October 31 has been designated as an awareness day for IC because so much isn’t known about it. The hope is that this will help women (and men) who may have this problem may recognize themselves and realize that they are not alone.

Symptoms

The symptoms of IC include (from MayoClinic.com):

• A persistent, urgent need to urinate.
• Frequent urination, often of small amounts, throughout the day and night. People with severe interstitial cystitis may urinate as often as 60 times a day.
• Pain in your pelvis (suprapubic) or between the vagina and anus in women or the scrotum and anus in men (perineal).
• Pelvic pain during sexual intercourse. Men may also experience painful ejaculation.
• Chronic pelvic pain.

Diagnosis

Doctors don’t know what causes IC and because of this, it’s quite difficult to diagnose and treat. Diagnosis is done, more or less, through exclusion. Once your doctor has ruled out anything else it could be, the diagnosis of IC may be made.

Treatment is difficult but is done by treating the symptoms.

Medications: Medications to help reduce inflammation and pain may be the first step. Other medications, like certain antidepressants, have been found to be helpful for certain types of chronic pain.

Bladder instillation: This is done by inserting a catheter (long, narrow tube) is inserted through the urethra into the bladder. A medication is then injected into the bladder and retained for about 15 minutes or so. The medication is then drained and the cycle repeated every few weeks if you obtain relief.

Transcutaneous electrical nerve stimulation (TENS):  Mild electrical impulses have been known to relieve pain in some situations. Some people with IC find relief from their symptoms.

There are some self-help treatments as well. The Interstitial Cystitis Association discusses diet, self-help, and over-the-counter medications.

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Post from: Blisstree

Interstitial Cystitis Awareness Day

Researchers have found that between 18% to 33% of people who have interstitial cystitis (IC), also caused painful bladder syndrome, have been sexually abused. According to a study published in the Journal of Urology, women with IC who have been sexually abused feel the pain differently and have other symptoms compared with women who don’t have a history of sexual abuse.

Researchers studied 121 women who had IC; they found that 32 women reported that they had been sexually abused earlier in life. Sexual abuse ranged from rape to inappropriate touching. Interestingly, the women who had been abused voided larger amounts of urine than those who had not been abused. The researchers also found that the abused women didn’t urinate as often during the day or night. They did, however, have more pain above the pubic area, and in the vulva, vaginal, cervical, and rectal areas.

Information like this is important for physicians. If physicians understand that women with sexual abuse had a different presentation of IC, they may be better able to detect and diagnose it, rather than falling on the typical criteria.

Speaking out about sexual abuse isn’t easy, but your doctor really should know because it could impact a lot of health issues, including this one.

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Tags: chronic pain blog, pain blog, interstitial cystitis, painful bladder, painful bladder syndrome, sexual abuse, sexually abused, rape, inappropriate touching

Post from: Blisstree

Interstitial cystitis differs if you’ve been sexually abused

Company’s Calling, a popular Monday feature, hasn’t appeared for a while because I ran out of volunteers who wished to be interviewed. I would love to get the feature going again because I get emails (and comments) from people who appreciate learning how others have dealt with and who are dealing with their issues of chronic pain.

When people are living with chronic pain, they often feel alone – and we definitely know that they aren’t. Would you or someone you know be interested in sharing your story? You can remain anonymous if you would like and you can answer the questionnaire or write up your story as you feel is right for you.

Here are some great examples of previous Company’s Calling features:

• Company’s calling - Janine Shepherd
• Company’s calling – a different type of visitor
• Company’s calling: For Grace’s founder, Cynthia Toussaint speaks out
• Company’s calling – an RN speaks about her fibromyalgia
• Company’s calling – living with the pain of interstitial cystitis
• Company’s calling – the road to a diagnosis for endometriosis
• Company’s calling – a retired surgeon speaks about his nerve pain

If you think this may be something you would like to do, please email me at marijke.durning@b5media.com or leave a comment below and I’ll get in touch with you.

Image: iStock

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Post from: Blisstree

Call out for Company’s Calling participants

Is anyone experiencing I.C. (interstitial cystitis), IBS (irritable bowel syndrome) & vaginal bleeding? You are not alone. I’m on Elmiron, have been suffering for many years. I’m already past menopause. As if these are not enough, also I’m on medication for high BP, high cholesterol, diabetes & thyroid cancer, thyroid gland taken out, followed by radiation treatment twice.

Marijke here: Do any of you have any of these issues and if so, what are your experiences? Has anyone else tried Elmiron?

