What does normal feel like?

[KathyLauren]

Yeah, me again.  I'll try not to sound too whiny.  I'm at nearly eight months and it's definitely not a normal recovery.  But I am trying to manage my expectations realistically.

 

So, with that in mind, a question for those who consider themselves fully recovered.  What does your clitoris feel like when you are not doing anything in particular?  You are just walking, sitting, standing, not doing anything erotic; can you feel it?  Does it make itself felt, or do you have to consciously think of it to feel it?

 

When those bits of flesh were a penis, I don't remember being aware of it most of the time.  Yes, I'd feel it if something was getting pinched or squished or itchy, but mostly, I just ignored it.  I can't do that now.  I am constantly aware of it all my waking day.  And since it still mostly feels like a penis, albeit one that has been sliced and diced and duct-taped under my skin, I am much more dysphoric about it now than I was before.  (Sorry, I know I said I wouldn't get whiny.)

 

What I am getting at is I am wondering how close this is to a normal state of affairs.  Is that pretty much how it feels in normal life, with maybe a little less pain, or should it eventually fade into the background?  Am I expecting too much?

[Jackie C.]

Most of the time, it's just there. I'm not aware of it unless I manage to give myself a wedgie or I'm doing something erotic. Sometimes I'll press it on something accidentally and feel it then, but for the most part I'm unaware. I'm more aware when we're doing something erotic naturally  but yeah, for the most part it's just not something that enters my awareness unless I'm doing something with or to it. It feels perfectly natural to me. Kegel reflexes and all.

 

Hugs!

[Charlize]

Maybe normal is just a setting on our washing machines.  That being said i have experienced similar feeling after my orchiectomy.  It took some time before i forgot the change down there.  Perhaps it was because of healing to some extent but I'm sure it was also my mind.  I had a new reality.  Give it time dear and i'm sure you and your body will find  live to be "normal".

 

Hugs,

 

Charlize

[Jani]

I consider myself finished and I don't feel anything down there while doing everyday activities.  That wasn't true for the first year though.  Bending over to tie my shoes for example was uncomfortable as there was added pressure in the area.  Most doctors (from what I've read) use the whole glans when creating the clitoris rather than trimming it to be smaller like most that I have seen.  Early on this feels like a bulge and can be disconcerting  Eventually it settles down and it's all but unnoticeable.  Now just as with the previous configuration, I am not cognizant of the location of the clitoris unless it is stimulated.

 

I hope this settles down for you Kathy.     
 

Hugs, Jani

[Cyndee]

16 hours ago, KathyLauren said:

a question for those who consider themselves fully recovered.  What does your clitoris feel like when you are not doing anything in particular?  You are just walking, sitting, standing, not doing anything erotic; can you feel it?  Does it make itself felt, or do you have to consciously think of it to feel it?

 

Hi Kathy, I've fully recovered from GCS ( I think) and in my 5th year post op. The first 4 months or so, I had varying levels of discomfort in that area, eventually that slowly faded into the background by the first year. I am happy to say, I don't notice anything out of sorts in day to day living, grateful I guess, I can do my business and it feels natural. I keep the area clean and take an Epsom salt bath once and a while, because it's so sooothing and promotes heathy tissue. 

 

I hope things settle down for you. 

 

Hugs

 

Cyndi

[Heather Shay]

Although I have not had surgery I wonder if you ever feel phantom pain? I remember in college psych class having a prof who had a leg amputated and he said there is something called phantom pain where the part that is no longer there - you feel it. He said he gets itching from the leg that isn't there. Do you ever experience something like that? Just wondering.

[KathyLauren]

Thanks ladies!  It sounds like my expectation that I should be unaware of it unless there is a reason to be aware is reasonable.  That is very helpful information.  At least now I know what I am aiming for.  I have a way to go yet.

 

@Shay, I don't think any of this is phantom pain.  Most of the penis tissue is re-used, so it's not like I am feeling a part that isn't there any more.  Everything that hurts is really there and hurts for real.

