Find us on:

Finally Off The Couch: LDN Relieved Laura's Interstitial Cystitis

Laura Dysart
March 08, 2018

Interstitial Cystitis:

Interstitial cystitis is a chronic condition causing bladder/pelvic pain and pressure, and may feel like a chronic urinary tract infection (although there's usually no infection present). The pain generated by the condition can range from mild to severe discomfort. It can cause the feeling of a need to frequently and urgently urinate, though often small amounts, throughout the day and night (up to 60 times a day). Exacerbations in the condition, typically called "flares," can occur in response to triggers such as menstruation, sitting for a long time, stress, exercise and sexual activity. The condition can have a long-lasting impact on quality of life and there is no known cure.

Laura, please tell us a little about the history of your interstitial cystitis.

Three and a half years ago I began having severe lower abdominal pain, similar to labor pains with frequent sharp stabbing pains. Seven doctors and two surgeries later, I got a diagnosis of Interstitial Cystitis.

How had it affected your daily life?

Most of my days were made up of going to work, watching meticulously what I ate and drank, then coming home to the couch, heating pad and Percocet at some point. Many sleepless nights have been spent in a hot bath to get relief.  My pain level was consistently 5 to 6, and fllares, which were often, would be a pain level of 8 to 9. My local urologist rated the severity of my IC at 75-80%. It interfered with family time, and limited the traveling I liked to do with my boyfriend.

My pain level was consistently 5 to 6, and fllares, which were often, would be a pain level of 8 to 9.
What treatments had you tried?

I have tried so many different treatments I’ve lost count. Among the treatments I tried were a strict IC Diet, Macrobid, physical therapy, vaginal valium, hot baths for extreme flares (at one point this was nightly about 2:00 a.m.), Elmiron, Pyridium (Azo) 3- 4 x daily, Urogesic Blue, Neurontin (for the nerve pain); chiropractic adjustments, Tinzanidine, Prozac, Flexeril, and Cymbalta. Some of those treatments helped a little, some not at all.

How did you find out about LDN?

Recently I was at an appointment with Dr. Blaine Purcell of the Institute of Bioidentical Hormone Replacement Therapy in Wichita Fall, Texas. I was discussing with his staff and him all of the things I’ve tried and my frustration with little to no relief. He suggested I try LDN, and at this point I thought, why not? I’ve tried literally everything else.

What dosage LDN have you taken and do you take now?

We began my dosage at .5 mg every evening at bedtime then increased every 3-4 days until I got significant relief. I am now at 4 mg every evening and the improvement is astonishing.

How did you feel once you started the LDN?

I started taking the LDN in December 2017. I noticed within a few days that I began to feel better and saw a noticeable difference in pain levels. My boyfriend even commented that since I've been taking the LDN, I'm more like my old self. With each increase in dosage I continued to improve. When we reached the desired dosage of 4 mg, I was seeing significant improvement in my daily symptoms. I am now three weeks at full dosage and it has changed my life- returning it close to what it was like before the IC began.

My boyfriend even commented that since I've been taking the LDN, I'm more like my old self.
How have LDN’s effects made the biggest impact on your life?

I would say the biggest changes in my life since starting LDN are that my pain levels are now a 0-1 on most days, and even when I have a “flare” now, my pain rating would be only a 3-4. It’s been 3 weeks since I’ve had to take a Percocet for the pain. Since starting LDN, I am becoming more active again, enjoying travel with my boyfriend, and spending more time with my grandson and granddaughter. I am also staring to venture out to try eating and drinking a few things I haven’t in a few years. I still avoid the foods that cause the most severe symptoms, but am again enjoying things like mild Mexican food.

Since starting LDN, I am becoming more active again, enjoying travel with my boyfriend, and spending more time with my grandson and granddaughter.
Have you experienced any negative or positive side effects from LDN?

I have not experienced any side effects with the exception that if I miss a dose it causes extreme nausea. The “positive side effects” of LDN are that I can now make long range plans and, for the most part, not have to worry about cancelling them for a date with my heating pad or bathtub.

The “positive side effects” of LDN are that I can now make long range plans and, for the most part, not have to worry about cancelling them for a date with my heating pad or bathtub.
What message would you like to send to those suffering from IC?

If you’ve tried everything else, give this a try. What do you have to lose? If you’re new to this journey, find a doctor that knows about LDN and give it a try. Be proactive about your care. If you don’t fight for your health no one else will. If you’re not being listened to – keep searching for a doctor who hears what you’re saying. I am grateful for Dr. Purcell, his staff at IBHRT & specifically for LDN.

More about Laura:

I love life and am reminded often that it doesn’t take looking very far outside yourself to find someone who has things more difficult. In the past few years I've made some significant life changes, all very positive. I am looking forward to a positive future; traveling with my best friend/boyfriend and watching my grandchildren grow. I love reading, gardening and caring for friends & family. I feel like LDN has given me hope that my IC won’t dictate her life my longer, but instead just be a side note. If you have any questions about my experience, you are welcome to email me at [email protected]