Trying to decide on HOLEP, not 100% sure I need an operation

Men's health
1

Hello everyone, I have been diagnosed with BPH about 3 months ago and still wearing a catherter since that time waiting for an HOLEP operation. I have tried CIC and failed, actually passed out in the nurse washroom fell on the concrete floor bangging my head and noze pretty bad. 

I'm not even sure I need an operation, it all started 3 months ago when I felt ill, went to the ER and had my creatine level at 230, at first they didn't know why, then they did a bladder scan and had about 800ml of urine after void, I never had problem urinating, the flow was normal but I was going often and couldn't hold it in longer. After also an echo of the prostate, they told me it was very large and needed an operation. They prescribed me Flowmax (tamsulosin) but it did not do much. 

I don't understand why they did not prescribe me the combo med, Flowmax is considered a a1 Alpha-blocker (helps relax the muscle around the urethra) and another popular drug a 5 alpha reductase inhibitor like Avadart (a dutasteride) that shrinks the prostate, there is also another drug called bethanechol chloride for detrusor muscle contraction for urinary retention, not sure if some of you men are aware of these drugs or tried it as a combo. It seems to me that urologist just wants to operate, they signed me up and make me wait but in the mean time we did not try these things. 

In any case, this coming Monday, I'm going again for another prostate echo and tuesday I have another appointment with a second urologist for green light surgery.

Another thing I wanted to ask your men of BPH suffering, have you tried CTM ( chinese traditional medicine for BPH) according to them, they say that Urologist in our countries dont' understand the prostate and just want to destroy it, apparently they say that the prostate is calcinated and need to remove the heat and restore normal blood flow to shrink the prostate naturally, even ncbi gov sites did some research, herbs such as: Rou Gui (Cortex Cinnamomi) Huang Qi (Radix Astragali) and Chuan Shan Jia (Manis pentadactyla L.) (41.9%), Shu Di Huang (Radix Rehmanniae Perparata) (38.7%), Shan Zhu Yu (Fructus Corni) and Fu Ling (Poria) (32.3%), E Shu (Rhizoma Curcumae), Huang Bo (Cortex Phellodendri), Ze Xie (Rhizoma Alismatis) and Wang Bu Liu Xing (Semen Vaccariae) . Wondering if anyone ever tried these

I appreciate feedback from you all including my friends Ken and Jim

John 

2

Hey John.  How are you doing.  Have you tryed any of the chinese herbs yet.  I went to my urologist today and he ask me about you.  I told him about wnat happen to you when you got to see your doctor.  He does not like talking about another doctor.  But let me tell you he was not to happen.  I told him that you were going to see another doctor and will be considering a diffrent procedure.  He said that he wishes you the best and make sure the doctor help you without waiting 6 month's.  You were just saying maybe you don't need the surgery and you were just someone to put on his belt.  I hope this urologist can be trusted to do the right thing and not just operate just to operate.  If you had no problem before you went to see this doctor he may have done something wrong.  My doctor just put me on a new pill to help relax the bladder.  I'm not emptying all the way but he said it is not bad for my age.  I'm going to be going through alot of procedure for my heart and he just want to keep my bladder and kidney's in good shape.  Will start them Friday.  It's called Myrbetriq 25mg.  Please let me know how it goes and maybe he can try you on some of the diffrent bill and take that dame catheter out so you can have some fun.  Take care  Ken     

3

John,

Sorry to hear you are having these difficulties. You say you have been wearing a catheter for several months. There is a high probability of an infection with prolonged catheter use - I had to do this for 5 weeks, got used to it, but it can be tiresome. 

About the CIC: it can really help you, but you have to gradually learn to do it. The first time I tried it was impossible. I then studied all about CIC and the various catheters used, and sent for samples of hydrophilic catheters - self lubricating. I tried CIC again with one of these, and was successful. It gets easier each time you do it. 