[Heather Shay]

Guess I worded that very poorly. That isn't what I meant. I think the term is misleading.  Real pain is real pain. I understand. I guess what I was trying to say was does your mind ever trick you into thinking the penis is there even though it isn't?

[Jackie C.]

2 hours ago, Shay said:

Guess I worded that very poorly. That isn't what I meant. I think the term is misleading.  Real pain is real pain. I understand. I guess what I was trying to say was does your mind ever trick you into thinking the penis is there even though it isn't?

 

Phantom pain is totally a thing, at least it can be. I still get the occasional twinge where my body INSISTS that one of my testicles is in discomfort. It's just the nerves remapping and getting used to their new shape and it subsides pretty quickly when it happens.

 

Hugs!

[VickySGV]

I am heading up on 8 years Post, and just checking back on this in what I have diaried about my recovery.  It was at the 11 month time frame for me that things quieted down as far as my clitoral area went and what I logged in as "erotic" touch set in which requires direct handling or some other emotional  / visual excitement.  For other people I have talked to, it has taken as much as 18 months and even I use the 18 month marker for when I finally got to where I just ignored the whole thing other than the occasional yeast problem or UTI's a couple times a year.

[KathyLauren]

My brain did have difficulty re-mapping which part of the penis ended up where.  It is still an ongoing process.  I don't feel any pain from parts that ended up in the incinerator.  But parts that are still there still more-or-less feel like they are still in their original positions. 

 

My brain has figured out that it is all under the skin now.  However, it has not accepted that it is folded in half: it doesn't realize that the tip is pointing rearward/down.  So, when my clitoris gets aroused (which is still more than 50% of the time), it feels like a male erection pointing forward and up.  Under the skin.  Yeah, it's weird.

[Confused1]

On 11/2/2020 at 7:44 AM, KathyLauren said:

My brain did have difficulty re-mapping which part of the penis ended up where.  It is still an ongoing process.  I don't feel any pain from parts that ended up in the incinerator.  But parts that are still there still more-or-less feel like they are still in their original positions. 

 

My brain has figured out that it is all under the skin now.  However, it has not accepted that it is folded in half: it doesn't realize that the tip is pointing rearward/down.  So, when my clitoris gets aroused (which is still more than 50% of the time), it feels like a male erection pointing forward and up.  Under the skin.  Yeah, it's weird.

 

Thanks for this thread Kathy. I know you have had trouble from the same surgery I will be getting and I'm hoping it settles down for you very soon. I have wondered a lot about what the new clitoris will feel like and you helped answer my questions.

 

Hugs,

Mike

[DeeDee]

On 11/2/2020 at 11:39 AM, Charlize said:

Maybe normal is just a setting on our washing machines

(Not helpful I know, sorry.) Could someone please turn that into a tee in trans colours? I would totally buy that.

[KatieP]

@KathyLauren, For the several weeks after surgery (2 June 2020), every step rubbed my clitoral hood across my clitoris and it was HIGHLY distracting. For me as the swelling went down, so did the intensity of the rubbing. I went back for a minor revision this past October and one of the things the surgeon did was to split the clitoral hood just a bit. THAT has made a huge difference. Now, the only time I notice my clitoris is when I am "searching" for it for specific purposes... ?

 

Perhaps something like this might help your situation?

 

Katie

[Jamie68]

Wow, this is interesting. Some day I hope to get this done. I've wondered what it will feel like. Thanks for sharing this.

 

Jamie

[KathyLauren]

6 hours ago, KatieP said:

@KathyLauren, For the several weeks after surgery (2 June 2020), every step rubbed my clitoral hood across my clitoris and it was HIGHLY distracting. For me as the swelling went down, so did the intensity of the rubbing. I went back for a minor revision this past October and one of the things the surgeon did was to split the clitoral hood just a bit. THAT has made a huge difference. Now, the only time I notice my clitoris is when I am "searching" for it for specific purposes... ?

