my life with Fowlers syndrome

[brigitterideout]

Hello,
My name is brigitte i am 30yrs old and i live in Australia and i have had Fowlers syndrome since i was 15 yrs old. Fowlers syndrome like IC is horrible and unfair disease i think, for many years i was shunted from doctor to doctor treated for diseases i did not have ,not to mention mentally ill from years of pain, anxiety. When i was 18yrs old till 23yrs old i was bed riden due to pain and i call them push down attacks where my spincter muscle goes into spams not to mention the urgency feeling to pee which never goes away!!! Eventually i met a nerourologist who treats nerves and the bladder who ran a battery of tests bladder hydrdistention, cyctocopy and urethral pressure etc... and then he diagnosed me with Fowlers syndrome and he put me on flomax after a year i went into a capablepain free state but i was soo bitter about how much i lost and suffered i wasted 4 years tourtering my self in depression i even met a wonderful man who i moved in with and i love so much but i still couldnt get out of my self loathing. The reason i say all this is i am 20 weeks pregneat and the urgencey is back as well as pain, being in bed all day is all i can do to stay out of major pain. I wasted so much time feeling sorry for myself when i should of been enjoying life, i fogot how special a simple walk pain free could be. A ll i want is to be a good mum but i feel like i dont deserve that as i feel bad for my partner and child being around a sick person, will i ever go into remission again, i hope so but i will never take it for granted again

[ICNDonna]

to the IC Network.

I'm not really familiar with Fowler's syndrome --- I did a brief search and found that it causes urine retention and can require catheterization to urinate. I hope your doctor will be able to help you feel better again.


Donna

[ermkenne]

Hello-I may have Fowler's as well

I sent you a private message, but I may have Fowler's syndrome. I am also an IC patient. I am so happy to have found someone who can help me out right now, and someone to connect with. I was having a rough night, and this made me so happy.

I hope you received my message okay. I look forward to talking with you.

I am sorry you have gone through so much. Really am. Hopefully we can discuss things better.

Erin

[KathiB]

I think I might have Folwers as well - I have IC, and my dr. also calls mine a 'neurogenic' bladder. I'm not sure if neurogenic and Fowlers are exactly the same thing, but similar at least. I suffer from retention - at times full retention where I can not urinate - last time for 5 days. The retention, combined with my IC, make for lots of pain...

With Fowlers, Brigette, I wonder if the IC diet might be helpful?

[ermkenne]

The retention for me does not last a whole long time, it is just off and on. I have days where I just cannot urinate, or that I have a very hard time starting urination. I literally have to concentrate, and then catheterization is the only thing that helps.

I had a cysto/hydro a little over a week ago, and my IC is improving, but this other issue is causing me problems. KathiB, does Sanctura help your retention? I am not sure if it really helps. There is not really much out there for Fowler's to read on the internet. I see my urologist tomorrow for my follow-up and hope I can get more answers-treatments and everything. It is good my IC is getting better, but pain management has really been helping me a lot with pain in general. I also have PFD, which I know that everything is then related.

I still feel like I have IC pain, even though my bladder looks better. I don't know what is going on. I will let you all know what I find out. I will bring up the neurogenic bladder component. I have so much on my mind. :/ It is always one thing after another when it comes to health. Been having some major anxiety issues lately.

Erin

I am happy to hear there are other people out there. Not happy we all have to deal with it, but happy we can relate to each other.

[KathiB]

Hi Erin - no, the Santura did not help me, in fact it made my retention worse, so I stopped taking it after just a week or two. It also made me have a dribbly stream and as far as I could tell, it did nothing to help with the spasms.

I am going to be having a kenalog injection in my bladder in Sept - we'll see how that does in relaxing the bladder and hopefully it helps the retention. If not, I'm moving onto an Interstim trial, which has a lower effectiveness rating with a neurogenic bladder, but I'm hopeful. BTW - I was told I had a neurogenic bladder as a result of urodynamics testing. My spasms went up off the chart, over the threshold and then back down again onto the paper. Yikes.

I agree it's nice to have company - too bad we're not communicating with each other about how excited we are to have won the lottery, lol.

[brigitterideout]

hello fellow fowlers friends soooooooo nice to hear from you

Hello

Sorry i have been offline for a bit due to internet troubles but im back and its sooo nice to talk and hear from other people with fowlers syndrome. The ic diet i feel helps especially avoiding sugars, spices citric acids and potassiums in large quantities. The flomax 400mcg twice daily was a big help, i believe in america its called rapiflow as well as i see a nuerourologist. Im 26 weeks pregneat and my fowlers is back full force due to the pressure on my bladder and horemones. Sorry bout the aussie accent and spelling...

Brigitte.

