This is just my little blog on lots of big things. I'm 27 and happily married to a darling man that I'm honored to call my husband. I've been diagnosed with Stage 4 Endometriosis which has put a damper on starting a family. So here you will read about my struggles with my health, infertility, my relationship with my husband, and most importantly..my relationship with God and how day by day he is guiding me in a life that I'm proud to live.

Thursday, May 17, 2012

Just when I thought I was done with getting diagnosed with stuff!

This is in no way a "woe is me" post. I try to update on here stuff about my health for friends and family who read my blog who I don't get to talk to everyday. Not to mention, it's not really something I want to have to explain to everyone individually. I can tell you this, over the past few months I have developed such an amazing relationship with God, that when I heard this news, I didn't react like the "old" Tiffany would have. I have accepted it. I have accepted that I'm seeing a great specialist who listens and didn't give me the run around. She knew after going through a check list that this is what I was suffering from.

If I go back to being a teenager, I had an unhealthy relationship with iced tea. It was all I drank. It had me running to the bathroom constantly. I also had to have two packets of Sweet 'n Low (sorry mom) in it, and lot's of lemon. After I turned 21 (Ok, ok, even before then), I was a poor cashier working at Harris Ranch who would enjoy relaxing after work with a couple of brewskies. All of these, had me peeing constantly. Pretty much all alcohol has done that to me, except vodka and white wine. The past year or so, it's gotten worse. I've always loved lemonade, limeades, those awesome Cherry Limeades from Sonic are my weakness. I love pineapple juice, especially mixed with Malibu. I love big glasses of orange juice in the morning. I love Gatorade when I'm having bad days and feeling dehydrated. But all of these things not only having me up and down to the bathroom all day and night, but I started developing terrible pain and pressure in my bladder. Urinary pain like you would get with a UTI, but when I would go to the Dr thinking I had one, the tests always came back negative with no bacteria in the urine. The pain and pressue got so bad, I decided to find a Urologist. She said I had every symptom of IC. Haven't heard of it? Here ya go..

Interstitial cystitis,[1] or bladder pain syndrome (commonly abbreviated to "IC/BPS"), is a chronic, oftentimes severely debilitating disease of the urinary bladder.[2] Of unknown cause, it is characterized by: pain associated with the bladder, pain associated with urination (dysuria), urinary frequency (as often as every 10 minutes), urgency, and/or pressure in the bladder and/or pelvis.[3]

The disease has a profound impact on quality of life.[4] A Harvard University study concluded, "the impact of interstitial cystitis on quality of life is severe and debilitating".[5] A Harvard Medical School guide states that the quality of life of interstitial cystitis patients resembles that of a person on kidney dialysis or suffering from chronic cancer pain.[6] The condition is officially recognized as a disability.[6]

It is not unusual for patients to have been misdiagnosed with a variety of other conditions, including: overactive bladder, urethritis, urethral syndrome, trigonitis, prostatitis and other generic terms used to describe frequency/urgency symptoms in the urinary tract.

IC/BPS affects men and women of all cultures, socioeconomic backgrounds, and ages. Although the disease previously was believed to be a condition of menopausal women, growing numbers of men and women are being diagnosed in their twenties and younger. IC/BPS is not a rare condition, however, IC/BPS is more common in women than in men.[3] Early research suggested that IC/BPS prevalence ranged from 1 in 100,000 to 5.1 in 1,000 of the general population. In 2009, new research (now known as the RAND study) revealed that in the U.S alone, between 3 and 8 million people have interstitial cystitis. Up to 12% of women may have early symptoms of IC/BPS.[7]

The symptoms of IC/PBS are often misdiagnosed as a "common" bladder infection (cystitis) or a UTI. However, IC/PBS has not been shown to be caused by a bacterial infection, and the mis-prescribed treatment of antibiotics is ineffective. The symptoms of IC/PBS may also initially be attributed to prostatitis and epididymitis (in men) and endometriosis and uterine fibroids (in women).

The most common symptom of IC/PBS is pain, which is found in 100% of patients, frequency (82% of patients) and nocturia (62%).[8]

In general, symptoms are:
Painful urination Pain that is worsened with bladder filling and/or improved with urination.[9]
Pain that is worsened with a certain food or drink.
Some patients report dysuria (burning sensation in the urethra when urinating).

Urinary frequency (as often as every 10 minutes), urgency, and pressure in the bladder and/or pelvis.
Some patients report nocturia (waking at night to urinate), hesitancy (needing to wait for the stream to begin, often caused by pelvic floor dysfunction and tension), pain with sexual intercourse, and discomfort and difficulty driving, travelling or working.

During cystoscopy, 5 to 10% of patients are found to have Hunner's ulcers.[10] Far more patients may experience a very mild form of IC/PBS, in which they have no visible wounds in their bladder, yet struggle with symptoms of pain, frequency and/or urgency. Still other patients may have discomfort only in their urethra, while others struggle with pain in the entire pelvis.

For the most part, people with interstitial cystitis will either have lots of pain and very little frequency or they'll have lots of frequency and very little pain.[11]

[edit] Association with other conditions

Some people with IC/PBS suffer from other conditions that may have the same etiology as IC/PBS. These include: irritable bowel syndrome (IBS), fibromyalgia, chronic fatigue syndrome, endometriosis, vulvodynia, chemical sensitivities [12] and anxiety disorder.[13] In addition, men with IC/PBS are frequently diagnosed as having chronic nonbacterial prostatitis, and there is an extensive overlap of symptoms and treatment between the two conditions, leading researchers to posit that the conditions share the same etiology and pathology.[14]

The presence of endometriosis has a strong association with typical IC findings on cystoscopy including glomerulations, ulcers, and reduced bladder capacity.[15]


Fun, right? Interesting how it's common in women with endometriosis also. So what's the outlook? Well, for now, I'm seeing a Urologist once a week for six weeks for what they call instillations. They run a small catheter into my bladder and fill it with a mixture of different medications. Not the most comfortable, but hey, whatever works. I also have to cut SO much from my diet. Nothing with citric acid, or course no citrus fruits, no caffeine (so long starbucks), no beer or any alcohol they say, but like I said vodka and white wine don't bother me, so in moderation they will be ok. The only fruits I can have right now are pears and blueberries which I love both but it gets old after awhile. They say tomato based products but I haven't had a problem with those. I love V8 and Bloody Mary's, but I figure it's best to stay away from them just in case. The occasional pasta sauce shouldn't hurt. But, it's yet another life long thing that I'll have to deal with. But, I'm a firm believer in God doesn't give us anything we can't handle. Sure, in the health department I've been given a lot to deal with it. But who knows, maybe it had to happen in order for me to draw closer to him? And I'm ok with that.




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