tips for avoiding urethral pain?

[megancolleen]

When I give myself an instill, after I urinate, I experience major burning and spasming in my urethra. This hasn't happened to me with the in-office instills. I think it may be because I'm being too rough in the way I insert the catheter? I feel like I really have to push the catheter to make sure it's going in and to get it to go in far enough. Bear in mind, that I've only done two instills on my own so far. I still feel like I don't really know what I'm doing.

If anyone has any advice about this, me and my very angry urethra would appreciate it!

[ICNDonna]

When I did home instillations, I inserted the catheter in a standing position. That way I knew immediately when the catheter was in far enough because the urine drained out through the catheter. I would put a flashlight on the floor in front of the toilet, then put one foot on the side of the seat so I could see easily.

Donna

[bunnykinb]

That is a good suggestion about putting the cath in while standing. I am getting another in office lession next week. The uro only has me doing heparin once every 2 weeks with 40,000 units. I think I need less and more often. Hmm.

[L. Thomas]

I learned to self-cath by sitting on a stool in the bathtub. I used a mirror on a stand so I could see what I was doing. If you spread the labia back you can see the urethra opening. I have tried to describe what I do in the link in my signature. Just PM me. I'll be happy to explain what I do if you have any questions. I have been instilling for a few years.

You will be surprised how skilled you become. I know my anatomy so well not that I can sit on the toilet and instill without problems.

My instill has 10,000 units of heparin. I instill as needed. That may include more than once a day if needed. Most of the time I need an instill every 3-4 days. But there are times that I don't need one for a week or two.

[aprilchen]

When I give myself an instill, after I urinate, I experience major burning and spasming in my urethra. This hasn't happened to me with the in-office instills. I think it may be because I'm being too rough in the way I insert the catheter? I feel like I really have to push the catheter to make sure it's going in and to get it to go in far enough. Bear in mind, that I've only done two instills on my own so far. I still feel like I don't really know what I'm doing.

If anyone has any advice about this, me and my very angry urethra would appreciate it!

Dear Megan, Sphinx and others who have asked:

You could ask for (it's either 1 or 2%) lidocaine gel. It comes in a small bottle with a squirt top (also known as Viscous Lidocaine) with the ability to use it instead of KY on the catheter and you could use a cu-tip and spread some in the area surrounding the urethra before you catheterize.

I will say that what really helps me (pain wise with catheterizing SO much) is using that gel. Before that my URO in MS, who I must credit for finally diagnosing me with a hydrodistention/cystoscope with IC and helped get the "opiate addict" term off my medical records. :-)

My urethra and that area was getting SO red and irritated since I have started these extra catheters with the new Cytotec. Last week, when I had to be taken to the E.R., the nurse made a comment about that area being SO irritated then someone on here wrote me and said that using the lidocaine gel is great, but you don't realize how irritated you are until you don't use it once when you cath.

Anyway, this lidocaine gel is a gift from God. I do have to be careful though not to irritate myself so much. When that happens, it hurts SO bad as I am sure most know that catheters a lot. With this new Cleveland Clinic regimen with Cytotec, I have to catheters at least twice a day to instill the heparin and lidocaine and also the Cytotec. And, if I can't urinate out the meds after an hour or am in retention...I have to catheters two more times a day, equaling four times a day to drain my bladder. Yuck!

PLEASE tell me someone has had this experience and I am not alone in this with the irritation as seen above. If so, any helpful thoughts/hints to make this irritation less would be most appreciated because on some levels, I honestly believe that we learn more from each other sometimes than our own doctors.

Does anyone know some more effective methods to cut down on irritation of the urethra from catheterizing??

I tried Lo-Fric Caths and hated them. They take WAY too long to drain the bladder and to instill my "cocktail" which has to be done without a plunger in the catheter syringe, but with the use of gravity. The medication I was instilling kept coming back up into the catheter like it wanted to drain it, so I use men’s 16fr red, non-latex catheters. They come in kits once insurance approves it. Till’ then I have to rely on the military base here at Wright-Patterson give me supplies.

BTW, if there is any one near a military base that has a hospital and inpatient pharmacy in the vicinity, you DO NOT have to use that pharmacy and pay for your Heparin, Lidocaine, Syringes, Needles, Catheters, etc. If your PCM writes a letter on Air Force Form 781 (form for multiple prescriptions); then you take your original handwritten prescriptions to the hospital INPATIENT pharmacy and you can get the supplies free there. I don’t know if this helps anyone, but it saves us a good $300 a month, which makes a HUGE difference.

I THINK the Cytotec might be starting to work because I ate chocolate today for the first time in OVER a year and it has not caused any problems so far. I am really glad! The doctors want me to reintroduce "forbidden" diet items one at a time to really tell if the treatments have helped. Also, not to go on a rant on Cytotec (because I posted more on that on the Cytotec forum), but I would encourage anyone who can't tolerate other more usual treatments like Vistaril, Atarax, Elavil and Elmiron to give this a try.

