Interstitial Cystitis/Painful Bladder Syndrome Chronicles: Part Three

After the horrible doctor experience, I decided I needed to figure this out on my own.  I continued to research online and was almost certain what I was dealing with, so I started ordering a bunch of supplements to help IC.  Anything that promised to help the pain and frequency.  CystoProtek, D-Mannose, Aloe Vera were a few of them.  

None of them worked.

I read about the IC diet and how acid effects symptoms.  I started buying white chocolate (which I never liked, but I couldn’t fathom going cold turkey on chocolate), low acid coffee, and took tomatoes out of my diet.  I was now pregnant with my 2nd son and spent a lot of time researching as my symptoms continued to increase.  

I was peeing up to 40 times a day at this point and the pain was constant. 
 
When I had my son by C-section at the hospital my symptoms went away for the first time in the 1.5 years since it started. I was intrigued by this, and wondered if it had to do with the anesthesia, strong pain meds, or antibiotics. I kept a journal and wrote down anything of significance.  I feel this is an important part of my recovery and helped me put the many pieces together eventually.

Sadly, the symptoms returned full force once I was back home and off all the meds. 
 
A few months after this I decided I needed to go back to a urologist. I searched online for a female urologist in my insurance group and made an appointment.  I felt so much anxiety going in that day, I remember I was shaking worried how they would treat me.  

Thankfully this experience was much better than the other doctor. I filled out a long questionnaire about my symptoms and how long they had been going on.  I peed in a cup as usual and there was blood in my urine. 
 
The doctor came in and spent time with me asking detailed questions.  She left for about 10 minutes and came back with a packet of information for me.  

She told me I had Interstitial Cystitis. This was an incurable disease without treatment options that work for all patients. 

She said they can do a procedure like a Cystoscopy where they also put fluid in my bladder and blow it up to look at the tissues if I wanted to be sure.  Due to the severity of my symptoms she didn’t think this was necessary.  She explained this can make the pain worse for a few weeks after, but in some women, it can help symptoms after the initial pain and they come in for these treatments every 3 months.  She advised me against it as a first line of treatment. She prescribed by Elmiron (very expensive) and amitriptyline (an antidepressant that is supposed to relax muscles) and said it can take 6 months to work, with a 40% success rate.  I would have to be on these meds my entire life and for reasons they do not understand, it can stop working at any point.  She explained bladder removal could be a last treatment option if all others did not work.  I got a booklet about the low acid diet and  she told me I needed to start it right away. I explained I had tried it in the past without success, she informed me it can also take time to work.  Apparently, everything takes time to work with IC, if it will work at all.
 
I left the office feeling sad but at least I finally had a real doctor telling me what I already knew. I went home and started researching the side effects and cost of the medication. I ripped up the prescriptions and decided I would get out of pain on my own and decided I would look into more natural options. Looking back, this was not smart. Anything that can help get you out of pain should be tried with this illness in my opinion.  

​I had the idea in my mind I would figure this out and heal it, and in a few months, I would be fine.  It actually took another 6 years...

You can find more in my book,  Healing Through the Pain: How I Overcame Interstitial Cystitis