; at time of writing the drug is not on UK Pfizer site but the American review can be seen at: http://www.drugdevelopment-technology.com/projects/pregabalin/ or http://www.pfizer.com/pfizer/are/investors_releases/2004pr/mn_2004_1231.jsp . I contacted my very helpful GP and got a prescription - so my years of pain came to an end - not simply and immediately but after some experimentation and careful management. From the very first tablet, I realised that I had simply forgotten what life without pain could be like - initially, these were only brief periods between a range of side effects -most notably, a distinct dizziness and headaches (the latter probably due to withdrawing the Coproxamol). Initially I tried one 75Mg tablet 12 hourly..the dizziness continued and the pain began to feel like it might return after 6 hours and did return with a vengeance towards 12 hours. Within
a week, I dared to try a cycle ride in the pain free period and found that I
managed a mile or two with no ill effects; I repeated this with time and found
that such exercise did not seem to lead to pain crises (as it had in the past).
To tackle the midday pain, I moved to 75Mg tablets 8 hourly and found this much
more effective in terms of continual pain control BUT found myself in a
continual haze (not unpleasant but I did not like to drive); the bike riding and
exercise developed well and I began to have patches of feeling really well and
pain free. My GP then agreed to prescribe 50Mg tablets and this dose 8
hourly has removed the haze and any dizziness. After nearly three whole
months, I am pain free, regularly riding my bike (6 - 9 miles a day) and
have returned to my favourite exercise - Jogging. I started VERY carefully
with one minute jogs but am now up to 60 minutes. My wife and I had a
marvellous 2 week holiday in Crete where I swam regularly, walked miles, hiked
up and down mountain gorges and generally managed like a perfectly healthy
person. I am losing some weight and beginning to feel much healthier and,
strangely, some of the prostate symptoms are also abating. Lyrica, however, is
not a cure - if I forget a tablet for a few hours, the familiar nagging pains in Strangely, I cannot find much mention of patient experiences with Lyrica on the internet and I am still not really sure what 'neuropathic pain' is BUT this stuff is simply magic for me and my prostatitis. So far, there are limited side effects - the dizziness seems to disappear after a while and the drug appears to 'target' the pain very well. A broken tooth hurt like hell despite my prostate pain being completely absent; previous painkillers (such a Coproxamol) seem to hit your whole system and mask any and all pains; Lyrica seems to just control the long term prostate pain. I have no idea whether this drug will work for anyone else but do suggest that you talk to your GP and give it a try - be prepared, though, to take control and experiment with dose strength and period (I am on 3 * 50Mg = 150Mg daily; the maximum is 600 Mg a day so I guess there is room to manoeuvre. The drug comes in 25 mg, 50 mg, 75 mg, 100 mg, 150 mg, 200 mg, or 300 mg capsules so it should be possible for anyone to experiment with dosage until they have good pain control..BEST OF LUCK! Time and continuing permitting, I will try and respond to any queries to J.Bernardes@wlv.ac.uk but please be patient - PLEASE provide a subject line including "LYRICA".
Funderingar rörande kronisk prostatit och IC Det här är inte en "vetenskaplig sammanställning", utan några iakttagelser som jag gjort efter ett stort antal telefonsamtal, brev och mail från drabbade:
Ovanstående finns också för utskrift i pdf-format på en A4-sida.
Tillbaka till Symtom vid prostatit (på sidan Prostatan (prostatakörteln) och prostatasjukdomarna)
Varma underkläder kan du bl.a. hitta hos firma Siden Selma, Dragarbrunssgatan 53, Uppsala. Tfn: 018- 12 42 50. Deras hemsida är http://www.sidenselma.se Jag har inte provat plaggen, men enligt reklamen så skall deras vintervariant vara betydligt varmare än t.ex. bomullsunderkläder.
Om du inte vill prova ovanstående så finns ett mycket bra men lite krångligare alternativ. Det finns ett "underlivsskydd" från TENA som heter Comfort Plus. Till detta finns två olika elastiska underbyxor för att hålla det på plats. TENA fix (25 st/förp.) och TENA fix cotton special. Den senare är enligt min mening att föredra. Såväl skyddet som underbyxorna finns i olika storlekar. Du skall vända dig till din distriktssjuksköterska för att prova ut det som passar dig bäst. Räknas inom de flesta landsting som fritt hjälpmedel i första hand för inkontinensbesvär, men stå på dig och förklara din situation om du blir nekad i ett första skede. D.v.s. att du har ont då du sitter och att du behöver den extra värme som skyddet ger! Mer information hittar du på http://www.tena.com
För de (i första hand kvinnor) som är oroliga för en ökad infektionsrisk vid olika former av bad, är plasttrosan Suprima 205 ett bra alternativ. Finns i olika stolekar och har resårer kring midja och lår. Är egentligen ett inkontineneshjälpmedel och har därför ett 12 mm:s "luftningshål" vid vardera sidan. Dessa kan enkel tejpas igen med t.ex. Leukoplast vattenfast 5 m x 2,5 cm (köpes på Apoteket). Sätt en tejpbit på insidan och en på utsidan. Mer information från Ontex Komfortprodukter i Fritsla, Rödklintsvägen 1, 511 72 Fritsla. Tfn: 0320-703 70. http://www.onetex.se/vuxsupr205.htm
Från ett par håll har vi fått tips om att det varmaste och bästa sittunderlaget i bilen är det som man gör själv av ett sovsäcksunderlag. Köp den tjockaste och mjukaste kvaliteten. Klipp till, vik och spänn fast så att det täcker både sitt- och ryggdynan.