The catch is that if you're a woman of childbearing age, they want you on a reliable and consistent form of birth control so before I started it I had Implanon implanted in my left upper arm (one rod instead of three) and they say it is the most reliable as long as it is inserted correctly. All that beats it is abstinence and well, if you're married we all know that isn’t going to happen.

I do feel leaps and bounds better even though the treatments burn and are quite painful to hold for an hour at a time. I also got a medical company to take our insurance and send me sixty catheter kits with everything I need them in them a month so if you're having to pay for your catheters and supplies, please PM me and I can give you the information since I think it is against the rules to tell specifics about a company on here.

Sorry about the book I have written...but I hope we can help each other here. I am still NOT giving up on Cytotec because it is supposed to "heal" the glomerulations and I will still always have IC, not be able to take NSAIDS, Advil or anything containing Ibuprofen. Since bladder ulcerations are similar to stomach ulcers according to Dr. R. at the Cleveland Clinic, his theory is that if I am on a diet with food prohibited to those with stomach ulcers (which I already take Nexium for reflux) that the ulcers will be able to heal. This doesn’t then mean I can eat whatever I want…it simply means that maybe I can in small quantities as not to create more glomerulations on the bladder wall.

(The Cytotec label usage is for stomach ulcers and it is sometimes used to progress labor and delivery along with Pitocin (spelling?) so that is why you have to be on a VERY reliable form of birth control because it almost always causes miscarriages and having had three. I do not want anymore miscarriages because those are SO devastating. Mine happened because I was on birth control mini-pills with progestin only because of a blood clot in 2004 and apparently they weren’t effective enough because I got pregnant three times on them and subsequently miscarried when I was given I.V. Steroids (Solu-Medrol)--the Prednisone equivalent in higher doses for intravenous use.

Anyway, I have often wondered why they did not do a pregnancy test when I was admitted to the hospital on these three different occasions. Maybe it was negligence or something, but it was hard because the last one that happened, I knew about (had found out a couple days early because I was throwing up every morning) and had heard its heartbeat with the little Doppler machine.

But then I was not educated that I couldn’t take steroids or certain other meds. It was after these three miscarriages that I went for counseling with the base’s Perinatologist who deals with high risk pregnancies and he told me what I could and could not take when we start trying. But back to the miscarriages, the next day when I started passing clots, I knew it was gone. That was in December 2007 and I had to undergo a D &C because this one was further along. It just stirred up all those sad, depressed emotions again. Aaron did the best he could to support me through it and help me come to terms that when God wants us to have a child, we will and furthermore, that I should have MORE faith in God when it comes to healing and having children. I just can’t wait to see what our child would look like since I have red hair and freckles and Aaron is ½ Chinese with dark skin and dark brown eyes (both of us have brown eyes)...and we’re both really short too. I am just at five feet and Aaron is 5’3”. This works great for our marriage. And, any child born to us will hopefully inherit my husband’s skinny gene, but hopefully end up with some freckles or something that mimics my Irish background (though both Aaron and I were born in the states, MS and AL, respectively).

Seriously, mine and Aaron’s marriage hasn’t been the easiest of any by far so far. He is so compassionate when it comes to IC, kidney stones, the flu, the miscarriages, and ANYTIME I need him, he’s here for me—and the same goes for him. If he EVER needed me, I would be there for him and am in so many other ways besides medically. Besides having to be hospitalized after his deviated septum correction surgery, he experienced some serious bleeding that we would not get under control. Turns out that they had nicked a vein in the nose and it was spurting blood. By the time I got him to the gas station parking lot so he could throw up blood, I finally gave in and called an ambulance for him. He had to be admitted to make sure the bleeding would not re-start. And, then we were just engaged..so I thought to myself, I am the one who talked him into this surgery and now he’s going to break it off to find a less assertive woman (and sometimes a bit aggressive).

He was there for me through it all, holding me and meeting my every need along with my Savior, The LORD. I truly believe that when the LORD feels it is time for Aaron and me to have a child, he will provide. Also, if I can’t, then my husband is oriental (1/2 Chinese) and we could always adopt. There are SO many beautiful children of all cultural backgrounds who need good parents.

Also, when we do have children, I am so fortunate to have my mom, my grandmother, and two mother-in-laws so I am thinking we’ll have great help if everyone coordinates their time to be here, then I could rest for a couple weeks and recover from birth!

I am going off on a tangent here, but it’s late and all this is running through my mind.

What if IC gets worse when I get pregnant? Then, my medications are SO limited that I might be in pain the whole time. I hope and pray that I am one of the ones who gets better with pregnancy and that I don’t have morning sickness (too much to ask for…yeah, probably)…but it never hurts. PLEASE keep praying for healing and strength…plus the inner strength to stick with a consistent exercise plan. Since our first wedding anniversary last year (where I weighed 180), I have now gotten down into the 140s, so I think this is working well…just a very healthy diet and exercise
(Low-Impact, of course).

