Have you ever had your vitamin D level checked?  More and more research shows a strong link between urinary problems and vitamin d deficiency.  Even if you don't believe that it could be that simple, get your blood level checked.  More info is on my profile. 

I have Interstitial Cystitis (IC) also knows as Painful Bladder Syndrome, and was diagnosed in 2005.  I almost always have blood in my urine.  I too thought it was a bladder infection but after treatment, pain still there.  My primary doctor, whom I love, told me he thought I had IC.   My symptoms started in the early 90s, one day I felt an urgent need to urinate and from that day on, I had to run to the bathroom more and more.  The pain started in 2005, I now have to arrange my life around where the nearest bathroom is.

I know they mentioned that she had gone through a cystoscopy, which is done in a doctor's office and they found nothing,    Mine didn't really show much but, it did show up in the hydrodistintion.  IC is different for different people, some only present pain and or urgency I am on pain management and still have some pain and discomfort but it down to a minimum, during flares I have additional pain control.  I have tried every treatment there is to  alleviate the symptoms but did not respond to them.  Some get relief from Elmiron, the only FDA approved medication for IC, I only lost some hair and got severe stomach pain, no relief.  I have tried Heparin and DMSO and the list goes on.  There is no cure, and up until now there weren’t many studies of IC, though now they are picking up.

I also have Fibromyalgia, they seem to come as a package deal for a lot of us.   In this day and age, some still say these are all in your head.  I am not sure how you can make your bladder bleed, or show hundreds of pinpoint bleeds. 

 I keep requesting a show be done on both IC and Fibromyalgia, and not just a quick mention, like many of their shows.  It should be more in depth, with talks involving patients and specialists.

I was diagnosed with interstitial cystitis. I heard from one doctor that it is a real condition. The rest of the 22+ doctors I saw said that it is simply a diagnosis of exclusion. After correcting my vitamin D deficiency, one of the few chronic conditions that didn't clear up was my bladder issue. I was told by one of my chronic pain doctors to try taking guaifenesin, which is a medication formerly prescribed to rheumatoid arthritis patients and was found to be helpful for fibromyalgia patients.  After 9 months on vitamin D and 2 months on guaifenesin, my constant bladder cramping and urinary urgency are gone. The guaifenesin has also dramatically lifted the brain fog and some intermittent fatigue and achiness. I highly recmomend that anyone who has been diagnosed with intertitial cystitis or who has chronic fatigue, pain, and brain fog (maybe fibromyalgia, maybe not) get their vitamin D level checked and follow the Dr. St. Amand protocol for guaifenesin. I'm getting my life back, and I hope you all will, too. 

And, for those who are vitamin D deficient, you need to get your serum calcium and parathyroid hormone (PTH) checked as well to rule out high calcium which can indicate enlarged parathyroid.  This is in the "tips for your doctor" in my profile.

Hi, Tonya, I just heard from a woman who belongs to a fibromyagia gruop that I belong to.  She had the same kind of bladder symptoms.  I don't know what her vitamin D status is, but she said that she also has had very good results from the guaifenesin.  She has been on it a lot longer than I have.  Would you like me to give you the support group info so that you could join and get ideas about getting help for your IC?  The gruop has been a great help to me.  I never had a formal fibromyalgia diagnosis, but when my bladder issue and some of the achiness and brain fog still persisted after my vitamin D recovery, one of my chronic pain doctors suggested guaifenesin.  My doctor couldn't officially treat me with guaifenesin because it's not part of the program that my healtchare offers, but I found that Dr. St. Amand's staff on the support group was able to help me tremendously.  It's very possible that you can get the same kind of relief that I have had from the guaifenesin.  But, I still believe that it's really important to get your vitamin D level checked, too.  If you let me know your level, I can help you formulate the right questions for your doctor so you get the right treatment.  Let me know if you'd like my help.

My doctor put me on Vitamin D a few months ago.  I have noticed some improvement in other areas, but it hasn't changed my IC or Fibro,  I haven't spent as much time in the sun as I normally did before, which I will try and change come spring.  I live in the Portland Oregon area, so winter is pretty cloudy.  I grew up in the desert of SE Washington State, I had all of the sun I needed and spent a lot of time outside.  Both my IC and Fibro symptoms started a few years before I left the desert. My doctor stays on top of all blood work and runs it 4 or 5 times a year now that I am on all of these medications.  This last round was the first time my Vitamin D was low.  My Rheumatologist also wanted me on Vitamin D, so I have been taking it once a week.

The medications I am on do a good job of keeping my bladder pain level down, and usually I can go about an hour between bathroom runs, though some days it is more often.  The Fibro is hit and miss, as you know, one moment my hip my hurt and the next it can me my ankle and getting up after sitting or laying you can feel stiff and sore like you have been exercising all day.  It has affected my short term memory, if interrupted during a conversation; I can forget what I was talking about a minute later.  I went through testing by a Neuro-Psychiatrist and it was very frustrating trying to do things that a couple of years ago would have been a cinch.  In his report, he said that it was obvious that I was frustrated.  I spent 8 years as a 911 Dispatcher and had always been a whiz at multi-tasking.  I could keep track of 3 or 4 conversations at a time, now even one can be difficult if interrupted.

Hi, Tonya, thanks for your message. Any combination of foggy brain, fatigue, and stiffness is really common with vitamin D deficiency, depending how long you've been deficient.  Typically, from what I've read, fibromyalgia patients complain of all three and a multitude of other symptoms, including IC symptoms.  I recommend two things, and I can almost guarantee you that they will work:

1) get Dr. St. Amand's book, What your doctor never told you about fibromyalgia fatigue."  The older version is at libraries and the newer and older version are online and are cheap.  There are patient descriptions of symptoms througout the book.  A blogger on the Doctors show told me about it, and I was floored when I read the patient descriptions.  Then read the chapter about urinary conditions.  Vitamin D seems to have stopped the progression of my illness, but it didn't stop the IC.  Guaifenesin did.  Dr. St. Amand's guaifenesin protocol will lift your brain fog, achiness, fatigue, and IC.  Join the fibro support group that is listed in the book and on Dr. S.A.'s website.  This really works, and it costs very little.  The only thing Dr. S.A. doesn't explain or believe in is the connection with vitamin D, but I think soon, he will see the connection as more and more research comes out.

2) your doctor may not have done this yet as the tests are not standard: get your parathyroid hormone (PTH) and serum calcium tested.  According to my endocrinologist PTH will always be high with low vitamin D.  For some people, calcium can also go high, and this is a sign of a parathyroid condition, and it can also cause the symptoms you're having with brain fog and fatigue and achiness.  And, May I ask what your vitamin D level was?