So Far So Good 2 and a half Months Post LRP

[Nik]

My story of prostatitis began back in 2001 when I had a chronic haemorrhoid surgically removed. When I woke up the surgeon told me he had removed 1 haemorrhoid and injected another 2 with sclerosant. Six weeks later when I was still feeling some rectal pain I became concerned and went to see another proctologist who said after examination that all the haemorrhoids had gone so he did not know why I was still in pain. I thought it was just taking a long time for the area to heal after the surgery. The pain was not debilitating so I just lived with it for a while thinking it would eventually go away. The discomfort stayed stable but bearable for about 3 years after that. I just thought some nerves in the rectum had been permanently damaged and that I would just have to live with it.

 

 

One day I woke up with an awful feeling of having a blockage in the rectum as if a golf ball was lodged up there. With my history of haemorrhoids I assumed I had developed a new large internal haemorrhoid and went to see a specialist who upon examination could not find anything that should be causing me significant pain. He continued probing the inside of the rectum then pushed against my prostate and asked if it hurt. Through gritted teeth I confirmed that it did. He told me that I had prostatitis and referred me to a urologist. The urologist told me not to worry and gave me ciprofloxacin. After a month on ciprofloxacin my symptoms had eased back to the usual rectal discomfort that I had become accustomed to since the haemorrhoid surgery. The improvement lasted around 6 months before it relapsed. By now my GP would deal with it with repeat prescriptions of ciprofloxacin every 6 months or so. This worked for 3 cycles until the 4^th flare up when ciprofloxacin no longer worked. We then moved onto doxycycline which worked for about another 2 cycles before it too stopped working. Next it was azithromicin which only worked once before becoming ineffective, then trimethoprim and many, many others to numerous to remember. In the end it became clear that antibiotics were doing more harm than good so we gave up with them.

 

Finally by Sept 2007, after an ecoli urine infection, the debilitating pain was here to stay. I could no longer sit down which was a big problem as my job as a CAD design engineer involved sitting all day at work. I began having many days off sick as I was in too much pain to sit down for long. I had a TRUS at my local hospital too see if there was anything obvious causing my pain. It showed a heavily calcified prostate consistent with chronic prostatitis- no surprise there. Not only could I no longer sit, but I had urinary urgency and urethral burning along with constipation due to the prostate inflammation. My semen had turned a yellow colour but it never cultured any bacteria. I was getting up around 5 times a night to urinate but eventually the urgency died down thank god, because at this point with the lack of sleep I was having suicidal thoughts. I had extra pain for days after intercourse which put a real damper on my sex life. The left testicle pain was no barrel of laughs either. I also suffered from severe night-sweats to add to my dismal existence.

 

By now I had done a lot of internet research and was trying all sorts of natural cures like quercetin, saw palmetto etc. The quercetin helped a little but was barely more than placebo. Nothing else helped at all, except to empty my wallet. I was on stool softeners for the constipation which my GP prescribed. It was the only way I could empty my bowels and even then I would have to lie down for an hour or more after a bowel movement until the pain lessened enough to just about functional levels again. My GP had prescribed Tramadol which was the only thing that kept me functioning at all by this point. Lyrica was also helpful in the beginning but its effects eventually wore off and left me with about a stone of extra weight and memory problems. When I tried to stop it, the withdrawal symptoms were so severe I had to keep taking it. I also took anti inflammatory pain killers alongside everything else.

 

I had entered negotiations with my boss to cut my hours in return for proportionally less pay in order to cope with my condition more easily. Just as these negotiations were progressing we heard from head office that due to the changing economic climate they were shutting down our branch and making us all redundant. I no longer had a job to fight for and finding a new one with debilitating prostatitis was going to be impossible. Luckily in the UK we have a safety net for situations like mine and I ended up claiming employment and support allowance (a kind of disability allowance) once I had proven to them how debilitating my condition was. The money was not much, but better than nothing and helped pay the bills. At least my wife still had a job.

