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 Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.

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njclifford



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Join date : 2016-07-07

PostSubject: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Thu Jul 07, 2016 6:46 am

Sorry for the long post:

All I want is the following
1. To be able to sit through a movie with my kids
2. To be able to run and play with my kids

For over 10 years I have had a condition no one seems to know how to fix. People used to think I was obsessed with toilets, but around 10 yrs ago I had a cystoscopy and was told I have an ‘interesting bladder.’ Since then I have had numerous scopes, hydrodistention which ruptured my bladder, and other tests. Specific issues such as IC are thrown around in conversation, also with the uncertainty on how to treat it.

I am a 42 yo Male with 3 young kids that I cannot play with. The referred pain is in the tip of my old fella, and sometimes I can barely walk. And I mean serious pain. I use heat packs, baths, rest, elevation, it is like a dagger is being pushed in the tip… not nice (sorry for the description… but it SHOULD make you squirm). Other times, I shuffle like I have arthritis, maybe 60% I can walk (but with pain, not being able to run if needed) and maybe 5% of the time I can walk, run, play with no pain. I cannot go to the park on a whim and throw a Frisbee with the kids… too much pain.

I also have a bladder that does not expand like a balloon… because of this I am at the toilet every 30 – 45 minutes. Work understands, sleep is disastrous – up 6 times a night. It has got worse in the last 3 years (used to be able to hold for 90 minutes), personally I think it is due to weight gain (around 8kg) and I am trying to lose that!!

I am currently on Lyrica 75mg morning, 150 mg night and Tramadol 100mg SR in the mornings. On bad days, I have taken 2 or 3 Tramadol…. Once even more. Have been on a wide range also - Endep, Vesicare and others.

I have seen numerous physios, doctors, urologists, neurosurgeons and pain specialists and none seem to know the best way to fix this. One urologist says he won’t take me on, as he only likes cases he knows how to fix….. all I want is no pain, toilet every 2 hours.

Now, I have been told there are a few paths I can take:
1. A neurostimulator implant in my hip that is linked to a few vertebrae on the spine. This would control the pain and the urgency… but is a new technique
2. Apparently the entrance to the urethral shaft is narrower than normal, so Botox has been suggested
3. Worse case scenario is a bladder reconstruction, but I have been steered away from all specialists on this one.

I was in Perth for 3 years with numerous urologists, numerous scopes, and none recommended this place.... and they are just down the road from where I was..... AAAHHHHHHH

I am reaching out to you all for help… I am desperate and want this fixed. It has been TOO long and my kids are growing up… I want to do it for them.

Please can someone help me….

Thanks.
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Tina2



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Join date : 2016-02-15
Location : Queensland Australia

PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Fri Jul 22, 2016 10:20 am

Hi njclifford, welcome ! Here you will find wonderful people who actually understand what you are going through. I cant offer you an answer, but I would suggest you think long and hard about Botox. I have heard awful things about it, like it turns makes your bladder so firm you need to self catheter for at least the first 3 weeks, and it can also cause you to loose bowel control.

Ozone therapy might be worth looking at .
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njclifford



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PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Fri Jul 22, 2016 10:59 am

Thanks - I have heard good and bad stories of Botox and due to a cystoscopy I had that went wrong I am not able to self cathaterise and hence would steer away from Botox.

I am trying to lose weight first, but then will try the neuromodulator. You are in QLD also - I am in Brisbane but need contacts for a good urologist. I have seen a few already, but none really know about the issue nor are happy to take my case on as they like things they can fix!!!

Thanks

Nick
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Tina2



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PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Fri Jul 22, 2016 11:21 am

Hi Nick

We are only recently back from living in Victoria, cant recommend a Uro in Brisbane sorry. A Long time ago I saw a Uro at the wesley and she was brillient. Might be worth looking at what Uro's are at the Wesley these days.

Sorry to hear about the Cystoscopy going wrong. I had one 3 years ago and they did a Hydrostention with out my approval, now my freqency is cronic, find it hard to trust doctors now.

Let us all know if you find a good Uro and how you go. Hope someone can help you
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IC Queen



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Join date : 2016-04-13

PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Sat Jul 23, 2016 8:46 pm

Nick,
I live in the USA now, where we have had a great organization since the mid 80's. It is the Interstitial Cystitis Association and it was responsible for getting all the research going through the NIH, etc. etc. Since the early days there has been a men's with IC list. You should request it and speak to a number of men to find out what things helped and harmed them.

