Is this a Women's only forum?

[drsimp12]

Is this a forum were only women post about there IC?

[Babs RN]

Absolutely not, it is for men and women. We welcome guys posting and there are several who do regularly. Welcome to the ICN!:welcome:

Hugs,
Barb:smile tee :hi:

[ICLori]

Nope, it's for men and women, and several men are here actually. I'm very grateful for each person who posts here, whether a man or a woman.

I think that the boards appear to contain mostly women, though, because IC is a disease that strikes 9 women for every 1 man.

I hope you will stay on the boards and that we might be able to help you, and welcome!

Blessings,
Lori

[ICNDonna]

The forums are for anyone with interstitial cystitis or painful bladder of any origin. I will have to admit that there are more women than men posting here, but that's simply because more women than men have IC.

:welcome: --- post away.

Donna

[drsimp12]

I am a 29 year old male and I have been diagnosed with IC for about 7 or 8 years now. Although I feel I have had it for a much longer period of time. It’s a struggle going to bed when I have a flare up, it’s like trying to go to bed when you feel like you have a full bladder. Some times it’s really hard to sleep. I am on ditropan XL during the day and at night I take more ditropan. I don’t really think that it helps. Sometimes the flare-ups can last for a week or 3/4 mouths. So basically what I do is tough it out until the flare up stops. The only sanctuary that I have from this is to go to work. When I am at work it seems that I am thinking about it less so I probably go to the bedroom less. However, when I get home and go to bed I start to feel it again. I have usually get up 6 or 7 times a night. So it breaks up my sleep and I only get about 5 or 6 hours of sleep to begin with. I have restored to usually Tylenol PM. Which is not a sleeping pill but it says it causes sleeplessness which helps me sleep through the night. Traveling is another issue all together when I have a flare up. Having to stop at every rest stop to go to the bathroom is really a pain for me and the people that I am traveling with. I also had to stop going to movies because it was just no fun for me. Playing sports are also a plain. Having sex with my beautiful wife is also pretty…well….. not fun afterwards. That is a really big contributor to the flare-up, and fruit punch or any type of drink like that.

For the last 6 mouths I have was the best period of time in my life. I had zero flare-ups. I thought I was done with it, then all of the sudden it decided that it was going to come back. Silly me for thinking that I was rid of this crap. Now it is back, going to sleep is a struggle. I am not trying to be over emotional about this. It is just that I am trying to explain what I am going through to people that may know exactly what I am going through. For a change………..

[ICNDonna]

Believe me when I say we do understand. Are you following an IC diet? If not, my suggestion would be to begin that immediately. You'll find it in the Patient Handbook at http://www.ic-network.com/handbook/ There's also information there about the various treatment options for IC.

Hang in there --- you'll have better days.

Donna

[vm]

IC is a big pain in the butt, isn't it? I'm sorry you haven't been able to find something to help your symptoms more consistently. :( Have you tried any treatments besides the Ditropan?

[drsimp12]

IC is a big pain in the butt, isn't it? I'm sorry you haven't been able to find something to help your symptoms more consistently. :( Have you tried any treatments besides the Ditropan?

When you say treatments what do you mean? If you are talking about medications, Ditropan is the only thing that I have taken. Also, it does not seem that food gives flare-ups. Having sex would be the #1 cause of flare-ups and liquids would be a close #2.

[tigger_gal]

chocolate, caffenee, coffee, sodas.. are good falre startes.. certian fruits, vegies and lots of other tems, tacps, pizza and such...
meds.. there is Elmiron it eplaces the gag layer, and helps restore elatity in te bladder.. Hydroxizine, its an antihestimine, but it is very helpful to the blader I take 75 mg a night.. Ambien is great to hekp you sleep.
Has you doctor tried to do hydrodestions as a treatment to help your symptoms... also there is elival, its an antidepressant but helpful with pain if you can tolerate it.
hope this is helpful.

