I stayed up until midnight last night reading "Secret Suffering: How Women's Sexual and Pelvic Pain Affects Their Relationships" by Susan Bilheimer and Dr. Robert J. Echenberg.  I did not plan to stay up that late reading but I devoured this book, my heart and spirit devouring every word, pelvic area illustration, and countless interviews by women suffering from chronic pelvic pain (CPP) and how this pain affects their lives, jobs, emotions, relationships, like rain soaking into the dry soil of my soul.  This book is well-written, empowering and compassionate and finally gives a voice to the millions of women suffering from severe pain in their most intimate body parts. 

Susan Bilheimer, the author, has suffered from CPP for many years and her personal story of suffering and how it affects her relationship with her husband is woven throughout the book.  It is her complete understanding of how completely CPP encompasses every aspect of her life and her passion to tell the stories of other women suffering from CPP that this book was written and we should all thank her both for her courage and her tenacity for both writing the book and collaborating with so many incredible medical experts from psychologists to urologists to the book's co-author Dr. Robert J. Echenberg (who was featured in an interview on this website in January).  This book has helped me to understand how my own CPP symptoms developed in early childhood and how all of those seemingly unrelated pains and ailments I experienced as a child (emotional trauma, chronic headaches, TMJ, IBS and scoliosis) contributed to unresolved and unhealed muscle memory stored within my nervous system well into my adulthood.  When I began adulthood without resolving any of those physical or emotional traumas and pain, my poor diet, high stress (and an abusive relationship) ultimately 'forced' IC, dyspaureunia, vulvodynia to seem to 'erupt' overnight, when in fact they are interconnected pain components from having CPP.  As Dr. Echenberg describes it so eloquently and is trying to teach the medical community that with CPP, pain IS the diagnosis! 

"Secret Suffering" should be,in my opinion, read by every CPP patient whether you suffer from IC/PBS or related diseases this book will give you great insight into the female pelvic anatomy, how the musculoskeletal anatomy affects CPP, and how non-invasive treatments and therapies should become the new treatment protocol.  Another very important aspect that is covered with great compassion and detail is how CPP affects intimate relationships, whether in a long-term relationship, dating and it also provides information for both straight and gay women.  It was very brave and important for Bilheimer to include interviews of the spouses/partners affected by CPP and to share their side of the story as well. Nothing in this book is sugar-coated or left out which is exactly how CPP is: embarrassing, loud, and unrelenting pain. 

I cannot recommend this book more highly as it is truly one of the better books written collaboratively by patient and medical doctor that I have read in a long time.  There is so much compassion, caring and hope conveyed in this book, in spite of the difficulty of living with CPP and the difficulty in not only gaining a diagnosis but by the treatment of CPP patients throughout the US (and world) which is to say, dismissed, talked to in condescending tones, or made to feel that they are making up the pain in order to seek out drugs.  The other promising and hopeful aspect presented in this book, as I mentioned, is the unrelenting drive of Dr. Echenberg and all of the medical doctors and experts presented in this book to provide their current and future CPP patients with the best medical care and experience within a medical setting than most have previously received. 

For the millions secretly suffering from any of the CPP diseases I urge you to buy and read this book immediately.  Share it with close family and friends and with whoever you share your intimate life with.  Your pain now has a voice and some incredible doctors, researchers and noninvasive treatment protocols that can bring you great relief from your pain and great hopefulness for your future. 
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I had the privilege of meeting face to face with a woman and IC patient earlier this month and hearing her IC story from the dark and painful early days with her own tale of a happy ending and her IC going into remission after her journey towards finding answers for her IC puzzle.  Her words of encouragement and questions about my IC journey left me feeling very hopeful indeed and honored to have met an IC patient in person to share our tales of woe and triumph over a cup of coffee-and knowing that both the act of socializing and the drinking of coffee were something to be cherished as we could not do either when our IC was so bad.  My new friend's IC story will remain in my heart as I do greatly honor each IC patient's privacy but I did want to share how wonderful it was to meet an IC patient in my living room instead of across cyber space (although I still greatly cherish all of the IC men and women who I have 'met' this way!)

My new IC friend had a few suggestions to pass along and share with other IC patients in the hope of sharing some items that might be helpful for someone's IC pain and symptoms (it goes without saying, I hope, that we are not doctors, simply IC patients, and share these items for you to try, but highly encourage you to discuss them first with your doctors):

  • d-mannose-(clear tract)
  • Cantharis-a homeopathic remedy helpful for urgency
  • Sesame seed oil-organic whenever possible
  • anti-histamines
  • finding the BEST source of drinking water!
If you have some IC friendly products/remedies to suggest for other IC patients to try out please feel free to email me via the 'Contact Me' form located on the drop-down menu of the website.  IC patients walk among us...perhaps we just don't know it yet, so information sharing and IC awareness is the key to helping one another! 

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I recently received information from Ortho Women's Health & Urology (a Division of Ortho-McNeil-Janssen Pharmaceuticals),  the manufacturers of Elmiron, that a shortage of Elmiron is being anticipated. (Please do not contact me directly regarding the Elmiron shortage-visit the websites listed below or contact OWHU directly via the 800# listed in the last paragraph.) Here is the drug shortage announcement as it was conveyed to me:

On behalf of Ortho Women’s Health & Urology (OWHU), Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc., we wanted to inform IC patients about a product shortage of ELMIRON® (pentosan polysulfate sodium) 100 mg capsules. ELMIRON® is an oral prescription medication indicated for relief of bladder pain or discomfort associated with interstitial cystitis, a chronic condition of the bladder that affects both women and men.

 

We anticipate this shortage, due to manufacturing delays, could last several months, thus limiting the supply of product available to patients. We are doing everything possible to resolve this shortage and re-establish supply to patients as quickly as possible.

