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New issue, different day

May 11, 2016 8:54 AM

Good morning everyone,
Sorry I haven't checked in sooner. This week has been the pits for me. Have had issues with the hot water heater going off all week(2 cold showers right in a row). Yesterday was my most infamous day. Was apparently diagnosed with pelvic floor dysfunction on top of the interstitial cystitis. NOT a pleasant appointment at all. And who would have guessed that a cold bath can set off a pelvic floor spasm from hell. I thought yesterday was bad, while he was messing with me. Nope, today is worse. I tend to try to prepare myself for appointments like that ahead of time, but there was no getting those muscles to relax at all. So that might have made it worse. Right now as I type, the hot water heater is being drained so maintainence can put a new heating element in, and we shall see what happens. Sorry just needed to get that off my chest. I'm also trying to kind of prepare myself for tomorrow as well. Going to the surgeon at 10:15 am, so if you guys could be holding my hand, it would be much appreciated. I hate weeks like this.

May 11, 2016 11:05 AM

I'm so sorry to hear you have PFD! I've been dealing with this for a long time, over 15 years though it wasn't dx until 2010. My experience with PFD has caused spasms way up inside (deep internal) and along the pelvic floor, from the rectum to urethra. They can hit me at anytime, but tend to be worse with constipation, bladder infections, or sex (hence the abstaining). I've gone through pelvic floor therapy multiple times, and before the last series my urogynecologist did nerve block injx all into the perineum area (12-14)...omg! The shots were awful painful, but actually brought relief to the pelvic floor muscles that have lasted quite awhile now. Ask your doc about Levsin, a muscle relaxer for internal muscles. It works fairly good if I start taking them at the beginning of spasms. Sending you hugs & prayers! 🙂💕🙏🌼

May 11, 2016 11:34 AM

Flappys, at this point in time, we are not doing meds. Only Advil/Tylenol alternating every 6 hours. If that doesn't get them to quiet down, then we will do a round of pelvic floor PT. That appointment was so bad, that I wanted to start balling my eyes out, because it hurt like crap(not that word in particular). It was bad enough when he started working his way up to the muscles above my bladder. I was about ready to reach out and smack him across the head. OUCH!!! And I've also found that for me, cold water makes them so much worse!!! Hence the not having a good morning.

May 11, 2016 3:16 PM

The PFD PT isn't anywhere as painful as the exams unless they do manual therapy (I advise get nerve block injx first, trigger point shots). Mine have been done using internal e-stim devices. I've gone through 4 rounds of treatment in 2 years, because my muscles are so messed up they aren't retaining strength so we keep having to repeat treatments. I just went today about another round and she's talking about a home e-sim device. At this point it may be more financially feasible, at $45-visit (8 visits per round). The more treatments I've had, the less painful the spasms in the pelvic floor muscles. I think once you begin to get the muscles to relax you will begin feeling relief from the pelvic pain. It truly amazed me at how muscles in the pelvic floor can send shock waves of spasms & pain all the way up to the navel! Rest easy and do deep breathing relaxation, focusing on those muscles, to try and keep them from spasming. Hugs!! 🙂💕🙏🌼

May 12, 2016 6:33 PM

Flappys and to top things off,, another IC flare up has started, possibly from Tuesday's appointment. Even though he told me before that pelvic exams typically don't set off IC flare ups. Wrong!!!!!! Cause it most certainly did. Shew!!!! Oh well, back to chugging on water already.

May 16, 2016 12:05 PM

Flappys, I finally broke down and called the doc back this morning. It has NOT been a good weekend at all. I'm trying to be positive that the pelvic floor PT WILL work. Anything is better then how I feel now!!!!!!

May 18, 2016 8:40 PM

I'm so sorry I'm just seeing this Amanda! I hope you've had some improvement. My head's in a whirl and juggling too much myself at this point. PFT works but unfortunately for me I've had to repeat it multiple times, and each resolution has been closer together than the ones before. I just got prescribed a home unit, to try and stop the reversal of symptoms. Good luck! Hugs& prayers it goes very well for you! 🙂💕🙏🌼

May 19, 2016 5:21 PM

Flappys, first session went very well(yesterday). Tonight, I had to take a step back from it. Will do the stretches but the internal work is not going to happen tonight.. Too uncomfortably tight right now, and for the love of Mike, can't find the trigger points. I'm going to send my PT an email just letting her know what is going on, and is this okay so I'm not feeling totally discombobulated right now. She also told me yesterday that if it's still uncomfortably painful, then she will be glad to call my gyn and possibly get him to rx something.

May 19, 2016 7:54 PM

Did your gun do trigger point injections to relax the muscles, tendons, & ligaments? Mine did, 14 in all, all around the pelvic floor region. But I warn you it was so painful I nearly passed out, and I cried for the first time in a very long time while getting treatment. 😭 The injx did help with the PFT, but it hurt like crap!

May 20, 2016 4:01 PM

Flappys, not yet. And if he does, I'm gonna have to be knocked out I think. I can't tolerate that level of pain anymore.

May 20, 2016 4:39 PM

I would suggest it. If have opted for it has I known ahead of time. Hugs& prayers you won't need to go that route! 🙂💕🙏🌼

May 22, 2016 12:52 PM

Flappys, from what I understand, I think we are going to see how the PT works first. If it doesn't settle, then we might have to go that route, but won't know until middle of August.

May 22, 2016 1:01 PM

And I know this might sound nuts, but the first session of PT went great. Got up the next morning and all of the muscles had just tightened up again. kind of feels like a never ending cycle.

May 22, 2016 3:02 PM

Hi Amanda, I'm just sending you lots of caring hugs and hope you get relief. Glad you have flappyslady to talk with. ((Hugs))

May 24, 2016 8:03 AM

That's great, about the first session! I hope it keeps helping.

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