Listening To the Feelings and Needs of IC Patients

This is a review of the summary of responses that we received from IC patients who were willing to spend their time to discuss the distressing pain of IC as well as the repercussions of the pain  Dr Bill also was able to interview more than 50% of the survey respondents who graciously gave their time to talk with him regarding their difficulties with the dis-ease

Survey Results

Here are the questions:
1 What’s your biggest frustration with interstitial cystitis?
Most common response was the unrelenting pain
2. What have you tried so far that hasn’t worked for you?
This was the entire gamut from mainstream urology to all forms of alternative therapies

DMSO with and without hydrodistention Most reported significant pain
Botox
PT Pelvic floor therapy
Tens unit
InterStim
Acupuncture
Tirgger point injections
Antibiotics
Diet
Meditation
Medication Elmiron hydroxyzine detrol amitryptaline prozac vag suppositories
Lyrica urelle (1 respondant) homeopathy pyridium neurontin vicodin
Vitamins
General categories antispasmodics pain meds instillations antidepressants
3. What’s your biggest fear when it comes to interstitial cystitis?
That there is no end to the pain and never to have a normal life again; fear of embarrassment of not being able to make it to a restroom in time; bladder failure; loss of intimacy
4. What worries you – what are you afraid will happen if you don’t do something immediately?
The pain will get worse; possibility of losing one’s mind; embarrassment
5. What would you be willing to do to improve interstitial cystitis?
Anything almost universal response
6. If you could have one question answered about interstitial cystitis, what would it be?
What causes this dis-ease?

Interviews – Quotes from IC patients

The interviews carried out tell a much more in depth story of the incredible suffering that goes on in a person’s life with this dis-ease  Listen to some quotes:

“Intuitively I believe I am producing IC but I don’t know what it is that I’m doing to cause my pain”

“Imagine doctor, that someone puts a lit torch up your penis and then asks you to function during the day without being distracted by it  The problem emotionally feels that there is a giant millstone around the neck”

“There is NO ESCAPE from IC  It’s there every morning to greet my day  It invades every area of my life   My marriage, friendships, children, all my relationships   My SANITY   It is an invisable enemy, as I look great on the outside but suffer un-bearably at times on the inside  Which of course NO ONE can see”

“I urgently rush to the toilet barely making it, a small amount of voiding occurs I stand up and as I pull up the zipper  I feel like I have to go again It’s a miserable feeling”

“At my worst I want to die”

“Everything worries you when you have IC”

“That the pain gets out of control, I stress, I cry and then it gets worse because of the acid pouring into my bladder”

“Takes a toll on my soul”
“With cancer either get better or die  With IC there is no end to the symptoms  Suffering goes on and on  Most chronic disesases don’t give symptoms  There is at times tremendous compassion from urologists and doctors but they can’t do anything about it”

Interviews – Stories

There were stories as well  About a mom being at a soccer game watching her son but in extreme pain because there was no public restroom nearby  Or the fear of not being able to attend your daughter’s wedding because the pain was so severe  There was the story of attempted suicide due to loss of desire to continue to live due to the unrelenting pain and loss of relationships

Almost all interviews underscored the lack of understanding by those close as mirrored in the quotes  Also there was a sense of hopelessness shared not only by the IC patient but by their physicians and urologists since the dis-ease is treatable but not curable  Disillusionment occurs with treatments since therapies fail – one more hope dashed

Loss of womanhood surfaced a number of times There was feeling that even though attractive, one was “damaged goods” and that intimacy was dead Failed relationships occur due to lack of understanding spouse

Inability to plan times with their children, make social outings with friends, and the interference of career, sometimes leading to the end of one There was an underlying theme by many of guilt, feeling that they had in some way causing their problems

Needs Being Met

Freedom was the common denominator when questions about needs came up  It seems obvious but there are so many aspects of what freedom meant to the interviewees  Such things as “Life would have potential again so we can fulfill our purpose and ambition” and “Miraculous if I could be normal cant be in the Jacuzzi because afraid of UTI”

There was also the aspect of being able to contribute again with comments such as “Would revisit purpose of life because with IC I lose perspective about life and purpose” and ”Life would have potential again so we can fulfill our purpose and ambition”

Due to the pain some felt that they “would develop trust in making decisions because with pain symptoms you’re making decisions based on pain”  So there would be better mental clarity and judgment with the loss of pain

Summary of the Summary

This is not meant to be a litany of sadness but an understanding of those afflicted with this dis-ease It is one of sadness, despair, despondency, and misery  All of this can be summed up with great compassion and empathy for those who have this imbalance

There is help for you   Get the free report right now by putting in your email and get the free report to start a new beginning in getting rid of IC in your life

And try a free consultation by clicking on this link with Dr Bill who can outline a plan for you that can begin helping you alleviate your pain

To Health as a Skill       Love DrBill