Have you ever been infatuated with the idea of something that you are not sure that you yourself might ever experience?  Where every time you turn on the television, read a book or listen to the song on the radio it seems that everyone is experiencing something that alludes you.  Most of my female friends, family members, co-workers and acquaintances have experienced the thing that I have not experienced yet seems to consume my mind a lot these days: pregnancy and motherhood.  Some days I resent the questions: Do you have kids?  Do you want to have them someday?  When do you plan on getting married and settling down (the 'settling down' part always seeming to imply motherhood as being that settling down force, as if a woman without kids is unsettled, wild and unruly). 

I am reaching my mid-30s and I love children.  I really do love being around other people's kids but I wonder: Would I be a good parent?  Would pregnancy affect my IC?  Would pregnancy and childbirth bring my IC out of remission?  Will I regret not experiencing motherhood ten years from now?  Am I selfish for not becoming a mother-like so many articles that I've read and comments I've overheard by women who are 'in the know' with children in tow?  Should I proceed with having a child with the knowledge that if I have a daughter that she has a chance of someday having IC?  Do I want to be a mother if that includes being one that is more tired or has IC symptoms on a daily basis?  And then I wonder if I am just looking for excuses or something to place the blame for my indecision (or decision to either not procreate or to wait to proceate) to have a child solely on being an IC patient.

I can't blame everything on IC but how can living with a painful bladder disease for seven years not color my thoughts with yellow for: proceed with caution?  My fiance and I could not be intimate for three and a half of those seven years because of IC and the related conditions of extreme dyspareunia and vulvodynia.  I call them our Lost Years.  While my IC reared its ugly head so many of our friends got married and began having children.  My mailbox (and virtual mailboxes on Facebook and my personal email account) have been flooded with wedding invitations and birth announcements.  Many times I choked back tears as I dashed into Target, hoping their bathrooms were clean and open, haphazardly printing off a gift registry list.  I have purchased a countless number of onesies, too cute for words teeny socks and paraben free nipples.  I have thrown numerous close friends' baby shower's with fun start-to-finish themes from rubber ducks to Noah's Ark, always with the thought in the back of my mind: If I get over IC will I have sex again?  Will I experience pregnancy, birth and motherhood? 

Those thoughts quickly fled as the months turned into years of cruel celibacy.  The silent scream that echoed in my brain for years when ovulation caused cruel labia pain and inflammation-so severe that wearing clothing was as painful as a medieval torture device.  Parenthood was the furthest thing from my mind at those moments of taking things one day at a time as I drove from the acupuncturist's office to meditation classes and then home to make my IC friendly meals.

Those Lost Years are behind me now but I still have some residual IC pain and symptoms like a grey ghost lurking in the shadows.  It is really a difficult decision to make although I know that I now have less years in front of than behind me to consider motherhood as an option.  Ovulation is not the extremely painful monthly reminder loudly announcing that I could have a baby-now is the time that it once was, but it is not a silent event for me and each month I could probably tell you the exact moment that I am ovulating.  IC has taught me so much about my body that I am in tune with the subtle hormonal changes that occur throughout the month.  I think about pregnancy and motherhood more often than I would care to admit these days.  Babies haunt my dreams.  Sometimes my cries echo along with theirs as I remember the intense pain of IC. 

Maybe someday I will make the choice to become pregnant but for now I am happy bearing the fruit of many years of hard work and delivering words of support to people suffering from IC.  It is what I have to offer the world right now and it seems the closest thing to a flesh and blood embodiment of myself.  IC awareness and support is a sad but important child in my eyes.  
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Please mark your calendars for the premiere of MTV's True Life "I Can't Have Sex" which will air on July 22nd at 10:00 PM EST.  One of the participants is a woman who has been living with Vulvodynia and Interstitial Cystitis, which negatively affects her ability to have a 'normal' sexual relationship with her significant other. 

For those of us with IC and Vulvodynia, this show is yet another opportunity for us to share to a much larger mainstream audience the day to day facets of living with chronic and debilitating conditions.  Please let all of your family and friends know and be sure to watch this episode on MTV next month.  There are still countless people who have never heard of IC and related conditions (as well as those who do not believe that this conditions exist) so this is a great opportunity expand awareness, promote education and awareness and support people living with these conditions.  Perhaps you might have a premier 'party' at your home and provide only the foods that you can eat as an ICer as a way to show how IC affects you? 
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Some women with IC experience a worsening of their IC symptoms the week prior to their periods, while others experience horrendous periods which further flares their IC.  Personally, when my IC was at its worse, the worst part of my cycle was during ovulation which was marked my intense painful labia swelling which could last for three to five days.  Wearing clothing was unbearable and there wasn't much to ease the pain. 

