Emily
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Post by Emily on Jul 31, 2013 21:04:18 GMT -5
I've had catheters placed before with the lidocaine gel and it still causes me a lot of pain, which is why I took the day off. It's a Friday and I have some sick days to burn, so might as well start my weekend early I also had concerns about her not being able to see what was going on with just the cysto, but she thinks that between the CT scan and the cysto she will be able to get a good idea of what's going on and schedule a hydrodistention if need be.
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Post by Karen on Jul 31, 2013 22:34:55 GMT -5
I had a cystoscopy a few years ago and it was brutal, but I was also in a ton of pain at the time so that didn't help. I went back to work and wish I hadn't, so I think you're being safe by taking the day off. Good luck.
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Post by omaklackey on Aug 1, 2013 12:50:26 GMT -5
Catheters placed in a hospital or ER, are usually are a french 14, which are HUGE! The cystoscopy is about a french 8 which is much tinier. That's not to say its not going to hurt. My IC had travelled down the ureter which is what caused a significant amount of pain. Also they will give you pain meds and an antibiotic for prevention after. BUT I had myself convinced it would hurt like when they tried to cath me in the ER after my hysterectomy and it wasn't nearly that bad. Remember that relaxing inspite of the pain is important as it helps the catheter to advance more easily
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Emily
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Posts: 148
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Post by Emily on Aug 9, 2013 19:06:52 GMT -5
Well, I had my cystoscopy today, and to sum it up, OUCH! I got a French 14, lucky me! She didn't give me pain meds, but I have a pretty generous prescription of T3 from my gyno that has come in handy today. I got a CT with IV contrast, an X-ray, and the cysto. The radiologist did not have time to read them, but my doctor said that nothing glaringly obvious was wrong. I have a cyst in one of my kidneys, but was told that they don't usually cause issues. During the cysto, the urologist did see a couple of areas where the lining of the bladder was thinned out, so that is probably the cause of the pain. There was blood and protein in my urine, so she's referring me to a nephrologist to get that checked out. As far as treatment, she gave me a med called Myrbetriq to calm down my bladder and referred me to a PT who specializes in pelvic pain. My eyes lit up when she mentioned that because I keep reading Karen's recommendations to do it! Hoping that these two things will help.
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Post by omaklackey on Aug 9, 2013 20:06:30 GMT -5
remember not to give up on an IC diagnosis just on the cystoscopy! I would recommend a gynecologist/urologist if you can find one. A hydrodistention is the best way to see if its Interstitial Cystitis.
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Post by Karen on Aug 10, 2013 11:36:14 GMT -5
Ooh, good luck with the PT! Make sure the PT knows visceral / fascia release! I had to go to a few to find the right one, but it was well worth it!
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Post by fishguru on Sept 14, 2013 19:52:35 GMT -5
Oh my gosh....I've been having urinary issue for the last year and just *knew* it was somehow related to my endo. It always seems when my endo is flaring, my urinary issues start bothering me, too.
I've been to see a Gynecologist Urologist. What a waste of time! He yawned while I was describing my symptoms!! Good grief. He took a look down there and then wanted me to do a 24 hour pee collection test; not where I save the pee, but where I log the amounts I pee.
I kept telling him that I pee normal amounts, but it just feels *weird*. Constant feelings that I have to go, pressure and burning feelings down there. I told him that using Bikini Zone (2% lidocaine) right on my urethra helps for about an hour at a time. (I can then sit thru most of a movie, etc.)
He had no comment on my self-treatment. No offer of anything other pain med. Nothing. Other than do the 24 hour pee collection.
I never went back. I continue to do my own research.
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Post by omaklackey on Sept 14, 2013 21:26:57 GMT -5
Fishguru - Sounds a little like my first urologist. He just pushed pills, did a scope and sent me on my way with no diagnosis. Go to IC-Network. They have a list of doctors who they recommend to deal with IC. Also it really needs a bladder hydrodistention/cystoscopy to properly diagnose it so be ready to ask for those to get a "proper" diagnosis. IC Network It is treatable and the first thing you can do is modify your diet. Water only, plenty of it. No Coffee, Tea, pop, juice, acidic fruit... it does help although my real "fix" is the at home bladder instillations. I was fortunate that my doctor knew about them and is progressive enough to allow her patients to do them.
