long term post op issues (private part issues)

[Roberta W]

Hi A.Q:  I think it's important for everyone to see that things don't always go perfectly, so I'm not at all concerned about the personal questions.  They are reality.  Wow, your story sounds so familiar.  At least now I know that the correct (or at least more modern) procedures were used on me anyway.  I still have the scars from the Temporary Colonostomy (that's ostomy, not oscopy, where they jus look.)  They are there on my tummy, not very attractive.  It sounds like you did a little better than I did with the post multi-surgery care.  I ended up with only about 4" depth and maybe 1" width, and it's still painful to insert anything.  I tried for a long time to get it better using stents, but it had closed-off and the bottom end and I couldn't improve it.  The Doctor kept telling me to keep on trying, so I did for nearly 5 years.  I got it out to about 5" depth at one point, but it was such a fight to keep it there.  Now it's back to about 4" depth.  I'm not sure if I could still have intercourse.  I did way back in the late 80's when I got it to about 5" depth, but it wasn't as much fun as it was painful due to the limited width.  I'm not sure why I couldn't improve that much.  I haven't tried since.  Sad, eh?  No, I'm not single ... I was married in 1981 and my wife is totally understanding, no issues there.  If you'd rather move to PM on your end, we could do that, but I'm OK with this.

[anjaq]

Hi, R.
Yes it does seem familiar. Well my multi surgery care was mostly about doing some planned two stage vulvaplasty, I think they did not much at the vagina at this point. Basically I was left with what I got. For a long time I think it was similar to your situation - 1" width, <4"depth. Now I have done a lot of work in the past 2 months in an effort to get things back - dilating 2 hours or more daily (!) with the Soul Source dilators recommended to me. It is painful at times and uncomfortable always. I hope however that I can have some benefit from it eventually. I got back just as you said to 5" but I managed to increase max width to 1 1/2" now (though curretly then I am at 4" depth only at that width), though that is more painful than uncomfortable at this stage, I hope to improve that with time and dedication so that this will be regular at some point. I think if I manage to keep this maintained, 5" depth and 1 1/2" width should be all right, though I expect to have to dilate daily for many months to come and probably more than weekly after that to keep it at this level. I also expect to have to dilate a bit before having intercourse to make it fun. Its not really a great situation. I know of some others in this forum who had/have similar issues though not connected to SRS complications AFAIK. I can only hope the effort I am doing now pays off. You mentioned that you also did a lot of effort to get things back in shape and had some success but then that went away because you would have to maintain a lot of effort to keep it. Can you tell me more details, like what did you do to get there, how much width and depth did you regain, how much effort was it to get there initially and to maintain it? If things do not work out, I will actually consider another revision surgery if there is an option to do it, though I'd rather not... :\

[Roberta W]

Hi A.Q.  What did I do to help it and maintain it .... Hmmm.  First of all, I don't think that soulsource was available back then.  My doctor ordered me a set of dialators that were surgical stainless steel for the smaller sizes (< 0.5 inches) and they were curved, hard plastic for the larger sizes.  Certainly not flexible.  I never got past the 1" diameter dialator, it was very painful.  I maintained what I had using that 1" dialator for about 6 months, dialating every morning and every evening for about 1/2 hour.  Maybe that wasn't enough, but there was this problem that I needed to go to work!  (Still do!)  ... This was AFTER the closure of the temporary colonostomy surgery and the on-set of the infection that I mentioned.  By the way, I had an eye-opening experience lying in that hospital bed.  I'll never forget the Surgeon coming in and saying "If we don't operate on you tomorrow morning, you'll be dead within 48 hours."  Ouch!  They did the surgery, I stayed on antibiotics via IV for about two weeks, and I started this "maintenance" about 2 weeks after that ... But as you can imagine, I lost a lot of time that I should have been working on my SRS and could not, and that led to some of my problems.  That's when I grew shut to a 4" depth, and the dialators helped with "width", but I could not make more than about 1" progress on depth, and very painfully, and as it turned out, temporarily ... Because it would bleed, then grow back together.  Not a pretty story is it!?!?

[anjaq]

Hi, R.
so you initially had only 1" and could not expand on that - thats not good. I was able to expand that initially a bit to I guess 1 1/4" maybe. It was mostly my fault that I did not maintain it well enough so I ended up more or less the same as you - 1" and that was already painful. Now really it gets better but I had to suffer for it. I hope my depth gains are not as temporary as yours. I am thinking even if there is some slight bleeding some of the time, if am hoping to just repeat this until that is not coming anymore. Soul source dilators are rigid plastic too by the way - no difference there except no stainless steel for smaller sizes. I totally get that emergency situation. When I discovered the fistula myself, I knew what it was and that it is dangerous and so I told the nurses and then the sationed doctor at the hospital. They all tried to calm me down and tell me (it was a Saturday) to wait until Monday and see the surgeon who did the SRS then. I had a breakdown, insisted, begged and made them annoyed enough so they called in the surgeon on Saturday , he checked it and ordered no food&drink and a surgery the first thing next morning on a Sunday. They dont do that for no reason.... I knew that if they had not done that and if I had not insisted on it enough, I might have gotten that infection and maybe even died. Idiots.

