Botox - please help Hel from England

[Hel]

Hi all,

Hello from the UK. I would really appreciate some help from you guys. Botox is still fairly new in the UK, so it has been really hard to get any info.

I had botox into my bladder before xmas (dosage was 300) to try to decrease the frequency I have with my IC. It went horribly wrong and within 7 days, I went into full blown retention. I have terrible bladder and now urethral pain (didn't have that before Botox) and spasms. I couldn't self cath due to the urethral problems so had to have a supra pubic catheter fitted.

It has now been nearly five months, and I still can't pass a drop of wee normally. I am so scared that this will not wear off. I never had any retention before this.

Have any of you guys experienced this problem ?. Is it completely reversible ?How long does it take to wear off and does it wear off gradually ?

You just don't know how much I would appreciate your help.


Hel x

[CinSin]

Hi Hel x,

I had 200 units in the bladder the first time and had a really hard time with retention. So I have only used 100 units since.

Botox last about 8 months in my bladder, it wears off gradually. It wears off much sooner in the pelvic floor and urethra with me.

Sorry that you are having such a difficult time,

Cindy

[Hel]

Hi Cindy,

Thanks so much for your reply. I am glad that you have found that Botox has helped you. So from what you are saying the retention does wear off, that makes me feel a whole lot better.

Hope you are having a good bladder day.

With love and best wishes from Hel x

[colin]

Hello Hel

We are in the UK too. Norwich. My daughter is 15 and had botox in the bladder 3 weeks ago and has gone into full retention. she is having bladder spasms and urethral pain worse than ever. She is also constipated. I think her pelvic floor is gone into spasm which is causing the problems. Where did you have your botox done? we were told retention was about a 1 in 15 risk but I am struggling to find anyone who hasn't had a retention problem following the treatment.

She is self catheterising but this is very painful. The botox was only put into the bladder - a similar dose to you. I'm sorry you are having so much pain - my daughter is suffering too. It sounds very similar to your case. Have you been taking any drugs to relieve the spasms?

My daughter has been taking Tramadol for pain, detrusitol for spasms and diclofenic for inflammation and pain. with not very much effect. I want to get her some physio for the Pelvic floor problems.

Have you found it hard getting anyone to take your pain seriously and investigate what is really going on? Is your Urologist any good?

I'm sorry I can't offer any help I'm looking for answers too. It's so horrible seeing someone you love suffer so much.

Best wishes

Colin

[Hel]

Hi Colin,

I am so sorry to hear about your daughter. It has upset me that someone so young is suffering so much. It has been pretty bad for me, and I am in my thirties!.

It sounds as if we are both in the same boat. I went into retention within seven days, and like you was told beforehand that it was highly unlikely that this would happen. I know of at least one other lady who has full blown retention after Botox and two other ladies who have part retention, in that they can empty their bladders, but it takes ages.Initially, I was fitted with an indwelling catheter for 8 weeks which didn't help with the bladder and urethral spasms, but at least meant that I had a decent nights sleep. The consultant then arranged for me to start to self catheterise. I tried this for several periods but couldn't get on with it. It was very painful and because my urethra was in spasm all the time, the catheter continually got stuck as my bladder wouldn't release it. I also had one infection after another. The consultant then decided to take me back into hospital and fit a supra pubic catheter. This comes out of my lower abdomen and is fitted with a valve which I open when I need to go to the loo. This might be a better option for your daughter if the self catheterisation is hurting her so much. I have definitely found this system to be the best yet.

The consultant has told me that the retention will not wear off for 9 months. I posted a message on this website as our American friends are more clued up about Botox than in the UK.

I took Oxybutynin for the spasms (similar to Detrusitol) which was prescribed by my GP. The consultant took me off this because it can make retention worse. Instead, he gave me Alfuzosin which is normally only prescribed to fellas with prostate problems. It has been brilliant and I have seen a 60% reduction in the level of spasms and pain. I also take Tramadol and since starting the Alfuzosin have managed to reduce the Tramadol by two thirds. My GP has also prescribed me Amitriptyline which is a low dosage anti depressant. It is not used for depression these days, and is mainly used to relieve pain in a number of conditions including IC and Arthritis. I take 10mg at night and this calms my bladder down and helps me to sleep.

Your daughter should also watch out for urinary tract infections as when you are self catheterising you are more prone to it. A UTI will make all her problems worse.

The pain that has been caused by this Botox has been horrendous, but with the right combination of medication it can be improved, so please don't be disheartened. My GP badgered the Hospital continually in the early days as I was in a terrible state, and it was his persistence that made them take my problems more seriously.

