What I learned today about Vulvadynia and Interstitial Cystitis

It's been a few days since I last posted, so I've learned a few new things.

First, my OB-GYN confirmed that the Group B Strep is probably not causing my symptoms after all. Group B Strep is a natural flora to the human body and usually causes no symptoms in people that it colonizes. I have apparently been heavily colonized with the stuff for almost a year with no symptoms before now - and most significantly, my symptoms did not change even while being treated (effectively, it worked) with antibiotics to kill off the population of Group B Strep.

Which means I have been prescribed at least three unnecessary antibiotics in the last two months. Oh well, at least we know that I am not allergic to penicillin now. I only wish I could have avoided all of the stress and worry.

The new diagnosis is that I may have one of two chronic pain conditions for which there is no known cure. Vulvadynia or Interstitial Cystitis. Apparently they can both cause persistent vaginal burning which increases when sitting or with pressure on the area. So, I have now been referred to two high level specialists in my city. One is a vulva clinic (who knew that there was such a thing!) and the other is a well known researcher in the field of Interstitial Cystitis.

I am still learning about both of these conditions, and I will post more information as I get it.

One thing I've learned this week is that you have to submit an application to be accepted at the vulva clinic (no joke!) including a letter of recommendation from your referring GYN. Good thing it was her idea for me to go, as I don't get the impression that anyone ever gets into a clinic like this through self-referral. They were really serious about all of the lab reports and data they wanted before they would even schedule my appointment.

The prestigious IC researcher is also difficult to get an appointment with, mostly due to the fact (according to his secretary who was very kind on the phone) that he is pretty much the only person in my city who specializes in this kind of medicine. He is inundated with women anxious to get his help. The first available appointment they had was in July. (It is now March.) I asked how long a woman can live with IC without treatment, and the answer was: years and years. There is no cure for IC. Just treatment of symptoms.

One interesting thing is that I have to keep a three day urine log to bring with me to my first appointment with the IC doctor. I've been peeing carefully into a cup and measuring the urine in ounces. What I've learned so far by doing this is that I don't drink enough water. I know you're supposed to drink 64 oz a day (which I don't) and I doubt I've gotten half that much back out in 24 hours. So, I think I need to seriously focus on hydration. It can't hurt.

So the take home message from all of this for me has been (a)You can be misdiagnosed for months with a UTI and then told that you don't have one after all, (b)High level specialists can be very difficult to get appointments with, and (c)A person can live for years or a lifetime with chronic pain that has no cure.

I guess chronic pain can go into spontaneous remission on its own though. So, there is always hope.

This is what I know as of today.

I'll let you know what I learn tomorrow.