Secret Suffering - A resource community for women who experience pelvic and sexual pain

My story begins sixteen years ago on a vacation to the beach with my husband and young children. I took my five year old  on a bike ride. I of course was driving and she was in a seat on the back of the bike.  I was sitting on a very narrow andhard seat, peddling away. I was also eating fresh tomatos and drinking orange juice during the vacation.  The day after we arrived home, I awoke to severe pain in my vagina. I made an appointment with my gyn who said I had irritation and perscribed a hydrocortizone ointment to use for a few weeks.This did nothing for my condition. I was tested for all kinds of infections, but all the tests results came back negative. Finally ,one evening  my husband  placed an advertisement in front of me . H e didn’t say anything. I looked at it and just put it aside for a few weeks. I thought Ijust could not go see another doctor.   Finally. I decided to see what this one had to say.I made an appointment with Dr. Echenberg and this was the beginning of finding” the light at the end of the tunnel.” In the first fifteen minutes (itwas the first time during this whole experience  of  doctors) that someone was taking the time to listen to all  I had to say.  Dr. Echenberg diagnosed my condition as vulvadydia. I have been getting treatment from him and I feel much more comfortable.  I wanted to share my story in order to help other women  find help with this condition.

saw the whole condition, not just parts of it.i received treatment

I am a 38-year-old woman with 1 child. For years I had episodes where I complained of the same thing, urinary frequency, bloating, fullness in my abdomen.  Ultrasounds were always normal as well as urine tests.  Since I had my daughter 3 years ago the symptoms became more severe and more frequent, especially within the last six months.  My GYN kept telling me to just “go back on the pill” since I had PCOS, leading me to believe that my ovaries were the problems and being back on the pill would resolve things.  Well, it didn’t and my frequent urination, pain, fullness and bloating exacerbated. I found it hard just to sit to work.  No over-the-counter medicines helped.  I was frustrated and cried at times.  I even asked the nurse at my GYN’s office if they would consider a hysterectomy.  That’s how bad the pain was for me.  They didn’t seem to be hearing me or even doing any further investigation.  Thank goodness the pain became severe enough that I had to go to an outpatient emergency center.  I saw a physician there who thought that I might have interstitial cystitis and gave me the name of Dr. Echenberg.  After all of my GYN tests came back normal, I made an appointment to see Dr. Echenberg.  Thank goodness I was finally pointed in the right direction.  Dr. Echenberg diagnosed me with insterstitial cystitis and chronic pelvic pain disorder.  I sat in his office and cried because I finally felt like I wasn’t crazy, that my pain and other symptoms were real.  It has been about two months since the start of my treatment which involves medical therapy, diet change, physical therapy and bladder instillations.  I feel significantly better from the day I arrived in his office.  I am a much better mother to my daughter becuase I feel better.  I look better becuase I feel better.  I even get along better with my husband because I feel better.  All around, life is good with the therapy I am undergoing, and I imagine and hope that I will continue to improve and fell well. 

I’m Susan Bilheimer, co-creator of the Secret Suffering website … and also a woman who has suffered for years with pelvic and sexual pain. You can read my bio for my background. My story is contained in the “Find Relief from Vulvar/Vaginal Pain,” which you can download when you sign up for the newsletter.

Recently, I’ve had a pretty bad flare-up of my symptoms, about which I’ve posted in Random Thoughts.

I encourage you to share your story in the Healing Room and to share about issues and feelings in Random Thoughts.