With some work with a TCM doctor, herbs, diet and acupuncture (three hard years of work) my ovulation pain is minimal to non-existent and now I am working on my moon time (period) pains.  I have found a list of natural products and exercises to be helpful during this time:

  • Rest
  • Extra intake of water
  • Take one Aspirin the day before moon time is supposed to begin (do not take if you are allergic to Aspirin)
  • A warm bath or shower if cramps are severe
  • Eating smaller meals such as crackers and bananas which are high in potassium, which studies have shown is effective to ease cramping
  • Take natural herbal formulas for cramping such as Cramp Relief! by Wish Garden
  • Some might find that a cold or ice pack on the lower back or stomach to be helpful
  • You can use a little bit of Yin Care on a cotton ball or cloth to help you feel more deodorized
  • Don't forget to only use moon time products that won't flare up your IC /Vulvodynia such as pads and tampons made by Natracare (made from 100% organic cotton)
  • Drinking raspberry leaf tea
I hope that you are able to find the products and exercises that will ease both the pain of your moon time and of your IC.  Allow yourself the chance to relax and seek out health care providers that support you and your health decisions.

I am woman!  I am invincible!  I am pooped!  ~Author Unknown
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Living with IC is painful and difficult enough, but add to that a disease where your vulvar area is raw, sometimes inflamed, and never ever ever "in the mood" due to pain is a nightmare.  When my vulvodynia was at its worse I was at my most suicidal.  I felt mocked by TV commercial ads for condoms, lubricant and romantic weekend getaways.  Most friends and family could never understand having a painful condition occuring in my most feminine of places, so I seldom bothered bringing it up in conversation.  Why bother?  It was too sad and depressing to do so anyway. 

When I was ovulating, my labia became red, raw and inflammed.  The pain was unbearable.  Wearing clothing was a medieval torture device, but past quitting my job or going to work naked, I had little choice but to put clothing on, while all the while I was screaming inside.  Losing the ability to be intimate with the love of my life was the last straw.  I'm surprised that we are still together today as I know most men would not stick with a mate that they can not have sexual relations with.  Being a sexual being that was only in my 20s when vulvodynia struck was a horrific blow.  I am overjoyed to report that my vulvodynia pain and symptoms are about 90% improved so I want to share what helped me get this point (Please note: this process took 4 years):
  • acupuncture
  • yeast free diet
  • yogurt inserted vaginally during flares
  • douching with goldenseal or Yin Care (now available through amazon.com)
  • meditation
  • using non-chlorinated feminine products (natracare)
  • wearing 100% cotton underwear
  • using Cottonelle kleenex for sensitive skin with Vitamin E and Aloe
I hope this list is helpful if you suffer from vulvodynia.  My heart breaks knowing the countless number of women suffering from this sad and painful condition.
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Vulvodynia was the featured topic on the prime time show Dr. Oz.  I was elated that this oftentimes hidden disease is finally coming out into the open in the United States.  Just like IC, vulvodynia affects millions of women in the U.S. alone but because the disease occurs within a woman's vulvar region, most women do not discuss with anyone that they have this painful and debilitating disease.

I was glad that the Dr. Oz show explained to all of its viewers the symptoms, possible causes, and treatment ideas for women suffering from vulvodynia.  I wish that some emphasis (at least a word or two) had explained the correlation between vulvodynia and fibromyalgia and IC.  There is still work to be done to spread the word about these diseases that are interlinked and affect millions of women. 

I too suffered unbearable, spontaneous vulvar pain when my IC symptoms were at there worst.  I think vulvodynia occured when I went on the incredibly strict anti-yeast anti-fungal diet to help rid my body of yeast and toxins.  Some doctors believe that in addition to genetic components that women with vulvodynia have yeast overload in their systems (same as women with IC. Interesting, huh?)  My vulvodynia symptoms include: pain during and after sexual intercourse, vulvar pain on contact, intense labia swelling and pain during ovulation, and an increase in vulvar pain after urination (probably occured when large amounts of yeast in my urine touched my urethra during urination).  A close female relation to me has been secretly suffering from severe vulvodynia pain and symptoms for twenty years.  We both cried after watching the Dr. Oz special on vulvodynia.  My heart goes out to everyone currently suffering from vulvodynia, and I hope that treatments that help everyone will be available soon. 

http://www.nva.org/
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