Personally I have had IC for over 40 years and have met many men in state and country wide meetings of those with IC. I immediately recognized the walk you described and that is why I had to write to you. You sound like the guys who had the worst cases among those I met. A urologist at Bowman Grey Medical School, Dr. Robert Evans, always gave a talk at the national mtgs for men with IC. I am betting he would ring you back if you left a message for him. Ask him who to see in your area and what he thinks about that 1-3 list you wrote. I use oxycodone and hydrocodone myself and they deal with the pain to a varying degree. I have been taking them 16 years now. In the first decade I was in heaven comparatively. Wouldn't waste my time on those other things doctors like to give instead of "real" pain meds. All this is my opinion, you know. I am just another suffering person like yourself.

There is a semi famous man who speaks to other men with IC. He is on the list. I spoke to him and he said the only thing that helps him is Amitriptiline. I hope I spelled that right.

Oh, and I have been told by many experts I have met at IC national meetings to avoid 1-3 you mentioned. Let me know if you want to chat personally and I will figure out how to do that.

Please hang in there. Call Dr. Evans. The medical school where he is now is in Winston Salem, NC. They have even made an artificial bladder there I hear...so a very good dept. And Dr. Evans sees pts from around the world. I know because over the long years I have had IC I have spoken to many of them. Many men from other states see him. I do know he has answered phone calls from desperate people, including myself a few years ago.

I am so pulling for you. Been there!
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IC Queen



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PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Sat Jul 23, 2016 8:50 pm

This is the ICA....http://www.ichelp.org
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dantheman



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Location : Adelaide

PostSubject: When does it end.   Tue Jul 26, 2016 9:46 am

After writing the reply below I had a bit more of a think about your choices and whilest it's a very personal choice I think you have nothing to lose with trailing the interstim. It's totally reversible and highly unlikely to cause any worse problems., what's more it seems to be highly successful with people with OAB. I mention more about it in my rep,y below. A little more cautious with Botox because it can cause complete retention until it wears off. As far as reconstruction goes, what is wrong with you bladder that can be reconstructed and fixed. If there is a definite anatomical cause for your pain then reconstruction isn't that silly.

Hi Nick, i like you are a 43 yo male living in Adelaide with ic bladder pain. I have 3 kids and a very supportive wife. I probably had symptoms for up to 10 years but managed to get around things until about a year ago when things got so bad. Your story had me in tears. I miss my children, my wife my business and my life.  I no longer work from all the pain. No one really understand how bad this disease is not only do we have pain but in the bladder which forces us to look for toilets all the time. It's scary knowing that no one can help because they don't know what's happening. I have tried all the drugs most of which gave me retention worse than i already have on top of my anxiety. I have tried botox and luckily i didn't have to self cath. Botox is good in the bladder neck to ķeep it open so it makes it easier to wee and is also good for O A B but it's really a personal choice i guess you have to try it for your self. It didnt work for me. currently have 2 interstims implanted one on reach side of my spine.  I'm ending the trial period this Thursday but ynfortunayely it hasn't worked either. If you get interstim ask for 2 to be installed because each nerve in the sacral spine might be responsible for the dysfunction.  There are up to 6 different spots that the implant can go but urologists only ever put it into 1 spot which is the most likely spot.  I had 1 installed by medicare and the other installed by my private health insurance.  It is called neuro modulation for function and neuro stimulation for pain. Both work on different frequencies. Any way if your going to have an operation then go for both at once. It works best for peoplev with OAB and is really worth a go. Didn't work for me but i hope it works for you. I also have pain in my old fellow and the pain gives me a semi erection which completes my dysfunction.  Things just seem to get worse as the years go by.  I truely belive there is an answer out there but it involves the nervous system and nerves in the bladder. The bladder is as complicated as the brain and there's only so much that can be done to fix it. A new generation of nerve pain medication is on the horizon to stop the inflamation. I honestly don't know that my wife and kids are enough reason to keep living through this night mare. I have no quality of life any more and as each treatment fails it makes me feel even more despondent. But as i see every one is different and every one responds differently to this disease. Even similar stories are wildly different. I have started taking LDN low dose naltrexone. It had helped the pain in my legs and hips but hasn't really helped function.is the only drug which has had minimal side effects and any relief of pain.  Low dose naltrexone can be compounded at a compounding pharmacy and i got mine through my pain specialist after i asked for it.  Do a Google search for LDN and bladder pain.  Some people have had great results and others none. Won't know until you try it.  Apparently it works best of your condition has an auto immune component which some IC has. I belike that my bladder problems were triggered from a virus or series of viruses about 20 years ago affecting the nerves in my bladder. The only real treatment will be stem cell therapy to rebuild the bladder.  Good luck with your journey. I would be happy to do a PRIVATE MESSAGE if you want but i don't think I'm good for boosting morale.  I can let you know what i have learnt about botox, interstim and the other drugs i have tried


