How much pro-active is really needed for dilation, a FYI

[mrs izzy]

To my question do you have what it takes to be pro-active in your post SRS/GRS/GCS care or will you or have you cheated?

In real life how much time is spent for our after care post dilations. And are you up to the challenge?

I just wanted to share just a litte FYI facts based on my dilation schedule put before me by Dr. Brassard (it has been posted in the past). My time i will spend my first year will be around +/- 600 hrs (25 days approx). Each time i do a session it takes about 1 hr. Thats from getting ready everything, doing the dilation, clean up and putting everything away and re-dressed. It does get a little less around the 6 month to year mark being its only 1 x a day with only 2.

With that all said, in just this first years time i will do approx 664 dilation sessions. for a grand total of approx 1688 insertions. That comes down to a average of 4.62 insertions per day. Wow 

For me i have given and taken a very little time here and there. but all in all i have keeped true to my schedule. Trust me it has not been a enjoyable event. Just waiting on the day my PC muscle gives up the fight and relaxes.

Izzy

[Jenna Marie]

Thanks for that. I'm a bit past a year with Brassard, so I assume I've logged even more hours by now! Luckily, I have the prep work and cleanup down to a science, so it generally only adds about 5 minutes before and after to a session.

I've only missed 2 dilations in all that time (not counting tapering down after the one-year mark as he suggests). Once for a business trip, and once when I was in the ER. To be honest, I have no idea how I managed it!

[Antonia J]

Thank you! You must have read my mind.  I was just wondering about this.  So how long does it take to dilate? Is it an hour for four times per day at first? I am wondering about transition and wonder how I would manage that at work. Does the pain get better? And dumb question, but is there ever a point you get to stop and never dilate? Or do you need to do this daily for the rest of your life?

Izzy, you're full of awesomeness. Thank you again.
Toni

[mrs izzy]

Thank you! You must have read my mind.  I was just wondering about this.  So how long does it take to dilate? Is it an hour for four times per day at first? I am wondering about transition and wonder how I would manage that at work. Does the pain get better? And dumb question, but is there ever a point you get to stop and never dilate? Or do you need to do this daily for the rest of your life?

Izzy, you're full of awesomeness. Thank you again.
Toni

Toni
At first the time is for the first month is 4x a day #1 for 5  min then #2 for 15 min. Then the next 2 months are 3 x a day #1 for 5 min, #2 for 10 min and #3 for 15 min. etc. At first for me i took a little time between each one to let my body calm down. Most sessions where between 45-1 hrs from getting undressed to clean up and getting re-dressed. Thing is the first 2 months there are also sits baths and douches in the process so that addes extra time to the whole mess. The first 2 months are hard to have much time for anything other then your post care.
For me i did not have much as for pain, they just have been very uncomfortable to semi comfortable (not one once of pleasure they bring me). Its the PC muscle that makes things not so much fun. The key is relax as much of your body as you can.
Dilation is a life long adventure, just after the 1 year mark you work on getting it down to 1 x a week with what i call the OMG (orange monster guage) for rest of your life or if you have a partner then that will count if you do the deed lol.
As always there is never a dumb question. Yes it does get easier as time goes by and seems you can get things done in short order if you need to rush. I try to keep it as stress free as i can.

Izzy

[mrs izzy]

Thanks for that. I'm a bit past a year with Brassard, so I assume I've logged even more hours by now! Luckily, I have the prep work and cleanup down to a science, so it generally only adds about 5 minutes before and after to a session.

I've only missed 2 dilations in all that time (not counting tapering down after the one-year mark as he suggests). Once for a business trip, and once when I was in the ER. To be honest, I have no idea how I managed it!

Jenna
I have adjusted my times more then missing any. I try to keep them on a schedule but have moved them around some here and there.

I know what you mean by "no idea how i managed it" I wonder myself how some manage. Me i was lucky, i been a at home wife so have had the time to not stress about things as much. But yes the first 3 months post is all about the v care.

Izzy

[Jenna Marie]

Izzy : Oh, absolutely, there's no way to maintain the perfect schedule and have a job or a life. I had to come home from work during lunch when I was on the 4X/day schedule! Being a housewife sounds like it'd be *much* easier for all the post-op care.