There are many possible procedures that can help your BPH. The easiest, with fewest side effects, would be PAE, performed by an interventional radiologist, not a urologist. Second, would be Urolift - the prostate Is moved away from the bladder and urethra with implants - no cutting or destroying prostate tissue. Next would be Rezum - parts of the prostate are steamed and eventually die. Next would be laser ablation. Revolix (Thulium laser) is the best, followed by Greenlight. HOLEP (using the Holmium Laser) is extremely effective, but the prostate tissue is morcillated in the bladder, and that means it must be performed by experts, such as the Mayo Clinic. Then, there are other treatments - TURP being the most common. There are different types of TURP using either a cutting loop, or a plasma button that vaporizes and cauterizes the tissue - much better than the loop. Bipolar loop is better than monopolar loop. Anyway, you have a lot of research ahead of you. 

You can take the pills, like Flomax or Avodart (Finesteride/Proscar researches better), but there are side effects. Other drugs for overactive bladder - also have side effects. 

I don't know about the Chinese herbs - maybe they will work.

Before you make any decisions you need to know the size of your prostate and whether there is a median lobe protruding into the bladder. The HOLEP procedure is very effective dealing with enlarged median lobes. Urolift is working on a clinical trial involving the median lobe. Note, that HOLEP scoops out a lot of prostate tissue, so it is highly likely you will have retrograde ejaculation. This is not the case with Urolift. 

Back to my original point - once you know what you're dealing with consider the procedure that has the fewest side effects and can be performed close to where you live and is covered by your insurance. 

In the meantime, don't give up on the CIC - you can get used to it, but you will have to use a hydrophilic catheter. Most companies that sell/make them will send you free samples. Use the smallest one that will work - 14 fr (French) size might work. 12 fr is too small. 16 is "normal". The curved tip (coude tip) is painful for a first time user, but some like it. It didn't work for me and was what my urologist gave me for my first try. 

Tom

4

Hello John.  By all means try everything under the sun to avoid surgery in an attempt to relieve yourself of the symptoms of BPH but the longer those symptoms persist the greater the risk of developing long term issues.

I put up with my BPH for almost 10 years and refused surgery when offered and as a consequence almost wrecked my bladder. I tried all the meds and supplements available to resolve things but all to no avail.

Following a HoLEP procedure last November my bladder has finally returned to normal and I no longer have to put up with having bladder stones removed every couple of years and I've kissed goodbye to the regular doses of anti-biotics to rid myself of the recurring UTIs that were occuring due to constant urine contention.

Good luck.

 

5

John-T

Sorry about your problems,man.  Getting old ain't for wimps, huh?  A couple of VA doctors malpracticed on me 8 yrs ago and among numerous other things they fixed me so that i can't urinate but have to self cath.  And, i tell you man, the first time i tried to insert one of those foreign  objects into my body i got master caution lights and whistles and abort buzzers and be sure i did abort.  i didn't faint but i came close.  So, after 2 or 3 hours i tried again and may have aborted the second attempt also. (do know how i changed font style here)  but, after i got past the FOD, foreign object damage, i could empty my bladder completly with hardly any discomfort.  no more need to get up at night 2 or 3 times.  i don't take any drugs for the prostate-that's what ruinedme 8 years ago.  aand i don't want any operations at this point.  At 66 life could be better but it could sure be whole lots worse.  i guess what i';m saying, John, is you might give that self cathing idea another chance in a safer environment where your not likely to hurt yourself.  You might find that to be your healthier option.  i'm sure you'll sort it all out.

tom bob

 

6

Given your 800ml post void residual, your bladder is probably flaccid and stretched therefore lacking muscle tone. You mention that  your creatine level was 230. Have you been checked for hydronephrosis? This is water in the kidneys caused by urine relfluxing (backing up) because of an obstruction. It should show up on an ultrasound and if your doctor hasn't done this at this point then you are with the wrong doctor. 

Unlikely the drugs or herbs mentioned will help much given your unsuccessful trial with flomax and your very high post volume residual. Other than an operation, that pretty much leaves wearing a Foley or CIC to protect your kidneys. 

Have they taken the Foley out to see if you can urinate on your own now that your bladder has been rested? Depending on what operation you might have, pre-operative urodynamic testing after giving the bladder a rest with a Foley can help determine what kind of outcome you can expect from the operation. You mention you "failed" at CIC. If your bladder has been stretched beyond repair, it's possible you could end up with an operation AND have to perfom CIC for life a well. That is what pre-operative testing (urodynamics) will help tell you. 