[ermkenne]

Hello KathiB and brigitterdeout,

I was diagnosed with Fowler's syndrome yesterday due to my urodynamics procedure, which I can say is Hell, lol. I have a few choices, one is to try using the vaginal valium every day constantly, or start considering Interstim. I was wondering if you have tried interstim yet or not? My doctor is very well known for it in his practice, so I completely am okay with him and his decisions. He wants to try hyaluronic acid instillations to try and keep my IC at bay-since it seems to be under control now. He believes that my IC is not the problem, it is Fowlers right now. A year ago it was IC, and now it is Fowler's, ugh. Does Fowler's cause you severe pain, and also does hormones set it off like IC?

I just feel like I am having IC pain, but I don't know anymore. I have done so much PT, that I don't think I can learn anymore. Just so frustrating. Thanks for any info.

Erin

[samilia]

Re: my life with Fowlers syndrome

Hello,
My name is brigitte i am 30yrs old and i live in Australia and i have had Fowlers syndrome since i was 15 yrs old. Fowlers syndrome like IC is horrible and unfair disease i think, for many years i was shunted from doctor to doctor treated for diseases i did not have ,not to mention mentally ill from years of pain, anxiety. When i was 18yrs old till 23yrs old i was bed riden due to pain and i call them push down attacks where my spincter muscle goes into spams not to mention the urgency feeling to pee which never goes away!!! Eventually i met a nerourologist who treats nerves and the bladder who ran a battery of tests bladder hydrdistention, cyctocopy and urethral pressure etc... and then he diagnosed me with Fowlers syndrome and he put me on flomax after a year i went into a capablepain free state but i was soo bitter about how much i lost and suffered i wasted 4 years tourtering my self in depression i even met a wonderful man who i moved in with and i love so much but i still couldnt get out of my self loathing. The reason i say all this is i am 20 weeks pregneat and the urgencey is back as well as pain, being in bed all day is all i can do to stay out of major pain. I wasted so much time feeling sorry for myself when i should of been enjoying life, i fogot how special a simple walk pain free could be. A ll i want is to be a good mum but i feel like i dont deserve that as i feel bad for my partner and child being around a sick person, will i ever go into remission again, i hope so but i will never take it for granted again

Hi @Briggeterideout

I am just wondering where you went or who you saw for your diagnosis of fowler syndrome? I am also in Australia and since i had a bladder repair in nov 2015, i have had intermittent urinary retention. I actually couldnt urininate for about 2 months post operation. I had 7 kidney infections last year and multiple UTIs and 1 kidney infection this year because i usually retain 100 to 200 mils after most voids. My urologist thinks these are all IC symptoms as i have that diagnosis as well, but id like to look into fowlers also as i read that sacral nerve stimulation is 70% effective at treating it.

Any help would be much appreciated. I hope you are doing well and are on top of your symptoms.

Kind regards, sam. X

[Mothergoose]

Re: my life with Fowlers syndrome

I also have neurogenic bladder as well as IC. My uro used the name Fowlers interchangeably with neurogenic, I refer to it as neurogenic b/c people know what that is more often than Fowlers.

I find the IC diet does help both, or it helps the IC, and my retention is always better when my bladder is better off.

I was diagnosed with neurogenic bladder by urodynamic tests. It took me 20 mins for the first pee, I still had 300 Mls in my bladder.

Once when I went to ER in total retention, they cathed me and got 12 cups of urine out.

Flowmax and meds like that made retention worse and know I am very allergic to them.

I am very sensitive to most meds used to treat IC. Elavil, GABA, neurotonin, Cymbalta, antihistamine's, and many others put me into full retention.

I self cath it used to be about 6 times per day, now when needed, but I am very careful what I eat, drink, or what I take for meds.

My bladder is large and flabby from being stretched out.

Things that have helped is vaginal Valium, I ussally just used at night, my bladder would relax over night then I would be able to void.
Klopin at night helps tame the spasm's.
I have used RX pain meds b/c it can be extremely painful, that I can't move.
What worked the best for me was Dexadrine, short acting, I tried it for IC, it helped both for me. This is not to be mistaken for other simular Med, example Adderal, it is a combo of 4 different meds, some of which can bother your bladder. Others have written about being on ADD meds which Dexadrine is sometimes used for, but not got the same relief from it. I took Dexadrine fir a couple of years, I was then able to reduce it then stop taking it. It was very useful while I was figuring out the IC diet, and what meds increased my retention.

I don't think it is that uncommon for rentention issues to go hand in hand with IC. Some people with IC have pain others don't.

I have also found that drinking more water helps me way more than not drinking enough water. If I don't drink enough water, I feel like I have to go mire so than if I drink lots of water and really have to go.

Hope this helps someone.