 

We have contacted the U.S. Food and Drug Administration (FDA), pharmacists, physicians, and patient groups to share this news with them directly. Physicians or patients that have questions about this product shortage can contact the OWHU Customer Communications Center at 1-800-526-7736. Physicians seeking information also can visit www.myorthoelmiron360.com; patients can visit www.orthoelmiron.com.


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So the inevitable happened: I got a bad bladder infection.  Although I had a successful flight with IC, I wasn't as successful in sticking to my fairly regimented regime (diet and schedule) for keeping my IC symptoms to a manageable level.  The water was different, the environment and humidity were different, and the biggest difference while on vacation: food.  While on vacation I did make a couple of special trips to Whole Foods but I was shocked to discover that this large chain store did not caryy one of my staple items: yeast free (sugar free) frozen bread!  On my second day of vacation a little nagging fear began to form that although my IC has improved greatly over the years I was not going to be able to maintain my diet while on vacation.  Would this upset the balance of my body, and the ultimate sacrificial lamb, my bladder?

Unfortunately, the answer was going to be yes, and I was going to develop a severe bladder infection a few weeks after my return home.  The bladder pain and discomfort sent me into a mini depression and I overdid it by taking too much oil of oregano and then ended up messing up the balance of my bowels.  Me.  Someone who has lived with IC for six years and knows EXACTLY what not to do in order to keep IC pain and symptoms to a minimum.  So I pulled out some of bladder's little helpers:
  •  Relaxation CD's
  • Started reading a good, humorous memoir to keep my mind off the pain
  • Heated up a buckwheat pad and applied it to my bladder/vaginal area (warm, moist heat feels so good)
  • douched with yin care twice a day
  • took double doses of acidophilis to get my intestines on the right track
  • Water, water and more water
  • Rest
The bladder infection lasted for 5 days, but is now almost completely gone, and my spirit is slowly healing along with it.  I still don't regret my vacation and my first airplane trip since getting IC.  I am stronger than IC.
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Here are a list of little things that you can use or do while on the IC diet or learning to live with IC to brighten your day:

  • add freshly sliced cucumber slices, limes, or lemons to your drinking water
  • infuse your sleeping space with an essential oil (lavender seems to be a scent that a lot of people with IC can tolerate)
  • Replace scented candles with unscented soy candles or with natural beeswax candles (which smell great even as they burn out)
  • Splurge on the highest thread count of Egyptian cotton bed linens so when you do get to take a nap in between restroom stops, it is a luxurious one
  • Replace your cleaning supplies with natural brands such as Seventh Generation-you'd be surprised at how chemicals in cleaners negatively affect your IC
  • Find a counselor, therapist, priest, etc. who you can talk to in confidence at least once a month so you have a neutral person that you can share all of your IC feelings with
  • Read encouraging books but be aware that it is normal to be depressed, angry, or sad to suddenly have a chronic and painful illness
  • Cry when you need to-don't keep your emotions inside!
  • Consider adopting a rescue pet from the pound.  My IC pain never seemed quite as bed when one of my beloved cats was lying next to me keeping me warm and purring
  • Try acupuncture, massage, or biofeedback for your IC symptoms
  • Join Facebook or other networking sites in order to meet other people with IC and learn about the latest treatment options
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Along with a diagnosis of IC comes the realization that your life has completely and utterly changed.  Perhaps it has become obvious that foods play a role in triggering painful IC flareups, but what might not be so obvious are the the chemicals in body products, skin care products, and household cleaners that fill our homes, and the negative effect that these products have on IC.  There are many websites, books, and articles in which to research how products are made.  Petroleum, and other harsh chemicals reside in products ranging from lipstick to candles to soap.  For those of us with IC, this products can be causing further harm to our bodies, due to the possibility that IC creates a lowered immune system response.  (Not to mention the harmful affects that these chemicals have on our water supply, the air we breathe, and the animals that we share our space with). 

It wasn't until my IC was so bad that I took a long, hard look at the products within my house, and made positive changes.  Along with the dietary changes, I was able to see the subtle decrease in pain and IC flareups after changing out laundry detergent, makeup, shampoo, and even the cat litter in our cats' litter box to cedar chips instead of litter made from harsh chemicals.  Wax candles with chemically scented smells have been replaced with the delicate sweet smell of candles made from beeswax.  Look around your environment.  Think about those things that might be causing your IC flare-ups.  Both you and our shared environment will thank you for the changes that you make. 
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I will be adding a medical disclaimer to this website shortly, but since it is not here yet, I will add it to the beginning of this post.  Please use the information in this website at your own discretion and work with a licensed medical doctor and/or health care provider prior to using any of the items I outline below.

1.  Take a hard look at what goes into your body.  Be honest with yourself about what you eat.  Sugar, acid, yeast, and processed preserved foods are the WORST things to put into your body if you have IC.  Work with a doctor and try the yeast elimination diet. 
2.  Yin care feminine douche (available on line or from a licensed TCM doctor or acupuncturist)  For severe vaginal flare-ups you can soak a cotton ball or tampon and insert for a few hours for instant relief.  Also a great vaginal cleanser during 'itchy' moments.
3.  Megadophilis (1X/day before meals)
4. Natural antibiotics such as goldenseal (Caution: Use ONLY with doctor supervision), oil of oregano, garlic.  I utilize goldenseal for one week at a time taken 6-8 hours AFTER Megadophilis.  The Oil of Oregano I use is 2-4 drops in water once a day or if bladder/yeast symptoms are severe I take it twice a day.  Garlic I eat as if it is going out of style.
5. Meditate/Pray/Relax for AT LEAST 1 hour a day
6.  Read one positive thing about health, IC, and the environment at least once a day.  Focus on the positives and focus on one day at a time!

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