Author Topic: Holding off on dilations for awhile  (Read 313 times)

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Offline Nina

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Holding off on dilations for awhile
« on: February 17, 2019, 06:12:35 am »
I sort of hijacked another thread asking my question, but would like to hear from those who’ve had GCS.
I’m 4.5 years post op.
In 45 days I will begin hiking the Appalachian Trail...which should take me between 4 to 6 months.
In that time, I’ll be sleeping in a tent, but every 8-10 days, I had been planning to stay at a motel along the trail so that I can shower and dilate.
In a perfect world, I’d love to leave the dilators at home. They’re heavy, have to carry lube/gel, and awkward as sometimes I might be sharing the cost of the room with another hiker.

So my question is this: if I didn’t dilate for 4 months, what’s the worse scenario?
I currently dilate about 20 minutes every 9-10 days. At the minimum, if I could say dilate on the trail maybe every 20 days??
That would save me money from having to pay for motels.

Thank you

Nina
« Last Edit: February 17, 2019, 11:48:50 am by Jessica »
2007/8 - name change, tracheal shave, electrolysis, therapy
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2014 - GCS Dr. Brassard; remarried
2018 (January)  - hubby and I moved off-grid
2019 - plan originally was to hike PCT in 2020, but now attempting Appalachian Trail - start date April 3.

Offline Denise

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Re: Holding off on dilutions for awhile
« Reply #1 on: February 17, 2019, 06:51:49 am »
That's quite a quest. I think you should ask your surgeon.  Actually, ask their PA.  My surgeon is very conservative but his PAs are more realistic.

Please start a thread for your hike.  Sounds like a blast.

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Offline jill610

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Re: Holding off on dilutions for awhile
« Reply #2 on: February 17, 2019, 07:18:42 am »
I’m interested in what you hear back for sure.

Why can’t you do this in your tent? Different situation but I only carry my current dialator and a small tube of lube with me when I travel out of town, so it takes up little space and is more discreet. I wouldn’t want to waste money on a hotel room just to dialate either, but a warm shower would sure feel good out there on the trail!



Offline HappyMoni

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Re: Holding off on dilutions for awhile
« Reply #3 on: February 17, 2019, 09:21:01 am »
Hi Nina,
   I hiked part of the trail many years ago. There used to be guidebooks that gave information on different post offices along the way where you could have a supply package waiting for you.  This might be helpful in not carrying the lube, but you might still need to carry the dilator and clean up tissues. (Or include a package in the package to send to the next dilation location.) Planning is key on this trip. I had packages planned for the whole trip, but never did the whole thing. I think consulting the surgeon is a good idea. Maybe you only have to carry one for depth. Another train of thought is finding a spot for some afternoon, in forest delight to help maintain your width. I only say this half jokingly, you just have to watch out for bears joining in the fun. The segment I hiked had community shelters for over night stays spaced out. It was not very private, but you might be able to do it inside a sleeping bag without anyone noticing. When I hiked it, it was as a 'male' and it was a whole lot less complicated.  ::)
Hugs,
Moni
Whoops, just reread your post. You may not have time for mailing stuff, and your tent should solve the privacy thing. We did not carry a tent when I went, too much weight. You going north to south or south to north? If you get a chance, check out Harper's Ferry, it's beautiful. It's an hour from me.
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Offline Nina

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Re: Holding off on dilutions for awhile
« Reply #4 on: February 17, 2019, 02:15:47 pm »
I’m interested in what you hear back for sure.

Why can’t you do this in your tent? Different situation but I only carry my current dialator and a small tube of lube with me when I travel out of town, so it takes up little space and is more discreet. I wouldn’t want to waste money on a hotel room just to dialate either, but a warm shower would sure feel good out there on the trail!
Dilating would be difficult on many levels.
First off, after hiking 15-20 miles, no way I’d have energy.
Then there’s the whole cleanup afterwards, having to step out of tent to boil water, and then packing out of the paper towels/tissues.

