Living a ‘normal’ life with interstitial cystitis (Chronic Bladder Pain)

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When I first saw a urologist (2015), it was due to ongoing bladder/kidney ‘infections’. I think in four months before my doctor took some course of action I suffered from symptoms of 3 separate infections. But after every single antibiotic dosage…the symptoms rapidly came back.

On the third arrival to the clinic. She asked me to provide another urine sample. I handed her the sample and she noticed it was dark yellow with a tint of red. Automatically she thought there was blood.

She had me rush the sample to a clinic, so they could further test it. Results came back and there was blood in the urine sample.

Right away, the doctor who noticed something was wrong, referred me to a urologist. I had an emergency appointment within two weeks of getting the referral.

At the appointment he asked me for my history with infections. This is when I realized there was a problem long before…When I was between the ages of 7-10 I had about 20 different urinary tract/bladder infections. Some of which were not healing on their own. The doctor back when I was younger pretty much told me the reason why it was not healing, was because I becoming immune to the antibiotics and never researched any further.

He checked my blood work. My MRI on my pelvic bone, recent urine tests and my ultrasound results. (Being someone suffering from chronic pain, becomes helpful when other doctors prescribe the necessary tests-and all you have to do is carry a gigantic folder of results around).

The urologist let me go for the day, but told me he was going to have me go through a cystoscopy. Since I had medical insurance who would pay for it, the appointment was not more than a month later and he was the one who was going to perform the procedure.

I remember going to that appointment with a great deal of stress. I knew what the procedure consisted of and it terrified me.

Procedure: A small camera is inserted into your urethra and advanced up into the bladder. They fill up the bladder with liquid and get a look on what could be happening on the inside.

After the test was done. He told me everything looked normal. However, keeping in mind that I had several infections and nothing was truly helping. He said what I could have is interstitial cystitis (IC).

According to WebMD IC is chronic bladder pain.

“IC is a chronic bladder problem. Your bladder holds pee after your kidneys have filtered it but before you pee it out. This condition causes pain and pressure below your belly button. Symptoms can come and go. Or they may be constant.

Interstitial cystitis causes urgent, often painful bathroom trips. You may have to pee as many as 40-60 times a day in severe cases. It can even keep you up at night.”

Common Symptoms for Men and Women:

  • Bladder pressure and pain that gets worse as your bladder fills up.
  • Pain in your lower tummy, lower back, pelvis, or urethra (the tube that carries pee from your bladder out of your body)
  • For women, pain in the vulva, vagina or the area behind the vagina
  • For men, pain in the scrotum, testicles, penis or the area behind the scrotum
  • The need to pee often (more than the normal 7-8 times daily)
  • The feeling you need to pee right now, even right after you go
  • For women, pain during sex
  • For men, pain during orgasm or after sex

I have several of the common symptoms. The most common two that I suffer from is needing to pee more than 7 times a day…by the time the first 3-5 hours of being awake is over…I have gone about ten times. The other symptom is right after I pee, it could be within the next ten minutes…my body signals saying I need to find a bathroom asap. Sometimes there is still a lot of urine left, other times I am completely empty and just sitting there figuring out why my body tricked me.

This chronic pain disease was definitely put into the mix right away. However, I always wanted to get a second opinion…because with any health issue and the way I get bounced around I prefer more than one agreement to the issues I suffer from…

This week at another doctors appointment with a lower body specialist, I brought up the IC (along with other issues) and the specialist agreed that’s 90% what could be causing the pelvic pain.

However, because Endo has not fully been diagnosed (need the surgery) and there are a lot of open ends…there was no way I could be helped right away.

Endo being the primary. The specialist needs the full yes or no from the surgery because at this point there is something causing the pain. If it is fully endo we have to go down one path. If it is not fully endo we have to go down another path, and that can only be concluded after the surgery.

For IC: I have yet to figure out how to live a normal life with it, as I never wanted to believe the first diagnosis. But since the confirmation, I have been looking into many methods…and eventually there will be a follow up post so I can try and help other also living with IC.

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