Arousal feeling...hate IC

[teelag]

Hi everyone,
I was reading the "Symptoms" thread when I noticed a few of you saying you have that uncomfortable arousal feeling with IC when you are not aroused.

I have that same symptom...so glad to see it's not as uncommon as I had thought! I rarely see anyone post about it.

When my IC was first diagnosed and milder, I would very rarely get that, and one Urised would help it go away. Now three years into my IC diagnosis, I get that feeling much more often...and HATE IT!! So uncomfortable.

Recently I tried Neurontin and Lyrica at varying doses to try and help the burning, irritated feeling in my bladder. Cruelly enough, it made my bladder feel better but a horrible side effect was it made this arousal feeling come on super strong and constant. These are suppose to calm nerves, and here it totally made things worse. It has subsided some since I quit the Lyrica a week ago, but still comes and goes!

How do you know if you have pudendal nerve problems vs. IC or both? My uro said it sounded like pudendal nerve irritation, but not sure why.

Just though I would let you know you all are not alone with that feeling! YUCK!

[Imustpee]

I had that almost all the time! I never thought of it as "uncomfortable arousal feeling" until now, but that's exactly what it felt like....I always thought it felt like an uncomfortable pressure.......I had my bladder removed 4 months ago so I don't have that feeling anymore...good riddance!

[Pernie]

That has happened to me a couple of times. It's very weird.

[sistersara77]

I mustpee
What happens when you remove your bladder? How do u go? I hate that aroused feeling is why I'm asking. The last couple of times I had that feeling I took two Vesicare/5mgs each and it did the trick. I have that aroused feeling now and I'm about to take the vesicare to see if it really works. Wish me luck!! :D

[Dawn1216]

I have that exact feeling. It is so frustrating! My doctor gave me Urelle because it is pretty much a discomfort I guess. I couldn't tolerate Elavil because it made me like a zombie.

[ICNDonna]

I had the same symptom periodically for about six or eight months --- then one day I realized it hadn't happened for what seemed like a long time --- and it hasn't returned. Hopefully the same thing will happen with you.

Donna

[Dawn1216]

I hope so too. Thanks Donna!

[teelag]

Thanks for the replies...nice to know it's not just me.

I have noticed that it comes and goes, and now I think one reason I get it is from bouts of constipation. I am really trying to get that under control. I am theorizing that chronic constipation can irritate the pudendal nerve, which can lead to these pressure arousal feelings, plus it definitely aggravates IC. Hopefully I can figure it out.

[lauraads]

Now to embarrass myself! I started having it and it was so bad that I would actually wake up having an orgasm, sometimes several times a night. I felt nuts all day with discomfort. It really grew to an all-out nightmare and I feared living that way on top of all the other IC symptoms. I started analyzing what I was doing differently. In my case I was able to trace it to licorice root -- I was taking a few drops each morning in water to help repair my adrenals. When I cut them out as a test, I went back to normal. I noticed similar reaction to nasal-based allergy meds.

So, perhaps you can track it to a certain med or supplement as well. I hope so!

BTW, did anyone see the 60 Minutes episode I think last weekend that talked about Grey's Anatomy? They actually profiled on one of their shows a rare disorder where women are sexual aroused all the time. So, it is actually another disorder, and they not surprisingly linked it to other diseases you see around IC such as fibro.

[teelag]

Thanks for sharing Laura...really makes me feel better that I am not the only one. I had the exact same thing happening..waking up with an orgasm, constant arousal feeling during the day. Really unbearable!! My uro had no idea "why", but did tell me that he had IC pts with this before, but had no advice to make it stop.

Like you, I started analyzing why this had suddently gotten worse. I definitely think one of the reasons I get that feeling is from medications I try. I figured out that I had that feeling very rarely until I started taking Neurontin. The longer I took Neurontin, the more this feeling became constant. So I switched to Lyrica...same thing. It was such a bummer because the Lyrica was actually really helping the bladder pain, but this arousal feeling was much more uncomfortable than the bladder, for sure!! It took awhile for the feeling to die down after stopping those meds and I still get it when I flare, get constipated, etc.