[Cheries]

Welcome to the board. We ALL understand your pain and frustration. Here are a few ideas:
Get a better urologist who knows how to treat IC. DitropanXL is not really a med to treat all aspects of this disease.

Also, find a pain management center to help you with your painful flares. This is essential to your quality of life.

Third, investigate new therapies. I am very encouraged by the research done on APF, which is a known toxin in the bladders of IC patients. More research is needed if we are to find a cure for this difficult disease.

[mare mare]

I'm suprised your dr. has not treated you with other medications. Have you tried anything else? Having ic for 7 to 8 years and not trying anything but ditropan! :confused: Taking ditropan for me was a waste of time! I had the same problem at night until my uro (are you seeing a urologist?) prescribed B@O supposotories. It doesn't sound fun but believe me the first night I did one, I only got up 2 times to pee! (compared to 8 times) That's a GREAT night! They work great for bladder spasms. If you're not seeing a Uro. please find one and don't be afraid to tell them exactly how you feel! This disease will physically and mentally try to screw-up your life! There are a few other options for you to try!!
Come vent anytime!!

mare mare :welcome:

[vm]

Check this link when you get a chance - there is soooooo much more out there than just Ditropan:

http://www.ic-network.com/handbook/treatments.html

[jwisely]

No. :smile tee The world is not men only or women only sanctioned, and neither is this forum. :pray: I am newly diagnosed, and I have found some comfort, good information and lots of stories. Welcome!:welcome:

Jessie:toilet:

[drsimp12]

Just realized that chocolate causes flare ups. That sucks.:mad:

[Silverfern]

You're so right about the chocolate! It's an absolute bummer alright. The only thing I can say to comfort you on this one is that you're most definitely not ALONE!

[ICNDonna]

I can have a little bit of chocolate, but did avoid it for a long time. Usually white chocolate is okay for ICers and they even make white chocolate M & Ms now. Another option is to give carob a try. It's a chocolate substitute and does tast a little different, but after you haven't had chocolate for a while, it really tastes more like the real thing.

Donna

[drsimp12]

I know that it's cliche but "When it rains, it pours." I am so sick and tired of this stupid IC crap. Seriously. It's bad enough that I have to deal with IC for 8 years or more and for the last two years I have had to deal with anxiety and depression. The three things are not a great combo. What the hell are you suppose to do to cope with this stuff when you get zero support from your best friend (My Wife) who are you suppose to turn too? Talking to my psychologist is not helping. As the IC and the anxiety get worse and worse what do you do? I'm a VERY strong person, but everyone has a breaking point...... Losing "It" is not somthing I can seem to avoid.

[ICLori]

IC is a terrible disease - absolutely debilitating - and you've gone through an awful time of it. Many people outside of us don't understand how much it hurts or how hard it can be to live with it every day.

But you've already gone through the worst part - now that you are diagnosed, your uro should put you on some meds that are known to be effective for IC.

I'm guessing your uro might start you out on Elmiron, Atarax or Elavil, or some combination thereof. He might recommend DMSO instillations, or "rescue" instillations of heparin, lidocaine and whatever other ingredients he judges best for IC. Pretty soon you will be feeling like your old self. While Elmiron can take 6 months (or longer) to work, other drugs such as Elavil act more quickly, and you could be feeling pretty much back to normal very quickly.

Please hang in there - things will get better soon, now that you have a diagnosis and hopefully can find a doctor knowledgeable about IC and how to treat it.

Blessings,
Lori

[drsimp12]

IC is a terrible disease - absolutely debilitating - and you've gone through an awful time of it. Many people outside of us don't understand how much it hurts or how hard it can be to live with it every day.

But you've already gone through the worst part - now that you are diagnosed, your uro should put you on some meds that are known to be effective for IC.

