Vaginal width issue

[lenamartin]

Hi everyone,

First of all, please excuse me for my english, my level isn't so good since I'm a french speaker !

For the background:
I am 24 years old, had SRS (MTF) in Thailand in 2014. I came back to Switzerland a month later and things got worse and worse. Another surgeon in Switzerland performed SRS a few months later with colon graft. It worked fine for more or less 2 years, although I had to undergo two other surgeries because of the colon prolapsing. All of a sudden, the width has started to shrink more and more, so much that I could no longer do my exercises with the largest dilator and have sexual relationships. I have since then tried to fix the probleme twice (with surgery, sex-therapist, and physiotherapy), but in vain.
My surgeon does not know what and why it is happening.
Has anybody had a similar issue, and what have you done with it ?

Thank you in advance for your replies.

Lena

[AnonyMs]

I've never heard of it before, but have you tried Suporn's dynamic dilation technique? It might help.

Would you mind saying who your original surgeon was?

[lenamartin]

Well in fact Suporn was the first surgeon ! I've been doing his technique since I was first operated ..

[Dena]

Welcome to Susan's Place. After sufficient time, the vagina should require little or no dilation. I was able to go 10 years without dilation and two months of regular dilation returned me to my post surgical size. I can only guess what is happening in your case but I would suspect two things. It's possible you are forming scar tissue or for some reason, you body is still healing well past surgery. Dilation would normally help with this but if it's something like scar tissue formation, your doctor would need to diagnose it and determine if treatment is possible.

I have heard of others on the site with something similar. They followed the proper after surgery care but for some reason, it wasn't sufficient to prevent the vaginal from closing. It seems to be more common with the meshed tissue approach and if you had that, dilation is very critical.

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[lenamartin]

Thanks for your reply Dena.

My surgeon here in switzerland talks about scar tissue or some kind of « muscle ring », but does not explain why, whatever it is, it gets so strong so fast. He believes I've had too many surgeries (8 since 2014) and that my body is over-stressed and inflamed of all of this. And that I have to wait a few years before attempting any other surgery. But I believe he just has no idea what's going on and what he could do to fix it..

I dont know what is « the meshed tissue approach », is it having SRS with colon graft ?

I've been waiting so long for this problem to be fixed, I am really desperate and getting hopeless.

[AnonyMs]

I've only heard about women having problems losing depth, not width. People always say its possible to get width back, bit not depth. Do you have any problems with depth?

Just guessing here, but

How often are you dilating? If you're finding dilation difficult the usual recommendation is to do it more often.

Are you sure you're doing dynamic dilation correctly?

Have you tried asking for advice on the secret facebook group for Suporn?

What did Suporn say about the problem?

Do you heal unusually quickly? I've heard of some that do and they have to dilate more often than normal early on.

[Dena]

Mesh tissue is used when there isn't enough tissue for a graft. The tissue is run through a machine that makes many very small cuts in the skin so it can be stretched to cover more area. Normally it might be used for burn victims however it is sometimes used for GCS.

[lenamartin]

@AnonyMs : depth is fine since I have colon graft. I dilate every day using both suporn's technique and specific indications of a specialised physiotherapist, so I guess my method must not be the problem. I havent asked for advice to Suporn because he is not the surgeon who has performed the SRS with colon graft, I'm not sure he even does it, so he probably cant help much. I probably do heal a bit faster than others but it does not explain why the problem appeared two years after a successful SRS, knowing I had frequent sexual relationships and was dilating almost every day.

@TinaVane : I have never heard about draining fluids, it might be the problem ! Please give me more information about it if you can, that would be of great great help. Thank you so much !

[AnonyMs]

Why did you have the colon graft so soon after SRS with Suporn? Was it the same problem?

[lenamartin]

@AnonyMs : because Surgery with Suporn didn't work. Though I was dilating three times a day, I lost depth and width, and had a major infection.

[AnonyMs]

I've basically no idea, but the usual recommendation when you start to find dilation difficult is to do it more often. You're already doing it once a day at two years post-op and that seems very often anyway, but it could be worth trying twice a day. Maybe it will make a difference.

[Rachel]

Hello,

I am sorry you are experiencing such difficulty. I do not know why you are having difficulty nor am I doctor. I recommend contacting Dr. Marcy Bower's office. Although she has a 4 year waiting list she had associates on her team that may be able to operate with a 6 month lead time. I would look into her associate Dr. Ting in New York.

