OK. So at the moment it looks like IC is not the culprit, but Trigonitis, plus a kidney issue. This is my hope, anyway. My cystoscopy did not display as a typical case of Interstitial Cystitis, instead it showed Trigonitis -
white inflamed cobblestone pus around my ureteral orifices - that is the ducts where stuff from my Kidneys comes. Basically the triangular region of your bladder where your ureters connect - called the "trigon" takes on almost a scaly appearance. According to Wikipedia they don't know what causes it and how to treat it, but other tests show that many people find relief from Doxycycline - which is extremely exciting for me, which means I may have the opportunity to assume a normal life, won't be in constant pain, suffer from Pelvic Floor Dysfunction, painful sex, won't have to run to the bathroom constantly, and will be able to eat and drink like the rest of the world. I'm going to stick with this optimistic view and assume I can heal, instead of whatever Wikipedia told me. It may be naive however as some people suffer from Trigonitis their whole life with no relief. I found this blog page about it in Spanish: http://trigonitis.blogspot.com/p/mi-experiencia-personal-con-la.html
The scaly appearance of this trigone area of my bladder I associate with the following. Basically the skin of that part of the bladder is different from the rest of the bladder, biologically. And it basically wasn't robust enough to stand up to the infections or whatever my Kidneys are dishing out to it, and thus the normal quality of my tissue cells matured and took on the appearance of white scaly blobs. Yeah.
Here's the hopefully internet thing about Doxy and Trigonitis, but it seems to refer to patients with Trigonitis that has not develeoped too far - not like the Spanish blog above where the patient had it for over 17 years (gulp). I'm going to assume I belong in the category below - potentially treatable - given that it didn't show up for me as a chronic condition with Pelvic Pain until November 2012.
"Several antibiotic regimens have been used to relieve lower urinary tract symptoms in patients with pseudomembranous trigonitis. Recently, Burkhard et al. [15] studied the efficacy of doxycycline in 103 such patients. They received 100 mg doxycycline twice daily for 2 weeks, followed by 100 mg once daily for another 2 weeks. In 30% of the cases complete response was recorded while 41% of the patients reported improvement of the symptoms. In 8 of the 31 patients that consented to followup cystoscopy pseudomembranous trigonitis resolved completely while in 12 cases a decrease in the degree of squamous metaplasia was revealed." (http://www.hindawi.com/journals/au/2010/269254/)
In the 5-10 minutes that we had to talk, my Urologist (Michael
Jacobson, head of Urology for Alameda County) said he wasn't concerned
about the Trigonitis - sees it all the time - it was the strange thick mucus-like appearance of my urine during the Cystoscopy that disturbed him. He wanted to order a CT Scan. He had a couple suspiscions - First, a Matrix Stone in my bladder. Second, Renal TB - meaning Tuburculosis that spread to my Kidneys. Third, Hematobia - a parasite that shows up as a chronic bladder infection, but is actually some worms laying eggs in your bladder. He seemed to get excited when I told him that I had lived in Egypt for a year and a half and I did get in the Nile. Now I'm realizing I was also in the Nile in Uganda as well... anyway, Doc ordered a CT scan to
check for matrix stones or TB or signs of Renal Disease, and during that hour or two that my Scan was ordered and I got it, I saw my life flash before my eyes. I saw them finding the matrix stone or evidence of TB or whatever, just something treatable by antibiotics. I saw myself going to Congo making my dream film, having new relationships, generally going back to being the awesome person I used to be. Independent. Happy. Healthy. Yeah.
Well, the Doc saw nothing
except that I was very constipated. But then he did a standard old urine test with the paper dipstick and
said he's never seen anything like it - said the protein level is
off the charts. Which indicates to him that something is up with my Kindeys. I asked him to give me a number, he said simply "off
the charts". So perhaps that Kidney infection I got in Russia 5-6 years
ago and self-medicated with a friend's antibiotics was never resolved. I
never did see a Dr. for that - and I did have a lot of lower back pain
issues... So Dr. Jacobson said he needed to consult a Nephrologist and do
more work. Hopefully I will hear from him soon and we can get to the
bottom of this. This is turning into some page turning Indiana Jones
Saga of my pipes. They also biopsied the lump in my thyroid gland - so
hope to have answers on that next week. Given that trigonitis pretty much exclusively happens to
women of child-bearing age (me:30) and that they suspect hormones might
have something to do with it, I dont think it would be crazy to find
out there's some connection there.
One more thing, many patients with IC start out with a diagnosis of "Trigonitis" (the symptoms and diet are exactly the same) and then discover under a Cysto with Hydrodistention ( where they stretch out your bladder with water to look at it ) that they have IC. I'm going to pretend like I just have Trigonitis and hope that I can just recover from this.
Given that the two are pretty much identical in terms of symptoms a lot of people suspect IC at first too:
http://www.empowher.com/community/ask/why-there-very-little-information-about-trigonitis-and-what-can-i-do-about-it
Then you find out what you have, you google it, and there is almost zero information. I just have to believe it will heal. BELIEVE.
I'll upload Cysto pics soon.
