Newly Diagnosed Yikes

[Lenee]

I was just diagnosed almost 2 weeks ago by a uro-gyn, he did a Cystoscopy
and confirmed I had the little red ulcers (I have pics yuck!) so I most definitely have IC. I have had pain since my hysterectomy in 2001 and have had many many procedures and surgeries done so I wasn't expecting this diagnosis at all. I didn't think I fit the mold of an IC diagnosis even though I had read about it many times in my research for an answer to my pain. I thought because I wasn't running to urinate like I had read so many sufferers do and I only would get up 1 time at night if that, that I wasn't a candidate for IC. Urgency wasn't an issue until more recently either. I was wrong. In addition, I just visited a physical therapist that specializes in women's health and the pelvic floor because I read here and other places that I also could suffer from PFD. She confirmed this as well. Now I don't know if I was suffering from the PFD all along and killed my bladder with meds or if it possible that the pain from the IC has screwed up my pelvic floor muscles from the stress of it? Does anyone know how common this is in IC? I also read that IC effects alot of women after age 40 so is it possible that once our hormones start changing(like they did for me after my hyst) we are more susceptible to IC? or do our pelvic floor muscles not support the bladder and we don't void right, could that cause this? I'm sorry, I guess I just want to know what caused this and if I suffered for 5 years from something that could have been found a lot earlier or if I did this to myself with everything I have put my body through.

Anyway, I am trying to stay optimistic, the diet is a little overwhelming and I have already lost 5 lbs just from being concerned about everything I eat. I have been a fat watcher for many years and careful about carbs so without salad, fruits and yogurt, I'm having a hard time eating. I did print the list out the last couple of days and am trying really hard to get a handle on foods I can eat and not stress about what I can't. One final question would be, how long did it take some of you to get to a pain free stage so you could start experimenting with adding foods back to your diet? I'm not really sure what a real flare is and I'm not sure if I can tell the difference between the muscle pain and the bladder pain. What are the types of pain issues you guys deal with that might be a signal that it is definitely the bladder not happy?

I am so grateful to this site for all the information and help. Thanks so much for the support~Lenee

[Katrina]

addition, I just visited a physical therapist that specializes in women's health and the pelvic floor because I read here and other places that I also could suffer from PFD. She confirmed this as well. Now I don't know if I was suffering from the PFD all along and killed my bladder with meds or if it possible that the pain from the IC has screwed up my pelvic floor muscles from the stress of it? Does anyone know how common this is in IC? about 70 percent of patients with IC also have PFD. They are intertwined in making each other worse so it is definatly a chicken or the egg on which came first. My doctor's treating my PFD do consider treating the illnesses that affect it as an important aspect of that. Treating the PFD in turn is an important part in helping those illnesses.

I also read that IC effects alot of women after age 40 so is it possible that once our hormones start changing(like they did for me after my hyst) we are more susceptible to IC?
Although it is more and more common to get IC at an earlier age these days and the affect hormones have on IC is not the same for each patient....one thing that can happen with and after metapouse is that we are often more acidic....which is hard on the bladder. I personally was flaring with each period prior my hysterectomy but since my hysterectomy was full abdominal it was hard on my bladder and I needed extra treatment to get back to my norm afterwards since it hurt my bladder. What I did definatly do a lot of was antacids because I could tell I was more acidic. You will find out though that many patients have a big problem with hormones...it is a complex issue in IC.

or do our pelvic floor muscles not support the bladder and we don't void right, could that cause this? That certainly doesn't help either.
Retention...not completely emtpying your bladder or having difficulty doing so is not a fun symptom of PFD and it can cause infections which dammage the bladder....it may make you strain which just bothers the whole area.

Remember as you eat that not eating allows more stomach acid to get to your bladder....so don't avoid all food as you try to avoid trigger foods. I did that and found out the hard way that it hurts!

One final question would be, how long did it take some of you to get to a pain free stage so you could start experimenting with adding foods back to your diet? I'd say it took somewhere inbetween a year to a year and a half for me before I only had pain during flare ups. The good point is that starting at about the 3 months point I started to improve and continued to improve so I knew I was headed in a good direction during that time.

not really sure what a real flare is and I'm not sure if I can tell the difference between the muscle pain and the bladder pain That is difficult but we can help you through it.
PFD newsletter posted http://www.ic-network.com/forum/showpost.php?p=256636&postcount=11
http://www.remedyfind.com/newsletters/Jun_05_InterstitialCystitis.html on flares




:grouphug: I am always here for you. Feel free to contact me anytime :grouphug: you are not alone :grouphug:

[L. Thomas]

My urogyn thinks that IC is a condition that manifest itself after bladder trauma. It sure seems to fit my picture.

I don't think IC is caused by something you do or don't do.:loco:

If there was something to do or:bonk: not do to prevent IC, I think we would all spread the word FAST.
________
Washington Dispensaries (http://washington.dispensaries.org/)

[ICNDonna]

:welcome: to the IC Network.

Don't get discouraged about the diet. I know it's overwhelming at first, but after you begin to feel better, you can think about adding back some of your favorites, one at a time, so you can build a happier diet.

Warm healing thoughts,
Donna

[Lenee]

Thanks so much for all your encouragement. I cried to hear such words of caring and wisdom. I am so thankful for the help. I have tried to be my own advocate with this pain and have been trying for some time to express that I thought there was more than one thing going on with me. After awhile you start thinking you are a hypochondriac though and that everyone even your drs thinks that too. There's no cast to see or a scar so there's no visible thing to show your pain. Sometimes when you do get that break from it, you think it was all your imagination and it's not as bad as you thought, only to be slammed with it again and reality is back. It's scary to get a diagnosis but a relief at the same time to have a light shone on the issue and the hope of helping yourself. I am trying my best to stay optimistic and have read that the more we learn about this disease the more chance we have of living life to its fullest. I can't tell you how much it helps to know that this site is here and that I am not alone.

Lenee

[ICLori]

Hi, Lenee, welcome! You've already gone through the worst of it - the time before diagnosis and treatment. Hopefully your doctor will have a treatment plan that will leave you feeling like yourself again! Some meds take longer to work - Elmiron can take 6 months or longer - but others work right away to relieve the pain, such as Elavil. Although this disease is incurable, it can be managed with the right meds for you.

Sometimes it does take trying various meds, though, before finding one that is right for you. Don't give up if the first med doesn't work for you, or if it has side effects that you can't tolerate.

Blessings,
Lori

[Katrina]

I want to clarify I certainly didn't mean to say that having IC is because of anything we do or do not do....but the one thing that connects IC patients is some sort of bladder trauma. There are definitely things that are hard on the bladder....but there are also people that do these things and have gone through an equal amount of "bladder trauma" type things and don't have IC. Some of us have had multiple such things happen...so maybe it is something that if enough dominos fall you have IC...

Don't worry Lenee, no matter what you aren't alone with having to adjust to any of this. :grouphug: