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long term post op issues (private part issues)

Started by anjaq, September 03, 2013, 05:58:07 PM

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mrs izzy

Being you are have been healed for a very long time now that if you use what you have it should get some results. Truly i feel it comes down to more time you can spend on this the better off you will be. As a lot forget we have to fight the scar tissue and the PC muscle. These 2 things are normaly tight and need help keeping them loose.

I think you could work and see if the inflation will help or not. You kinda have to see how your body responds to anything you will throw at it.

Izzy

Ps. yes its not been a easy path for me to get to this end spot. But i would not trade the outcome for anything. It is all good.




Mrs. Izzy
Trans lifeline US 877-565-8860 CAD 877-330-6366 http://www.translifeline.org/
"Those who matter will never judge, this is my given path to walk in life and you have no right to judge"

I used to be grounded but now I can fly.
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anjaq

Hehe, yes - in the end the outcome matters, even if the path was rocky.

Ok, I measured the inflatable thing again - it has a stupid shape that tries to mimick a male part so it is actually wider near the top and is more like a #2.5 (larger than a #2 and smaller than #3), so I actually failed to use it. Better start slower then with only the #1 for a while and get a real #2. Yes, I am struggling a bit more with the PC muscle than I expected I guess. I feel that this is what is keeping too much tension. I guess I will have to find a way to be a lot more relaxed before doing this silation thing. Maybe pop in some relaxing music and scents. Argh darn, I really am already annoyed by this not being so easy. Plus of course now worried as some people here mentioned another surgery which I never thought would be needed, I always assumed that it will be just fine if I just "practice" some more and now I am a bit scared of that. Sigh

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Flan

It shouldn't harm but I don't know about the helping part either. If the problem is just width (vaginal opening maintenance) then it should be a little help if can leave it in for 15 min like a stent or whatever role it'll be size wise.
Soft kitty, warm kitty, little ball of fur. Happy kitty, sleepy kitty, purr, purr, purr.
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anjaq

I just took a look at those soul source dilators. To get a full set via their website would cost me $250. Thats quite a bit and $50 of that is just shipping. Is there a European (maybe UK) source for them or a different product that is available in Europe but that is as good as those?

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mrs izzy

Mrs. Izzy
Trans lifeline US 877-565-8860 CAD 877-330-6366 http://www.translifeline.org/
"Those who matter will never judge, this is my given path to walk in life and you have no right to judge"

I used to be grounded but now I can fly.
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jade

From what i gather, you went for an inversion but you also ended up getting a colon graft?
You are having tightness, pain, blood coming from the entrance of your vagina?

If that's the case, you probably have a vaginal stricture. The scar tissue needs to be cut with a z-plasty and some skin grafts need to be put in.

Dr. Kunaporn performs this procedure on colovaginoplasty patients who developed strictures/stenosis where colon graft joins the genital skin. If your stricture is bad and dilation has not worked out, you may want to look into getting a surgical correction/revision.

Wish you lots of healing xo
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anjaq

Ok, update time :)
To reply the last post, yes, the options available to me at that time were penile inversion and colon graft with skin graft as an option if penile inversion is not providing enough depth. Apparently technique has chenged since then and now penile skin is used to make labia instead, that was not availabe. I had penile inversion that was fixed in some way after complications with a colon flap. So its a mix and AFAIK this is not really a colovaginoplasty in the traditional sense.

I finally managed to get the Soul Source dilators after I had an unpleasant encounter with customs who wanted to know the contents, see the original invoice etc. I got the whole set. Started dilating 4 weeks ago with "toys" ans one week ago with the dilators. I worked my way up from #1 to #2 and with some more effort and pain can do #3 now for 5 min or so. Dilation scheme is 2x daily 30-40 min. I am using regular lube, maybe I should get medical grade? Whats the difference?
At first #1 was already hard to do, but I could move to #2 soon, I now do 15 min with #2, then another 15 with #2, sometimes longer. #3 only 1x a day because its tough. I do get pain, but no bleeding now anymore.
I am not sure how to determine depth accurately. Using the white marker dots on the dilators, I probably was down to 3-3.5" at first, but have increased that now to 4" as long as I keep pushing a bit. Regaining depth seems to be most important but is in a weird way painful. I was at 5" post op, so one inch down.
Overall I am not unhappy with the progress of it and hope that if I can stick to the schedule I can get a descent result. Maybe not 5" and I kind of fear the "orange monster" (#4 dilator). So I do still hope to get away without corrective surgery. I read in a similar thread that using estrogen cream may help, I will try to get a prescription.

Thanks for the adress of Soul Source, I think their dilators make this easier for me now.

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calico

lol everyone fears the "orange monster" , but I kinda feel like a freak  because I dilate 45 minutes with that "orange monster" lol

either way I am glad you were able to order the soulsource dilators, I believe they are the standard at this point, and don't worry to much you'll get it  ;)
"To be one's self, and unafraid whether right or wrong, is more admirable than the easy cowardice of surrender to conformity."― Irving Wallace  "Before you can be anything, you have to be yourself. That's the hardest thing to find." -  E.L. Konigsburg
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anjaq

Yes, I like them. They are solid and smooth, thats good. I like the bend they have, that helps me because I can turn it a tad left and right and increase dilation that way. I somehow feel I would have like something in between the blue and green and the green and orange monster. I am angry at the customs though. They got a proper customs declaration, why do they need to see an original invoice that does not say "medical devices" but of course "GRS vaginal dilators" in it. And then try to discuss about this with them without speaking by typing on the computer, that sucked. Ah well. I got them and thats good now, I guess now comes a long time of slowly working my way up...

The orange one however - I am so not sure I can do that without an in-between size. I think I never was able to get something that size working ever...

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mrs izzy

Quote from: anjaq on October 07, 2013, 10:29:11 AM
Yes, I like them. They are solid and smooth, thats good. I like the bend they have, that helps me because I can turn it a tad left and right and increase dilation that way. I somehow feel I would have like something in between the blue and green and the green and orange monster. I am angry at the customs though. They got a proper customs declaration, why do they need to see an original invoice that does not say "medical devices" but of course "GRS vaginal dilators" in it. And then try to discuss about this with them without speaking by typing on the computer, that sucked. Ah well. I got them and thats good now, I guess now comes a long time of slowly working my way up...

The orange one however - I am so not sure I can do that without an in-between size. I think I never was able to get something that size working ever...

Do not rush the OMG (orange monster guage) remember we did not add that till the start of the 4 month mark with way more dilations per day with the others. Take it as you can. It will come. Soon you will be able to dilate with ease.  >:-)
I use just normal (store brand of KY jelly) for the lube. I heard McGinn girls use mineral oil.

Izzy
Mrs. Izzy
Trans lifeline US 877-565-8860 CAD 877-330-6366 http://www.translifeline.org/
"Those who matter will never judge, this is my given path to walk in life and you have no right to judge"

I used to be grounded but now I can fly.
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mrs izzy

Quote from: calico on October 07, 2013, 02:02:48 AM
lol everyone fears the "orange monster" , but I kinda feel like a freak  because I dilate 45 minutes with that "orange monster" lol

either way I am glad you were able to order the soulsource dilators, I believe they are the standard at this point, and don't worry to much you'll get it  ;)

OMG@45 min, I have hard time making it to the 15 min mark.

Izzy
Mrs. Izzy
Trans lifeline US 877-565-8860 CAD 877-330-6366 http://www.translifeline.org/
"Those who matter will never judge, this is my given path to walk in life and you have no right to judge"

I used to be grounded but now I can fly.
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calico

Quote from: mind is quiet now on October 07, 2013, 10:41:53 AM
OMG@45 min, I have hard time making it to the 15 min mark.

Izzy


Said I felt like a freak because of it :icon_confused2:
"To be one's self, and unafraid whether right or wrong, is more admirable than the easy cowardice of surrender to conformity."― Irving Wallace  "Before you can be anything, you have to be yourself. That's the hardest thing to find." -  E.L. Konigsburg
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anjaq

Yeah - I am not rushing towards orange at all. I am happy if green will do for now, that is at the moment really painful already. I got a jelly now with some herb extracts in it - like aloe I think. I am not sure that is good, I did not look when I bought it. OTOH it may help with calming down the skin.

