One year & 4 months later: Giving up on Dr. Roth.
I've posted my experience with Dr. Roth in Indianapolis from my surgery on. (*Some of the posts might be from another account.) Initially, things were very positive! Depth was around 6 inches. My clit at least had some sensation - enough to orgasm it I rub the hell out of it for a while. Dilating initially went very well! I was able to take the middle dilator, which is (I believe) the Soul Source blue dilator. Aesthetics were pretty damn good considering! I initially recommended Roth as a competent surgeon for GCS, and I potentially could still ...
Let's take us to this point, step by step.
... Alas, his follow-up care and a few of his team for follow-up concerns have ignored every problem that I brought up. From month three on (my first followup), I expressed concern about the spray of my urine. It literally sprays all over the underside of my thighs and butt! The response was essentially, "The Uroflow curve looks great, and you are voiding your bladder!" His assistant, a woman, told me to, "Try and spread your legs open more and lean forward."
... Thanks! Good advice! My urethral area was never inspected or looked at following surgery beyond a Uroflow at every appointment.
I also brought up the tightness. A girl that had surgery just two weeks before me was already able to wiggle the largest BIG orange dilator in, and I couldn't make much progress above blue. When I tried, it was way too tight, and it hurt and bled. I brought up the tightness at my appointment. There was no exam for my canal. There was an outer exam of my vagina. The end.
... I guess it looked okay.
I brought these issues up again at my six month appointment. Once again, I was given the same thoughts: "Well, your Uroflow looks great. Lean forward and maybe spread your legs wider for urination, and as for the tightness? Just keep trying the bigger dilators. We will check again if the issue is still there at your nine month checkup."
This time, Dr. Roth put a medical glove on, and he examined my vulva, clit, and surrounding area. He did not lube a finger to examine the canal. He did not attempt an internal exam. I expressed concern that it felt like scar tissue. I was told they would check it at the next appointment.
... It was still a problem, and it was worse. My vaginal canal was getting tighter and tighter. I lost two inches of depth to the tightness and inability to get dilators where they needed to be. I was always hopeful at his words: "We will check it at the next appointment and address."
This appointment was about the same deal. Quick exam of the outside, and a photo for my chart. I was sent along with the same hope: "Well, this is the turn-around point. That tissue will start to really soften and stretch soon."
... Can you guess what happened at my year followup?
The only person that attended my year follow-up was his assistant. I'm going to be careful about specific names, but let's call this person Saammannndaa. Saammannndaa is the one that kept giving advice like, "Lean forward" and "spread wider when you pee." She is also the one that said multiple times when I complained about how long it takes to orgasm, "Welcome to being a woman!"
... I've been sexual with CIS women. I can tell you that my inability to get there when I'm in the mood and want to? That's not normal, and you are dismissive as hell. In fact, my entire complaint with this team has been dismissing.
I was upset at this appointment. I had been pushed aside too many times. I brought up EVERYTHING that I needed addressed - the scar tissue, the potential extra tissue around the urethral area, the excess erectile tissue.
Every point I made was met with a nonsense excuse, or a platitude about womanhood. When I brought up my loss of depth, there was zero discussion of how much I lost. She then paused, and said, "... Let me go talk to Roth and see what he wants to do."
My surgeon. The one that did my GCS. He was close by, in the building...and he didn't come to my follow-up.
I don't want to speculate, but I feel like he knew I wasn't happy with the excuses anymore. The general vibe I got in a year was that Dr. Roth generally does good work! His results are generally promising. However, if you are a patient that has any issues that require assistance to fix? Don't rely on his team to do it. Not without raising hell.
I'm writing this because I recently had a consult with another surgeon in Ohio. She was very confident, and very validating. The urethra was not placed correctly, and there is far too much tissue around the area that would cause my urine to spray.
There is excess tissue that comes up from the peritoneum and slightly covers my entrance with my legs spread at all. It creates this little 'shelf' of skin that impedes the entrance. The scar tissue will need addressed, and I will now need Botox shots in both sides of my pelvic muscles, because the inability to properly dilate has caused them to tighten over time - thus losing depth and elasticity.
The other concerns I brought up, and that she confirmed but didn't feel confident touching: There is too much erectile tissue left, (She is afraid that if she works on this, I could lose blood flow to my clit completely.) and she doesn't feel confident that depth revision will be something that she wants to do. It would require a graft from either another area of my body, or a section of colon. She wants to see what these other improvements might do for regaining some of my depth through dilation after.
I've spent a year frustrated with a part of me that I had to go through a hell of a lot to get.
You can't imagine what this consult has already done for my hope!
If you are a Roth patient and feel ignored, be louder! Threaten to get a separate consultation. Demand they address the issues, or get an administrator involved to mediate things.
I really feel that Dr. Roth is a good surgeon... His follow-up care is just horrible for anyone that ends up with complications. You might as well schedule your follow-up care with someone else, if you can.
Anyway... I'll post an update when I have a revision date, and I'll surely share from that!
I really hope this helps someone.
Keep strong!
