Hello friends. This is my second post for September and its only the 4th! I'm super excited about the fact that I have been dedicated to this blog for 48 hours.
I know my posts are usually filled with humor and lots of cursing, but today I would like to take a minute to talk about something a little more serious. (So PSA of me, right?)
September is a month that is very near and dear to my heart. It is
Interstitial Cystitis and
Ovarian Cancer Awareness month. If you don't live under a rock, you know that ovarian cancer is a very serious, and deadly disease. For women between the ages of 35-74, ovarian cancer is the 5th leading cause of death. It is estimated that 1 in 71 women will develop ovarian cancer in their lifetime. (source: www.ovariancancer.org). I have been fortunate enough to not be diagnosed with ovarian cancer, or know anyone that has, but I know people, who know people. It's also a very real possibility to be in my future in some way, shape or form. I will provide links and info at the end for anyone looking!
Interstitial Cystitis. Its the most uncomfortable, permanent bladder pain you probably have never heard of. While the numbers are not concrete, they are growing daily. Interstitial cystitis or IC as I will refer to it, is estimated to affect anywhere from 4-12 million people in this country. Its categorized as a bladder condition that consists of multiple (and often different) symptoms. It is more commonly referred to in the medical community as Painful Bladder Syndrome, Pain Bladder Syndrome, or Chronic Pelvic Pain. You can read more about the different IC names
here. It is found in men also.
Now, without giving you a bunch of medical info you are not interested in (I will do that at the end with links) I am going to give you my account of what IC is and how it was explained to me:
What it is: The inner lining of my bladder wall has somehow been compromised. I.E., scar tissue, persistent infection, cut or scrape. It is important to note, there are different types of IC. Please consult a physician for a proper diagnosis.
What it feels like: A permanent urinary tract infection. Lots of cramping, pain. It tends to be the worst about my ovulation cycle and my menstrul period.
What happens when I have a flare: Each flare is different. They are unpredictable, there is no warning, and can be mild, to debilitating. Sometimes I am met with what feels like a horrible UTI, cramps, pain in my pelvic area or bladder, nausea, migraines, rolling headaches, leg cramps. Other times I have urinary frequency (sometimes as little as 30 seconds apart) and half of that time, I don't void anything at all. And rarely, I have all of the above symptoms.
What can be done? Currently there is no cure for IC. Diet plays a huge role for IC patients as certain foods are thought to trigger flares. For example, lemonade and cranberry juice are like battery acid for me. I have eliminated them completely from my diet. There are treatments, several in fact, but none of which are conclusive, and every IC patient is different. There is currently 1 FDA approved medication. Other therapies such as bladder rescue, physical therapy, antidepressants, surgical procedures, antihistamines, neuromodulation, and others are often used.
So now that I have given you the gist, I would like to preface the rest of this entry by saying
ASK QUESTIONS! Lots of them. Odds are you know someone with IC or are suffering from it yourself. Get informed, find a good doctor, and keep your head up. Its a long, uncomfortable road. But I promise there is light at the end of the tunnel. Please get in touch with me for more info, or if you would just like to reach out!
Now let me get personal with this. A little over a year ago I woke up in the early morning house with what I felt, was a UTI. It was sudden, which was unlike any other UTI I have ever had, but it felt the same. I was on vacation, so I popped a Vicodin and went back to bed. I was a day away from home so I continued to treat with pain killers and OTC UTI meds until I returned home the next day.
Two days later I was in my primary care physician's office and they were prescribing me a medication because my urine had come back dirty. No surprise, I was on vacation and the night before I woke up in pain, I had a night of drinks, fun, and sex with my oh so sexy husband. In my experience, when I've gotten a UTI, its been from sex.
(I'll try to make this as short as possible). Weeks went by with the same pain. I switched antibiotics 3 times and nothing was helping this UTI pain. I turned to Dr Google. I came across some scary info about a condition called interstitial cystitis. Everything I read was horrifying and like most hypchondriancs, I convinced myself this is what I had and my life was over. I called my OB the next morning (after having read a blog about a girl who's OBGYN had diagnosed her) and got in the next day.