I think that you should talk to your GP about this and see what pressure he/she can bring to bear. I don't know if you have had any contact with your local continence nurses but they are really helpful.

Good luck with it all.

Please let me know how she is doing.


With best wishes from Helen

[CinSin]

Hello Ladies,

I am so suprised to hear that you were told that retention was unlikely. The first thing my doctor told me was that retention was very likely for me.

When I had the urethra and pelvic floor injected I hardly had any retention at all.

Cindy

[Hel]

Hi Cindy,

That's interesting.........perhaps your doc is more honest ! Most of the people over here who I have spoken to have been told the same thing.

From reading these boards, it seems that 100 - 200 is the usual dose, and I had 300.

Hope you are having a good day


Helen

[CinSin]

Hi Helen,

Maybe it isn't a question of honesty, maybe my doc is a little more experienced with the use of botox. My doc is a researcher, and he researched botox for two years in Pittsburg and then came to Houston and he has been researching it for three years. The first time he used 200 with me and quickly learned it was too much for just the bladder, now he only injects 100 in the bladder. I find it much more beneficial in the urethra and pelvic floor.

Read as much as you can find on botox - do a search on it, try using Christopher Smith, Michael Chancellor and botox in the search bar. They have published many articles about it.

Cindy

[Hel]

Hi Cindy,

It's funny that you should mention Christopher Smith but when I was trying to find out about Botox, I discovered some articles written by him. I was quite impressed with his knowledge and understanding of bladder conditions. If only there were more like him. You have a good un there.

Thanks again




Helen

[Indy]

You might want to read my Botox posts in the archives.

I had 300 cc's too in my bladder 1 1/2 months ago. I had horrible retentionn but just forced the urine out by pushing and getting into weird positions.

I tried flomax but that didn't help.

The retention is slowly wearing off. I empty my bladder best while squatting in the shower.

My everyday pain is definatley less, though I had a flare last week from constipation.

Be careful not to take anything that causes constipation and drink lots of water. I found that I needed to let my bladder fill with lots of water before I could generate the force necessary to empty it.

I'm still deciding whether or not I would repeat this-I would definately ask for less than 300 cc's.

[Hel]

Hi Indy,

I am so glad that your botox is slowly wearing off. You are doing well to be getting this result after such a short time. Have you had any problems with repeated UTI's. I have had one after another.

I will try drinking more water to keep my bladder full, at least in that way I will be able to see if any pee can escape down my urethra.

I have come to the conclusion that 300 is too much. To be honest, I wouldn't have it done again as I have been terribly ill. I think that my doctor would flip if I told him that I was having it done again. I work in an office and haven't been well enough to work for 6 months, so I couldn't afford to take the risk.

Thanks for your tips Indy. I hope that with each day you continue to feel a little better.


Helen

[colin]

Thanks for your note Helen.

How long did you take the Alfuzosin before it started helping the spasms? I think this drug is an alfa blocker like Flomax that Indy tried- did you have any adverse reactions to this like dizziness? what sort of dose did you have?

Have you tried any physical therapy to relax the pelvic floor as others described?

We would be quite keen to try this especially if we could cut back on the Tramadol.

Katie's consultant said he put botox into the bladder not the urethra as he thought if it was in the urethra it would cause incontinence. Has anyone had this as a problem? People seem to be saying putting it into the urethra reduced retention problems.

I think you are right 300ml is too much for a bladder treatment.

Has anyone had retention with Botox but gone on to get a positive benefit? At the moment all it seems to have done is caused extra pain in the spasms and added to the pain in that the urgency is still there but nothing happens. how long have people suffered retention for after the treatment - it sounds unbelievable that Helen may suffer this for 9 months.

[Hel]

Hi Colin,

How is your daughter today ?

The Alfuzosin started working almost immediately for me. During the first two weeks of treatment, I did have some dizziness and my Doctors surgery kept an eye on my blood pressure. I do have lowish blood pressure anyway, which is why this was monitored. The dizziness was only on standing and to be honest that was better than having awful pain all the time. The dizziness has now stopped, so I have the best of both worlds.The dosage I take is 10mg slow release tablet at night.

No one has ever mentioned pelvic floor to me!. You are right about the urgency still being there. My Consultant didn't believe me when I told him that, as the Botox is supposed to stop it.!!!!

I think that they put larger doses into the bladder in the UK because of the cost, and the fact that it lasts up to 9 months and doesn't need doing again before then. I speak to a lady who had the Botox done 6 weeks before me who has the same problem, and she has been told 9 months as well. I am closely watching her progress, but so far she hasn't been normally and she had it done 6 - 7 months ago.

