Urethral Pain

(and also vulvadynia)
At least for me, one of the most frustrating pains that ICer’s experience is
urethral pain. It seems to start out more as a constant sensation, tickle or
awareness. Some have compared it to a constant feeling of arousal, to the point
of being irritating or annoying! This progresses to a constant sharp pain, stabbing
or burning. The urethral pain can also make urination painful and increase the
pain of intercourse both during and after. In the beginning, my urethral pain
became so severe it would hurt/burn so badly when I would urinate that I could
hear my pulse beating in my ears and I literally could not sit. I also found this
pain the hardest to really talk about so suffered needlessly until it just became
unbearable. I also learned very quickly treatments used to treat urethral pain also
create a lot of controversy.

I have read many theories around this pain. Some have suggested it is
radiating from the bladder and not in the urethra at all. FOR ME IT IS IN THE
URETHRA that is not to say the bladder does not have it’s own pain issues, but
the urethra pain causes it’s own set or problems. Along with it, however, we have
also developed some specific coping tools and life changes for dealing with it!!
Others have suggested that there is some nerve entrapment, pelvic floor muscle
dysfunction or even that somehow the tiny glands within the urethra become full
of fluid and inflamed. I really can’t tell you what causes it, however, I can share
with you some treatment options that have helped me.

“The Interstital Cystitis Survival Guide” by Dr. Moldwin discusses urethral pain
and treatments on pages 66-70. (This is listed under our books section from
Amazon.) One of his suggestions is to soak in a warm bath 2-3 times a day to
settle down and relax the muscles. This can really help especially right before
lying down. As a busy mom I found it hard to do this but did try it for sometime. I still find a warm bath soothing but honestly it just became too time consuming
and did not relieve the symptoms once I was back out of the water. However, on a
bad flare day it is a great too and worth at least giving a try. Obviously, it can’t
hurt and taking the time to pamper yourself in a warm bath for 15-30 min. can be
a real blessing.

One of the early treatments we found helpful was dragging out my rescue instills
meds., releasing the last 5-10cc in the urethra itself. In the office the nurse
would actually kind of pinch if off, to hold the medications a little better. Not
pleasant but it seemed to help.  I have found now that I do my instills at home, that by sitting up a little I can create the same holding, within the urthera, of the instill meds.

For those of you who have don’t use the rescue instills there are some simpler
self-help things to try first. I learned it helps with the urethral pain as well as the
burning or vulvadynia to making sure I use unscented detergents and feminine
products, as well as using Dove unscented or for sensitive skin soap. Using a
peri-bottle to rise off with each time I urinate is soothing too. In time, when I am
having more vulva pain, I found adding a little baking soda to the peri bottle is
soothing to the area as well. (1/2-1 tsp. to the bottle.)

One of my favorite coping tools for the urethral pain, and vulva burning etc. is
MSM gel from Jacob’s Lab. MSM has all the benefits of DMSO without the awful
drawbacks that we hear about. MSM is soothing and a gentle anti-inflammatory,
that will penetrate deep into the tissue. I find using it right after I rinse off with a
peri-bottle and dry the area, actually seems to block the inflammation. I do also
take MSM for my IC, orally. “The MSM Definitive Guide” by Dr. Stanley Jacobs
explains all the benefits of MSM along with the similarities and differences
between it and DMSO. The book gives many treatment protocols with MSM for
various illnesses including IC.

One thing we tried in the beginning, was prescription lidocaine gel. For me, initially
this would improve the pain but the rebound pain would only increase making me
feel worse. In the end, we finally realized that I have an allergy to preservatives
especially methlyparaben. If you have sensitivity to preservatives the
prescription lidocaine gel can irritate as much as help. I now have it compounded
with the MSM gel and it is a great combo for the urethral pain as well as for
during and after the physical relationship. My latest combination includes
Silverbiotics gel, an all natural product that is healing and soothing, with the MSM and lidocaine. I personally love the Silverbiotics oral and the gel. I use it for many things and with the msm/lidocaine it is a fantastic combination. I am actually working with Kevin from Dakota Pharmacy to have a place that can provide this product to other patients as well, with a prescription from their doctor.

I did also find that some IC physicians are using a preservative free, lidocaine
combination gel in a syringe so that it can injected into the urethra or use on the
vulva. I would really think that the lidocaine/MSM/silverbiotics gel would help for
men using it along with a prostate massage for prostatitis. However, I have no
experience in this area.

One of my newest finds for the urethral pain is a product called a femi’ pad from
smart choices for women. This little feminine pad gel packs can go in the freezer.
It actually comes with two pads and a pack of liners too. I made some cotton
covers too but honestly you can wrap then in an all white paper towel too.
These are so soothing, I actually bought two packs so I always have one cool. I
have found they not only initially cool but once the coolness it self wears off the
pad protects the area. It also absorbs the warmth from your body keeping things
relaxed and cushioned!