After weeks of tests, urine samples, medicines, and a catheter test, it was determined I did in fact have IC. Now the catheter test, some doctors swear by it, others (including my Urologist who specializes in IC) think its complete garbage. I happen to agree with her but I also feel like its a good tool to further your investigation. What happens is, they insert a catheter into your bladder. They give you 4 different mystery solutions. You are supposed to tell the doctor if any of the solutions make the pain worse. Mystery solution #2 was a winner for me. It was a potassium chloride, which is said to make enhance IC symptoms. The test isn't as widely used anymore for 2 reasons: low sensitivity & specificity, and its painful. I was down for 3 days after this test with an awful flare. There are also other conditions or diseases that mimic IC, so a lot of the time, its also diagnosed by process of elimination.
I started seeing my OBGYN 3 days a week (at $50 a pop!) for bladder rescues. They use a catheter to insert a numbing medication into the bladder, and it supposed to help with pain. I say supposed to because it works for some people. The numbing medication only worked when I had it in my bladder, the second I would urinate it out, the pain would be back. And I was getting chronic UTI's on top of the IC from all the catheters. I was constantly asking for pain medication, which is hard to convince a doctor for when you need it 24/7. I went through Vicodin, Percocet, Tramadol, and I was using OTC meds such as Benadryl, Tylenol, Aleve, Cystex, Peridium daily. Not good for the liver.
I finally decided to start asking questions because our current plan of attack was not working. I was miserable. My anxiety was through the roof, I was getting migraines and rolling headaches (something IC patients often report) and I was seeing doctor after doctor who had ZERO answers for me. I am not exaggerating when I say I saw over 10 different doctors for health issues I was dealing with, as a result of IC. I finally found a female Urologist who specializes in IC. She had made my life so much better. She listens. She's proactive. And now that I am an established patient, I can usually get a same day appointment if I need it. That is unheard of for a specialist of her nature. If you take anything away from this, please, find a good doctor. It may take months. It took me 6. DO NOT GIVE UP! There is someone out there who can help you, and who wants to.
To make a really long story short (I would love to share more if you are interested as I left out a lot of details to make this readable in less than a day. There is also some really good advocacy info in the links I will provide at the end) after countless appointments with random doctors and almost a year straight of being on pain killers, I finally have my IC in the works to be under control. I struggled for many nights, and I still do. There are days I can't get out of bed. There are days when I've questioned going to play in traffic. But... I have adjusted my diet. I am about to start physical therapy. I am exercising again (this is a really important aspect of treating IC as some exercises make the symptoms worse) and I feel good about my future. I am looking to have more kids; pregnancy is totally possible with IC! I still have lots of bad days, but I also have some good ones, which I never would have that when this all started. I should also point out that I suffer from kidney stones so the help I get from my urologist is two fold. I am kidney stone free for the first time in 12 years! That is huge.
I think its important for me to say that there is no scientific evidence to support that IC and Ovarian cancer have anything to do with the other. It just so happens that September is awareness month for both. I am also fortunate enough that IC won't kill me. It may make my life miserable at times, but I am one of the lucky ones. It could definitely be much worse. So please, be supportive for each other in any way that you can. Donate. Run a 5k. Wear a ribbon. And ask questions! It is important to spread the message.
Again,
feel free to get in contact with me directly if you have any info, stories to share, or just want to reach out. I am considering my next entry to be about a pain treatment option I have recently taken up, and its not without some controversy! Dun dun dunnnn....! I will also continue to update you on my progress, my good days, my bad days, and anything in between. Its out in the open now, the least I can do is share the rest of my story. I apologize for being so vague, I promise the story isn't so cut and dry, but I couldn't possibly share it all in just one entry. Do not hesitate to email me, tweet me, or leave a comment in the comments section. I hope to be hearing from you.
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| Hi. My name is Danielle. I have IC. I am a cat lady. I love leopard print. And life goes on! |
Please see below for some excellent resources regarding Ovarian Cancer and Interstitial Cystisis:
http://www.ovarian.org/
http://ovariancancerawareness.org/
American Cancer Society
www.ichelp.org
IC Network
Interstitial Cystitis Network Facebook page
Books for IC Patients:
The Interstitial Cystitis Survival Guide
The Better Bladder Book
A Taste Of The Good Life: A Cookbook for an Interstitial Cystitis Diet
Want to get involved? Click
here to get a list of runs, walks, and other activities in your area!