When I was in hospital, I spoke to several women who were in to have their second lot of Botox, the first injections lasted 9 - 12 months. They were pleased with the results obviously as they were having it done again. However, all these ladies suffered from incontinence with frequency and urgency they did not have IC. From this, I draw the conclusion that it is not so good for some IC patients. I know of another IC patient who had Botox who is in part retention, she had 200 in her bladder.

I really hope that your daughter's botox will wear off sooner than that. Perhaps as she is younger she may heal more quickly.

Tell her to keep her chin up from me. She will get better.


With best wishes from Helen

[CinSin]

I had retention the first time with 200 units only in my bladder. It lasted about 8 months. When I had the urethra and pelvic floor muscles injected along with the bladder it was actually easier to empty my bladder. I have a lot of trouble with pfd and when it flares it causes me retention - with the botox in the pelvic floor my muscles are much more relaxed. I guess just the opposite of the effects on the bladder.

I have had botox five times and each time the procedure was adjusted and now it is like we solved the puzzle for the most part.

I would suggest asking your doctor to maybe use 100 or 200 units the next time and just do your urethra and pelvic floor. I know with me it proved to be half of my pain source.

Has anybody there been checked for pudendal neuropathy? It's symptoms can mimic or overlap IC symptoms.

Physical therapy and biofeedback are both great alternative treatment options. I am glad I tried both.

Good luck and I think it was very brave of each of you to try something new.

Cindy

[colin]

Hi,

Katie is showing no real signs of improvement yet.

what is pudendal neuropathy? I've never heard of it.

Colin

[CinSin]

Pudendal Neuropathy is a inflammed or entrapped pudendal nerve. Look it up on the web site and read about it. After we adjusted my trigger point injections with Botox we discovered that I still had pain mostly on one side that the botox didn't address. After an EMG and a nerve block I was diagnosed with an entrapped pudendal nerve. There is only two teams of doctors in this country that perform the surgery to free up the nerve - fortunately one team is in Houston. But many pain specialists are doing pudendal nerve blocks for pelvic pain management. The pudendal nerve runs close to the sacral nerve.

Cindy

[Hel]

Hi Cin

I wanted to ask you that as well Cin as I don't know what it is ?

I am going back to see the Consultant next week (I see him every month at the moment), and will ask him about some of the suggestions you have made.

Thanks for your good wishes. I hope that you have had an okish day today.

Colin .............Sorry to hear that Katie is no better. Please send her a hug from me.


With best wishes from Helen

[CinSin]

Hello Ladies,

Check out these two sites:
http://www.hosma.com/renney/IPPS Talk.pdf
http://www.ic-network.com/guestlectures/renney.html

Note: The first is a pdf file of a power point presentation also, page 12 of the first site mentions that pudendal neuropathy mimics IC.

Cindy

[Dianne]

I had 200cc into the bladder only. I don't have pfd. Retention started on day 3. I cathed once then was able to void again on my own but I maintained 200cc residual for 10 mos. then it went away very suddenly. For that 10 mos. I would void first, then place my fingertips over the pubic bone and knead out the residual so that I didn't strain and didn't have to cath. We call that "crede" in the nursing world. I never got any pain relief. I got infection after infection during those 10 mos. although I had only had one UTI in 10 yrs. of living with IC previously. As soon as the botox wore off at 10 mos. I didn't get any more infections so I think it had something to do with the retention maybe. I was well warned that it might not help me and that I might get retention but had to try it. Too bad I wasn't one of the lucky ones. I won't be using botox again.

[Hel]

Hi Cin and Dianne,

Cin... .thanks for the info I will check that out.

Dianne ........ Thanks for your story. I will certainly try the kneading technique. It was interesting what you said about infections, as since the Botox I have had an infection every other week. Prior to the Botox, I never got infections. Like you, I would never have it done again, but I am pleased for those people who it has helped.

With best wishes from Helen

[Flore]

Hi!!!

I´m sorry to listen about all the problems that Hel and Colin´s daughter are having!!!

I have been having Botox injections since 2002, and is the best treatment that I have until today. But I never have had more than 200 units, and only once inside my blader. My dr uses to inject me in the urethra, pelvic floor and vagina

My dr was the first one in México that injects Botox, he began with this since 2001, so he is very prepared. He is now teaching to another drs to inject it

He says that when you have the injections in the bladder, the best is inject in the urethra and/or in pelvic floor to help with retention

I think that take Detrol or Oxibutinine with the retention is not a good idea, beause botox helps with the spasm in the bladder, like these meds

Botox last 8 months in my pelvic floor too, and helps with my vulvodynia and pudendal neurophaty

I hope that Hel and Kathi will be better very soon!!!!!!!!!

