Thinking about having a PAE?

Posted , 8 users are following.

Hi, About 5 years ago I had to have a cathetar - A few months later I started to get pains down the back of my legs and a very unconfortable feeling which turned out to be my Prostate. I looked on-line for things to help such as Saw Palmento, Tumeric capsules and many others and none seemed to help. Eventually I went to the GP (I Live in Portugal) and was referred to a Urologist but weeks went by and did not hear anything. So, I looked into finding a private one (cant afford to go private but thought by seeing a Urologist I would get some idea of how to deal with whatever I had). I saw a Urologist a week later, He seemed very good and I explained that I could not afford to go private, He told me to go to Faro hospital the following Thursday and wait outside His door and He would see me when He could (very busy man). From then on I saw Him almost every thursday for at least a year and He put me on Anti-biotics. None of these worked. I have had every kind of scan and examination possible but they could not find anything other than an enlarged Prostate. He had me admitted to Faro Hospital where I stayed for 10 days on IV anti-biotics. After a few weeks there was still no change. I started going down the Homeopathic road, total waste of time and even tried directional Frequency treatment, which for me was a waste of time. I kept seeing the Urologist at Faro Hospital and one day I went their and there were two other Urologist down from Lisbon who looked through my records, they all got together and gave me the Ultimatum; either have a TURP, which they told me was high risk because a) they did not know what the problem was and IF it was some kind of rare bacteria that they had not been able to recognise I would have 50% chance of getting Septicemia and if I got it I had a 50/50 chance of surviving the op. Furthermore, they said that I also had a 50/50 chance of getting the following after effects; Ejaculating into my bladder, leakage, ED, low sex drive. FOr me it was a no brainer - NO WAY, thanks and good bye. I spoke to a few people after that and all said that I made the right decision, basically don't let anyone cut you up, specially if they are not even sure what is wrong with you, I couldn't agree more. Eventually last year I went back to the UK, initially to try and get a Multi Parametris MRI scan done to see exactly what the problem was and saw a specialist there, He was delighted to see first hand for the first time in His life what He had only read about and seen photos of in books before...It was the Eifell Tower, He held up some x-ray's from scans that I had bought with me and spotted the aparently tell tale image of an Eifell Tower shape within my prostate. He diagnosed it there and then 100% that I had chronic prostatitis. He said that there was nothing He could do and to save my money - do not wast it on a MP-MRI. Non bacterial chronic parosatitis. He mentioned the name of a Urologist who specialised in Prostatitis in Oxford, this man has a psychologist with Him at his consultations and was, so I was told, the best in the UK for my problem, I am currently waiting for the appointment, that was last August! Of late I have been getting more symptoms; I have a numb sensation all over, it feels like I have a "dead leg" but all over me, I cannot get an erection, my penis seems to be getting smaller and smaller, my flow has become more frequent and pathetic, I have never had to get up to go for a pee the entire time that I have had this (I mention this because every other story I have read the patient has had to get up 4-6 times a night), I have pains down the backs of my legs and lower back (I do have a bad back anyway) and as another member said, it feels like I have had a tennis ball stuffed up my arse....more like a bowling ball. I am about to commence a course of the following, after reading various posts on here, it will be as follows:-

 

Quercetin + Bromelain (1000mg caps), Saw Plametto (350mg+ caps), Vitamin C (1000mg caps), Magnesium Glycinate 500mg caps, Oil of Oregano (In case of any yeast infection) & Echinacea Goldenseal (to boost immune system)

I have been taking Amitriptyline since last July '15 (now 1st June 2016) I have stopped as it doesn't seem to do anything. I have just re-started to take Diazepam at night so help get me off to sleep and I have Tramadol ready for when the pain get to bad (which is pretty much all the time but I mean REALLY BAD). I think, please anybody tell me if this is impossible, that the cathetar I had more than 5 years ago may be the culprate! It's the only thing I can think to blame it all on unless it is just a coinsidence. So, after reading various posts on here I have come to the conclusion that I need to have a PAE - all but one member thought it was excellent. I am def not having a TURP - Anyone, any ideas as to what I shouold do. Looking forward to hearing from you!

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13 Replies

  • Posted

    Hi Rob. I am 75 and having a third TURP 13th June.

    I am not worried about loss of erections as I am.a widower but if you are say overy 65 plus then I would look at a TURP. Enlarged prostate can cause the symptoms you mention. Take care and all the best.

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  • Posted

    Hi, thanks for your interest and advice. I am 47 and have basically rejected the option of a TURP completely. Think I am right.
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  • Posted

    What an astonishing and frightening story. Really feel for you. There should clearly be much more reseach into chronic prostatisis. All a quick look on the internet seems to find is meds for alleviation of the symptoms. If that fails, total removal of the prostate - is that the final resort ? You need to press for that Oxford appointment.
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  • Posted

    Rob, my symptoms were very similar to yours and started in May of 2013 at the age of 48. Condition progressed fast and symptoms were becoming worse and worse over period of 3 years that lead into AUR 2 months ago. I also had CT scans of abdomen and pelvis and 3 cystoscopies which all confirmed fast progressing BPH. Now, I am 51.

    Today, June 1st, in 5 hours i will be heading to the hospital for TURP surgery.

    Not trying to scare you but BPH is a beast that will ruin your life.

    Take care to prevent it.