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Post from: Blisstree

A readers asks us about interstitial cystitis, IBS and vaginal bleeding

My lady isn’t home. There was no-one to visit with.

Please keep her company next week – if you have a story to share, email me and we’ll get going on it.

For those of you who are new to the Company’s calling feature, here are some previous Company’s calling interviews:

• Company’s calling – living with the pain of interstitial cystitis

• Company’s calling – living with migraine pain

• Company’s calling – the road to a diagnosis for endometriosis

• Company’s calling – a journey with fibromyalgia

• Company’s calling – another migraineur speaks out

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Image: iStock.com

Technorati Tags: Company’s calling,interstitial cystitis,migraines,endometriosis,fibromyalgia,migraineur

Post from: Blisstree

Company’s calling… what’s wrong with this picture?

The American Academy of Physical Medicine and Rehabilitation has published this drawing for physicians to use to help them to better understand their patients’ pain. Click on the drawing to go directly to their site’s image to get their PDF image.

Technorati Tags: pain drawing,describing pain,descriptions of pain

Post from: Blisstree

Pain drawing to help you and your doctor

This week, we welcome Sandy Robinson, a wife and mother, from Pennsylvania. She talks to us about her life with interstitial cystitis, which is her third chronic illness; she also has fibromyalgia and chronic fatigue syndrome. She has her own website at http://www.fightingfatigue.org, and forum, http://www.fightingfatigue.org, for people with CFS, fibromyalgia and interstitial cystitis.

Can you tell me about when you first started experiencing the pain and what kind of pain it was?

I first started experiencing severe symptoms of Interstitial Cystitis four years ago. I also have Chronic Fatigue Syndrome and Fibromyalgia and at the time I was having a flare from both of those illnesses that had me bedridden.

I was having trouble breathing and I was having chest pains (later found out it was related to the CFS & FM) and my doctor ordered a cardiac stress test. My IC symptoms started that night after I completed the stress test. I had severe pain in my lower abdomen and pelvic region that was so bad I could hardly walk. I thought that I was just getting another bladder or UTI because I have had at least two of these a year since I was a pre-teen. The symptoms didn’t go away and I continued to get worse. I experienced urinary frequency every 10 – 15 minutes, pain and pressure that were so severe I would lay in the fetal position most of the time. Each trip to the bathroom was as though someone was taking a razor to my vaginal area. The urine burned so bad coming out I would cry. I couldn’t walk for more than a few feet and the only way I could go shopping or get groceries was to ride in an electrical cart.

Did you seek help right away? If so, what type of help and, if not, why not?I immediately called my family doctor for an appointment, thinking at first that it was just another infection. As the days went on I knew there was something else wrong. The pain had spread to my left side and it was very bad. I was also experiencing vaginal bleeding. My family doctor checked for a UTI or bladder infection and was surprised when the results came back negative. I was then sent for a CAT scan of my kidneys and that test came back okay. She still treated me with antibiotics and thought maybe the tests were just not registering correctly. I took the required antibiotics but still the symptoms were just as severe.

After several trips to the ER and my family doctor, I had a family member who had IC Disease. She said my symptoms sounded exactly like hers and she gave me the name of a local urologist. I made an appointment, but I had to wait two months before they could see me. The urologist diagnosed me with Interstitial Cystitis.

What did the doctors tell you when you did seek help?

She thought I had an infection that was not being detected by antibiotics. The urologist immediately suspected Interstitial Cystitis. He scheduled me for an outpatient surgery called a cystoscopy where, under anesthesia, the urologist stretches the bladder with water to see if hemorrhages appear on the bladder wall. With the other symptoms plus evidence of these “Hunner’s ulcers”, that is how it was diagnosed.

What have you tried to help you with your pain?

The pain was so severe in the beginning that I could not find any relief. The urologist would not prescribe me anything stronger than Ultram and that was worthless. It didn’t seem to matter how severe I told him the pain was he wouldn’t give me anything stronger.

One thing that I did do later that helped short-term was to take warm showers, letting the water run over my lower abdomen and my lower back. That helped for a few hours.

I had to go on painkillers because my Fibromyalgia and CFS pain was so bad throughout the rest of my body. My CFS/FM doctor put me on Vicodin and Darvocet and that combination did help to dull the IC pain but it was still pretty bad.

Can you tell me a bit about what worked and what didn’t?

When my illness first began, nothing helped. I couldn’t even drink purified water without having severe bladder pain. I used to drink a lot of diet soda and I had to completely give that up. Once I was off soda for a while I was able to drink water without any problems. Heating pads and warm showers helped. Vicodin and Darvocet helped. I had to avoid all spicy foods, ketchup, orange juice – anything acidic. I purchased some marshmallow root tea from the local health food store and that helped a lot.

