On the 66th day of Christmas my true love gave to me, a burning sensation when I pee.

Oh you thought this would be another “Christmas is so awesome and look how cute my kid is and look at his presents and smiles and rainbows” post. You should know better by now.

We’re talking about my vagina again. Ok not actually my vagina, but more like it’s neighbors pee hole and pee pipe.

For those of you unaware (which is like everyone because who really cares) I have something called Interstitial Cystitis. Of course I do. It essentially means that you have ulcers in your bladder that get real angry every now and then if you piss them off. And then you pee fire until it’s un-angry. And Christmas day it was PISSED (pun).

 

Let’s rewind to circa 2001, location: Penn State, lifestyle: sorority. If I wasn’t at the gym trying to figure how to get my discman to not skip on the treadmill, I was at the campus doctor.

Me: I know it’s like 9th time in 2 weeks, but my pee hole is on fire again.

Doc: I JUST gave you a dose of antibiotics for your urinary tract infection

Me: I know, they aren’t working.

Doc: (side eye…the type of side eye reserved only for strippers and sorority sluts) Maybe you should give it a rest with your boyfriend.

Me: I DON’T HAVE A BOYFRIEND.

Doc: (million billion side eye)

Me: No, I mean, I’m not having sex. They are just from nothing.

Doc: Sure they are. Here’s another antibiotic. (vigorously washes his hands after I leave)

Me: Ultimate sads.

After a doctor offered to give me a hysterectomy  and 50 million more side eyes, they found out that I never did have any urinary tract infections, I had Interstitial Cystitis. It feels like a UTI, it looks like a UTI, it smells like a UTI (don’t act like you don’t know) but it’s NOT. It’s just the ulcers in your bladder getting all pissy (pun) at you. And you just have to like, wait it out.

My IC flares were in remission for FIVE years. That’s like pee hole trophy worthy. That is until Christmas Day 2011 when I peed out chinese throwing stars and I knew right away. It came back.

I tried to remember my old routine: hot water and baking soda on the pee hole, hot rice pack on the pee hole, some magic pee hole creme that lost the cap so I just squeeze out half the tube in the trash hoping that was cap-like…on the pee hole. And a prayer.

Didn’t work.

FFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFF

Now I had to sit in the car for 4 hours on a hot pee hole.

Today I drew a line in the pee and called the super special IC doctor (regular doctors still give you side eye about IC). It was *super* easy to get a doctor on the phone the day after Christmas. And by super easy I mean it was NOT EASY AT ALL.

Finally I got the meds. All they do is numb the stuff. It’s no cure. But you pee orange and that’s delightful. The other med turns your pee purple. It’s really just a color preference.

So here I am, dreaming of an orange Christmas. JUST like the ones I used to know.

Oh yeah, Glovedhistoysanditwasmagicalandblahblahblah.

I’ll be doing a WANA thank you post shortly. My pee hole just needed to be heard. I really have no say in any of this.

If any of you have IC and can offer any super sassy remedies, I’m all ears/vagina holes.

And if all of this wasn’t exactly the Christmas spirit you were looking for. NEITHER WAS I. But because I like you, rest your eyes here and tell me what a damn sap I am now.

 

 

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POSTED IN: I hate everyone,Not Pleased,You think you know but you have no idea

{ 60 comments }

Betv December 26, 2011 at 8:57 pm

Ahhh rittenour and their sage wisdom… Feel better :/

KT December 26, 2011 at 8:57 pm

That video was beautiful and totally made me cry. Love it. Hope you feel better, MODG!!

Sara December 27, 2011 at 9:17 am

I don’t see a video. What is everyone talking about? Am I stupid?

Mel December 27, 2011 at 9:53 am

It’s the link she put at the bottom of the post of G’s first year. Click where she says “rest your eyes here”.

Jenny December 26, 2011 at 8:57 pm

OMG THAT IS THE CUTEST THING I EVER SAW EVER IN MY WHOLE LIFE.

(sorry about the whole peehole thing…focusing on the positive!)

xo,

~J

Jayme December 26, 2011 at 8:57 pm

Oh your poor burning pee hole! I used to get horrible UTIs all of the time in college. NO, not from STDs. Just lots of sex. There is a nice OTC medication that actually just numbs it but it helps until you can get to a doctor and get the good stuff. It is AZO. It turns your pee orange too. I keep some in my medicine cabinet just in case. It may work for you too.