[Indy]

CINSIN and Flore:

How did you suspect and find out you had pudential neuropathy?

I am very interested in this as my IC started after a laporoscopy and has only been helped with electrical stimulation and now Botox which hasn't solved the whole problem.

[CinSin]

After the botox helped manage the IC and PFD. I still had a great deal of left sided pain and the physical therapist was the first to suspect it. I mentioned it to my urologist and neurologist. But then I changed gyn to one that specializes in vulvar/vaginal disorders and she agreed that she thought I had pudendal neuropathy. My urologist suggested I get a pudendal nerve block with one doctor but when I mentioned it to the neurologist he sent me to Dr. Charles Popeney that actually specializes in PNE. He did an EMG and ordered a block and confirmed the diagnosis. He is talking with the uro to try Botox before I consider surgery.

Cindy

[Katie.P]

Hello,
I have set Katie up with her own ID. Katie.P so hopefully she will find some help with you all out there.

We are due to see another Urologist next week and I will ask about Pudential Neuropathy - the one thing that caught my eye was that ever since this started sitting on the toilet seat has always been the most comfortable place which is one of the signs that it could be this nerve. I'll see what they say. It seems to be that it's diagnosed by using a nerve block on this area.

Our family doctor did not want to prescribe the alfuzosin as he didn't know much about it and didn't seem to like the idea that he gives us drugs based on what we read on the internet. Again it's another thing to speak to the urologist about.

She's taking Urispas 200 (flavoxate hydrochloride) to try and stop the bladder spasms but with no joy as yet.

[CinSin]

The nerve block was nothing - it took all of about 15 minutes. I was awake and the only thing that hurt was the two shots of lidocaine they gave me to numb the area. These blocks are becoming more and more popular here because if it helps, it helps reduce pain meds.

Cindy

[Dianne]

One question I've had about PNE if anyone knows is the info. on the PNE sites say usually improved with sitting on a toilet seat or lying down but not always. A few people respond differently but I've never been able to find out what "differently" means. My pain goes through the ceiling 4 mins. after I lie down. I haven't been able to lie down unless I take neurontin/motrin an hour before in over 2 years. In about 4 mins. the burning in my bladder is just incredible. If I sit up, it moderates in a couple of mins. which so seems like something is pressing on something when I lie down. I saw a neurologist - also a physiatrist the only ones in our area and both about laughed me out of the office. The neurologist says he doesn't believe in PNE. I've seen many urologists and they were all baffled about why lying down would exacerbate symptoms in 4 mins. They all said they had never seen that in an IC patient. So I've continued to wonder if PNE is a lead worth following. So does one just need to have an OBGYN do a pudenal nerve block and see if you improve? My OBGYN would do anything to help me. To those of you that the pudenal nerve block improved, was it just lidocaine they injected and if successful then you had steroids later? Any info. appreciated.

[CinSin]

There are two doctors in Houston that I have heard about that does pudendaly nerve blocks. One is an anesthesiologist that specializes in pain management. He does them as a tool to manage pelvic pain - he says it lasts up to three months. People who have had it done (those that it works for) says it is great.

The other is anesthesiologist that works with Dr. Renney. That is the one I had and it was done for diagnostic purposes only. The only drugs used for mine was lidocaine and a steroid. It took about 15 minutes, didn't hurt. Didn't last, but I didn't expect it to. There was a second block that was a little more involved that you I could have done that would be futher in the nerve and could have longer acting results. The neurologist talked with my urologist about trying botox before trying the other block or I could skip the second block and go ahead with the surgery to release the nerve. Since I have botox injections for IC and PFD I opted to try the botox first. I am scheduled for the next procedure Monday and will see what happens then.

I think you can email Dr. Renney or one of the doctors on that team with your question or I think you can arrange a 15 minute telephone consult with Dr. Renney through his website.

Cindy

[Dianne]

Ok thanks. I had tried his website before and the link on the PNE site just kept saying "page not found". So I emailed the address and asked what the small number of people that didn't get worse with sitting, what the pic looked like and got an email back just saying to read the site. So didn't know where to go with it to ask after that.

[CinSin]

This is the link that tells you how to schedule a telephone interview with Dr. Renney: http://www.hosma.com/renney/

From what I understand it is a fairly quick response time.