I am not sure I will make it to orange ever. But thats maybe ok - it seems oversized anyways. I dont know. Lets see. Since I did not ever go for anything that size before and SRS is 13 years oin the past, it may be possible that I can never get to orange because there is somply no room for that...

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anjaq

Quote from: jade on October 05, 2013, 05:25:50 PM
From what i gather, you went for an inversion but you also ended up getting a colon graft?
You are having tightness, pain, blood coming from the entrance of your vagina?

If that's the case, you probably have a vaginal stricture. The scar tissue needs to be cut with a z-plasty and some skin grafts need to be put in.

Dr. Kunaporn performs this procedure on colovaginoplasty patients who developed strictures/stenosis where colon graft joins the genital skin. If your stricture is bad and dilation has not worked out, you may want to look into getting a surgical correction/revision.
Can you describe this a bit more, Jade?
Presently what I have is no blood but quite some tightness and it feels like there is a circular structure that causes a lot of the tightness near the entrance. I guess it either is scar tissue or has something to do with the PC muscle, it is quite painful to dilate there, but overall dilation is painful, I guess that is just normal if one neglected this for so long, so I just have to bite my tongue and hope things get easier soon. Heck when I first wrote the OP, I was having pain to do the #1 dilator (or something similar in size), now #2 is quite easy (but I still need #1 to start), but #3 is really painful. So I hope the #3 will get easier eventually. I checked the dots and I am at about the 2nd dot, so that would be 4", thats about an inch less as directly post op, so I lost some. An inch is not nothing, so I am not sure if I can get that back - I am hopeful after some others reported to have gained up to an inch back, but maybe not - in that case I will have to live with the 4" then. Additional surgeries in that area are only going to happen with me if it is really unavoidable, so 4" may still be enough I hope, but the circular constriction worries me and I am wondering if it could be what you described there. As I understood it however, I got a "colon flap", if I get this right it should be not a whole piece of the colon they took, but I am not sure. The doc did not tell me the details and the report I requested contained only rather basic information. German doctors can be very annoying in that they are the "demigods in white" and consider the patients to be incapable of dealing with the details. I will request another report, just in case I need a revision after all.
For now I guess all I can do is to try and dilate more and see if it goes away. As there is no blood now anymore, it is mostly about the painful constriction that I have to fight. Not funny. Not happy :,(

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jade

If you have tightness, pain that does not respond to dilation, it sounds like you may have a stricture around the entry.
Usually surgical intervention resolves this.

With colon, they use a graft, not flaps, they have to use a whole piece because it is living tissue with veins and nerves, it is different to skin grafting.

Sometimes, if too much erectile tissue has been left, that also can become painful affecting the quality of dilation sessions.

Maybe you should start consulting overseas surgeons about your problem if german doctors are not being helpful.

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anjaq

Thank you for the reply , jade. Yes I think there is a stricture there. Interestingly when I read up on vaginal strictures, the commonly recommended therapy is - dilation (for non TS women). So I guess I will have to wait this out in terms of time that I am doing dilation again now. At the moment, some 4-6 weeks in or so, I am still having the pain, but I can already do #3 Soul Source, though it is painful during insertion and removal (interestingly not so much in the time between. I will check in with a gynaecologist at the beginning of December and let her check what she can see - depending on that I may go and visit a SRS surgeon again, but probably not the one who did my SRS as I just dont feel there is a good "energy" in that (sorry about eso-talk, call it a bad intuition, anxiety or whatever - I think I would just not feel good there). I have to find a way to get a full(!) report on the surgeries he had done on me though - maybe I can ask my GP/Gyn to request them or I can request them to be sent to my GP or Gyn. If i ask them to send it to me I will only get the dumbed down version again. It took me years to finally get a report on the type and serial numbers of breast implants they used. I thought always they used a "flap" of the colon to fix the fistula, but really they did not tell me what they did or I did not listen because I was in a mental shock at that time. Imagine you got SRS and 3 days later you discover you have a fistula, get a breakdown, beg the hospital staff who think you are lying to get the surgeon back in there and only after a lot of begging he comes, diagnoses the fistula, hands you some papers to sign and wheels you into surgery really soon and then you wake up with an artificial colon exit at the tummy and dont even know how that got there. In that situation I honestly did not have the nerve to ask for details. :(
There are SRS surgeons besides that one in Germany that i can visit for this. I am reluctant to have another surgery there now, presumably with a long healing time again. What would they do anyways - cut the stricture open? There may be the risk of another fistula then? On the upside they could do some plastic surgery there again to get me something that more resembles labia minora or a clitoral hood, so that may may actually be good. As it is definitely a painful medical issue, I would get insurance cover for it too. So I will consider it if I dont get better in a few weeks of dilation.
thank you again