Laura December 27, 2011 at 9:29 am

Azo is great! It’s the same drug as what you get at the doctors office, but a lower dosage. I had the unfortunate surprise of going to the pharmacy once thinking my doctor’s office had phoned in a prescription and it wasn’t there. The pharmacist told me to buy the Azo and just take two.

Jacqueline December 26, 2011 at 9:00 pm

I thought I was the only person ever to have IC?!? everytime I say it people are like whhhaat?? Is that contagious?? Ummm no. Anyways – my IC has been on hiatus since I had a procedure done by my urologist. It was a one day procedure but they did put me out for it. They basically go up throughout said burning pee hole and inflate it as much as possible to burst all the vessels that are causing the pain/burning/inflammation. When it was over that first (maybe possibly second third and fourth too) pee’s were horrific….but then the magic kicked in and I haven’t had a problem since…about 6 years and 2 pregnancies later!

RMarie December 26, 2011 at 9:27 pm

I believe you’re referring to a cystoscopy, I think. :) I’ve had IC since BIRTH, I swear. But they finally came up with the fancy term for it, circa 2002, for me. Loves!!! Modg, I can’t offer many remedies or insight into the IC situation. There seriously isn’t much my doc (Johns Hopkins special, btw.) can do, which baffles me. But whatev. I found that when I was pregnant (twice), my IC was in remission—-bazillion YAYS!! But every so often, I get a flare-up and it’s just a nasty ordeal. By nasty, I mean pee hole fire and stinging nightmares. This is what I do: hurry and take 4 ibuprofen and two extra-stregth tylenol (equivalent of a lortab, for all y’all who aren’t aware of this yet), and then get my handy ice pack (it’s hard and came in my portable breast milk carrier, with my breast pump–GO FIGURE). I sit on the ground with my knees up to my chest, buck naked from the waist down with a blanket over me, and use my ice pack on the outside of the pee hole. THIS WORKS. I have no idea why. I think it brings down the inflammation. I sit there until I’m all numb from sitting on the ground, plus numb from the cold, and the pain starts to dissipate from the meds as well. Beyond this, I have found nothing else that works, and that’s beyond ridiculous. But I’ve just resolved myself to the fact that this is the way my life is, and count myself lucky that I don’t have chronic pain, because I’ve heard that a lot of people with IC have it ALL. THE. DAMN. TIME. WTF??!! I was part of a study on new medication for IC that they started using back in 2005, that basically coats the bladder, so that the nerve endings get less furious, less often. I didn’t notice a difference at all. SADS. Good luck though girly! You’re not alone. :) Loves!!

Modg December 26, 2011 at 9:51 pm

Had the cystoscopey and elmiron. Neither worked

15552196409522564546 December 26, 2011 at 10:50 pm

I too am an IC person. I totally agree with the cold compresses, but I never did it naked. What made a HUGE difference for me was diet. Cutting down on foods that turn into acids once digested & increasing the alkaline foods. You can google the Alkaline diet for tips. It really helped mine & it turned out my diet was very acidic. I know diet changes are the last thing you want to hear about after all your diet sacrifices with nursing G, but even some changes may help. You may have tried this already, so I’m sorry if it’s not a new tip. I have since had a lot less flare ups & am no longer super strict with it anymore. It is however just apart of the way I eat & I have learned to be cautious with certain foods. I’ve been there & feel your pain, literally!

15552196409522564546 December 26, 2011 at 11:07 pm

Wow! I just realized after reading all of these comments how lucky I was with my doctor & how simple my diagnosis was. It was a year after a car accident I was in, so I was already seeing an urologist for a fractured kidney. I went to West Chester & the doctor is affiliated with Chester County Hospital. He’s the absolute best! I had seen him for many years & eventually ‘graduated’ from his care. If you feel like you need a more supportive doctor look him up, (Donald- I believe) Andersen. He’s across from the hospital. I don’t believe that’s too far from you either. He diagnosed me base off of symptoms & didn’t give me any side eye & was just sooo supportive. I’m so sorry for everyone who’s had such a hard time with this. It’s real & horrible to live with. – meg (I’m somehow logged in under a weird #)