 

Now without a job I had time to try some more unconventional treatments for my prostatitis. I had read on forums about others who claimed success from having a Radiologist in California inject their prostates with a mixture of antibiotics, painkillers and steroids. I decided to go and get these injections. My wife and I booked a flight to California around Feb 2010. I needed my wife with me so that I could lie over to one side with my head on her lap during the long flight to take some pressure off my prostate. Luckily we had an extra seat too which really helped. I saw the Dr a day after we arrived in California and had the first set of 3 injections. The procedure involved a colour doppler ultrasound first which again confirmed a calcified prostate, this time detecting a large stone in the neck of the left seminal vesicle. The Dr told me I was one of the worst cases he had ever seen. The procedure was tolerable at first but by the time I got back to our motel I was in a lot of pain. I somehow managed to go to sleep eventually. When I awoke the next morning I had no pain whatsoever. I was elated, for the first time in years I was pain free. I had blood in my urine but I was fully warned this would be a temporary side effect along with blood in the ejaculate so I was not worried. For a couple of hours I was full of hope, until my first bowel movement that was. After that, all hell broke loose. I was lying on the bed crying in agony, in the most pain I had had so far. I called the Dr and spoke to the receptionist who told me that this had never happened before. I asked if I could be prescribed some very strong pain killers and at the same time cancelled my next injections which were scheduled for 2 weeks time. I was told the Dr did not normally prescribe narcotics, but in the circumstances he would. He faxed a prescription through to me and my wife took me to the pharmacy to collect the pills. They helped get me through the next 2 weeks which is when we managed to get an early flight back to the UK. Being in that much pain in another country where my healthcare was not covered was a very frightening experience I hope to never repeat.

 

Another thing my prostatitis had affected was my fertility. It was approximately 10% of that of a healthy man. My wife and I had hoped to have kids one day but by now had realised our only hope was IVF. I had been considering prostate removal for some time by now but it was out of the question until we had at least tried all we could with IVF. Its a lot easier to do while having semen than having to do testicular sperm extraction. Our first two attempts failed. My wife was getting depressed too by now, with hopes of becoming a mother diminishing with each failed attempt. On our third attempt we struck lucky. A positive result. We were elated and went to the IVF clinic for our confirmation scan where we got our second surprise, twins..!!!

 

Around this time I had read others having relief with a supplement called Allicinmax. A garlic product with stabilised allicin which apparently has broad spectrum antibiotic action. With nothing to lose I ordered some. Much to my amazement within days I felt much improved to the point of becoming functional again and within 2 weeks I was almost pain free. I tried not to get too exited as sometimes I would get temporary good spells anyway, but the relief continued for about 3 months or so. I was beginning to get real faith with this product by now until one day whilst on holiday in France my symptoms returned with a vengeance. I now needed 6 Tramadol's a day just to bear the pain. I made a decision on that holiday, most of it spent in bed, that the risks of Laparascopic Radical Prostatectomy were justified. I had already seen Christopher Eden, the UK's most experienced LRP surgeon previously, to discuss the possibility of needing the surgery one day. I had also spoken to Arnon Krongrad in the early days of my prostatitis after reading about David Radford, by email and later on by phone when finding out how the trial was progressing. Based on my age, baseline function and otherwise good health, both surgeons agreed that the likelihood of a good outcome was high. All other surgeons I had spoken too were completely dismissive about the surgery and told me it was only done for cancer and that I would have to learn to live with my condition. They all told me I would almost certainly be permanently impotent, but probably eventually regain continence, were I to undergo surgery. Due to their relative lack of experience, I would not have chosen them to perform my surgery anyway, even if they had given me an option. Perhaps it was fear of their own sub optimal results that made them reluctant-who knows? Perhaps they were just not willing to carry out the surgery without evidence of a pre existing trial? Understandable to a degree I guess.

 

I booked the surgery with Christopher Eden for 1^st June 2011. I had a month to wait and to be honest it was the scariest decision I had ever made in my life. What was even scarier though, was living with my condition for the rest of my life, on top of that knowing that around 70% of prostatitis patients so far were being found to have early prostate cancer. What kind of father could I be with this condition? The thought didn’t bear thinking about. My twin girls were here now and in the beginning while the Allicinmax was helping, I was able to be a good father and really help my wife with them.

 

I was now however spending half my days in bed again once the Allicinmax stopped working. I was on antidepressants along with all the other pain killers, just to keep me going mentally. What would we do when my wife went back to work when her maternity leave ended? Childcare for twins was unaffordable, especially with only one salary coming in. There really was no option except surgery, and to pray it worked.

 

I checked into the hospital on May 31^st 2011 and had a very restless nights sleep. I was not entirely convinced I was doing the right thing but I could not really see a future with chronic prostatitis so I decided it was all or nothing. I was only prepared to “learn to live with it” should the surgery be ineffective.