So after that one time trying for 6 months - you did not manage to dilate it to gain width more than 1" and afterwards did not try again? I will try ovastin cream - it contains the E3 estrogen to make the tissue there softer and thus hopefully dilation less painful and more successful. Have you made arrangements where you do not need to increase the width and depth anymore now? Do you still have to maintain it by dilating or does it stay at 1" x 4" without much maintenance?

[Roberta W]

Hi A.Q.  A few answers to your questions.  Yes, I did sort of "give up" after that 6-month period.  I'm interested in the cream you mentioned ... Who knows, maybe after all these years I could try to improve it ... ??  Yes, it has stayed at about the 4" x 1" since, but it's more painful now to stretch to 1" than it used to be just due to non-use.
Do you know where I can get some of this ovastin cream?  I would like to try and work on it again to get it better than the 1" x 4" that I have now.  That would be the first "arrangements" I've made in years.

It's truly amazing how similar our experiences are.  Even though they were awful, I'm glad to know that I'm not alone in the world.  I wonder how many more of us there are out there!

[anjaq]

Yes - I am sure there are many out there with these experiences sadly. I know that SRS is not something to take lightly, complications are much more common than we are told and often post ops dont mention their complications afterwards, so everyone thinks it is safe - it is not really...
Overstin contains Estriol - not Estradiol. But there is also cream with Estradiol and it seems to work as well. Both are supposed to help softening tissue and lubricating it. Estriol also seems to promote healing of the skin from microtears - whioch incidentially are caused by dilation. I will definitely get that plus vaginal bacterial tablets that will use the sugars in the Ovestin to grow a healthy vaginal flora...

So you have a female partner and do not really depend on the size of your vagina, that at least is good, otherwise it would really be hard

[Roberta W]

Hi A.Q.  So where do you get the Ovastin cream?  Is it a prescription?  Yes, I have a female partner, so that's not an issue ... It's just that there is no fun with the toys.   

[anjaq]

Here in Germany it seems to be a prescription yes - I will try to get it from a Gynaecologist in 3 weeks. I dont know about your place and if they have the same brand. Look for the contents and make sure it has the same (Estriol). Good luck.

[Roberta W]

Thank You A.Q.  I'll inquire.  You motivated me!

[anjaq]

Cool - yes go for it. It really hit me in two ways to go for it now. One was that I started to get pain from lack of dilating - a clear warning sign that if I dont do anything now, I may loose something. That was a wakeup call for sure. The other was that I am now 10 years single and I dont want to be that forever. And since I dont know if I am homo- or heterosexual as I basically had no Libido, I just wanted to keep all options open - Plus I am treating myself against Estrogen dominance (which likely caused the loss in Libido among many other health issues like weight gain, masculinisation, some hair loss, tiredness, migraines) by requesting Progesterone from my Endocrinologist and I guess it will work towards me actually wanting to use what I have or what I will gain back now. I am hopeful - I think you can be too.

[Roberta W]

Hi A.Q.   Yep.  You motivated me.  I found my stainless steel dialators, now I'm going to work on it again ... One size at a time.  I just don't know how long I can afford to leave them in, or if it will be adequate to make progress.  It's certainly worth a try ...

[anjaq]

Way to go. I presently dilate for more than 2 hours a day, starting small and increasing in size during the time. I use the smaller diameter ones to get more depth as they are easier to push deeper and the wider ones are for expanding this in width. I was given a great tip to do a bit of a yoga task while dilating and use the heel of one foot to keep the dilator in place and then I let myself sag a bit deeper into the pillow pile on the bed to push the dilator in deeper if needed. That way I dont have to hold it in place, I can even write forum entries or read. I occasionally twist it a bit to keep it from being stuck or press and release or take it out to relax the PC muscle. But it takes massive amounts of time but obviously it pays off, I feel... - I think 2x 1 hour would be even better but I am not good in getting up early.

[Roberta W]

Hi A.Q.   Do you think we could use the soul-source ones and leave them in while doing other things?  Have you ever tried anything like that?  I did back in the 80's before all the problems started, it worked for a while until all the other stuff started to happen.  (Not soul-source back in the 80's, but something similar.)

[anjaq]

I usually get into bed with pillows and a warming blanket and bring my laptop and then leave the soul source dilators in for several minutes, occasionally move them or take them out and go to bigger sizes. when I let them in for some minutes, I will chat or write in this forum as I do now. So these 2-3 hours are my daily trans-issues hours - dilation and chatting on trans topics and so on

[Roberta W]

Hi A.Q:  Interesting, and a good Idea.  Back in the '80s there were no laptops, but I had magazines!

[jade]

If you have not dilated with the correct sizes for that long, the junction of colon and vagina will keep tightening due to stricture formation from scar tissue. Dilation may not be enough, you may consider skin grafts from labial skin to expand the stricture. I had a similar issue to you and Dr Sanguan Kunaporn in Phuket fixed it with a minor revision. All the best.