RMarie December 27, 2011 at 12:23 am

Yeah, I had the cystoscopy early on in the diagnosis process, and it didn’t do anything at all for me. I’ve just found that the ice packs work really well, but it has to be held on there for a bit for it to really relieve the pain. Sometimes I’ll take a hot bath after the pain starts subsiding, and that does a really good job of just relaxing me to the point that the entire flare-up stops. But don’t make the mistake of taking a hot bath during a flare-up, because it’ll make it so much worse! The hot water just eggs on the inflammation and then it’s nothing but stinging nightmares FOREVAH!! :)

Kim Worstell January 11, 2012 at 4:33 pm

I thought I was the only person too!! Tell me more about this procedure with bursting and scariness?? I’ve only ever had lidocaine directly injected by catheter…which was um…awful. Is anyone else taking Elmiron? I take it 3 times a day and it definitely helps but it’s crazy $$ without insurance.

Michele December 26, 2011 at 9:09 pm

Girl, I am just so sorry about your pee hole. That sounds miserable and my heart (and sympathetic pee hole) go out to you. Here’s hoping it doesn’t happen for another 5 [billion] years.

Laura December 26, 2011 at 9:10 pm

What program did you use to make the video of G? I need to make one for my 15-month old but all the stuff that comes on my mac makes my brain bleed.

Lori December 26, 2011 at 9:14 pm

yes please tell us!!!!

Modg December 26, 2011 at 9:52 pm

iMovie

Lauren December 26, 2011 at 9:14 pm

This took me back…I had a judgmental doc misdiagnose a UTI/bladder infection as a stupid std in college. Which resulted in a) me being super suspicious of my stupid ass ex-boyfriend (who at THAT point wasn’t cheating on me. Yet. and B) ending up in the hospital since they treated me for the wrong damn thing and the infection moved into my kidneys. BOOO. All college girls aren’t sluts. Well….okay, I was for a bit but not during this Exact time period ;)

Kelsey December 26, 2011 at 9:27 pm

Swear to God, my patient swore this worked…I’m a labor and delivery nurse in KC and have taken care of a preggo who was hospitalized for (lots of preterm things and) an IC flare. When I received report from the night nurse, they told me to not be alarmed when I entered her room in the morning and heard a buzzing sound from underneath her covers…the patient used a vibrator over her urethra (pee hole) to help “relax and numb” the area and help make it easier to cope with ther IC. Seriously don’t know if she just told us this or if it really works, but it’s worth a try if you have a vibrator. ;)

Trisha Benish December 26, 2011 at 9:30 pm

Very awesome video. Good luck with your vag. I have never neard of IC but you can be certain I am web MDing it now.

Domesticated Gal December 26, 2011 at 9:45 pm

I totally just read that line as “Gloved His Toy And It Was Magical”

It’s probably a good thing I didn’t read this post outloud to my MIL. Or not.

13509259428538421682 December 26, 2011 at 11:31 pm

ME TOO. Sorry about the yelling. But I did and I feel way sorry for you and your pee.

Andréa December 26, 2011 at 11:35 pm

YES, me too and I was concerned.

RaeRae December 26, 2011 at 9:46 pm

Pee hole problems suck. Hope it feels better soon.
Video was awesome. I told my hubs that he has to start taking more videos of our little girl. I mean, he’s a video producer, so there’s really no excuse not to.

Beth December 26, 2011 at 9:55 pm

Apple cider vinegar in a hot bath

Jessica December 26, 2011 at 10:29 pm

I have the purple pee ones. Don’t they look like Spree candy? I love the purple pee color. So much more interesting than yellow. I have fantasies of slipping them into some guy’s drink at the bar. Because even if I’m taking them, I forget. And then I pee and I turn around a look –omigod! Purple pee! And then I remember and it’s delightfully funny.

Get well. Soon!