(Antonia : for what it's worth, there was only really "pain" for a few weeks, mostly immediately post-op. For me dilation is not exactly fun, but it doesn't hurt and isn't even that uncomfortable, just boring.)

[Antonia J]

Izzy : Oh, absolutely, there's no way to maintain the perfect schedule and have a job or a life. I had to come home from work during lunch when I was on the 4X/day schedule! Being a housewife sounds like it'd be *much* easier for all the post-op care.

(Antonia : for what it's worth, there was only really "pain" for a few weeks, mostly immediately post-op. For me dilation is not exactly fun, but it doesn't hurt and isn't even that uncomfortable, just boring.)

I know this is probably a really dumb question, but it sounds like almost having a child...where your entire life is shaped around the needs to dilate for the first 12 months. How could someone maintain a job that requires them to be onsite 8 hours per day, and maintain the schedule? Is it possible?  Would it be advisable to take maybe the first 2 months off of work after surgery, and then go back? I am just trying to plan out my own timeline, and what to expect. Honestly, I am a little freaked out by the first 12 months and the time commitment. Yowsa! 

[mrs izzy]

I know this is probably a really dumb question, but it sounds like almost having a child...where your entire life is shaped around the needs to dilate for the first 12 months. How could someone maintain a job that requires them to be onsite 8 hours per day, and maintain the schedule? Is it possible?  Would it be advisable to take maybe the first 2 months off of work after surgery, and then go back? I am just trying to plan out my own timeline, and what to expect. Honestly, I am a little freaked out by the first 12 months and the time commitment. Yowsa! 

Yes the dilation of the V is very, very high maintenance the first 3 months. Gets better after 6 months and just a walk in the park after 12 months

Depending who you go to for your SRS, i would think about taking off if you could to the point you only have to do the D 2x a day. For me that would have been after the 3rd month.
But looking at things, dilations at 3 x a day still can be done like 2 months out. My doctor said if i can keep at least 4 hrs between them and no more then 12 hrs max between the first 3 months things should be good.

Not easy being a girl.
Izzy

[Jenna Marie]

Antonia : At least it won't wake you up crying in the night.   But yes, it is a pretty big commitment - as Izzy says, for about as long as it is necessary to dilate 3X or more daily (which varies by surgeon). Twice a day is pretty easy, and once a day is no problem at all. So it's not really the first 12 or even 6 months for most surgeons, I *think.*

I could handle 3X a day while working, although it was inconvenient; get up a little early and do it in the morning, then as soon as I got home from work, then before bedtime. I DID regret going back to work before the first month was quite up because that first month's schedule for aftercare was brutal, and I'd recommend taking at least a month off and 2 months would be fantastic *if* you can manage it.

You definitely should try to get a look at the schedule for the surgeon you choose, and see if you can fit that in around work. But for Brassard it absolutely was doable at the one-month mark; not much extra time for fun after that until month 3, but it could be done. Try not to panic about it!

[Kate G]

If it hurts or is uncomfortable when you dilate then (for the most part) assuming you have healed up from surgery, you aren't doing it often enough. 

[Donna Elvira]

I know this is probably a really dumb question, but it sounds like almost having a child...where your entire life is shaped around the needs to dilate for the first 12 months. How could someone maintain a job that requires them to be onsite 8 hours per day, and maintain the schedule? Is it possible?  Would it be advisable to take maybe the first 2 months off of work after surgery, and then go back? I am just trying to plan out my own timeline, and what to expect. Honestly, I am a little freaked out by the first 12 months and the time commitment. Yowsa! 

Hi Antonia,
As we are in very similar situations from a work point of view, I have been asking myself all of the same questions you are asking here. Between what I learned directly from friends who have already been down this path,what I was told by the surgeons I have consulted and what I have read here,  I would reckon that to be safe, you should count on two months out of the office.
However that does not mean two months off work. I am counting 3 to 4 weeks more or less complete black-out and after that working from home for another month using phone, mail, Webex etc..
This has been agreed to in principle with my employer and is why I will most likely do GRS end June next year. August is a very slow month in Europe with almost no face to face meetings. Working from home would therefore not be a significant issue.
It might not be so easy to do this in the US but even in the land of the workaholics I imagine things slow down a bit during the summer, no?
Warm regards.
Donna