 

When I awoke from the surgery I was in a lot of pain and agree with one of Dr Krongrads's patients about the feeling of a burst bladder. I had taken a lot of Tramadol leading up to the surgery and I am sure I had built up a tolerance to morphine during this time. Once my pain was under control one of the theatre staff said I had taken enough morphine to knock out a rhinoceros!!! After the first few hours I was comfortable. My drain was removed the next day along with my IV tubes and in the afternoon I was out of bed and went for a walk down the corridor with my catheter. I spent 3 nights in the hospital (standard in UK after LRP).

 

The pain after the surgery was different to the pain from prostatitis. There was no golf ball feeling, just soreness and some occasional spasms in the area where the prostate used to be. The spasms happened about 5 times or so and were quite severe but they have not happened again since. I noticed that the pain was now controllable with paracetamol and diclofenac. These painkillers were near useless before the surgery.

 

The catheter was not painful, just inconvenient and uncomfortable, but it was nice not to have to get up at night to pee. I spent 2 weeks with the catheter and went back to have it removed where I spent another night in the hospital while the nurses assessed my leakage and made sure I had no complications. In the beginning I leaked urine whenever I went from sitting to standing. This went on for approximately 5 weeks with gradual improvements through this time. Afternoons were the worst, while nights were dry almost immediately. Between 5-7 weeks I had a dramatic improvement with continence as the sutures connecting my urethra to my bladder dissolved and my urinary sphincter was able to return to its full range of motion. I was instantly only requiring 1 light pad a day at this point, down from 4 to 5 before the sutures dissolved.

 

Erections started very early within the first week while awakening wearing the catheter. I was pleasantly surprised at this as I was mentally prepared for months of impotence. About 3 weeks after the surgery I experimented whilst in the bath and was able to achieve an erection approximately 75% of what it was prior to surgery. I waited a bit longer to heal more before trying to orgasm. At 4 weeks I allowed myself to continue to orgasm. The orgasm was surprisingly satisfying except for the initial urine leakage upon orgasm. I have no penile shrinkage that I can detect. Everything looks exactly the same in that respect. Since then I have experimented with Levitra. I am potent without it but 10mg Levitra takes my erections up to pre surgery level and 20mg actually creates a better erection than before surgery, and they were good then..!!! At 2 months after surgery I had no more urine leakage upon orgasm and what’s even better is with enough foreplay I can ejaculate “pre ejaculate fluid” in quantities that simulate a small ejaculation. Its as if my cowpers gland is trying to make up for the loss of fluid!!

 

Symptoms before surgery

 

1. Rectal pain .

2. Increased rectal pain after bowel movements.

3. Increased rectal pain upon sitting along with occasional urethral burn.

4. Increased pain for days after sexual intercourse.

5. Left intermittent testicle pain with a varicocele, not severe.

6. Constipation with the feeling of an obstruction in the rectum.

7. Yellow semen.

8. Constant fatigue.

9. Depression.

10. A grey looking complexion.

11. Social Isolation. (Afraid to arrange things in case of having to cancel)

12. Weight gain and memory and speech impairment due to Lyrica (Pregablin).

 

Symptoms at only 2 and a half months post surgery

 

1. A dull minor rectal ache after intercourse for about a day-paracetamol effective.

2. Minor urine leakage (a few drops) if coughing or sneezing or going for a long walk with a full bladder in the afternoon. Mornings OK. I don’t need pads at home while relaxing but if going out I wear one (light rated) for confidence. 2 pairs of briefs would probably suffice for avoiding any embarrassment.(slowly improving)

3. A small reduction in erectile firmness if no pills are used beforehand.(slowly improving)

4. No more semen-everyone will get this one...!!!! I was practically infertile anyway from prostatitis so not much of a loss there. My wife prefers it, less mess from pre ejaculate.

What is interesting to note is that my varicocele in the left side of my scrotum has shrunk noticeably since the surgery and the left testicle pain has also gone. I was thinking about surgery for this too but not any more. I am off all antidepressants and Lyrica medication. I only take paracetamol or Ibuprofen if needed for the minor dull ache after intercourse. I now have sex every couple of days after the surgery compared to every couple of weeks beforehand. It was just too painful before.

 

Everybody I met after the surgery commented on how well I looked and that my face seemed more colourful. I have lost 7kg so far since stopping the Lyrica. I am able to wear all my old jeans again..!! The only problem is now I have a load of baggy trousers I bought since becoming ill. I am no longer afraid to plan things, or go somewhere where I may have to sit down for prolonged periods.