I also got this feeling when I tried taking OTC Claritin when I was first diagnosed a few years ago. Now I am scared to try Vistaril, for fear the same thing will happen!

I recently discovered if I take a Pyridium Plus, a lot of times that feeling will go away. This pretty much tells me that it is some weird referred pain from the bladder and hopefully not some other weird problem.

Thanks for the input though....very helpful!

[lauraads]

Geez; I just got neurontin yesterday and haven't started it yet! Not too excited about it now! Hope it doesn't do it to me like the other stuff has in the past! Don't you dream of a day when we can get past all the, as you perfectly put it, 'weird problems'?

[BigFig]

Gosh you guys, I use to have that arousal feelings all of the time, sometimes nightly where I would wake up having an orgasm. I thought it was normal, I did mention it to one of the girlfriends years ago and she said she had the same thing happen but only occasionally. I always figured it was a from a dream that had gone "good".:evilsmile LOL! I have had that arousal feelings sometimes during the day, but that was before IC. I wonder if mine is something different or the same thing, it must of been, because I can't say that I found it annoying. Oh well, it rarely happens now, I'm sure because of the meds that I am on plus the fact that I am scared to have one (orgasm) because it might irritate my IC.

[lisacar]

When I'm frustrated with life, and in a lot of pain, or having a post-traumatic moment of self-despair etc, I can really bring on the waterworks. If I cry really hard, like from the gut, I get that arousal feeling. It always strikes me as soooo bizarre, because it's the last thing in the world I want at that moment. I wish I were courageous enough to ask my boss - who's a neurologist, why, but I just can't quite bring myself to do it. :dizzy: I think my wires must be REALLY crossed, or the crying tightens my pelvic muscles to a the point they are like violin strings.


Lisa

[Briza]

I get this feeling only when I take Claritin. Strange!!!! I should probably take Claritin more often!:smile tee

[teelag]

Just like everything with IC, everyone's body reacts differently to meds, so don't worry about trying Neurontin. You might do great on it! I found Neurontin really sedating at first, but it did help with bladder pain and after awhile I wasn't as tired. I went on to try Lyrica, which was less sedating, helped the bladder pain a lot, and if it wasn't for that darn feeling, I would have loved to stay on it. I don't know why I reacted that way to Neurontin and Lyrica, because they are suppose to calm nerves!

For some reason, I rarely had that arousal feeling with my IC pre-pregnancy. I was pregnant last year, and did quite well being on no meds, and never had it the whole pregnancy. Now, 10 months post-pregnancy, I get that unwanted arousal feeling a lot more...the only med that I am on now that I wasn't on before pregnancy is BCP Ovcon 35. I was on it a few months and then the feeling started. So now...is it the pill doing it? Or could I have pelvic floor issues? Who knows. I feel like the pill helps my IC and really makes my periods very light, short, and more manageable.

Lisa, I bet you are right. I think that crying hard really does affect the abdominal and pelvic floor muscles. I know I usually get a flare when I have a bad cough from a cold or something. I can just feel everything get tight.

So maybe I should revisit the idea of pelvic floor issues, though I didn't have them before.

Briza, wonder why we both had that reaction with Claritin. When I told my uro, he believed me, but I felt like he was thinking What??!!

Enough of my babble...I sure wish I had an answer to make it GO AWAY, because to me it is far worse than the bladder pain!

[Briza]

Teelag
Yes, it's weird. I get that kind of amped feeling (restless, can't sleep) when I take allergy meds and decongestants and it definitely affects that part of my body,too. I'm sure it wouldn't be fun to have this feeling all the time, but when I take a Claritin is one of the rare times since IC began that I call my BF and say, honey, you better get home quick (before this feeling passes :)).

For those of you who suffer with this, please excuse my joking about it. I understand completely that is not a joking matter for you! So many mysterious things associated with IC.