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Emily
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Post by Emily on Sept 14, 2013 23:14:49 GMT -5
I gave the pt 5 tries and I have decided to discontinue it. I loved my therapist and she obviously knew what she was doing, but the combination of paying $40 for each session and the fact that I had increasingly awful flares over the past 2-3 weeks, I am no longer going. My urologist told me I would be able to tell within 4-5 sessions, so I feel like I gave it a good try. I also discontinued use of Myrbetriq. I was given 1 month of samples but was told by insurance that I would be paying an arm and a leg for it, plus I didn't notice much of a difference. Even though my urologist saw abnormalities during my cysto, I think I might be better off requesting the hydrodistention. At my wit's end and wanting to try anything!
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Post by omaklackey on Oct 7, 2013 20:47:58 GMT -5
I hate to say it, but you are probably right and it would be wise to get the hydrodistention. If they don't see anything then its more likely endo on the outside (I had that too..) but at least you will know!?
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Emily
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Posts: 148
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Post by Emily on Oct 9, 2013 16:29:48 GMT -5
I had another appointment with my urologist yesterday and she is against hydrodistention. She said that if I am really adamant about it, she will do it, but advises against it because she is treating me for IC anyway. She saw the thin patches in my bladder and does not want to put me through more painful tests if she doesn't have to, which I respect. She put me on a different drug, Elavil, and I was wondering if anyone has tried it or is currently on it. I did a search and only came up with a few results, most of which just briefly mentioned it. It is a tricyclic antidepressant, but at low doses is shown to help with pain. I took the first dose last night and could barely get out of bed in the morning- so groggy. I have felt like a total space cadet all day, but that's why she told me to take it before bed. Kinda scared for when I need to take pain medicine because I don't think I will be able to string 2 words together. So, the plan is to see how I do on this medicine and decide if I really want a hydrodistention. She also advised that I meet with my endo surgeon to see about the possibility of endo growing back on my bladder and that being the cause of my issues, since they are largely cyclical. Ugh.
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Post by omaklackey on Oct 11, 2013 11:44:02 GMT -5
One medication that helped me was Hyophen. You could ask your doctor about it. Also hydroxzyine, although if you are sleepy on elavil you might be on the hydroxzyine as well. I don't have to use the hyophen anymore because I do at home bladder instillations. They are amazing and the best treatment for IC. It takes a while to build up but once they do you can get blessed weeks of relief. At home is better as I can do it anytime I flare (like when you accidently caffiene yourself). But some doctors won't do that and will only do in office bladder instills. So there are other treatments you can ask about it the amytriptiline doesn't cut it.
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Emily
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Posts: 148
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Post by Emily on Oct 20, 2013 12:08:04 GMT -5
Just an update on the Elavil... I love it! The sleepiness and air-headed feeling have subsided after a few days and now at the 2 week mark it's just a tad harder to get out of bed in the morning than it was before taking the Elavil. In the past 2 weeks I have taken maybe 1 or 2 doses of Tylenol #3, which is down from needing to take it a few days a week. Ibuprofen or Celebrex have been enough to keep my pain levels down for both the IC and the endo. I also really like that my uro allows me to adjust my dose (after the 2 week mark) between 12.5 mg (half a pill) and 50 mg (2 pills). I can see where this will really come in handy for my period, which is coming up. It also is helping with my migraines and run-of-the-mill headaches.
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Post by lanacoral on May 2, 2014 19:17:51 GMT -5
*raises hand* I have IC too. Had IC symptoms my whole life ugh. I took Elavil for 3 years. The first was great but after that it went downhill. Super high blood pressure, dizziness, gained 30 lbs, exhausted 24/7. I recently stopped Elavil and I'm glad I did. it helped me get through the transition period of changing my life and calming my bladder, but by the end it was like being drugged all the time. I was on 30mg.
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