Last edited by dantheman on Tue Jul 26, 2016 12:07 pm; edited 1 time in total (Reason for editing : Needed to add something)
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Tina2



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PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Tue Jul 26, 2016 11:09 am

Hi Dan, you sound very down and that worries me. This is such an awful disease, and people do wonder if it is worth going on. Please hang in there, its hard I know that. Life changes so much when you get IC OAB, everything revolves around managing the pain and where the toilets are. I find even going out in the car now a drama, just the movement of the car causes pain I guess as the urine moves around. How can that average person ever understand that.
Just know that those of us on this forum understand how you feel and what ever little support we can give we are happy to do that.

Dan, Can I ask more details on "A new generation of nerve pain medication is on the horizon to stop the inflamation." do you have a name or any more details ? Sounds positive, I am sure inflamation has a huge amount to do with what is going on in the bladder.

Chin up mate
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Tina2



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PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Tue Jul 26, 2016 11:15 am

Sorry Dan, what dose of LDN are you taking ? do you know what fillers are being used ? Many thanks
T
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dantheman



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PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Tue Jul 26, 2016 11:55 am

Yep you are right I'm really low at the moment. I grew up and lead my life as a free spirit and now I'm caged up looking for toilets in pain 24/7. Im not sure I'm here for the long haul, but any way, there are dozens of websites referencing pain research,

http://www.painresearchforum.org/news/archive/drug-development

This one has a list of current drugs and trials being used for different types of pain, but I think that the developers of these techniques and drugs have never heard of bladder pain.

I use 4.5 mg of LDN I started at 1mg for a week and worked my way up. You can ask your compounding pharmacist to make the pills with any filler you want or even in liquid form. They know that fillers can be a problem for people.
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Tina2



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PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Tue Jul 26, 2016 12:34 pm

Thanks Dan, Yes can tell you are down and if its any help I know how you feel and most if not all on here understand only to well how you can have days when you wonder why am I here.
I had a great job and money to go with it, all gone now, I have so many pills and creams that cost big money that dont work I could start a pharmacy .
Was coping till that B----- of a Uro did the Hydrostention with out my approval all been down hill since then, but we cant give in. I wont let this disease beat me, surely to God there must be something in the pipeline to help us if not fix it.
I hope the LDN is a turning point for you and you will start to see the light at the end of the tunnel.
T
Starting to think of a Go Fund Me Page to help the Prof buy the equipment he needs
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Tina2



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PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Wed Jul 27, 2016 6:59 am

Morning Dan, been looking at side effects for LDN and depression and a feeling of being low is a side effect. We all seem to react to so many medications talk to your doctor about how you are feeling, you might need to lower the dose you are taking. Thinking of you, this is such a B----- of an disease T.
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njclifford



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PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Fri Jul 29, 2016 8:13 am

Hey been offline for a while and just seen all these responses!!

I am currently on Lyrica and Tramadol. I have tried a number of drugs, and these seem ok - I still get pain sometimes that Tramadol doesn't fix.... sometimes I think placebo, but when I dont take it I know about it.

There is also a physio in Subiaco who has studied bladder issues and was very good with stretching.

For me, I have a physiological issue with my bladder also - it is scarred and cannot expand like a balloon like most bladders. So a double whammy.

I also saw a pain neurosurgeon ($325 for 15min) and he is very pro the neuro modulator. He mentioned two areas he connects to - one for pain and one for frequency.

