Wednesday, December 31, 2008

I Get a Second Job as a Professional Patient

I had my cystoscopy on the Tuesday after Thanksgiving. I had my period, of course, just to make it even more uncomfortable.

Before the cystoscopy they did another test that I can't remember the name of - I just know it had "dynamics" or "capacity" or something like that in the title. A nurse put a catheter in and then I had to stand up while she proceeded to fill my bladder fuller and fuller to see how much I can hold and for how long. I'm not sure exactly what it was that caused it but I started to faint. The catheter was excruciating - so it might have been pain that caused it, or it might have been the sensation. I was so out of it I really don't know. Anyway, when I started to pass out she pulled out the catheter in a hurry and I was supposed to pee in this bucket attached to the bed. I couldn't really sit up or see or control my bladder and so I just peed EVERYWHERE. I'm sorry to say that at this point I'm not even embarrassed by that anymore. And apparently people pee on the floor all the time at the Urogynecologist so I wasn't the first one or anything.

After I fainted they called DH and he came and sat with me during the cystoscopy. He is so brave and I am so thankful that he is willing to hold my hand through all this. Dr. G was really careful to make the cystoscopy as comfortable as possible. It took 3 applications of numbing gel to get the camera in and then he numbed me up afterwards so it wouldn't hurt so bad when I got home. The cystoscopy showed that I have super-duper inflammation of the urethra and what looks like interstitial cystitis as well. Since nobody can find any bacteria that would be responsible for all this inflammation it looks like an autoimmune issue. (On a side note - the same can be said for my endometrial inflammation - nobody can find any bacteria there either.)

The good news is that now that I've been diagnosed with interstitial cystitis I can start getting better. Also, I'm really starting to think that my infertility is caused by inflammation/autoimmune issues. I'm hoping that if I can gather enough proof of inflammation in various parts of my body SOMEDAY I will find an RE who acknowledges this is a problem and will know what to do. We already know I have autoimmune issues - I've been diagnosed with Behcet's Disease - but since I haven't had a flare up in several years none of my current doctors, rheumatologist included - think that it could have anything to do with my infertility. Still - my gut just tells me that the Behcet's, endometriosis, and interstitial cystitis are all related somehow.

Now for the bad news about interstitial cystitis. Treatment totally sucks. For the entire month of December I was at Dr. G's office every day except Thursdays. Marathon appointments with the RE suck too, I know, but at least those might have a baby at the end of them. Anyway, on Tuesdays and Fridays I had my usual appointments with the Vagina Fairy. Mondays, Wednesdays, and Fridays I had bladder instillations. A bladder instillation involves getting catheterized (whoo-hoo!) so that medication can be put directly into your bladder. As it turns out, my urethra is really really tiny and really really pissed off and that makes me really hard to catheterize. The first few times it took nearly an hour and lots and lots of numbing gel to get the catheter in. Once, they got it in just to find out it was a bad catheter (all the medicine shot back in the nurse's face) and they had to start all over again with a new catheter. Another time the catheter accidentally went into my vagina and when I stood up all the medicine came whooshing out on the floor and we had to start all over again AGAIN! The good news is that the nurse and I are pretty much best friends now and we had a good chuckle over each disaster. The best news is that the instillations really work! By the last one we hardly needed any numbing gel and I was hardly in any pain! I really hope the effects last!

The other crappy thing about interstitial cystitis is that the flare-ups are affected by your diet. Unless you want to pee what feels like liquid fire you pretty much can't eat or drink anything good for the rest of your life. I have this little card to keep in my wallet that unfolds into a chart about as big as my dining room table and lists all the things I can no longer have. The only things I am allowed to drink now are water and decaf herbal tea. I can only eat bland, spiceless food like white rice and potatoes. The hardest part is giving up fresh fruits and veggies. I live for fresh fruits and the only ones I can have now are pears and blueberries.

Once I started the diet I felt a lot better. Since I was hoping that it was only necessary temporarily I let myself slip a bit over the holidays. At first I thought I was getting away with it but now its starting to catch up with me. I'm pretty bummed. Life without clementines seems pretty bleak sometimes.

Well. That's the medical news from December. Maybe a little later I'll share the news from the psychological front.


JamieD said...

Wow - you have been through so much! I am glad they found the source of your problems and know the treatment (even better!)

Here's to a happy and healthy 2009. Sending many blessings your way!

Nic said...

I know what you mean, I have endometriosis and hypothyroidism which is autoimmune and I am TTC. All is related and it sucks. Hope 2209 brings us what we are desperately wishing for!!

S.I.F. said...

I was just thinking the other day that my life has become ruled by Doctors Appointments... I think my Dr. knows me better than anyone else in my life right now. You've got to love it! (not so much really)

Debbs and The Hun said...

I've had IC for ten years now and it does get easier and there are trick to help keep your bladder under control. All the best