But thank you for your reply.
2007/8 - name change, tracheal shave, electrolysis, therapy
2008 - full time
2014 - GCS Dr. Brassard; remarried
2018 (January)  - hubby and I moved off-grid
2019 - plan originally was to hike PCT in 2020, but now attempting Appalachian Trail - start date April 3.

Offline Nina

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Re: Holding off on dilutions for awhile
« Reply #5 on: February 17, 2019, 02:20:14 pm »
Hi Nina,
   I hiked part of the trail many years ago. There used to be guidebooks that gave information on different post offices along the way where you could have a supply package waiting for you.  This might be helpful in not carrying the lube, but you might still need to carry the dilator and clean up tissues. (Or include a package in the package to send to the next dilation location.) Planning is key on this trip. I had packages planned for the whole trip, but never did the whole thing. I think consulting the surgeon is a good idea. Maybe you only have to carry one for depth. Another train of thought is finding a spot for some afternoon, in forest delight to help maintain your width. I only say this half jokingly, you just have to watch out for bears joining in the fun. The segment I hiked had community shelters for over night stays spaced out. It was not very private, but you might be able to do it inside a sleeping bag without anyone noticing. When I hiked it, it was as a 'male' and it was a whole lot less complicated.  ::)
Hugs,
Moni
Whoops, just reread your post. You may not have time for mailing stuff, and your tent should solve the privacy thing. We did not carry a tent when I went, too much weight. You going north to south or south to north? If you get a chance, check out Harper's Ferry, it's beautiful. It's an hour from me.
Thank you for the suggestions.
I’m hiking northbound, beginning at Amicalola on April 3rd.
My tent is an ultralight tent, but, not exactly discreet as most hiking spots on the trail will have anywhere from half a dozen to two dozen hikers. Lol, would be hard to dilate hearing others around.
I’m not doing mail drop...too expensive, plus, ones food choices can change along the trail. I plan to resupply every 4th day or so. I have the AT guide, many resupply points.
I’m thinking I’ll have no choice but to get off trail every week and dilate. Ugh!

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2007/8 - name change, tracheal shave, electrolysis, therapy
2008 - full time
2014 - GCS Dr. Brassard; remarried
2018 (January)  - hubby and I moved off-grid
2019 - plan originally was to hike PCT in 2020, but now attempting Appalachian Trail - start date April 3.

Offline jill610

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Holding off on dilations for awhile
« Reply #6 on: February 17, 2019, 03:18:03 pm »
Dilating would be difficult on many levels.
First off, after hiking 15-20 miles, no way I’d have energy.
Then there’s the whole cleanup afterwards, having to step out of tent to boil water, and then packing out of the paper towels/tissues.

But thank you for your reply.

Just trying to throw ideas out on what I would do in your situation. Me personally have no qualms about putting a towel under my butt and doing it in my sleeping bag, and using the same towel to clean myself and the dialator (to be *cleaned* more throughly later of course). I’ve done this and other hikes before (not the full length, but many weeks at once) and understand the hesitation pretty well, but suspect you can get creative and still get it done without a ton of fuss or expense. Where there is a will there is a way!. It probably seems more onerous than it really will be.

 I’m not sure that you do need to boil water at that moment or spend a lot of paper towels on cleanup. You will need to boil water to clean up your cooking utensils anyways, so maybe an opportunity to capitalize on that. Sanitizing wipes (like baby wipes) and a towel, then deep clean it later when you have a chance might be another option. You could also do it in the morning before hiking or plan rest days if you are concerned about being tired.

A single dialator and small tube of lube should take very little space (and weight) in a proper hiking pack - since you are carrying an ultralight, I assume you have a full size pack as well, and not a small pack?



Offline Linde

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Re: Holding off on dilutions for awhile
« Reply #7 on: February 17, 2019, 09:18:50 pm »
Dilating would be difficult on many levels.
First off, after hiking 15-20 miles, no way I’d have energy.
Then there’s the whole cleanup afterwards, having to step out of tent to boil water, and then packing out of the paper towels/tissues.