If I were to guess you were very small in genital size? You had very little scrotal graft material? I have a ring and significant scar tissue. It will get the ring and scar tissue removed in April almost 1.5 years post my GCS. Dilation is very painful in order to keep the scar tissue stretched. I am concerned that the scar tissue removal will reduce the size of my vaginal canal diameter. If I increase the diameter scar tissue will form as the skin splits. This is my guess as to what will occur in my future.

I have to have the bottom of my vagina closed which is concerning and my urethra relocated. I have been thinking twice as to the work to be done. It will be like having GCS again. I can not imagine your pain from repeated procedures, both physical and mental. I am thinking about my options too. Should I go back to my GCS doctor or call Dr. Bower's office. I think I need to at east call Dr. Bowers office and inquire about potential options. I am on the East coast of the USA as is Dr. Ting.

[lenamartin]

Well girls,

I'm quite disappointed, I was hoping for more answers, other suggestions ..
You all obviously haven't understood how desperate I am, and if we can't count on each other within a community then TG's fate is not about to improve.

Thanks anyway. If I find a solution on my own, I will let you know.

[Rachel_Christina]

This does sound very strange that it would decrease in width like this,, especially the colon graft. Who did the second surgery? Dr Bauquis? I remember talking with him when I lived in Switzerland on the subject.
I hope the surgeons figure something out for you. :/

[PurplePelican]

Well girls,

I'm quite disappointed, I was hoping for more answers, other suggestions ..
You all obviously haven't understood how desperate I am, and if we can't count on each other within a community then TG's fate is not about to improve.

Thanks anyway. If I find a solution on my own, I will let you know.

As was pointed out, the issue you are having is not at all common and so, people have few ideas, let alone answers. Personally, I'd be investigating inflammation levels, what's behind the apparent muscle stricture, scar reactions, just to start.. An ultrasound would soon reveal any pockets of fluid.

Having a caustic attitude because people don't have answers to rare problems doesn't help the community much either.

[lenamartin]

Thank you to Rachel Christina and Purple Pelican for your answers.

Yes it is Dr Bauquis who has performed the second surgery, and unfortunatelly he has no idea what is happening. But since he never talks about his other patients and the difficulties they may have been through, I dont know if just doesnt have the skills to help me or if my case is desperate..

I'm sorry for the tone of my last reply, I had just tried dilating, it was so painful and so frustrating since nothing evolves, I got sad. My apologies.

I am currently seeing a specialised physiotherapist who tells me it is muscular, and we are trying to work on those in order to get them softer and less in pain. I'm going to try acupuncture as well this week, maybe it well help somehow.

I will keep you updated.

Love

[Rachel_Christina]

Hmm, that's what I did not like about Bauquis was the fact he could not show me results of other patients, it wasn't his fault really, more the rules of Switzerland. He told me at the time that the experience that the Thais have in this field is second to none. Almost recommended them! I don't think the two surgeons in Switzerland get the amount of patients and thus the same experience as their counterparts in Thailand.
It's funny though you are Swiss? I am half Swiss half Irish. My mum was a Martin from Perroy(small town beside Rolle) Small world ain't it :')
I hope the physio works out for you Girl!!

[AnonyMs]

I am currently seeing a specialised physiotherapist who tells me it is muscular, and we are trying to work on those in order to get them softer and less in pain. I'm going to try acupuncture as well this week, maybe it well help somehow.

If its muscular then perhaps Botox would help? Possibly a risk of incontinence.

[warlockmaker]

This is most interesting. We have a foundation to help tgs in Asia. I have not heard of this problem. I am meeting the Drs at PAI on friday and willl disciss this with them and revert with their answers. I think I have enough info to get a proper answer. But one question, why didnt you ask Suporn, he charges an outrageous amount and guarentees his work?

[AnonyMs]

 Concerning Suporn's guarantee, Suporn has plenty of patients who go back for revisions, some of them multiple times. In a couple of cases (fistula) he's even paid the patients expenses (including flights and hotel), which is contrary to his rules. He's also refused to perform revisions where he's not capable of doing them.

I'm not too impressed with the new limit on revisions they introduced after he announced his retirement. Since the clinic is continuing with different surgeons I think they should honor their guarantee to previous patients, and continue it with new ones. Got to wonder about their sense of business sometimes, and hopefully its a temporary aberration.