Ali Hochberg December 26, 2011 at 10:32 pm

MODG:
I’ve been battling the IC demon since I was 16. I, too, have experienced the jaded medical-degree-holding side eye for years on end, diagnosed with everything from cancer to chronic bladder infections to a variety of STDs. I’ve had a uterosacral nerve ablation (aka: no-fun-at-all where they go in and sever nerves in your abdomen), a bladder hydrodistention (which I’m pretty sure is a holdover from medieval torture times…and also it didn’t work, so yay for all pain and no gain), and have been on elmiron (no help), ativan (good for other stuff, but not the pee hole and pee tract), neurontin (made me feel like ASS for two weeks, then no help whatsoever), and detrol (pretty sure it just made matters worse). I’ve done a bunch of bladder instills, which help temporarily…since G isn’t on your boob anymore this might be an option since they can put more magical stuff in the concoction. I used to soak the super thick old lady pads (think: what they handed out in the hospital after you gave birth) in chamomile tea, put these in the freezer, then apply directly to outer pee hole. This seemed to help a little bit. That and massive doses of ibuprofin and occasionally Tylenol with codeine. IC bites the big one and I hate that SO many doctors put it in the category of “I’m sure you’re just a hypersensitive female and there’s not really anything wrong with you so I’ll just nod my head and humor you” I hope you feel better soon. BOO to pee holes that pee chinese stars!!

15552196409522564546 December 26, 2011 at 10:57 pm

Wow! Ativan made my IC worse; I lost bladder control while on it. Otherwise, yes, it’s good stuff. Oh & the Detrol is the worst thing ever! It would dehydrate me so badly I couldn’t speak in the mornings. I always recommend to stay away from that.

colleen December 26, 2011 at 10:42 pm

that video was amazing. thank you.

feel better soon!

Therese December 27, 2011 at 12:11 am

Ask your urologist about imipramine! That’s what I got after the elmiron and purple pee making pills. I also prefer the orange pee pills to the purple, don’t know about you. But seriously, if you haven’t tried imipramine, do it!!

Therese December 27, 2011 at 12:13 am

…also, don’t you love the power of the pee coloring pills and their ability to rule out a bladder infection? It’s like, if they work, it’s an IC flare up, if they don’t, it’s a UTI. Little diagnostic geniuses.

Niks December 27, 2011 at 1:43 am

OK, so a few months back I had something that was a huge issue and caused that UTI feeling. Something that helped me was a cup of warm water and a 1/2 or full teaspoon of baking soda… drinking it, every few hours. It was horribly disgusting and had a horrible taste, however, the baking soda neutralizes the acid in your pee and makes it easier on your peehole when you have to go all the time. Also flush your body with lots of water or herbal teas. Hope the flare up resolves itself soon.

AW December 27, 2011 at 9:05 am

I was diagnosed with IC last year. The doc all but accused me of being a dirty skank! However, I have been on a daily regime of Zyrtec and Marshmallow Root pills and have had 1 very mild and minor flare up. The Zyrtec blocks the hystamines in your bladder and the Marshmallow Root pills are an anti-inflamatory. Both are sold over the counter very cheaply! I swear by this method!

Tracy December 27, 2011 at 9:13 am

That was such a great video MODG! I love how much they change in that first year.

Juliette December 27, 2011 at 9:23 am

Wow, that definitely looks like an anonymous group for vagina problem^^

I’m on team purple (if that was the question…)

Mindy December 27, 2011 at 10:22 am

I stockpile those prescription pills that turn your pee orange (since stupid AZOs do nothing for me) and keep them in my purse at all times. My UTIs go from zero to “no seriously, please just kill me instead” in a matter of 1 maybe 2 hours.

I’m sorry about your peehole problems :-/

Fernando May 22, 2012 at 4:11 pm

Fanny, My GSD is a very rough tugger, and ululsay just grabs the tug and runs away. The hand touch would be awesome to use with tugging I have never seen anyone do this before.I am fascinated by this, but not sure how to teach it. I see I need to teach hand-touch and hold separately, but not sure how to backchain these together. Do you also teach him to out if you are still holding the tug but stop pulling back? (that is a method i have heard of from other people who do Schutzhund).thank you,JackyCanada

Kathleen December 27, 2011 at 10:26 am

I’ve never commented before, but I have a really good friend who was diagnosed with IC a couple of years ago. I know you probably don’t want to hear this but she got a specialist and was told she needed to drastically alter her diet, like another commenter already mentioned, to reduce the acidity. She had to go on a super restricted diet for several months and gradually she has been able to add some things back in, tomatoes are still a no go though. I think this diet is also coupled with a medication, but I don’t know what it is. She also says she tends to wear looser pants and lots of skirts, and she can only drink certain kinds of alcohol (no red wine) in limited amounts. I know none of that is great news, but hopefully the info will be somewhat helpful.

