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» LymeNet Flash » Questions and Discussion » Medical Questions » Here we go again-Interstitial Cystitis Part 2. Need Input

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Author Topic: Here we go again-Interstitial Cystitis Part 2. Need Input
Bartenderbonnie
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Had to start new thread on I.C. journey.

Umm, well, scheduled to go to hospital on Thursday for outpatient procedure under general anesthesia.

I went for numbing treatment this morning. Instant relief.

But. . .
Pain came roaring back 4 hours later.

Doctor decided I needed a cystoscope bladder distention.

Has anyone with Neuro Lyme ever had this done ?
Will it make the ketes burrow deeper in bladder tissue ?

Should I have a PCR biopsy for Lyme done ?
I am already clinically diagnosised and in treatment.
But you all know how I am about documentation.

I m scared to get it done. Absolutely hate anesthesia !

Told loved ones, if I don't wake up, find comfort in knowing I am pain free.

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TF
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Did you ever have this procedure before?

I had it when I was in my 20s for a bladder infection.

Believe me, I could hardly wait for them to give me the anesthesia. First, they filled up my bladder. Then, they told me to urinate on the x-ray table.

I couldn't and most people can't.

The pain with the full bladder was bad. They didn't stop putting fluid in my bladder when I told them I was full. I guess they really need to distend the bladder.

So, if they do that to you also, just hang on knowing that they will shortly anesthetize you and you won't feel pain anymore.

I really don't think it will cause lyme to go further into the bladder. It is just like having a very full bladder which can happen in life.

They can see everything in bladder and urinary tube with this test. So, it can tell them an awful lot.

I hope it helps them figure out how to treat you!

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Bartenderbonnie
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You gotta be kidding me.

Someone, please make this madness stop, damn.

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Lymetoo
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I'm not sure which procedure you are referring to. I had one that is therapeutic AND diagnostic for IC.

It HAD to be done under anesthesia. HAD to be.

The first time I had it done, it was therapeutic and I was better for about a year. The next time I had it done, it made me worse and I had to retire from teaching.

Neither time did I KNOW I had Lyme .. but I did.

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Opinions, not medical advice!

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TF
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Perhaps you will be anesthetized right from the start. What they are doing to you is likely different from what they did to me. They were NOT looking for IC for me.

Here is what I found on the procedure you are going to have:

http://www.ichelp.org/diagnosis-treatment/diagnosis-of-ic/cystoscopy-with-hydrodistention/

Notice that it says: "You will not feel any pain during the procedure."

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Lymetoo
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Yep. That's the one. Since it's not even the gold standard for diagnosis anymore, I would not be willing to do that. And if you are already diagnosed .. then .. why?

Risk versus benefit ...

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Posts: 90244 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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Thanks for the link TF.

I have already been diagnosed with IC.
Doc is doing procedure to alleviate pain, and inspect.

Sorry Lymetutu.

I guess I m retired too, I just didn't know it.

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Lymetoo
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Good luck. I'm glad I'm not you.

[group hug]

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--Lymetutu--
Opinions, not medical advice!

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Bartenderbonnie
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Whoa, yowlzii, riding the pain train.

Mamma Mia, Holely tomolely.

Called LLMD. Took me off all Lyme meds.

I m way to stubborn to let this beat me.

Anesthesiologist better not pull an all-nighter.

This too shall pass. . .

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Bartenderbonnie
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Finally pain free ! Bladder distention successfull !

Checked in hospital 7am, home at 12pm.

Slight glitch. Blood pressure was 95 over 58. Waited 1/2 hour and it came up.

Anesthesiologist asked me if I was allergic to anything and I said yeah, pain.

She knocked me out before the doctor entered the operating room ! Thank you.

Doctor saw me in recovery. Said no cancer. Took pictures. Will explain everything at follow up office visit.

No pain. Haven't taken 1 pain med, no more lidocaine patches. No more crying.
Best I ve felt in months ! Even vertigo and tinnitis is at minimum. Astonishing !

In pre-op, anesthesiologist was going over my medical history.
Asked if I had heart problems, as my chart showed I had heart monitor in the summer.

It was that dreaded moment. . . Do I mention Lyme ?

Hey Tincup, I would have made you proud. Of coarse I mentioned Lyme !

As their time is valuable, I kept to the facts. Short sentences.

BB: It took me over 3 years and 19 docs to get diagnosised and treated. My story is the norm, not the exception.

Drug doc: That's because Lyme symptoms are vague, flu-like, chills, malaise.

BB: No, it's because Lyme western block testing is flawed. I had 5 tests all negative.

Drug doc: We have to go by tests because we are an evidence based society.

BB: But Lyme disease is a clinical based disease according to the C.D.C.

Drug doc: How did you know you had Lyme disease ?

BB: Unrelenting pain and fatigue, face numb, vertigo, couldn't talk, walk, no memory, spinal cord vibrations, paralysis.

Drug doc: well if you lived in Boston, or Connecticut, you would have been treated much faster.

BB: No infectious doctor will treat for Lyme unless you show positive western block, period ! I lived in a tick infested area(80% of ticks positive), pulled ticks off my dogs who also slept in my bed, had Neuro Lyme symptoms. But had negative test results. Clearly, the tests are flawed.

I Lyme educated 2 operating nurses, 2 student nursing students, an anesthesiologist,1 pre-op nurse, and 1 post-op nurse.

I talked until she put the mask over my face. I was talking through my mask. My last words were that Lyme destroyed my life as I once knew it, that Lyme is everywhere now, and to please show compassion to other Lyme sufferers.

All in all, it was a very productive day.

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Lymetoo
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*western blot*

I can't believe you didn't have any pain from that. I was in excruciating pain for probably a week.

Hats off to you, Lyme Warrior!

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lookup
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That's fantastic Bartenderbonnie! (pain free and educating everyone in site!) [woohoo]
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lookup
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quote:
Originally posted by lookup:
That's fantastic Bartenderbonnie! (pain free and educating everyone in sight!) [woohoo]


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Bartenderbonnie
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Thanks lookup.

You would have done the same.

Strength in numbers baby. [group hug]

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lookup
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That's right! Strength in numbers! [group hug]
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Tincup
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Ah ha! Just saw this post.

Yes, I am proud of you. Good girl! And I am so sorry for all you went thru, but glad you feel better now!!!

And you made me laugh. Your descriptions are always such that I can often "see" what you are talking about.

You said... "I talked until she put the mask over my face. I was talking through my mask."

THAT made me laugh. I can picture you doing that. And you did a grand job at educating so many too!

Just a tip for next time... for your own safety...

You might wait till the procedure is over before Lyme blasting them as good as you did!

Lucky you though, you got thru it with flying colors!

Congratulations! Keep up the good work!

[group hug]

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