****I also have a great exercise routine written for an IC patient like me that my trainer wrote up so if anyone is interested, please email me at aprilannchen@att.net.

Thanks for listening/reading. Any suggestions are appreciated.

Love in Christ,
April

[sugar]

I also agree that lidocaine jelly helped me too! It made the instills much better overall. My original uro always used ky jelly but I asked for the lidocaine jelly, which requires a prescription and its helped so much.
I do my instills by sitting in our garden tub and leaning backwards. Then, I use the little plastic funnel tip that comes w/the lidocaine jelly and GENTLY insert into the urethral opening and the squeeze the tube to get some into the urethra until it spills out. Then, I wait just a little bit for the numbing effect to kick in. While waiting, I will cover the end of my catheter w/lidocaine jelly very generously, and I exhale when I insert the catheter. What has also helped me is to not move or wiggle the catheter back and forth. I've read that the female urethra is about 1 1/2-2 inches long, so I insert it until I see urine drain out, which I collect in a specimen cup. When that's finished, then I put in the instill medicines which flow easily if you hold up the end of the catheter, the gravity feeds it in. Once thats all done, then I slowly remove the catheter also as I'm exhaling. I also use the 8 or 10fr size catheter...I like the red rubber ones if you're not allergic to latex better than the hard plastic ones...they always hurt!
I've had lots less irritation and pain doing it this way, but it may not be for everyone. It was also better when I do the instills once a day, instead of 2-3 times like originally prescribed. My urethra got too much action!
Hope this helps!
Annette

[L. Thomas]

I feel like I really have to push the catheter to make sure it's going in and to get it to go in far enough.

I am not quite sure what you mean when you say you feel you need to push the catheter. Do you mean you think you will miss the urethra opening?

Advance the catheter slowly. When you see the urine flows through the catheter you do not have to advance any more. You can advance a little more to be sure the catheter doesn't fall out but there is no advantage if you continue advancing the catheter past that point.

[bunnykinb]

The nurse used a hard plastic 18 fr cath because she said the disposable ones would be requested through the insurance. Do the hard plastic ones come smaller?

Thanks

[aprilchen]

The nurse used a hard plastic 18 fr cath because she said the disposable ones would be requested through the insurance. Do the hard plastic ones come smaller?

Thanks

Hey bunnykinb,

I would ask about that 18 fr cath. I, myself, am allergic to latex so I use the male 16fr catheters that are silicone. They are not too bad. Also another way to avoid excess pain is to ask for an RX for something called Urojet or Lidocaine Gel. You can coat it on your urethral opening and use it on the catheter instead of KY and it numbs the area. It has made a HUGE difference in my having to use them because when I did not have it, I had urethral pain all the time. Anyway, it can also be called viscous Lidocaine. I KNOW that you can get at least a catheter as small as a 14fr, but I have been so used to using these that I am just keeping them.

Also, you'd want a male catheter if you're instilling anything into your bladder because the female ones are really short lengthwise.

Good Luck with all!
AC

[mum43]

I used the size 12" lo fric, after i had my bladder removed it went up to 14".
I used to stand up too it made things easier for me.I used a mirror to make sure I was doing it right, now!! these days I still stand up but can do it with my eyes closed because I empty from my belly button.

I hope things work out for you all

love Jill
xxxx:hi:

[bunnykinb]

Are the male catheters the orange looking ones called red robins? I did tell the uro that the 18 fr hurt a whole lot. He said a 14 fr would be better. The nurse said a 14 red robin because it is bendable. The uro wants me to use the disposable ones to reduce the risk of bacteria in the red robin.

Today, I put in the red robin all by myself and it wasn't bad. I thought the catheter was in while the nurse was watching, she then poured the solution mix and I could feel the mixture getting my butt wet. The nurse saw that the catheter had come out. She had to go back and do another mix. She was really nice and patient with me. She has to cath herself since she has problems urinating. The uro is going to do her bladder sling surgery.

Anyway, the uro wrote me a prescripton for the 14 fr disposable ones, but the nurse was going to call the supplier and ask for the rep to send me samples of different sizes. I called my insurance and was told not to pay for the catheters. The doctor's office needs to submit an authorization request for all durable products used for the instills. Better yet, all the liquid meds are supposed to be included along with the request to the insurance. I shouldn't have to pay a dime. I had thought my heparin etc would have to go through the pharmacy. I am going to ask the nurse too if lidocaine 2% jelly can be put on the request too. My insurance doesn't cover urojet.

[bunnykinb]

The uro also told me today was the first time in weeks that my urine didn't have any blood in it. He is hoping that the heparin is doing the trick.

Thank you everybody for letting me speak freely and in detail. I can no longer talk with a coworker who I had thought was more like a friend. She doesn't want to hear about my problems.