But thank you for your reply.
From a microbiology point of view there is no need to boil any water, because  if the temp is right that you can handle it, most of the antimicrobial values are gone!  Way better are some good relubricating hand disinfection solutions (the types that are used in hospitals), you disinfect your dilator better, and they clean better and lubricate (mostly with glycerine).

I don't know enough about the dilation process itself, but hot water is certainly not required to keep your dilators clean and disinfected!
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Offline LizK

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Re: Holding off on dilations for awhile
« Reply #8 on: February 17, 2019, 09:25:58 pm »
You could try using antibacterial wipes which could double to help with the clean up. I prefer to wash my dilators in hot water at least once a day but I would imagine the kind of thing @Dietlind suggested would work just as well. I know many of those tubes of antibacterial hand wash are far more effective than the way most people wash and dry their hands. I am not sure if the wash is likely toi have any ill effects internally but I can't imagine they would.

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Offline Linde

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Re: Holding off on dilations for awhile
« Reply #9 on: February 17, 2019, 09:56:45 pm »
You could try using antibacterial wipes which could double to help with the clean up. I prefer to wash my dilators in hot water at least once a day but I would imagine the kind of thing @Dietlind suggested would work just as well. I know many of those tubes of antibacterial hand wash are far more effective than the way most people wash and dry their hands. I am not sure if the wash is likely toi have any ill effects internally but I can't imagine they would.

Liz
Not if hospital style stuff is used.  it was originally developed to be used by operating room staff who always put the surgical gloves on on their still wet, freshly washed hand (drying could have introduced new contamination.  The result was continues really bad dermatitis.  This stuff, with the rather high glycerin content was used instead of washing, and eliminated the dermatitis while keeping the hands very well disinfected.

I think the high glycerin content would also be a nice and healthy addition for the dilators, and may be even for the neo vagina?

I know that most surgeons don't know much about microbiology, and I wonder, if there was ever a study done on the mircrobial environment inside a neo vagina.
I now wish I would be still working, I would be excited to do this.  That could result in an interesting paper! >:-)
Feb 2019, bi-lateral orchiectomy
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Offline Dena

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Re: Holding off on dilations for awhile
« Reply #10 on: February 17, 2019, 10:12:33 pm »
Dilation has two stages. The healing stage where you need to keep breaking down the scar tissue and maintenance mode where your just maintaining what you have so it's available when you want it. As you should be past the healing state, permanent loss do to scar tissue should be in the past. In maintenance mode, you will lose depth and girth however it can be recovered. I went ten years without dilation and all it required was a couple of month with twice a week dilation to return things to normal. I didn't even step down in dilator size primarily because I only have the one that I started using a few months after surgery. Yes, the first few times, things were tight and I was sore when the dilator was removed but nothing was damaged.

As alway, your milage could vary as your body may react differently to lack of dilation however as I said before, you should try a longer dilation period to see how your body responds without dilation.
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Offline Nina

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Re: Holding off on dilations for awhile
« Reply #11 on: February 18, 2019, 11:15:43 am »
Dilation has two stages. The healing stage where you need to keep breaking down the scar tissue and maintenance mode where your just maintaining what you have so it's available when you want it. As you should be past the healing state, permanent loss do to scar tissue should be in the past. In maintenance mode, you will lose depth and girth however it can be recovered. I went ten years without dilation and all it required was a couple of month with twice a week dilation to return things to normal. I didn't even step down in dilator size primarily because I only have the one that I started using a few months after surgery. Yes, the first few times, things were tight and I was sore when the dilator was removed but nothing was damaged.

As alway, your milage could vary as your body may react differently to lack of dilation however as I said before, you should try a longer dilation period to see how your body responds without dilation.

Thank you so much.
2007/8 - name change, tracheal shave, electrolysis, therapy
2008 - full time
2014 - GCS Dr. Brassard; remarried
2018 (January)  - hubby and I moved off-grid
2019 - plan originally was to hike PCT in 2020, but now attempting Appalachian Trail - start date April 3.

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