painful bladder syndrome answers

I know this is primarily Freya's blog, but I don't think she will mind me talking about this subject. I will admit I find myself in a funk over it at times and at others...I'm ok and I deal. I suppose that's partly why I haven't been online anywhere for a while. But I'm going to be ok, it's not a life threatening condition and thankfully it's one of the few that doesn't lead to cancer.

There is some treatment for painful bladder syndrome but mostly it's an inflammatory syndrome that you have to quell. I take a pill three times a day that is supposed to help rebuild the lining of the bladder. Also, they use two pills and put the powder in a fluid that they use as an infusion for the bladder directly (yeah that means a catheter...which I loathe) to help jump start the process. The pills take about 3 to 6 months before it really starts to work.

Since it's an inflammatory issue--I was told that when I'm at my worst with allergies, I can expect to have flares (otherwise known as uti like symptoms.) Essentially, I'm following a low acid and low/no potassium diet right now. Potassium and acids (as well as caffeine and alcohol and spicy foods) irritates the weakened bladder so it's quicker to avoid than the suffer in pain. Oh the pain...it's an interesting sensation that feels like a low voltage going through my gut. Thankfully, I have some fun blue pills that's supposed to help with the spasms.

All in all it's a lifestyle to maintain until things calm down. I won't regain the lost capacity, but the goal is to not lose more. Eventually, from what I've read of the forums dealing with this issue--I can go back to my love of coffee and beer and wines one day. Oh and the occasional chocolate bar. Until then, I'll drink my milk, eat my white chocolates, and try to abstain from the foods that cause me pain.

And We're Back

Freya's Christmas last year. I think I'll post more later.

So I survived surgery. It took a little longer than I thought to be comfortable in front of a computer but here I am! I have loads to catch up on now.

The reason it took longer was...my response to pain is to not sleep. Similarly, my response to be really sick is to not sleep. Instead, my body wants to pace and move and move and move. I'm like a shark...gotta keep moving. The pain killers (Vicodin or Demerol) didn't help at all--no edge was taken off. Honestly, the pain from the surgery wasn't bad at all. It was the side effect of the surgery that hurt something special.

For those who aren't familiar with laparoscopy, they pump in a gas (usually Carbon Dioxide) into the abdominal area which helps the doctor get a better view of the area they are working. That gas can sometimes stimulate a nerve in the diaphragm that goes to the shoulder and the neck. I had such luck and the day after surgery it was like a I had the worst whiplash known to man on top of my right shoulder hurting like I sprained it some how.

In desparation upon realizing that the pain killer didn't work, I filled up a tube sock with some expensive Japanese rice and zapped it for 2 minutes and had it sitting on my neck. I decided that moving will be kept at a minimum, so that meant I was pacing in the living room until boyfriend came home at lunch with a glorious heating pad and ordered me to lay down and rest.

I spent my days watching this awesome British comedy called Black Book. It's hillarious! It's also a sadistic show to watch when it hurts your stomach and your neck to laugh. Boyfriend spent a lot of time telling me to rest and relax, but how can you when your neck hurts to lay down? The little trick I learned the second day when I was trying to get out of the bed was to grab my own hair and guide my neck to the direction I wanted it to go (Amazingly, I was using my stomach muscles a lot faster than boyfriend did after his laparoscopy surgery for his appendix.) The pain in the actual location of the surgery was--like I over did it in the gym doing crunches.

So this week, up until Wednesday involved me catching up on sleep--big time.

The reason for the surgery was for diagnostic reasons. The doctor suspected I had endometriosis (which I had evidence of but it isn't currently not active--though the cells in the tube is also doing something similar as endometriosis), they also wanted to check out my bladder and my uterus (which he suspects ademyosis--but you can't test it...you have to take it out of body for a comfirmation on that one.)

So the biggest thing is my bladder--it's been scarred so I don't hold as much as a normal person, I'm down to 60% and you can't regain what you lose. The problem is called interstital cystitis or painful bladder syndrome. Essentially, it's where the lining in the bladder stops working and allows the things into the bladder that irritates it, which inflames it, which then can scar it. The symptoms are very similar to an UTI. So, please learn a lesson from me--if your doctor doesn't start you off with a urine culture...ask for it. You may have something similar to me--it's pretty common and sadly not very well known. I don't want anyone to have to go through the things I had to to finally get a diagnosis (primary GP thought it was a UTI...that lasted from October to December.)

This episode was probably too much information but there you go. I felt that you deserved to know what was going on since I haven't been on for so long.