Just had GCS - NEED HELP!

[Jenny The Amazing]

Hi friends!
First and foremost, I apologize that my first time to the forums is such a mundane post like this, but I am in desperate need of help/reassurance. By now I have posted on several groups/forums/Facebook pages asking for advice or someone who can help relate to some of the issues I have been having, mainly anxiety.

I had GRS in two stages with Dr. Greenwald in Tampa in two stages; vaginoplasty and later pirenoplasty (as well as urethroplasty due to an infection) and he is very outstanding, knowledgeable, and thorough. I don't doubt his results and think he's done fantastic, but because this experience is so new to me and I have no one to relate to about it, there's a level of understanding from others that I crave for.

To start off my stage 1 took place on May 11th, and everything was fine. I did end up getting an infection, however, around a month later where I could not urinate (probably due to poor hygiene) and had to have stage 2 surgery immediately. That took place on June 15th, and was officially listed as pirenoplasty. Later after the surgery as my infection had not subsided I was put on antibiotics and an antibiotic cream.

My anxiety has been so high. I could not dilate at first. I would freak out trying to touch/feel inside the area, I got anxiety about my catheter (which I had for two weeks both times), have anxiety about not cleaning enough now, about the bleeding or the yellow stuff that I have to clean up, about going into the area, and all kinds of other things. Anxiety that it doesn't look natural, that there will be more problems, etc...

My real question I suppose is all of this normal? Has anyone dealt with this or am I alone? What should I expect/do? I am trying to remember I am probably making it worse than it is and be it "I'm my own worst enemy" kind of deals and to listen to the doctor. I just wish I knew someone else, or more people that have been through this so I can know I'm not alone.

[Ms Grace]

Hi

Welcome to Susan's    Great to have you here - looking forward to seeing you around the forum.

I'm not in a position to answer your questions but I think you'll find that an infection following any operation does complicate things somewhat. What does seem to be as big an issue is your anxiety and maybe there is a need to have a bit of a look at how to calm that down as well. You'll need to start dilating or you run the risk of even more complications so the sooner you can soothe the fear you are experiencing, the better.

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Cheers

Grace

[Dena]

Welcome to Susan's Place. Surgery is pretty messy at first and I think I wore a pad for almost two months because of the blood and the mess from the KY jelly. Until you have correctly healed you should have the need to clean the area more. However if you are unsure about what you are seeing, contact your surgeon or a gynecologist as things don't always heal correctly. I had both proud flesh and an infection that needed to be treated while I was healing. I wouldn't have been able to diagnose or treat either without help.

After you are healed, proper hygiene and drinking sufficient water should prevent future infections but a little trouble at first isn't unusual.

You are still healing and that can go on for up to a year but remember that CIS women look a good deal different from each other. There isn't a standard appearance so how you look may still be within the realm of normal.

As for not looking natural, my surgery doesn't and would need a revision to be so. My view is what I have is fully functional and if a male refuses to accept me as I am, I don't need them in my life. I have no intention of undergoing a revision just for appearance sake.

[FrancisAnn]

Gosh poor you. I cannot offer much help but my best wishes to heal up. It takes time after any surgery, I've had a facelift, lipo & tummy tuck surgery. Both of those took a while to heal. Stick to your doctor & do what he recommends. Good luck

[AnonyMs]

I'm not sure if it will help, but here's a couple of links from people that had a serious lot of pain early on. You'll have to search a bit though them to find it.

https://sifansjourney.com/all-posts/

https://www.youtube.com/user/NatalieLBG/videos

[Jenny The Amazing]

Hey everyone! Thanks for your replies and warm welcome. I agree my anxiety problems are most of the issue. In fact, I was recently just put back on Zoloft to try to calm my nerves a little after being off of it for some time. Right now is definitely one of those times that I need it. I wake up anxious or feel anxious for no reason at all sometimes and trying not to "worry" about things is certainly a hurdle for me.

I think it becomes easier every day, certainly it's weird feeling overjoyed to a level that you feel more comfortable with your body and how it looks/feels, but also feeling a bit confused as things are not healed yet and still having some pain/discomfort from the area from it being so fresh. I'm trying to rest and relax as much as possible right now but also know I need to return to work sometime. I'll have been off for three weeks come Wednesday.

Some of your responses have truly made me feel at ease. I've been wearing pads and going through them a lot due to the discharge of yuckiness that I try and try and try to clean off. I think I may have developed granulation tissue and know when I dilate that won't be fun.

Did anyone else have an issue feeling like you had to use the bathroom a lot or sometimes pressure/pinching or is that in my head? All of this is very overwhelming!

[Serenation]

Hi Jenny, I know a lot of post ops in various stages of recovery and it's fairly common to have endless questions, worries and pains. Two step surgery would be a lot harder on your system having to have had general twice and you've had that catheter in a long time (I had a catheter for 5 days total),

Other girls that long catheter times have had bladder related issues like infections and bladder spasms and other bladder discomforts, hopefully it resolves. I'm sure you know zoloft is an anti depressive, if you are not depressed yet are having anxiety that cannot be resolved through therapy then anxiety medication might be helpful, stuff that's meant solely for anxiety.

Breath, relax it's probably all a mess right now but things will get easier each day, just make sure you do everything they ask of you, dilation is very important at this point.It will get easier each day.

[Jenny The Amazing]

Thank you for your kind reply, Serenation. :-)

Fortunately I don't think I have any bladder issues. Although I have felt the need to use the restroom a lot, which I think is nerves. Sometimes there's a minor pinch but nothing severe, other than that things seem to be okay.

As for the endless questions and worries, I am glad to know this happens commonly.

[Jenny The Amazing]

Well... Yikes.

I just had my follow up. I've been going back about every other week, and things checked out fine two weeks ago. Getting the catheter out really lifted my spirits. My antibiotics ended and I felt okay, seemed to think I was recovering well. Today when I went back I discovered my granulation tissue had very much intensified. To the point where I can't dilate and it hurts really bad. The skin had connected from one lip to the other on the lower side, so now I'm being advised to use corn starch on it and put gauze in between the lips, meanwhile should the moisture become worse and it doesn't heal itself I will need silver nitrate treatments which I see has happened to some other girls.

Anyone else have experience with this?

[AnonyMs]

Today when I went back I discovered my granulation tissue had very much intensified. To the point where I can't dilate and it hurts really bad.

From what I've read you absolutely have to dilate or you'll cause yourself much bigger problems later on. If it hurts too much (and its not your technique) I'd try to get some stronger painkillers. The women in the YouTube link I posted before took painkillers way beyond what you'd normally take, with the expectation that she would be addicted by the end of it and have to then fix that problem.