My Story: 15 Years of Searching for a Diagnosis

My Story: 15 Years of Searching for a Diagnosis

I just got the long, long awaited diagnosis of Interstitial Cystitis, which is a very painful bladder disease.

I couldn’t be happier and more frustrated at the same time. I have been suffering for 15 years, telling my doctors something is wrong but never getting a good answer. My symptoms started in early pregnancy; with urgency, pain and pressure. I called my obstetrician, who ran a test for a urinary tract infection that was negative.

Jackie Schneider

Jackie Schneider

I kept insisting that I had an infection because of the symptoms. They kept checking, but an infection never showed up. Even after the pregnancy, the pain continued, so I went to my primary care doctor. Again, no infection was found. But I kept on insisting I had to have something because I was hurting.

The doctor ordered a clean urine sample, as I remember he called it. The nurse put a catheter in me to get the urine sample and I went through the roof in pain. On a scale of 1 to 10, it was a 20!

It was at that point that even she said that isn’t normal. I was happy, because now I would finally get some medicine to cure me, right? But when the urine results came back, I was devastated that they found no infection. Now what?

Off to a urologist, who ordered another urine screen using a catheter, which again caused severe pain. Nothing was found.

I went back to the gynecologist, begging for help, because now I had other symptoms; painful intercourse, slight tissue bleeding and specific areas of pain. This time I was diagnosed with Vulvular Vestibulitis. Finally, a diagnosis and treatment!

Not so fast. Yes, I did have the vestibulitis and began treatment, but the urethral pain and urgency didn’t go away.

Off to another urologist, who thought urethral dilation would help. But help what? What is wrong? The dilation was done, and it was only little better.

Then while Googling, I came to the conclusion that I had Interstitial Cystitis My symptoms fit the puzzle. I talked to my primary care doctor about it and he said, “Oh no, you don’t have that. That is really bad. You wouldn’t want that.”

My heart sank. I was thinking, of course I don’t want to have Interstitial Cystitis. But if I have it, I have it, and I have a right to know if I have it!

Nothing was done, so off I went once again, dismissed to keep looking on my own for help.

Through the years I have had catheters for other medical reasons and I have always panicked due to the extreme pain they caused. I would tell the doctors that something is wrong and I had to be sedated before having a catheter.

I had a surgery for the vulvular vestibulitis and went home with a catheter. I was assured I would not have pain. But I ended up being admitted to the hospital and getting shots of morphine due to the extreme pain the catheter was causing.

Even with that, still no answers. We moved from Michigan to Florida due to the poor economy. My husband, who is now in nursing school, found work as a surgical technician. Full time employment came with long awaited health insurance.

That led me to see a specialist. This time I was going to be firm and not let the doctor off the hook!  The urologist thought it was a stricture in the urethra, so I had a dilation done. I woke up in a lot of pain and it continued. I went back to the doctor, who said the magic words, “I think you have a condition called I. C.”

It’s been about three years since my official diagnosis with Interstitial Cystitis. The pain of this disease is higher than a 10 on the pain scale. It’s been equated to end stage cancer pain by a Harvard study. I.C. sufferers have a high suicide rate.

I.C. comes with other medical conditions, which also cause chronic pain. I am in pain management and do not abuse my pain meds. If not for the medication I am taking, I would just be revolving through the ER for them to control my pain.

I have a reputable pain clinic and I am seen monthly for my scripts as well as tested for drug abuse, which I don’t mind one bit.

Many of us in the I.C. Community fear that someday we will not be able to get our much needed pain medications. We are one of many legitimate and desperate populations of patients who need our pain medications to not be interrupted or taken away. We must not punish those of us who desperately need these drugs for lifelong chronic pain.

12_7.jpgJackie Schneider lives in southwest Florida with her family.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

Authored by: Jackie Schneider

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Janine Kabo

Great story Jackie we are friends on FB, I have IC as you already know. The pain we go through is unbelieveable at times, Thank You for bringing awareness to this horrible debilitating disease.

Robert P Francis

Strong courageous woman, and fights walmart too. Gotta love her!