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    • Posted

      Hi, Thanks for your reply. If I were you I would strongly advise asking your Dr. about having a PAE first, no surgery and a higher success rate! I know it seems very last minute but this is your life, a non surgical process is surely worth trying first! Especially with the possible side effects of a TURP! Please let me know what you do and how it goes. Best of luck - Rob
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    • Posted

      Had TURP on June 1st. Post op had a catheter for 8 days. Could not urinate without catheter. On June 9th catheter was out and so far I a pleased with my recovery.

      Got pathology report and it was not good. One of prostate chips was positive    and it was Gleason 6 Adenocarcinoma of prostate.

      In 3-4 months I will have prostate biopsy and this waiting time will emotional roller coaster for my wife and I.

      In the mean time, trying not to stress and speed up recovery as much as I can.

      TURP was not bad at all. No pain, NO INCONTINENCE and have ERECTIONS  from first post op night. My urinary stream is very strong and I am able to empty my bladder very quickly.

      something what I did not expect from TURP is to find prostate Ca.

       

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  • Posted

    TURP should always be the last option, not the first. That said, you'll have to deal with whatever coverage you can afford based on your situation - although there are lot of guys in the UK that seem to have been able to access other proceudres,

    Your first line of defense: PAE, Urolift, Rezum. All non invasive with very little risk of complications or sexual side effects. Second (if the first are unsuccessful): HoLep - it will leave you with RE, but otherwise seems to give the best results with quickest recovery where they actually cut or laser something. Third: Try self cathing for awhile - it might give your prostate enough of a rest for the symptoms to relax - there are some people on this forum who have had that result. Last: TURP. - for the reasons you cited.

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  • Posted

    I agree with old buzzard. Start with the easy, less invasive stuff. That would be PAE, then, if necessary, urolift. On the chance that you haven't heard this before, remember that a PAE is done by an interventional radiologist, not a urologist, so it will never be recommended by the a urologist, since they make no money on it.

    I know that this sounds silly, but, WITH MEDICAL SUPERVISION, try 2 200mg Ibruprophen, every 4 hours for 3 weeks. The medical supervision is important, because without it, Ibruprophen can cause you to lose a kidney or two. Obviously, this can't be a long term solution, but if it works, it makes it more likely that you have a NON-bacterial prostatitis. The PAE really is easy. You end up with 4 small holes, like an IV in your wrist or groin, and one in your other arm for anesthesia. Let us know what's happening with you.

    Neal

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    • Posted

      Hi Neal, Thanks for your message. Another factor that I forgot to include is that my PSA reading has been up to 32! The last reading, about 8 months ago was 24. As I am sure you are aware for a man my age the max should be 2.5 - I am 47 years old. Does that shed any further light on the matter? Thanks again and regards - Rob
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    • Posted

      You might consider an MRI guided prostate biopsy. When this is done an MRI is taken of your prostate. If any tumors are seen, they are biopsied. This is much better than a common biopsy where the doctor simply pokes around in your prostate and hopes to find something. When that is done he may miss a bad tumor, or find a low-risk tumor and miss a high-risk tumor right next to it. He might as well biopsy your big toe with a common biopsy. But with an MRI guided biopsy only visualized tumors are biopsied.

      But don't panic. Prostatitis can also increase your PSA, but obviously you need to have this checked out.

      Neal

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  • Posted

    Hi Rob

    it must be terrible for you, and a consultation with the Oxford specialist - would it be possible to see him privately ?

    I think if you try for PAE, it is only being done in very few places in the UK - Southampton (leaders) and Liverpool I think. If you know better, I'd love to know.

    It may well be that PAE can help, as it stops blood flow into some parts of the prostate, which die away and are absorbed. It certainly seems to help with flow problems mant say, but again, a real consultant should advise you - but as this is not a urological procedure, you should probably ask a PAE consultant radiologist.

    You PSA level would be ringing alarm bells under normal circumstances, but the chances are it is just the condition of your prostate, nothing worse.

    Referring to your original question, did catheterisation cause that? Impossible to say. Consider why were you catheterised, what sort of catheter, was it done cleanly by hospital or by yourself, was there any bleeding after insertion?  All these factors are really saying 'what chance was there of infection or physical damage/tearing of the prostate content' ?

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    • Posted

      Dear Gbhall, Thank you for your time in replying. I was wrong it is not Oxford it is Cambridge and the urologist is called Andrew Doble, He is supposed to be the best in the Uk for Chronic Prostatitis. I could see Him privately, unfortunately my funds do not allow that! I have looked into where I may be able to have the PAE done and it turns out that one of the world leading PAE radiologists is here in Portugal, a Dr.Martins Pisco at St.Louis Hospital, Lisbon. I called there this morning but they do not do the procedure on the national health service. I have lost all my money because i have not been able to do my job properly for the last 5 years, I am on my 4th month of default on my mortgage. All because of this condition. As for the catheter, it was inserted at the Hospital in Portimao, the nurse did not even wear any gloves and it really hurt when She inserted it, I wondered if She may have damaged a nerve causing this numbness, I don't know. Anyhow, there could well have been a possability of infection there! Thanks again and regards - Rob
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    • Posted

      Could be worth emailing Dr Doble. There would be several things you could ask him, starting with your 100% prostatisis disgnosis and the 'Eiffel tower' thing. How it affects your life and prospects. Would he support PAE as a treatment? Could he inform you of any UK or even Portugese trials in prospect (i.e. free treatment if you promise to return for tests etc), Would he ever envisage referring you to Dr Pisco on the NHS after he eventually sees you?

      Your original post is excellent as a basis for what you could say, but drop all the medication stuff. Try to arouse his interest in you as a case study, but not a boring one!!

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