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Roberta W

Hi A.Q. ... Just found your post from September.  Just wanted to let you know that I also had a problem with a vaginal fistula to the colon post-op.  It's a really difficult problem to deal with.  I'd be glad to share ... But since this is such an old post, I'll wait to see if you're still out there and if you've resolved the issues.  Roberto.
It took a lot of doing, but I take a lot of pride in what I am.
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anjaq

Hi Roberto (wow, this would in my country be identified as a male name ;) ) - yes I am still around. the fistula issue was resolved some 13 years ago already and I am not sure that the issues I have now have much to do with it - if anything, it may have helped me as they did some sort of unknown revision to fix the fistula which for some reason created a situation for me in which I still have my vagina even though I probably dilated much much less overall than the vast majority of post ops. none at all right after SRS and then only weekly after some months. I lost some when I dropped that to less than monthly which is totally stupid of me of course.

things are going better now already, but I will make an appointment with Dr Schaff in Germany to have a look next year to see if I got things back and slo maybe do a minor plastic revision.

How was your experience, what happened and how was it resolved - do you have any long term issues?

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Roberta W

Hi A.Q. ... Yes, what happened was a vaginal / colon fistula.  They tried (back in the '80s) to fix it and finally did a temporary colon bypass to give it a chance to heal.  It was miserable, as I had the "bag" for 4 months.  Like you I lost some during that period of time ... Some depth as well as "width".  It's still hard to get to the proper size, but I've tried.  I don't think I'll ever be to the expected sizes of today, as this was back almost 30 years ago.  After the temporary colon bypass was reversed, I had a "leak" and ended up in the hospital with Paratinitis ... Realy bad.  5 different IV bottles running for weeks.  They finally did another surgery to repair the colon, and it's been fine ever since ... But during that period of time, of course, I was not able to maintain the SRS, and now it's less than ideal.
It took a lot of doing, but I take a lot of pride in what I am.
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anjaq

Hi, Roberto. Yes this is what happened to me except after the 4 months they reversed the bypass and then things healed actually and I had no further complications and they could do the second stage of the SRS some months later. It was in many aspects however the most miserable time I ever had. Back in the 80ies, that is really a looong time ago. Twice as much as mine now. So you could not dilate properly for these 4 monthas plus the weeks you had the second complication - did you get things back initially or did you always have problems from that time on? Did you dilate a lot and regularly after that period until now? As I understand it the best would have been to initially actually dilate at least daily to get things back to how they should have been after SRS and then after that worked to maintain it by dilating weekly. I did neither sadly, as I was told weekly is enough  from the start. I managed initially to get to a rather ok size - maybe 6" depth and 1.5" width but to keep it was rather painful at times so I kind of reduced the size of the toys I used (I was not told to use a dilator, they only gave me that soft stent) and focussed more on it being fun than dilation. So I kind of lost more in the long run.
How did that work out for you - did you dilate a lot after that phase, and how so in the long run? If you like, would you care to share how it developed and where you are now and what you are doing or tried to do to get it better? Do you think it will work to have intercourse? Since yours was in the 80'ies, have you been single since then :\ - that is a long time... sorry if these questions are personal - we could move to PM if you are not comfy talking about it here...

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