Heather December 27, 2011 at 10:51 am

From a seasoned pee hole problemee: This. fucking sucks. I’ve never heard of it and from someone who was getting a UTI once a MF month for oh I don’t know like a YEAR, I feel your pain (pun). Drink heavily, cry to your husband and wear sweatpants. Works like a charm, trust me. Okay not really but since the meds they give you don’t do anything this seems like a logical plan B. Feel better!!

GEG December 27, 2011 at 11:22 am

that video is so sweet. my girl is turning 1 a month from today and I’m not ready!

stephanie December 27, 2011 at 11:25 am

I suffer from this, too. I sometimes dread wearing pants and am constantly thinking about it. I also look at other women and wonder if anyone else is suffering like I am. It would be so nice not to have to think about it! My husband is suffering, too, because it makes sex soooo not fun. I drink marshmallow root tea and I ordered d mannose powder called clear tract that is good for both uti and ic’s. I also read somewhere that if you take a lot of antibiotics for what you think is a uti but it is really ic (like I did) it makes your ic worse! You have basically fried out the lining of your bladder. The tea is supposed to be soothing to that. I also can’t drink white wine but red doesn’t seem to bother me, but then again maybe it does. There are also a few books I saw on Amazon that suggest lifestyle changes, which is my next step. I hope you find something that works for you and if you do please share!

Sarah M December 27, 2011 at 11:40 am

Oh rittnour…I swear that place made me feel like I was some sort of leprodic lab rat. And the hoops one had to jump through just to get a damn z pack! Hope the IC goes away. And that video of your son is weepy precious.

joanne December 27, 2011 at 11:54 am

can you please make that video available for us to see on our mobiles? im DYING to see it and im stuck in hospital work hell where they dont have youtube….thanks

Sara December 27, 2011 at 1:37 pm

This sounds like something (perhaps the same thing?) a friend of mine has. She kept getting misdiagnosed with UTI’s until she went to the Center for Female Sexuality in NYC and they diagnosed her properly. They found the condition to be related to her testosterone levels (they were too low) If you have the same condition, perhaps it returned because your period came back and messed with your hormone levels? It’s just a thought. If you’d like, hit me up and I will put you in touch with my friend so you can discuss it with her directly.

Sarah RDH December 27, 2011 at 7:27 pm

Im sorry your pee hole is burning. BUT…..I simply MUST see more video of G pushing seemingly dead, I mean napping, cats across the floor. That was HYSTERICAL.

Jackie December 27, 2011 at 10:46 pm

I have IC too! High five! Sorry you had a flare on Christmas. That’s the worst. I’m one of the lucky ones…only took me about oh 3 years to get a diagnosis and only one of those was really bad. I heard lots of “well there’s a little bit of bacteria so we’ll put you an antibiotic anyway.” turns out that doesn’t work now does it. What medicine did you take? Azo? I don’t know why they haven’t invented a better flare med yet. Doesn’t seem like it would be that complicated. Baking soda and chamomile tea work about as good as anything for me.

Cystoscopies are a form of torture.

Mattie December 28, 2011 at 12:56 am

Okay your video totally made me cry. I think its because my hubby and I have been TTC for almost 1 1/2 years and have had no luck. Go next month for a fertility consult, would have gone earlier but have had other medical issues. I know this has nothing to do with your post but i’ve been following your blog since your blue breast milk episode and I guess you could say i’m learning what I can now for when I finally do have kids. Anywho, have any of you ladies had trouble conceiving? If so, how long did it take? I’m in need of a pick me up because it sure is depressing.

GEG December 28, 2011 at 12:04 pm

Mattie,
it took us 18 months, including 6 months of Clomid. we have an 11-month-old now. your time will come soon :)

TJ December 28, 2011 at 2:43 pm

For me it took a year and a half and 1 miscarriage. Friends of mine tried for 2 1/2 years, including 6 months of clomid and 2 miscarriages. They were looking into adoption when she found out she was pregnant. Their daughter is 5 months old and gorgeous. Good luck!