I'm guessing your uro might start you out on Elmiron, Atarax or Elavil, or some combination thereof. He might recommend DMSO instillations, or "rescue" instillations of heparin, lidocaine and whatever other ingredients he judges best for IC. Pretty soon you will be feeling like your old self. While Elmiron can take 6 months (or longer) to work, other drugs such as Elavil act more quickly, and you could be feeling pretty much back to normal very quickly.

Please hang in there - things will get better soon, now that you have a diagnosis and hopefully can find a doctor knowledgeable about IC and how to treat it.

Blessings,
Lori


You know thought I was really thinking about this whole IC thing and I bet I have had it for my entire life. The feelings just got worse and worse as I got older. Until I just could not take it anymore. So I went to the doctor's about 8 years. It's still the same as it was back then. The only difference now is that there is a term for what I got, and I still feel the same. It has just taken a toll on me and I am not a person that breaks very easy. It's just every person has a breaking point.

[Patrice]

Hi!
I'm sorry you're gong through this...it sux. I need you to start from the begininning. Were you dx through a hydrodistension, then only put on ditropan? Because it seems like you've gone through a lot in the last 8 years that you didn't have to and hopefully won't have to. Like someone said, lots of food can trigger symptoms. You need a uro who knows all about IC, who can educate you on diet, and try meds that can give you relief. I had a doc who would only give elavil...I switched and I am so happy I did. There are a LOT of meds and therapies available that it sounds like you haven't been told about much less tried. Please let us know what your status is. Are you seeing a uro or a GP?:confused:

[ShePurzz]

Wow! 8 years without much treatment or improvement is a very long time to be hurting.

I hope you can contact someone at a hospital nearby and see if you can find a URO who is very knowlegable about IC -- that seems to be a very important decision especially since you are not feeling any better in 8 years.

If you find someone who is working with many other IC patients, he/she will already know a LOT about the disease and will be aware of the pain you are in -- there isn't a look on his/her face of 'great, another with all these symptoms, what am I supposed to do about it' when you go to the office for treatments.

Consider finding a good doctor in your area and telling him/her how long you have had the problem and ask about some REAL treatment plan -- if you aren't satisfied, try another doctor and keep doing that until you find the ONE that works WITH you and FOR you... not just a 'take two aspirins and call me in a month -- that will be $40 dollars please!' type of office.

My URO isn't always the one I see -- sometimes I have a treatment and it is just a nurse. I have found one that OFFERS ME information when I come in. SHE is on the lookout for the IC patients in their office and when we come to see her SHE offers new updates, etc... She is the one that told me about the two websites I visit for IC news and updates and I am subscribed to get information from them.

This group/board is a fabulous resource for you to get help finding a doctor in your area, as well as a plethora of information because you hear so many other people's symptoms and treatments and you will see -- the same thing does NOT work for everyone.

I was on Elmiron for several years -- it was wonderful immediately for me -- but true, in time it got better yet... I also use(d) Elavil at bedtime and had instillations as needed. Then, due to depression and anxiety, I needed to go on a [new] medication for my depression and anxiety attacks and WHAM!@@! I can no longer take the Elmiron and I couldn't even take the fourth instillation because the pain so so severe. So, again, it is an individual thing and hopefully you will be patient with YOURSELF and your choice of a Doctor until you find the right combination FOR YOUR symptoms... then remember ... they can change for 'no apparent reason' and you may have to go through another period of trying and waiting to find the right combination again...

I believe if you read some of the wonderful posts on here about getting through JUST this day... you can also be uplifted and not try to force things to happen in YOUR timeline, you will find that once you can relax and KNOW that there ARE solutions out there -- some just take a little more time than others -- the SUN IS SHINING on the other side of IC...

Be blessed today and talk to someone who can give you the names of IC Urologists in your area -- I drive one hour one way to see mine -- there are several others closer -- but mine CARES ABOUT HOW I FEEL -- that is worth the drive!!! I hope you will find one as well.

God Bless!!
Mary
:grouphug: