MTF - Urinary Catheter used. Effect on Eligibility of a Re-assignment Candidate?

[GraceBT]

Hello,

I am a 63 Year old Klinefelter Syndrome male wishing to have MTF gender re-assignment
surgery.and I am disabled. I am on Social Security retirement with a low fixed income and
I live in low income housing in Washington State.

Since I was attacked in a hate crime 3 years ago and my hip was broken at the neck
of the femur and I spent about a year in a wheel chair. During this time, I had some
urinary tract infections (I seem to get these more easily than most people). When
I saw a urologist they discovered that I was not completely voiding my bladder and
this resulted in the higher than normal tendency that I have toward getting urinary
tract infections. So the Urologist put me to using catheters on a routine basis. This
way, I could minimize the problem that was caused by insufficient voiding of urine from
the bladder which made me more prone to urinary tract infection. The problem is that
now, I can't urinate without using a catheter. I hate this because I am so often reminded
of those bits down there that I don't want to have.

Anyway, I am about to seek evaluation to get surgery covered by Medicare/Medicaid
state insurance. I am very frightened that the may consider my problems with urination
to be a contraindication of having the surgery. From my point of view, I don't think
that this would represent any real problem, but they may be looking for any excuse that
they can find to deny coverage. Does anyone have any insights about what sort of issues
this might raise? Does anyone know of any presidents were this issue has come up before?
What was the final outcome?

Any advice on what I might be able to do to avoid having any problem getting approval
in my case?

Currently I am trying to ween myself off of using the catheters by inserting the catheter
for long enough to get flow going, then pulling it out and trying to finish urinating
without it. I am hoping that with exercise I may see a return of my ability to urinate
without a catheter. I hope so.

Are there any doctors on this board who can comment? Are my fears justified?
I really need to find answers to this question so that I can take whatever steps are
necessary to prevent this issue from ruining my chances. Are my dreams doomed?

Thank You for any responses!

Regards

-grace

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[Mariah]

Hi Grace, welcome to Susan's. I have no way of knowing. It's really something you need to take up with your doctor. I look forward to seeing you around the forums. Good luck and Hugs
Mariah

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[Atria]

I think the only way to get an answer for this is to talk to a surgeon that you have in mind and your urologist to make sure everything can still be done. It's a very difficult topic and I'm not sure it's quite common either. I do wish you luck with this though!

[EmmaMcAllister]

Grace, you have my deepest sympathies. I suffer from urinary retention too. My urologist wanted me to self-catheterize as well, but I refused. I hope that you find the answer you're looking for, but your best bet is to talk to a surgeon.

[GraceBT]

Atria and EmmaMcAllister,

Thank You for Your' Kind responses to my post.

Atria,
   I have an appointment with my General Practitioner on the 28th to
   discuss issues related to getting the various required surgery. I
   am certain that he will be as helpful as he can be, and he will
   probably make recommendations regarding the urologist. I was able
   to produce about 700 ml of urine without the catheter and this was
   the first time since I began using them to attempt this at in any
   serious way. After the 700 ml, I cathed and produced 400 ml more.
   They say that for Young people 150 ml of urine in the bladder may
   remain after normal urination, but this number is higher in older
   people like myself but usually 250-400 is not too much if in most
   cases. So depending on the doctors opinion as to what is too much
   varies some. And, I think since this is really my first real test,
   I have reason to be optimistic. I wish that I had started as early
   as You have. From Your Avatar and Your words, You are beautiful
   and I think You have a very bright future to look forward to. The
   Best Of Luck to You!
   Again, Thank You!
   
  EmmaMcallister,
    It is probably a good thing that You refused. I was horrified when
    I was told that using a catheter caused a dependance. They did not
    tell me when they advised me to start using them, so I was pretty
    upset when I found out the hard way. I had started to use Beta-
    Sitosterol and it seemed like it was helping, but the urologist
    told me that that was useless. No I am angry at myself for
    listening to them. After they recommended the catheters I had several
    sales people from various medical supply places solicit me to get
    free catheters (paid for by my insurance), but instead I chose to use
    the rubber re-usable ones and just use sterilization and good hygiene
    as I am not allergic. This seemed to make the medical supply people
    angry, and they don't even sell the rubber ones that I use. I
    suspect that there is some kind of incentive from them to
    encourage doctors to recommend catheterization. There certainly
    seems to be a smear campaign against the re-usable ones emphasizing latex
    allergy etc.
   
    Anyway, You are very kind offering your ear. I will certainly keep you
    posted on my eventualities (and the group). You also reminded me of all
    of the other prep that I will need to speak to my GP about (Spiro,
    Electro etc) as I will need to get all that stuff touched up pre-op
    if things go well.
   
    Thank You both again for Your help!
   
    Regards,
   

[Dena]

Welcome to Susan's Place. I am not a doctor but my roommate post surgically went down the same route and I know some questions to ask.
1. Why exactly are you having problems voiding the bladder. In my roommates case, there was a constriction that prevented proper voiding. They tried dilation but that worked for a short time. Cancer entered the picture before we were able to move to other options so she was maintained on antibiotics until she passed away. If your problem can be correct, it may not be a problem.
You should ask about other treatment options to correct the problem as there may be some other treatment available. When you understand the problem, internets searches may turn up some useful information.

2 UTIs are more likely to happened after reassignment surgery so you need to see how this will be a problem in your case.

3. While males are less likely to get UTIs, when they get them, they can be very hard to get rid of and may need a longer than normal treatment with antibodies. The warning signs would be just getting rid of one and having another one shorty after the first.

[katrinaw]

Big warm welcome to Susan's Grace

hugs... So sorry to hear of your issues and sorry I am not a Dr either

I wish you all the best wishes in the evaluation and hope all goes well for you.

Welcome and good luck, and, look forward to seeing your about the forum's

L Katy 

[GraceBT]

Hello Dena,

Thank You for your response to my post.  The reason for my UTIs seems to be entirely because
of the retention of urine.  My father had some UTI problems and I think my sister did also, so
it may sort of run in the family. The reason for the retention seems to be that I drank a *LOT*
of beer for a long time (16yrs-59yrs). I used to pride myself on how much beer I could drink and
not need to urinate. My bladder was immensely stretched. Another issue is that I only have one
functional kidney. My right kidney was damaged in another attack on my person that occurred
in 1996 and was due to a sever blow to my back (apparently it was ruptured). There is a small
bit of it still there but it may be completely non-functional. In spite of this, with careful diet
and since I stopped drinking in June of 2012, my kidney function levels test normal (thank God),
and my liver function is also very good considering.

I realized from my research that it is pretty normal to have some urinary retention for a time
post-op, and that this is expected and treated to facilitate healing. So this should not be
a problem. Also, I have a CNS leak into my sinuses from head injuries from way back in 1972,
so I have been on a regimen of Penicillin as a prophylactic against brain and spinal chord
infections,  so as a result I rarely get any bacterial infections but apparently Penicillin is
not very effective against organisms that cause bladder infections but natural protective
bacteria are wiped out (Lactobacillus etc), so this is probably the biggest part of the problem.

Actually, I would imagine that having the opening on the inside rather than out there in the
cruel cold world might even render some advantage in regards to protecting against UTI's for
post-op MTF gender re-assigned individuals.

I also expect that the male's naked clitoris may accidentally wander to more places where
nasty little bugs might be found (like way down there between the legs near the outback).

I am sorry to here about Your friend. I pray that she is very happy about her new body in
Paradise, and that she is held gently, warm, happy and blissfully there.

Thank You  for your information and your kind caring.

Regards,

[GraceBT]

Hello Katy,

Nice of You to say hello!, Hello from Ashera and Grace [2 peas in a pod (twin egos)].
Best of Luck to You! This is Great meeting so many nice folks. Great stuff! Love.

Regards,

[Dena]

I have an idea and it may be one of those hair brained ideas I come up with every so often but you might consider bathroom breaks more often than you feel the need in order to keep your bladder from being stretched out. Another thing I do is sometimes I have a pretty full load when I go to the bathroom so I will empty all that will come out and wait for about a minute then try again. Often I will find a good deal more coming out on the second try. Parts of the body will return to their normal size when you stop stretching them and it might be possible for you bladder as well.

The real problem may be your full sensor isn't sensitive enough and it allows you to overfill the bladder without the discomfort most of us would feel.

[GraceBT]

Hi Again Dena,

That does not sound "hair-brained" at all. The only problem is that apparently
I need about 400 ml in there in able to exert enough pressure to urinate. This
may be because the bladder is "at rest" at the 400 ml mark or it might be that
it takes a certain amount of pressure to get past the sphincter that checks
the unwanted flow. Also, as you say, I really don't feel any urgency until the
bladder fills beyond this point. I am afraid I will just need to to see an Urologist
again and explain the reasons that I am concerned. Maybe I am making a mountain
out of a mole hill, and this really presents no problem that would contraindicate my
surgery. Anyway, there are several things I will need to do in preparation, and
so I will have time enough to exercise, practice, medicate or whatever it takes
to improve this condition.

Thanks again Dena.

Regards,

[Jenna Marie]

It may depend on why you're having the problem, and where the constriction is. The urethra is, of course, cut back to an appropriate point for a female, so if the issue is in the "external" bit that will be removed... On the other hand, it's a well-known fact that women get UTIs more often, because the urethral opening is now very very close to both the vagina and the anus and bacteria travel well. Brassard's nurses stressed several times that post-op women were much more at risk of UTI. (The urethra also does still stay external, obviously, it's just flush with the body.) However, that's for the typical post-op woman compared with the typical person with a penis; your situation isn't typical, so I suppose it might still be an improvement for you.

If nothing else, you will be on a  catheter 24/7 for a few days post-op, which may actually allow things to stretch out and heal into a better configuration.

[CharlotteXPadangz]

hi GraceBT, i have a similar problem but mines due to another condition ruining my nerves around that area. Anyway, i've heard it isn't much of a problem mainly because i have a SPC rather than a IDC what i had for 2 years before having the surgery done to put in a SPC. Ever since then, my only problem to date i the ever present Pseudomonas bacteria just lingering. Have a talk to your urologist first before doing anything and if your problem continues to happen, that is more reason to talk about putting in a SPC for the long term.