Kevin also makes one of the best coping tools I have found to help with the
urethral pain, the burning and the bladder spasms. Kevin, at Dakota Pharmacy
custom makes vaginal suppositories to meet the needs of the individual patient or
physician. He can create special formulas that help your specific issues. For
instance, mine are all preservative free, contain Lidocaine, Valium and Benadryl.
Benadryl I learned is soothing helps with pain and with my allergic reactions to
things! He also adds a few drops of tea tree oil for me, this helps prevent yeast
infections which with my chronic kidney infections, I have to take a lot of
antibiotics. I actually use one every night and find it helps me sleep! I have
however, also found them great for having to go on long drives, after the physical
relationship or even on the flare days.

Though I have yet to try them, they are also able to make urethral suppositories.
Like the vaginal suppositories, there are many formulas and Kevin is very
knowledgeable and can work to create a personalized formula for the patient or
the physician. From personal contact with a few of Dr. Moldwin's, patients, I
learned that he actually prescribes urethral suppositories for the urethral pain.
The ones he uses, or at least for the patient I spoke with, contained Lidocaine, an
antibiotic, and a steriod. Kevin and I have discussed a formula for me to try in
the future using the Valium and the Lidocaine.

As a last resort, Moldwin does still do and recommend urethral dilations. I know
right now some of you are screaming at me and this was the first IC controversy I
hit in my IC journey! Literally, having people who saw me post a question about
having it done the first time, e-mail me, then even call me on more the one
occasion up to the first treatment to try to talk me out of it. Truthfully, I was
already so scared since my URO had warned me that it would hurt. in his words
A LOT! So you need to understand that the pain level had to be pretty desperate
for me to get to the point to let my doctor even try this! Truthfully, I needed some support not to be more frightened

Like, Dr. Moldwin my Uro will try it all first, but for me the urethral pain just gets
to a point about once a year we have to do a dilation. If this offends you, I
apologize and am so thankful that you do not have to experience this because it
is no fun. However, if you like me, get to the point nothing is working, then a
dilation done gently and correctly can, for some, take the urethral pain away.
According to Moldwin, 1 in 3 patients get relief from a dilation, just like for some
reason some get relief from a hydrodistention.

This subject was fresh in my mind since recently I had to face that procedure
again. In all honesty, I jokingly call it the medieval torture treatment. I can say it is
not fun, but in truth the thought of having to go through it, to me, is 10 times
worse the actually having it done. The rods themselves start our pretty small in
diameter. They go up increasing in size. I noticed this time how they also gently
taper to a greater diameter as they go into the urethra. The stretch done in
trained and gentle hands is over quickly and not horrible.

There are several theories why it works. One is that it does something to the
nerves themselves, others think the glands inside the urethra get full of fluid and
the stretching pushes it out! If you do have to have this done or decide to try it,
there are some things that can make the procedure much easier before and
afterward! Before going to the doctor’s office for the procedure, ask your physician
to prescribe just a few Valium etc. Take this before leaving the house and of
course have a driver. Discuss with your doctor about taking any medication
before the procedure, what to take and how much, etc. If you are already on a
pain management program ask them what you can take differently or along with
it to take the edge off and relax you. AZO is helpful also, just make sure they
know in advance and don’t need a urine specimen.

The procedure itself is quick etc. it is uncomfortable but you can do it without
meds. But what I personally have found is that the meds. relax the muscles and
me. When I have had it done without them, I felt almost like the dilation charleyhorsed the muscle down there because I tensed up right as he was stretching.
By taking the meds I find I recover quicker afterward.

My URO is also very good at reassuring me that if I can’t tolerate it we stop.
Having a physician that is compassionate and not going to force you beyond your
tolerance, helps, tremendousely.  I guess it makes me feel like I have some control
over the situation. So far I have made it through without having to do so but he
also doesn’t over stretch, as I have read some do. I believe the highest he goes is
a 30fr.

He also uses the Lidocaine as a lubricant to do the procedure, mine is the
Lidocaine/MSM gel. I have noticed how he makes sure to REALLY lubricate each
rod all the way up to the point it goes in. Despite his sarcastic humor to break
the tension, I can tell it is hard for him to do a procedure that initially causes
pain.  Immediately afterward, I keep an ice pack in my bag and apply it to the area
as soon as he is done etc. I really found the Feme’ pads a blessing after the last
procedure! I lived on them for days!

It is also important to rest and not push it for a little while afterward.  Sit on a pillow etc. to let things calm down. Soaking in a warm bath then reapplying the ice and lidocaine feels really good the first night as well. For me, it usually take a few days for the soreness to leave but then it goes away
completely.

Though again, I have not yet tried them, I have read of physicians also using the
urethral suppositories to numb the area before the procedure as well. It is my
understanding that they are made of Valium and Lidocaine. The nurse or
physicians inserts that into the urethra then waits about 15 minutes for it to work,
before doing the dilation. Though I think we are going to try that next time. I am thankful that it is not any time soon!! (Shelly)