Jag har förstått att många drabbade använder en "Värmepåse" för att försöka att få lite lindring av sina besvär. Jag har fått följande mail från en drabbad och hoppas att andra kan ha nytta av den här informationen. Jag är inte riktigt säker, men enligt vissa så innehåller dessa påsar inte vanligt vete utan bovete. Kanske gör det inte så stor skillnad? När det gäller vetepåsarna "Vetevärme", (Bejlas Gåva AB, Stora v. 47D, 780 44, Dala Floda. Tfn: 0241-227 40), så finns de att köpa i hälsokostbutiker. En mindre kostar 169:-. en lite större eller längre 20x40 cm, 180:-. Det går förstås att sy en påse och själv stoppa i ca 1,5 kg vete. Påsen går att värma både i vanlig ugn och i mikrovågsugn. Den som använder denna påse skriver: "Själv sitter jag på den 1/2 - 3/4:s timma och det ger lindring mot smärtor i ändan och på insidan av låren. Värme lindar också mot värk i axlarna, värk som troligen är relaterad till prostatit. Då får påsen vila på axeln när man krupit in under det goa täcket för natten."
Cykelsadel/cykelsadlar/cyklist/cykling Enligt tidningen Apoteket nr. 3, 2003 så visar flera studier att män som cyklar länge på hårda sadlar löper en viss risk att få nedsatt potens. Blodflödet till penis minskar med upp till 70 % av trycket mot en hård sadel, jämfört med 22 % om man använder en bred mjuk sadel. Vid cykelmässan 2003 visades det allra senaste - bulliga, hjärtformade sadlar fyllda med gel. Olika modeller av gelfyllda cykelsadlar finns hos Clas Ohlsson, Team Sportia och Cykelhandlare. Rido Cyclesaddles http://www.rido-cyclesaddles.com/content.php?categoryId=267 Här finns bl.a. följande artiklar om: Cycling and impotence - are you at risk?, The unseen danger, Perineal trauma och The Lancet Medical Journal looks at saddle injuries. Potomac Cycling Club, USA http://www.bikepptc.org. "Rest your crotch for hours at a time on a piece of leather only a few inches wide, and you're bound to have some problems. Repeatedly pump your thighs up and down against the leather while wearing tight Lycra shorts, and the complications multiply. Bounce delicate body parts against the leather as you transverse rough roads, and it's time to seriously reconsider the meaning of life. Cycling can induce a plethora of nether-region injuries that range from annoying to devastating. The crotch itself doesn't normally bear weight; it's the job of the ischial tuberosities, or sit bones. Ideally this part of your anatomy should contact the saddle. However, with poor bike fit or in an effort to achieve an aerodynamic position, part of your body weight can rest on soft tissues with painful consequences."
Hur en bra sittkudde kan vara utformad för att lindra smärtor och trycket i perineum, framgår bl.a. av följande amerikanska URL: http://www.painreliever.com/donut.html , ICN-shop och http://www.theraseat.com/ En drabbad har köpt en bra sittkudde i svampgummi med tygöverdrag på Melins Sjukvårdbutik, Kungsgatan 53, 111 22 Stockholm. Tfn: 08-10 67 13.
Behandlingar som varit mer eller mindre resultatlösa
Behandlingar som hjälpt mer eller mindre
Från
diskussionsgruppen sci.med prostate.prostatitis har jag hämtat
nedanstående citat, som visar den förtvivlan och desperation som många av
oss känner. De flesta av oss är liksom de här personerna beredda att göra
nästan vad som helst för att få någon lindring.
2005-08-27. Doctors have ignored this condition for so
long, letting the men who suffer from
it live in misery. The people who suffer from it are the experts
because no one else cares. What the hell should guys in the forum do? Tell you
to see a doctor who probably knows less than you do?
En sida med sammanställda tips från drabbade i USA finns på http://prostatitis.org/itworksforme.html. Se även The Prostatitis Foundations FAQ: http://prostatitis.org/prosfaq.html En patient beskriver hur han gjort på http://www.geocities.com/bill3320/index.html
De flesta som vi haft kontakt med rapporterar ingen eller obetydlig smärtlindring med de mediciner som ordinerats av deras urologer mot smärtorna. Flera drabbade som jag har haft kontakt med i USA och England, rapporterar att det enda som ger någon lindring är en medicin som i Sverige heter OxyNorm. Vi är därför mycket intresserade av att få in rapporter om "lyckad" smärtlindring.
Vi är tacksamma om svenskar som genomgått behandling för kronisk prostatit utomlands berättar om detta. Jag vädjar därför till er (kontakta mig anonymt om du vill det) att skicka en mycket kortfattad information om vilken klinik, resultat, behandlingsmetoder och kostnader. Detta kan vara av mycket stort intresse för andra och jag kommer i så fall att publicera detta under den här rubriken. Gå till undersidan Behandling utomlands.
Du behöver inte vara så här dålig för att lämna bidrag till sidan!
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