Jackie Has IC

Hi, thank you all for your replies. I’ve had several hydrodistentions, did the interstim trial,that was awful. Instills via a suprapubic catheter because I can not be cathed is causes extreme pain, instills do not last but perhaps 4 hours. I think I had two instills. Was offered Botox but I was scared to death of retention, as that would cause me to have to be cathed, and cathing is just out of the question. I’ve also had surgery for Vulvar Vestibulitis, Vulvodynia, but it didn’t work. No I don’t have pain if I go into salt water, but my tissues do break open and it really hurts. The best description for this is like paper cuts, plus painful trigger points. Not sure about deep tissue massage, as pressure causes a lot of pain which will last for several days. I have other conditions that go along with I.C.

My suggestion is do an internet search for interstim as well as intravenous vitamin c for ic.

Sunny

Whoever told any of you that you had to wait to understand what was going on until a “doctor” told you? You do not have to suffer nor do you have to wait. Take the bull by the horns and research healing IC yourselves! I did and have now been healed 4 years – no suffering and no…this is not a remission. You can heal from the cellular level up. Do not put your health into the hands of people who are in the business of making you believe you have to live with this for the rest of your life! Stop sharing your stories and start researching how to heal. Your energy will be better spent that way!!

Thank you Jackie for sharing your story. You like so many carry the same fear of having no pain relief as the government, the FDA and anyone else tries to decide if we have a need for pain meds. Until you have Interstitial Cystitis you cannot imagine the severity of the pain. Yes there are Physical Therapist trained to do Pelvic floor massage thru the vagina and rectum to loosen the muscles that have tightened around the urethra and make it easier to urinate but it is not a cure for the disease of IC it is a treatment for those with IC who also have pelvic floor dysfunction. Most IC patients go to a PT along with doing instillations thru a catheter of medications directly into the bladder, take prescription meds to help stop the breakdown of the gag layer in the bladder, some have interstims implanted, most take meds to decrease the acidity in their body, and take pain meds just to be able to function on a daily basis. IC is a terrible disease that attacks mostly women but does attack some men. It is grossly underfunded and barely researched. It is time someone did something to help all of us with IC. It is a real disease with real symptoms and horrible pain and many have lost their bladders and some their kidneys. These are brave, courageous women who have toughed it out with no new treatments and no cure. IT IS TIME FOR A CURE.

Cindy Johnson

Very proud of you …it takes a lot of strength to go back in time when it all started and relive all that…you are now a Hero….

Thanks so much for sharing your story, Jackie. Unfortunately, many IC patients experience the same hardships when trying to figure out what is causing their bladder pain, frequency, and/or urgency. We have lots of information about IC diagnosis, treatment, & more on the ICA website, http://www.ichelp.org. ICA is the only non-profit health association dedicated to improving the quality of healthcare & lives of people living with IC.

Desi Goldsmith

I, too, have IC. I was diagnosed in 98 but with a major flare after TAH/BSO. Horrible pain. Found a wonderful Urologist who, after hearing my history, told me I had had IC since I was 5! I’m 53! he thinks dilation is barbaric as do I! Caths are horrid. I, too, am in responsible pain management. I also have fibromyalgia. I understand.

I suffered for 27 years with IC and I got better and you can too. There are may theories and treatments that do not help nor work. I tried them all. I spent years researching and going back to school and I figured it out and got myself better.

Cheryl Grainger

Hi Jackie,
I too was diagnosed with IC several years ago. I was wondering while reading your story if you are able to go into salt water? Several years ago I was fine going into the ocean then one year I went in and ended up running back to the beach house to hit the shower! It burned like salt on a open sore. I too have painful intercourse so that is out. 🙁 I was just curious because I have never received an answer to this problem from the doctors. No one seems to know.

Nancy Abrams

Hi Jackie,
I am so sorry you have been thru so much and still continue with the pain. I have been diagnosed with IC and it is horrible. Being an RN, I decided to research the muscle group that related to the pelvic area. Anyway, I found that the Psoas muscle can display the same symptoms as well as the Piriformis. I found an excellent massage therapist who agreed and my pain and discomfort disappeared. Now, occasionally it will reappear but a session or two with massage and stretching remidies the problem. I am not saying this i what yours may be, but it is worth a try. I simply refused pain meds because the effect they have on the body and the addiction potential. I hope you find a pain free lifestyle. Let me know. If you try the massage approach, make sure you find someone who really knows deep tissue massage and has years of experience with excellent reference. Best wishes.