 

I am so far very happy with my progress and I feel confident if this is where I am at only 2 and a half months of surgery, by the well known 18 month to 2 year mark I will probably not even bother with pills or pads at all by then. Even in the unlikely scenario I don’t get any further improvement, I am still far better off now than where I was before the surgery. There was no cancer found in my prostate but now I don’t have to worry about that happening in the future either.

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Update(@ 3 & a half months post surgery)

 

Pads no longer required.

Further noticeable improvement with UNAIDED erections.

Orgasms now last longer than before surgery.

 

 

 

 

 

 

 

 

[Les Stewart]

Hi Nick, This is a very good Story - I have certainly found some similarities to what I had to go through with my Prostatitis - I will also write a Story of my experience similar to that of yours - I'm just trying to find the right time to start writing.

We have had Fatal Earthquakes in this City and now a Blizzard as I write this – the second one is just 3 weeks - 2011 is going one of those years.

I think you have made the right choice without a doubt - I'm also very happy so far with my surgery now 21 months ago - It is for me slow but improving every day  - No more burning and Pains - Incontinence is on the Improve and now erections are slowly returning.

I'm pleased that everything is working out for you and confident your recovery will be all good - I'm looking forward to sharing my experience with others about my Prostatitis surgery soon too.

PS: Congratulations on the birth of your twin girls – We too had to go through the IVF and were successful on having a daughter now just turned 8 years.

 

Take it easy and will be in touch

Les Stewart

[Nik]

Thanks Les. I hope the weather improves in NZ soon! Im glad you are happy with your outcome and I hope you have further improvements soon. I have heard of men reporting improvements in erections up to 3 years after surgery in some cases. I look forward to reading about your experience when you get around to it. Was your IVF due to prostatitis infertility or other reasons? Infertility caused by prostatitis is often overlooked by urologists. Before actually doing any fertility tests I had 2 urologists tell me prostatitis should not make any difference to fertility. Fertility testing for prostatitis patients could be another valuable clue as to where the problem is coming from and if the prostate is involved.

 

Take Care

[Jon]

Nik, I hope things go well for you. So far, you seem to have made speedy progress. I think to be where you are now after only a couple of months is remarkable. You have been an important member of this forum. I hope you'll continue to check in with your experiences even if you're feeling 100%, as you have a lot to offer guys who are still on the road to better health. (Although I'd understand if you never want to see or hear the word 'prostatitis' again!)

[Nik]

Thanks Jon. Im not planning on going anywhere for a while.! This was really going to be my 3 month post but as I was feeling so well I decided to do it a couple of weeks early. I will probably do an update at around 6 months and a year too. I recieve email alerts for this post so if anyone is thinking of this surgery wants to ask any questions I will do my best to respond as soon as I get the time. Something that is getting scarce looking after my babies...!!!

[Arnon Krongrad, MD]

Good idea. Here are a few other members who were treated with laparoscopic surgery.

David Radford
Jeremy

Gerry Nishikawa
Nick Muff, MD
Charles
Jonathan Lynch
Rich Ellenberger
Robert Patterson
Les Stewart

 

 A few have posted video reports, too.

[adrian]

  Thank you very much Nik for you post. I am 100% sure you will fully improve your function  very soon.   I am remember how bad you were last year when I spoke with you !!    You are my mentor now !!!!! That because I spoke with you on the past, and I know you are " real" , not virtual :))  !

[Nik]

Hi Adrian-I finally plucked up the courage. Definately worth it!!! I hope your symptoms are manageable at the moment.

[Yongyuan Wang]

Hello Nik. Did you do a TRUS before the formation of calcifications? If you did, was there any thing abnormal with your prostate?

Did you also suffer from frequent urination, burning urination,  and the sensation of not emptying the bladder completely prior to surgery? If you did, was the surgery able to fix these problems?

[Nik]

No TRUS before. All calcifications found when already developed. No abnormal shape. I had frequent urination on and off, not all the time. My urethra also burned occasionally, especially when sitting too long. No signs of this since surgery.

[Arnon Krongrad, MD]

Calcifications are very commonly seen on trans-rectal ultrasound of patients going for biopsy, which has to do with suspicion of possible prostate cancer. These patients are not symptomatic. So it would appear that calcification is a nonspecific, nondiagnostic ultrasound finding.