Tuesday, August 20, 2013

No Answers

As I have mentioned on this blog and on social media, I have been struggling with issues with my bladder on and off since last year but significantly since the second week in June of this year. Pelvic pain, especially when I void, as well as frequency and urgency. I have to say out that of all the pain I have endured in the past few years, this has been some of the worst.

As I also previously mentioned in my last entry I think, I am seeing a urologist at Lahey Clinic. I saw him the first time two weeks ago and he thought I have Interstitial Cystitis (IC), a very painful bladder disorder that can be related to Sjögren's. I was then back in his office last week seeing a nurse practitioner on an urgent basis because my symptoms were so severe. She immediately got me scheduled for a cystoscopy with hydrodistension yesterday to try and confirm the diagnosis and treat the symptoms with the hydrodistension.

So I went in yesterday for day surgery because they do this under general anesthesia. Routine for them. Not so much for me. I think I have only had anesthesia two or three other times. All other procedures have been with sedation only. I was glad to be going under general because I know how painful the procedure is but its scary once you get on that operating room table and know that you have no control over what is going to happen to you. Especially when you are going to be in a vulnerable position on the table. I wasn't concerned about the anesthesia going bad but lets face it, I tend to get weird illnesses and complications from things like this so my biggest worry was that I would get a blood clot or something like that.

Everything went well though. The staff there were amazing. I got to meet my new urologist because the original one I saw is retiring soon. I was very impressed with the handle they had on my history since none of them knew me before yesterday. There was a little glitch because a nurse came to give me heparin (I have a clotting disorder and have had blood clots) and my hematologist had told me NOT to have any blood thinners for this procedure. I told the nurse that and she got the resident right away who said that indeed, I was not to get heparin. They did give me an antibiotic and a dose of Decadron which is a steroid. I think it may have been because I have new onset asthma but I don't care what the reason was, I was happy because I have been needing steroids for a while now. I also told the nurse anesthetist that sometimes I vomit from sedation or anesthesia so they gave me a cocktail of meds before I even went in to avoid that. I'm not sure why nobody else has ever done that. Similar to how he gave me a quick tiny shot of local anesthetic before putting my IV in. They are big on comfort at this hospital. Works for me.

I was in the OR for about thirty minutes. I remember waking up sobbing and shivering, both of which had happened before and its just from coming out of the anesthesia. I guess it took longer for me to recover than anticipated and my husband was a bit worried. The doctor had come out to talk to him after surgery but then he waited an unusual amount of time to get to see me. Although I felt like I was doing OK right from the start of the recovery process, my heart rate and respiratory rate were quite low for me which is probably why they gave me more time. They gave me some pain meds and then crackers and milk afterwards and all went well from there.

Except for one thing.

They couldn't see any evidence of IC during my procedure. I mean nothing. Typically people with IC have a much smaller bladder capacity and show bleeding and ulcerations. Nope, not me. Now the doctor saw that I was getting a bit upset because who can blame me? I have had these symptoms for almost a year and things have been pretty bad lately. I also underwent an invasive procedure. From what I have read, you can still have IC with a negative procedure but its not common. I didn't get into discussing it with him because I wasn't thinking all that straight after surgery but I will discuss it more with him later. He did say that its a great thing to NOT have IC which I agree with. It is just hard not having any answers when something is so greatly affecting your life.

We decided on a follow up appointment in two weeks and he told me that we would figure this out and that did make me feel better. He also said there was a possibility that this is gyn related so this morning I worked on getting release forms sent back and forth to get records to my gynecologist so they will give me an appointment.

Meanwhile I am home sleeping off the meds and anesthesia and resting. My joints feel great. I think it is because of the Decadron they gave me yesterday. The pain I am having from before the surgery and because of the surgery is tolerable with pain meds. I expected to have MUCH more pain today since I was forewarned about that but maybe I don't because there were no ulcers or anything else wrong with my bladder. That's a good thing.

So I am almost back to square one with my honeymoon about a month away but I am just going to try and keep the faith and continue to surround myself with the love and support I have been receiving from so many people.


  1. Less pain than had been anticipated: a good thing. A really supportive husband: a better thing. A physician/group who really trying to help: also great. The fact that you are a nurse and know more than the average bear: both good AND bad. THINK DISNEY, look forward to your next visit, and rest. :-)

  2. Well, I'm glad that you don't have the IC. (I think) I know that it sucks to not know, but it sounds like Lahey is taking good care of you. Like you said in your blog, "keep the faith". It's hard sometimes, but what choice do we have. Love ya-

    1. That is definitely true about them taking care of me. Love you too!

  3. You are in my thoughts Christine. So much of our life is about "no answers" and it simply makes a person weary, to say the least. You are good to work on letting things go and keeping the faith - it truly is the only thing to do. Yes, it's a "good thing" that you don't have IC, but I know full well the difficulty in "celebrating" the good when you are still left suffering. Be gentle with yourself. These are hard humps to get over.

    1. I have learned about letting go from the best...you!