You said you fainted during your first attempt at CIC. I almost fainted during my first attempt. To make a long story short, I have been performing CIC for over two years now and at this point it's about as natural (and painless) as brushing my teeth. There are lots of things in life that can make you faint or squeemish in the beginning, but with a little bit of perseverance your body and mind will adjust remarkably.

I mention this because again you might have no choice but to CIC even after your operation, so why not learn to do it before? It not only will probably resolve your kidney issue but will buy you time to figure out the best operation or way to proceed forward. Wearing a Foley for so long cannot be fun. 

Lastly, you say that you're not even sure you need an operation. Best advice is to make sure you are by getting second and third opinions if necessary and by doing independent research including discussion groups like this. It sounds you are putting a lot of energy into the alternative medicine/herbal route. It would not be my choice right now given your situation. 

Whatever you do, your kidneys must be monitored now on a regular basis to make sure you do not do permanent harm. That means periodic creatine testing as well as periodic ultasounds to check for hydronephrosis. The elevated creatine is most probably related to your high PVR, but there could also be other causes. Hopefully your doctor has therefore run other diagnostic tests to rule them out. 

Jim

 

7

John..... I’ve been following this blog for about 5 months and have heard a lot about cathing, drugs, and the various BPH procedures.  Bottom line:  drugs may work for a while; for me it was about 2 years.  I did the research on all the procedures (except PAE.   Had not heard of it), and chose HoLEP.  It is the best surgical procedure because; 1) less time in the hospital and a on catheter (less than 24 hours), 2) less bleeding, 3) very small chance of needing a repeat procedure, and 4) they remove prostate tissue (instead of burning it), so they can biopsy it for cancer.  You do need to find an experienced doc to do this.  I too was retaining close to 800ml, and my prostate was 85 grams.  After it was 46 grams.  I had my surgery in January, and now have no problems at all.  Best of luck!

8

Hi Jim

How are you doing, thanks for your great advice, yes you are right a lot of test haven't been done, what I had so far was an echo of the prostate (getting a second one this coming Monday), bladder scan for retention, cystoscopy, blood test, urine test. I will try to talk to my urologist when I go for the echo, I also have another apointment Tuesday with a different urologist a Green Light expert. I will try to get some answers and ask for more test like you said about the hydronephrosis possibility. I understand what you say about CIC and I try to mind myself to do it and that it's ok, I guess I'm just freaked looking at the size of these cath over a foot long going inside my penis. You're right it is a long time wearing a cath for 3 months, I have a valve installed so at least my bladder get to do some work, I will see about removing it either Monday or Tuesday and see how my body will react. I will know more just with the echo for the prostate to see if the prostate is just as big or shrunk with rest and diet change and some herbs. 

I'll keep you posted

Hope you are doing well 

I really appreciate your advises 

John

9

Hi Tom

Great to hear your feedback on my post, yes you're right about CIC, I just need to get my brain to accept that it's ok, it seems that I have a mental block about it and freak when I see the length of these things going in. I'm not confortable with the operation because I'm not sure it will cure my problem. 

In any case I'll keep you posted, I'm booked for an echo of the prostate on Monday, I'll know more if my prostate is still huge or shrunk a little with the rest, natural herbs and diet. 

I'll hope for the best

thanks again

John

 

10

Thanks for your great feedback Rog, not sure if it's Roger 

I know I'm in good hands with the HOLEP urologist since he's a pro at it and is also teaching young doctors the HOLEP method, I just have some fears about the bleeding, the retro and who knows about sexual functions after the operation, erection, etc. 

Got another echo for the prostate on Monday, I'll have more idea on the size of my prostate. 

I'll keep you posted

thanks again

John

11

Hi Tom nice to hear back from you, hope all is well with you

I know wearing a catheter for so long brings more problems but for now I have no choice, I'm trying to mind myself to try CIC again, it seems that my brain won't accept it, not sure what it is I guess just looking at the lenght of these succers gives me the creep. I'll start by ordering some self-cath samples and see, hydrophillic coloplast speedy cath, are those the best one to start. I guess 14 fr is a good size to start with, I have a 16 fr cath now. 

