Sjögren’s and Interstitial Cystitis

Several years ago, in 2012, I began to have some issues that confused the heck out of me. I was having some urinary symptoms such as feeling like I had to go all the time, lower pelvic pain, and oftentimes feeling like I could not quite empty my bladder. These symptoms would wax and wane and were episodic in nature. I would go to the doctor and often, I would get treated for a urinary tract infection (UTI), even though my urine sample was always negative. However the symptoms I was experiencing seemed like they were classic UTI symptoms.

Around the time of my wedding in Spring 2013, the symptoms were acting up, but it was the months between my wedding and honeymoon that were the worse. The pain was relentless and had actually become crippling at times, I constantly felt like I had to urinate. During this time I saw a urologist in western Massachusetts. I had found some information in The Sjögren’s Book by Daniel Wallace which pointed to the suspicion that my symptoms may be related to something called Interstitial Cystitis (IC). The doctor’s appointment was a nightmare. He insisted that this was not the issue and furthermore, IC is not at all related to Sjögren’s syndrome.

Well, things were getting worse by the week and I realized that I couldn’t go back to that doctor and I needed help. I did my own research and ended up in the urology clinic at Lahey Clinic in Burlington, Massachusetts. These doctors were top notch in the urology world and by the end of the first visit, they told me I likely had IC. As an aside, I highly recommend Lahey Clinic and this was also a perfect example of how important it is to advocate for your own health care. They put me on a bladder medication and had me radically change my diet to avoid foods with high acid content, as that can make IC much worse. I got no relief from the medication and minimal relief from the diet.

One month before my honeymoon, they brought me to the operating room and did a procedure called a hydrodistention with cystoscopy. Typically, you can see an indication of IC during this procedure and although the doctor did not necessarily see what he was looking for in terms of diseased areas, they went ahead and did the hydrodistension part of the procedure to flush away any inflammatory cells that may be present.

I did unbelievably well with the procedure and my symptoms disappeared. Since that procedure in August 2013, I have had a few very minor pain flare-ups with my bladder, but I can always correlate it with an increase in acid in my diet. As soon as I fix that, I am good. I am firmly convinced that  the Lahey Clinic they did was what got me on the road to recovery and since then, I have tried to be very vocal about the possibility of having IC with Sjögren’s so that more Sjögren’s patients like me don’t suffer more than they need to. Especially since that first urologist I saw was so uneducated and uninformed.

I was delighted to open up the February 2015 Moisture Seekers newsletter last week to see an article about Interstitial Cystitis. Because the article is so well done, I am going to reprint it below for your information:

Intersitial Cystitis (also known as IC) is a chronic bladder condition that usually consists of recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, urinary frequency (needing to go often) and urgency (a strong need to go). IC also can be referred to as painful bladder syndrome (PBS) and chronic pelvic pain (CPP). The exact cause is unknown, but researchers have identified different factors that may contribute to the development of the condition.

About 25% of IC pateints have a definite or probably diagnosis of Sjögren’s and as many as 14% of Sjögren’s patients are estimated to have IC.

Some things you can do to control your IC include:

1. Avoid or limit foods and beverages that may irritate the bladder, including coffee, tea, soda, alcohol, citrus juices, and cranberry juice. For some, spicy foods may be a problem as well as foods and beverages containing artificial sweeteners.

2. Apply heat or cold over the bladder or between the legs to alleviate some pain.

3. Modify or stop Kegal exercises which may make pelvic floor muscles even tighter.

4. Avoid tight clothing to prevent further irritatiion and restricted blood flow to the pelvic region.

5. Treat constipation.

6. Develop healthy sleep habits as sleep is crucial for pain control.

7. Adjust fluid intake. Increase or decrease depending on your situation.

8. Retrain your bladder by learning to urinate on a set schedule and not when your bladder tells you.

9. Find healthy ways to manage your stress since it may make IC symptoms worse.

10. Find, in advance, the locations of restrooms along your route when traveling.

11. Get active! The health of the bladder depends on good blood flow to the area and having flexible and strong muscles around your bladder and other pelvic organs to protect and support them.

12. Quit smoking. Cigarettes may irritate the bladder and worsen the pelvic and bladder pain.

13. Take a trial and error approach to treatment as no one treatment works for everyone. A combination of treatments is often necessary to get your IC under control.

14. Track how your symptoms change with treatment and speak with your healthcare provider if you think a therapy is not working.

Visit the Interstitial Cystitis Association website at www.ichelp.org for the most up-to-date and accurate information about IC and to find knowledgeable healthcare providers.

******Reprinted from The Moisture Seekers, Volume 33, Issue 2, February 2015.*****

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