I also think weight loss may help my problems, as got worse when I put on weight.... am not overweight (6ft, 85kg), but think a little weight loss may help. Have started swimming at Valley Pool and running on treadmill near toilet..... stopping every 15min or so but still getting a good run in.

Next step for me is to see a uro her in Brisbane and investigate the neuromodulator.....anyone here with success using this??

Thanks

Nick.
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dantheman



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PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Fri Jul 29, 2016 8:59 am

Had mine taken out yesterday. One for pain one for frequency. Neither worked. Had it put into s3 both sides. Good to know where your surgeon wants to put it. At which point on the spine does he want to put it. I'd definately try again if other spots are better
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njclifford



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PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Wed Sep 21, 2016 7:48 am

Update.

I have found an excellent Uro in Brisbane who is one of the leading people for neuro-modulators. From my last cystoscopy done in Perth, the uro there noticed blockage at the entrance to the urethra from the bladder, and the first step he is doing is to snip two small incisions on the muscles causing the blockage.

The aim is to relax the muscles, and eventually after time reduced the pain and urgency.

From here the next step is the neuro-mod, but he is wanting to try this first....

Yet to book it (see him again on the 28/9), but am VERY VERY excited knowing there could be a light at the end of the tunnel!!!

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njclifford



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PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Fri Sep 30, 2016 10:23 am

Update - I have seen him again, and with the bladder diary, blockage to the urethra and the test has confirmed I have OAB and IC.
In one 24 hour period I went 10 times from a 12:00am - 6:00am period!!! normally around 30x a day.

As a first step, he has prescribed Elmiron and Betmiga. This now means I will be on:
Tramadol 150mg SR 1x a day
Lyrica 75mg 2x morning and 1x night
Elmiron 100mg 3x a day
Betmiga 50mg SR 1x a day

This is the process for 2 months and then will see him again. If not better, will look at the neuro modulator.

What are peoples thoughts on this? Sounds like a lot of pills....
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njclifford



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PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Thu Nov 03, 2016 9:42 am

Greetings all,

quick update - the Elmiron and Betmiga has not really changed my frequency or pain. I am also now seeing a physio, counsellor and am starting on a Pain specialist tomorrow.

Quick one - has anyone been successful with using natural remedies, homeopathic stuff or things like acupuncture??

Am looking down all avenues before going in to have the tube widened in my urethra...

Thanks

Nick.
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Tina2



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PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Thu Nov 03, 2016 10:21 am

njclifford dont know if this will be of any help but I am taking CoQ10, 150g 1 tablet a day my acupuncturist put me on to it as it improves circulation, and poor circulation causes inflamation, in the bladder.
I am also taking Magnesium Plus made by Living Healthy, from Terry White Chemist, 4 tablets a day and have seen a lot of improvment in frequency and pressure pain. Just be careful when buying magnesium, some have Vit B in them dont go near them it flares IC , also look more for magnesium with Malate or Chelate as Magnesium heavy in Oxide can give you the runs. You must take them with food as they need fat to help the body absorb the magnesium. Been on them a month now and starting to see real improvement - BUT we are all different and what works for one person my not work for someone else.
I also take DMannose every day, buy that from IHerb in the US cheap and it basically works on flushing any ecoli out of the bladder, ecoli is really hard to get rid of but many people with IC find DMannose a great help.
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Tina2



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PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Thu Nov 03, 2016 10:26 am

Oh forgot the reason for magnesium is it works on spasums and cramps and that is ( so my accupuncturist told me) is alot of the problem, the bladder is over active and cramps and spasums, making you feel like you need to go when you dont really need to go.
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njclifford



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PostSubject: Re: Male 42yo with IC/BPS for over 10 years, extreme pain and 20+ toilets visits a day.   Mon Nov 07, 2016 1:39 pm

An update from the OP - have seen a pain specialist and she did some external tests and I have nerve damage in my old fella - the pudendal nerve apparently is damaged cause hyper sensitivity and pain.

Am now weaning off the Lyrica, and going on Duloxetine. She also wants me to drop back the Tramadol and get MRI of the pelvic area...

Still have the frequency and pain - I've had my kids so am happy for them to take it all out!! hahaa... no doubt I would get phantom limb syndrome then!!!

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