Brenna December 28, 2011 at 9:53 am

I also have IC and I blog about it too (and other things, of course)! I’ve had it since the mid-90s but was misdiagnosed (NATURALLY) and then went in to remission for a few years. It came back with a vengeance February 2011 and I’ve been battling it ever since. I eat a restricted diet, take Elmiron and Elavil, and I’ve done Pyridium (fun orange pee that stains, but if you take it three times a day for a few months, you get sick… something about interfering with red blood cell production, as if you need those) and then Prosed (much more pleasant blue pee, but it doesn’t work as well and I recently learned that the reason I started feeling drugged out and stupid while taking it is that it isn’t supposed to be taken with Elavil, thank you doctor-who-is-supposed-to-know-this-stuff). I do instillations too, and those really helped. Plus I had months of physical therapy, which was EXTREMELY helpful but not very much fun at all.

You can click the IC tab on my blog if you are interested in reading about my experiences. I amuse myself and my nurse (and my readers) by writing stupid stuff on my urine sample cups :)

Best wishes to you. I’m sorry to hear of anyone suffering from this ridiculous disease.

Sara December 28, 2011 at 11:05 am

I forgot all about your vagina or your pee hole or whatever it is that burns. That video is precious with a capital P. Love it. My favorite part is watching him push the cat. You are a sap afterall :)

OurGrowingGarden December 28, 2011 at 4:36 pm

What? I see no video? ::scratches head::

Can you put tea tree oil in a sitz bath? I did that for my last yeast infection (where I almost died from fire-gina) and it gave a sort of cooling sensation. I’m sorry :( If it’s anything like my last YI where there was basically smoke coming out of my vagina bc it was burning so bad, then I know your misery. Feel better soon. Vag troubles are the WORST.

Our Growing Garden: A Family Blog…not a blog about gardening

Becky December 28, 2011 at 10:01 pm

I’ve taken AZT from Walgreens or another pharmacy. It numbs everything and it helps so fast!! :) You can get a prescription that’s WAY better, but the AZT is ok too!

Jennifer December 28, 2011 at 11:06 pm

So sorry about your pee hole. That sounds awful. I have no advice for you, but am so sorry.

The video, however, is awesome. I just bawled my eyes out, as if it were the video I made (er, had made) for my daughter’s first birthday three years ago. G is a beautiful baby and you have a beautiful family. As a mom of 2, I know that it all goes by too fast. Also, thanks for posting the video to “remind” me that it’s time to get busy on the one for my little man – he’ll be 1 in just two weeks. Where does the time go?

linka72 December 30, 2011 at 3:38 pm

I seriously should cyber poke you in the eye for making me weep AGAIN at work watching that video..*le sigh*, he is cute.

elizabeth January 1, 2012 at 11:36 pm

OMG I have IC and I got it in college too!!!! and it took a year and many, many STD testS and a DR asking me if I might have a “psychological disorder” until finally it was discovered-OMG this is the worst pain ever-and for six weeks in college I had to go once a week and get a catheter in my bladder of a “cocktail” to reach the infection………and after , as it was every Thursday, was going out night and everyone said they smelled ammonia-that ammonia smell was coming from me-but it cured it THANK GOD!!! I LOVE THE SMELL OF AMMONIA NOW……

Emily G. January 5, 2012 at 2:35 am

I have IC and endometriosis, so I’m no newbie to pain. I also have taken elmiron (no help) and had the bladder installations once a week. Something about the “cocktail” of meds made me reek of garlic all the damn time. Now I’ve cut out my beloved chai teas and cappuchini in favor of…water. Boring, but my flare ups are less. I don’t tend to eat tons of acidic foods or have anything caffeinated. So the pee hole is fine for now.
Now I just have to deal with the pain from endometriosis and the ever increasing sense that all of my reproductive organs are going to fall out. It’s a real thing, and I see a doc for it tomorrow.

I hope things have calmed down since Christmas.

Kim March 11, 2012 at 8:05 pm

I was diagnosed with IC in 2001. Been in what I guess you would call a “medicated” remission since about 2003 or so. If you ever want to talk or vent or whatever, feel free to e-mail. I have no idea if you are still in a flare from hell – I just found your blog today. The IC Network was a godsend to me for several years and I used to be a moderator there. Very rarely get over there anymore, but it was so helpful.

Anyway, hope your flare has ended by now.

Kim March 11, 2012 at 8:06 pm

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