My urologist tried me on many medications and Elmiron finally started helping some. I was also catheterizing myself daily with bladder numbing medication to get relief. That helped, but it was not a fun experience!

How does having this pain make affect you in terms of how you live your life?

Chronic pain is very emotionally taxing as well as physically. I became very depressed and thought there was no way I could live much longer dealing with all of this pain. Having CFS and Fibromyalgia was overwhelming in itself, but I had been dealing with those illnesses for many years so I had learned how to cope. Then IC happened and I didn’t know if I could deal with three chronic illnesses. I went through a phase where, if I wouldn’t have had a child and husband to think of, I probably would have committed suicide.

I have since learned and made the realization that this is my life. It’s not fair, but it is what I have to deal with. I have to make the best of what I have to work with and I need to turn a bad situation into something good and try to help others.

I had to give up my career and go on Social Security Disability, so that was a big change for me. I have always identified who I am by what I accomplish. When that was all taken away I had to learn who I was all over again without work.

I think being chronically ill has also made me stronger in a sense. If I can deal with all of this stuff, I can make it through anything.

If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?

I think I would have insisted more in the beginning of my illness that the urologist see me sooner. I suffered terribly for two months waiting to get in to see him. I shouldn’t have had to do that. I don’t really think there is anything else that I would change. I feel as though I did and tried everything to help that was available to me at the time.

What would you say to someone in a similar situation who is just starting to try to find treatment and relief?

Know that you are not alone. There are many out here suffering and there is light at the end of the tunnel. For most IC patients, the severity of the symptoms dies down after about the first year. There will always be flares but most of us live fairly normal lives.

Ask questions and find online support groups. I started my own forum, http://www.fightingfatigue.org/forum, so that people would have somewhere to go to ask questions and learn how to deal with their illness.

Try to keep a positive attitude and use your suffering as a way to reach out to other people. Start a support group, start a website once you are able – don’t let the illness beat you down. Fight and fight hard.

Sandy, this was incredibly helpful and educational. Many women (90% of people with IC are women) have this disorder and have discussed it with their doctor because of embarassment. I hope that posts like this will help people with IC or who suspect they have IC know that they are not alone. Thank you for taking the time to visit with us.

Post from: Blisstree

Company’s calling – living with the pain of interstitial cystitis

Uncontrolled pain makes life very difficult sometimes. Feeling that your doctor isn’t helping manage it properly is frustrating. Besides changing doctors or trying to educate your doctor about what you need, there isn’t much you can do.

One of the problems with doctors and adequate pain control is the fear of using opioids or narcotics. The fear stems from concern that patients may become addicted but it also stems from doctors not really understanding what opioids to prescribe, at what doses to prescribe them, and how often they can be given.

To address this, The Federation of State Medical Boards Research and Education Foundation (FSMB) in the United States has made available a new handbook with the goal of improving both acute and chronic care management. The handbook, Responsible Opioid Prescribing: A Physician’s Guide, are to be distributed country-wide and can be customized for each state in respect to their laws and regulations.

Here’s to hoping that this makes a difference in some lives.

Post from: Blisstree

Do you think your doctor could do a better job of managing your pain?

Interstitial cystitis (IC), often called painful bladder syndrome, is a bladder condition that affects around 1 million people in the United States; 90% are women. A study done in 2005 estimated that up to 12% of women in the US have symptoms of IC.

According to the National Kidney and Urologic Diseases Information Clearinghouse, “Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. The symptoms vary from case to case and even in the same individual. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate (urgency), a frequent need to urinate (frequency), or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties. Women’s symptoms often get worse during menstruation. They may sometimes experience pain with vaginal intercourse.”

IC is not curable at this point, but there are some treatments that can provide relief from the pain and discomfort for some people. Treatments range from restricting what you eat and drink (to decrease acidity and irritation) to pain medications or even inserting numbing medications through the urethra into the bladder through catheterization.

Many people who have IC do not talk about it, they don’t want to discuss their problems. Unfortunately, some who do seek help are not receiving the proper treatment or even understanding. Sadly, one statistic I found was that people with IC have suicidal thoughts 3 to 4 times higher than the American average.

We know that chronic pain, chronic disability can cause a host of other problems. It’s all that much worse when you have a problem you feel you can’t discuss with others.

Post from: Blisstree

Interstitial cystitis – little known but causes lots of pain