Friday, July 26, 2013

PAIN AND SHAME

Up with the birds this morning. Still having a lot of pain but I was able to sleep and awaken at a reasonable hour.  I am going to introduce a new but related topic today. I have been in Knoxville, Tennessee for the past two days undergoing tests with Dr. Jeffrey Dell. He is the leading specialist in the United States (US) on interstitial cystitis (IC). This is a fairly new diagnosis that, according to his study, at least 35% of all women in the US and a smaller percentage of men experience. IC is usually misdiagnosed in the early stages that occur during in a person’s early twenties. There are many theories about its cause. I will include below a few websites I found helpful and appropriate.

Yesterday, the tests done by Dr. Dell confirmed what Dr. Robert Echenberg of Bethlehem, Pennsylvania diagnosed three years ago. I have IC, which means that I need to pee every 8-12 minutes on a bad day and on a good day I pee every 30 minutes. It means that it feels like my pelvic area has been filled with broken glass and every time I move the glass shifts and cuts. It means that I have muscle spasms in places I did not know I had muscles. On bad days my core muscles spasm so hard that I cannot stand up straight.

The test Dr. Dell administered yesterday found 2 Hunner’s ulcers inside my bladder (that really hurt). Think about skinning your knee and having that abrasion on the inside of your bladder and every time your bladder gets the tiniest bit of urine in it, it feels like acid is burning through your entire genital region. This is not imaginary pain as so many doctors told me as I tried to find treatment and relief for well-over 7 years.

There are many theories about what causes IC, again, check out the links below, but a large percentage of women who have IC were very athletic in their younger years and were taught to “play through the pain” so when they felt the vague sense of fullness and ache in their pelvic area they ignored it until it started to stop them.
Sometimes it takes an injury in later years to awaken the IC monster. It is almost always linked with pain during heterosexual, vaginal, intercourse. Here is how it is related to teen parenting, it is almost always associated with trauma and/or stress; the trauma of vaginal births at a young age, rape or sexual abuse, and/ or sports related groin injuries.

It almost always presents as a urinary tract, bladder or kidney infection that comes back negative for bacteria. Doctors informally refer to this as honeymooners syndrome. It means that as couples first have sex they exchange naturally occurring bacteria that live in their bodies with one another and, for women, the bladder usually tells the body that it had been attacked by foreign bacteria, which it has. The body will then start to treat itself for the infection, for that is what it is. Treating with antibiotics is the usual process for addressing urinary, bladder or kidney infections but if you have IC the pain will stop while you are taking the antibiotics but it comes right back when the course of treatment is finished. Thinking back to the discussion of statistics, I wonder how many teen mothers are also survivors of rape or other sexual violence. If you know it share it. Closing thought on IC for now: if you have any of the symptoms I have described and doctors are telling you there is nothing wrong - go to another doctor. If you are on public assistance of any kind, you may feel that your options are limited, I know I felt that way, but the doctors who work in this area are extremely compassionate and may very well work with you on payment options. It may take a lot of persistence and legwork but it is well worth it. Read through the information on the websites linked to below and if you have any questions you can post them on this blog. We can offer the help of the community in the form of sharing our experiences. Please do not confuse what I have just written as medical or legal advice.

It is surprising to me that I can write as much as I do in 30 minutes. This may be because I am working out what is true for me and so I am not focused on the clock; I am focused on the thoughts. Make no mistake, what you are reading is NOT what I wrote in 30 minutes. This has been revised and rewritten several times. No one can write a perfect first draft. THAT is a myth. You may even find typos in what you are reading because at this point I have no one to proofread and edit for me, so I do it myself. On a side note, proofreading your own work is not effective because your brain “knows” what you meant to put on the page and that is what it “sees” even if it is not there. It will read right over typos. Cool, huh? Yeah, but also frustrating. Writers need at least two pairs of eyes.

I think that writing a blog that I make public is a lofty goal. But, I web surf and I see that anybody can write a blog and almost everyone does. The number of blogs on the Internet is somewhere in the millions. There is a blog for everyone, it seems. I do not want to shift the focus of this blog by introducing my IC. If the statistics are even close to being accurate then a lot of teen parents are on public assistance of some kind, are probably feeling trapped in that lifestyle and may be living with the pain and shame of IC. Yes, I said shame. On the questionnaire Dr. Echenberg uses to determine if someone has the potential need for treatment of IC he asks if you ever feel like this pain is payback for something you have done and if you feel shame about that experience. My answers were yes and yes.

I felt that because I had used my body inappropriately, getting pregnant too young, partying, being raped by a stranger, and being abused by a family member. I was deeply and truly ashamed of all of these experiences and held myself responsible for them. Shame was my constant companion. It drove my decisions and my behavior. It made me feel “worthless”, my grandmother’s favorite word to describe me even as I worked on my Ph.D. and I believed her for way too long. I no longer believe the pain of IC is a reflection of my character.

When I thought about it, I was a young athlete. I lettered in track and swimming as a freshman in high school, I played intramural softball well into my thirties. I had a lot of injuries to my groin, knees and ankles. I found that there were a number of reasons I may have been predisposed to suffer with IC being a teen parent was the least of them.

I am glad I have a goal, even if it is lofty. I am glad that I awakened at a reasonable hour. Let’s all have a fulfilling day-whatever that means. Check out some of the links below.

This provides a very good overview from a top-notch medical institution

This is a well-respected national association; also look for support groups in your area.

This is the ichelp page on Hunner’s ulcers

This link goes to the site for the Institute that Dr. Dell runs

This link goes to the site that Dr. Echenberg runs