June 2019 Update: How Are My Interstitial Cystitis symptoms Today?
For the new readers to my blog: Before I begin, I just wanted to let you know that I was misdiagnosed with interstitial cystitis, pelvic floor dysfunction and "unknown" and told "no cures" and "we don't know what is wrong with you." Long story short, if you read About Me, ic was ruled out and I have a long-term embedded urinary tract infection that has stuck onto me since February 2018.
For the regular folks who follow my blog: Someone asked me yesterday how I was doing. I wrote her a detailed reply. Then I thought, I should write this on my blog too, so that readers know that it isn't all lavenders and lilies when I say I am "80% better." There are setbacks, anxiety, panic attacks, frustration and ups-and-downs. Here is my reply to her:
Sadly, I have plateaued at 80% since January 2019. I am frustrated and so sick of this. Other ICers think I should be grateful and happy, because today, I can walk (in high heels even), run, jump, do part-time classes, go out with friends... when I was bed-bound and wheelchair bound just a year ago. But the thing is, I want to be 100%, not 80%. I will not settle for anything less than 100%. I am stubborn as heck to get a full cure and will not give up until I do.
The "natural healing methods" are not getting me to 100% currently. I eat a rigid diet, I am so careful, but it nets me a long drawn-out maintenance of 80%. And not only that, it is not a solid 80%. I have days where I fall down to 65% because I am just so sick of eating plants, and I want to enjoy just that 1 hot pot, meat dish or dessert with friends and I take 2 Preliefs with those. When I indulge -- boom, I fall to 65% for half the day even with Preliefs. Last month was a terrifying 2 day episode. I ate a rutabaga (first time in my life), I steamed it and ate it clean, and I fell to 40%. I was weeing every 15 minutes, had 48 hours of 0 sleep... I felt suicidal and exhausted. Then I googled that plant and one article said it was full of Vitamin C and Ascorbic Acid. Well, no wonder! My bladder reacts very poorly to Vitamin C. You see, when I bought a buffered Vitamin C from 1 of my IC practitioners back in Fall 2018, my bladder was doing this as well. When I stopped the Vitamin C, it was calm again. I tested taking the Vitamin C again and boom, the frequency and sharp urges rushed right back. So I know my bladder cannot tolerate Vitamin C anything.
Even if I eat too many blueberries, I can get frequency so I guess they have Vitamin C too. My urine currently is almost normal, no stinging, not sharpness, no razor blades. HOWEVER, if I eat even a small amount of meats, dairy, or grains I will get a "hot temperature" urine. It's not burning, but it's so hot that it leaves my urethra feeling dried out! So I have to stick to a rigid plant-based diet. Now, in the last 7 days, June 20 to today, something new has happened. It feels like my bladder is "heavy". I had this back last summer 2018, it started out like that and then slowly switched gears to becoming severely painful and heavy -- like a bowling ball with rotating knives. So when the bowling balls with its rotating knives constantly ravaged my bladder, I was in so much excruciating pain that I ended up in a wheelchair... so I'm worried that this weird thing is returning. I am hoping it won't, which is why I am now scrapping the natural treatment and going gung-ho on a new treatment. Sorry to all the ladies who tell me to stay all-natural, but I am not going to wait around to see myself fall back into a wheelchair.
I have 2 options presented to me at this point that I genuinely like. Yes, I know there are other options but I am preferring these at the moment:
1) IV antibiotics - hit it hard and powerful. One American urologist and one UK urologist disapproves of me going for this, because I had sent out an email to 3 urologists asking if they could try it for me or get their opinions on it. However, another American urologist agreed to do it, and he told me that he has had great success on doing this with his patients. At this point in time, I will not be releasing any urologist names or who I'm seeing, or when I will do this for privacy reasons. I will only talk about it after I have completely finished the treatment. Now that being said, I may or may not be permitted to talk about which doctors were involved with my care, I must receive all doctors' and staffs' consent about it first. So in the meantime, if I do go for this, I wish to be given full privacy and not be hounded with questions about it on Instagram or Facebook. I will not reply to any inquiries about this until I have actually completed the full treatment.
2) Platelet-rich injection PRP therapy: There have been talks in the Chinese community in Taiwan about this. There is a group of doctors who healed or significantly improved Interstitial Cystitis patients through Platelet-Rich Plasma (PRP) Injections. They are Dr. Shu Yu Wu, Dr. Jia‐Fong Jhang, and Dr. Hann‐Chorng Kuo from the Department of Urology at the Buddhist Tzu Chi General Hospital in Hualien, Taiwan. The IC Network applauds them and writes about them as "Taiwan researchers", but I was able to get their names and location. You can find their contacts and all their amazing articles, treatment photos, and success rates of this treatment by searching them on Google. I don't know how you can book and I cannot provide anymore info, this is all I know for now at the moment. Very exciting news, since this is a new 2018 experiment trial they had run with pretty good success, and they claim there is no side effects since it is just moving your own blood into your bladder site. Until I can find out more info, this is all I can write for now. I will continue researching and reach out to Taiwan over this week and get back to my IC readers on what I find. I am trying to see if a Taiwan relative is willing to hook me up to grant me an audience with them via a Chinese phone conference. Wish me luck! About 90% of doctors I reach out to don't reply back, but the 10% who do, provide valuable information and insight.