I know that HOLEP is a great choice for me, I have some worries about bleeding, retro, erections, etc. 

In any case I have my echo on Monday to see the size of the prostate so I'll know more and will keep you posted.

Thanks again

John

12

Hi Ken, great to hear from you, thanks for your kind message.

Thank you also for talking about my case to your urologist, I will try to see my urologist to ask him about medication when I go for my echo on Monday, I'll have a better idea on the size of my prostate, I also have another appointment with another urologist on Tuesday this one is a green light expert so I'll see what he says, they both have info of what was done from the very first urologist who wanted to do a TURP on me, so really the one from HOLEP and Green Light have only data from the first TURP urologist so they haven't really did any more testing so I'm preparing some questions for both of them, if you can think of some question that I can ask them, I'd appreciate your feedback on that too. Myrbetriq sounds like a good medication according to Urology Times. 

I'll keep you posted and sure hope you are doing ok with your heart issues. 

Take care and enjoy your weekend

John

13

Sorry I forget to tell you about he chinese herbs, I'm trying KAI KIT WAN you can type it on Google, here are more info:

INGREDIENTS: Vaccaria Seqetalis, Paeonia Suffruticosa, Paeonia Veitchii lynch, Astragalus membranaceus, Patrinia Villoea juss, Peucedanum praeruptorum, Glycyrrhiza Glabra L., Saussurea lappa clarke, Akebia trifoliata 

FUNCTIONS: Conditioning Prostate Gland functions, promoting glands activities, helping the recycle of blood and stop pains and inflammation. 

Just starting on it today so I'll keep you posted

John

14

John are you UK or US based?

15

Before I had my PAE at St. Louis University hospital last July, a urologist put me on myrbetriq. She gave me a month for free, and I bought a month.  That was more than enough! My blood pressure shot up, and I got no change in nocturia. It is an expensive drug, and useless, at least for me!  The PAE was partially successful, as the IR was only able to fully treat the right side, but my condition did improve in a significant way.

16

Hi Rog  I live in Canada in Montreal

17

Hi John.  You mentioned that your man trained up other surgeons in the HoLEP procedure and thought that it may be one and the same person however not the case.  My uro surgeon trained in NZ with the developers of the HoLEP procedure and is now at Addenbrookes Hosp near Cambridge, UK and has been training others from around the globe in its use for over a decade.  

18

Hi Rog

Ok sounds like he knows what he`s doing, my Urologist name is Dr. Elhilali, he`s 80 years old and the only one doing HOLEP in the whole province of Quebec (scarry when you thinking about the operation, I mean 80 years old is not young), I think there are only a couple of experts in Canada. So for me it`s either him or a green light expert dr. Zorn well known also. 

19

Hi John. If he can keep awake for an hour you will be fine.  Only kidding, I'm sure all will be OK if and when you have the procedure.  One point I would make is if you are happy to have a spinal block anaesthetic rather than a GA, go for it.  I've had 4 procedures in total on the prostate and bladder, all with a spinal block and recovery has been swift and trouble free.  One point to remember is don't let the nurse remove the temporary catheter that they insert for a few hours, until all sensation is back in your legs and lower trunk.  If they take it out too early you will not feel yourself peeing (your bladder will still be affected by the anaesthesia) and the first you will know about it is when the pee begins to cool around your backside where it will have collected on the sheets. A learning curve for the nurse in question and she had to change the sheets.  Of course if you have a GA you will remain continent but dozy for a couple of hours. I prefer to keep awake, talk to the operating crew and have a few laughs on the way.

20

Hi Rog, yes let`s hope he doesn't decide to go for a nap during the operation, all kidding aside for the anaesthetic it all depends how I feel on that day, I guess spinal block is like epidural for a women when she gives birth, ouch we'll see GA could be a better choice for me if I'm too anxious. 

In any case I still have time to decide, let's just see how it will go Monday and Tuesday.