What is Interstitial Cystitis?

What is Interstitial Cystitis?


Interstitial Cystitis is the worst bladder infection you've ever had, except no bacteria is present, there is no cure, many foods make it worse, and separate treatments have maybe 1/3 of a chance of helping. The only true "treatment" is treating the pain, as its usually the only thing that will work. Even patients who've had their bladders removed still experience the pain. Doctors don't know what causes it or how to get rid of it but have many theories.



Need to find a doctor in your area who actually knows how to deal with IC humanely? Click here.

These are the new guidelines for diagnosing IC. If your doctor isn't using these then I suggest you find a new one who keeps up to date.

You can find the IC safe collaborated recipes between me and my step dad here.
Showing posts with label standing up for yourself. Show all posts
Showing posts with label standing up for yourself. Show all posts

Sunday, November 25, 2012

Somehow, I'm doing fine! (And an interesting localr article in the paper on Pap smears)

It's late November and I'm still working with no fears. The weather dropped significantly earlier this week and I felt nothing. I really, really hope this means I'm done with this bout of IC.. I'd love to get out of retail, and it's the fear of not being able to work 8 hour shifts keeping me in part-time only positions. So far, so good!

Thanksgiving was kinda a letdown though. For obvious reasons. IC patients can't eat anything tasty (my own speculations..). A lot of my family don't want to bother with cooking something completely separate for me, so I just got some cheesy broccoli for my dinner.

Something interesting that did occur today, which I noticed at work, was an article in my local paper about birth control potentially becoming over the counter. The ACOG said that in their opinion birth control should be given over the counter. Is my fight finally over? Of course not. Doctors seem to take forever to get these memos.. and there were a few women defending the annual exams. One in particular enraged me enough to send my own letter to the editor. Basically, she worked for a gynecologist and said women would skip screening completely. Hm.. well.. I'm sorry ma'am, but we're adults and have the right to skip screenings that have nothing to do with the medication we're visiting to obtain. Of course, my letter was a lot more detailed and angrier than that. It read:

I had to throw my two cents in after reading Woods' response. There are many over-the-counter drugs patients shouldn't take if they have certain medical conditions and should consult a doctor prior, but the main retort I wanted to make was against the lines, "Plus, if you do not make them accountable for their annual exams by the pill prescription expiring, then you have another issue of missed Pap smears, thus more cervical cancer."

That's disgusting reasoning. It's okay to ransom birth control pills to make women go to exams? What about men and prostate exams? Should doctors withhold Viagra, high blood pressure medications, or anything of the like to "hold them accountable"? How about dentists? Should we hold other medications for ransom to make sure everyone gets their teeth checked? We're all adults here, please treat us like one and let us make our own informed decisions. A pap smear is unnecessary to obtain birth control, you are not told about the high incidence of abnormal results that resolve spontaneously, negative biopsies and colposcopies, and the pros and cons in general of this exam. Not to mention, on top of it all, the medication is withheld until a woman complies to the doctors demands. How is this informed consent?

As of March the ACOG also said annual Paps are unnecessary [http://www.acog.org/About%20ACOG/Announcements/New%20Cervical%20Cancer%20Screening%20Recommendations.aspx]. I for one would like to follow the guidelines and have one every 1 to 3 years based on my personal sexual history until I reach the age of 30 and then follow the recommendations for that age. Such decisions should take place through a discussion with your doctor about your own personal needs and medical history rather than a dictatorship that uses a one-size-fits-all approach. I've had college friends go without the pill due to their fear of the exam and end up pregnant. Women who have been abused in the past also may have great difficulty in going through with the exam, and many young teens opt to go without the pill due to their own fears of the exam. Friends in other states have never heard of the practice we have here of requiring a pelvic exam to get the pill and are shocked when I tell them about it.

Oh, and to finalize my viewpoint on this.. there are already ways around the annual exam while still obtaining the pill. Planned Parenthood runs a program called HOPE which provides the pill with no exam necessary. Likewise, just like with Viagra (and not recommended, but I'm throwing it out there anyway), the pill can be ordered legally from the internet with no hassle. I still see my doctor, but that is

Thursday, December 29, 2011

Always keep this picture in mind while at a doctor's office



My first urologist demanded I have a hydro to be officially diagnosed. I knew I had IC for three years based on food triggers, remissions, STDs being ruled out, and finding the ICN support group.

For someone my age (19) it could have only been cancer, an STD, a stone, or IC. STD was ruled out. I didn't visit a doctor about my IC after the first one told me to go get a scope for diagnoses until just last year. So three years of on and off pain, a year of remission, and nothing else happening meant it wasn't cancer and not a stone.

It was painless way to rule out everything else.

Now my first Uro was a kind lady. She gave me a hug when I started to cry. I cry easily, especially when frightened, and I'd rather fight a shark than have a scope done on me while awake. (Actually, I'd fight a shark just to do it.. I love marine biology and know they're pussies if they can't get a stealth attack in, but alas, this blog isn't about fish).

She left me alone in the room with my boyfriend to make the decision. And that was the picture that popped into my head and made the decision. What was wrong with her? The new guidelines clearly stated hydros were USELESS for diagnosing and scopes were only need in complicated cases such as ulcers, which I did not have or else I would have been screaming the whole car ride over. What is wrong with these doctors? Don't they read guidelines? When I confronted her WITH A PAPER FROM THE ICA that had the new guidelines she said, "Well, that's just how we do things around here." Kind of like when you were a kid and your parents would win any argument just by saying "My house, my rules." It was patronizing to the extreme.

Thankfully I had researched hydros months before the appointment and found that its basically a 50/50 chance of it helping or permanently hurting you. Not worth the risk.

I walked out, still thinking of that picture.

I'm very happy I did. I found my dream urologist who doesn't even charge a co-pay, gives free samples of anything you request, listens, and also provides tips on day-to-day life and letting me know that GMC sells quercetin pretty cheap, and that yes it helps IC (something I already knew, but I didn't know GMC sold it for much cheaper than Cysta-Q). She also gave advice how to get rid of the toilet stains the Utira-C would cause.. and basically.. just treated everything by informing me of everything she knew that wasn't directly medical related, but would certainly help me live my life easier.

Dr. Grumpy on his blog made a post about "That Lady Doctor" which gives out free meds, prescribes anti-biotics for UTIs at 2 A.M., speaks to patients in stores, gives free medical care, and other such things. He was being sarcastic. But you know what? Both my uro and GP are "That Lady Doctor." They exist, much to his disbelief, and those are the ones you need to find.