 

Perhaps something like this might help your situation?

 

Katie

 

Interesting idea. 

 

I suspect that Dr. Brassard's clitoral hood is not like other surgeons'.  My clitoris is seldom covered by the hood, and there is very little relative motion between the two.  It sits between the sides of the hood (Brassard would call them labia minora, but they aren't like any labia minora that I have ever seen in real life or in pictures).  The hood itself, the point where the two sides meet, sometimes rolls up over the clitoris, and then the pressure becomes extreme.  Most of the time, the clitoris sits posterior to the hood.  The continual pressure comes from the "labia minora", which are firm and rubbery, pressing on the clitoris from the sides and squishing it.

 

I think that your situation was different from mine.  But there is no doubt that some modification is needed.  I just don't understand the anatomy down there well enough to have a clear picture of what might be wrong or what is needed to fix it.

[KathyLauren]

I need a hug!

 

I just saw Dr. Brassard.  I have never been so disappointed to hear that I am perfectly healthy.  He couldn’t find anything wrong, says I just have to tough it out for however long it takes.  So that was a very expensive waste of time.

 

It would have been nice if the literature he sent out mentioned that, while most people recover in a few months, if it takes more than a year, it is still considered perfectly normal.?

[ValerieRun]

Ouch, so sorry to hear that. BIG HUG ?

[Lexi C]

This Thread is extremely disappointing. I have mine come up soon, the Doc did not mention anything about constant pain after 4-6 months...I work a manually labor intense job and THERE'S' NO WAY IN HELL that I  can take off past 6month,( and that's cutting close) not to mention a year. I'll be homeless. not kidding homeless..I mean who has a year of rent save up not to mention 18MONTHS  ahgggg.. Not what I want to hear to be honest . Crap

[DonkeySocks]

On 1/25/2021 at 5:17 AM, KathyLauren said:

The hood itself, the point where the two sides meet, sometimes rolls up over the clitoris, and then the pressure becomes extreme.  Most of the time, the clitoris sits posterior to the hood.  The continual pressure comes from the "labia minora", which are firm and rubbery, pressing on the clitoris from the sides and squishing it.

 Ouch. Get a second opinion.

And have some hugs!

[KatieP]

1 hour ago, Lexi C said:

This Thread is extremely disappointing. I have mine come up soon, the Doc did not mention anything about constant pain after 4-6 months...I work a manually labor intense job and THERE'S' NO WAY IN HELL that I  can take off past 6month,( and that's cutting close) not to mention a year. I'll be homeless. not kidding homeless..I mean who has a year of rent save up not to mention 18MONTHS  ahgggg.. Not what I want to hear to be honest . Crap

Every person's experience is a bit different. 3 days after surgery, I walked 5 miles with no issues. (Except for the minor chaffing of the straps of the leg bag attached to the catheter.) Once I got rid of the catheter, I was fine. A little delicate sitting down, but literally no real pain issues. I did have a bit of distraction with the clitoris, but as I say, that was distraction rather than pain.

 

It is easy to say from this side, but I hope you can not worry about your result until you see/feel your result.

 

[KatieP]

6 hours ago, KathyLauren said:

I need a hug!

 

I just saw Dr. Brassard.  I have never been so disappointed to hear that I am perfectly healthy.  He couldn’t find anything wrong, says I just have to tough it out for however long it takes.  So that was a very expensive waste of time.

 

It would have been nice if the literature he sent out mentioned that, while most people recover in a few months, if it takes more than a year, it is still considered perfectly normal.?

This IS sad, Kathy! I am very sorry to hear this news.

 

Almost as sad, This: ? Is as close as I can get to actually hugging you. But the thought IS there...

 

Katie

[Jackie C.]

Yeah, absolutely get a second opinion. I've got a little numbness here and there (13 months), but overall everything works like it's supposed to. Granted, your problem might clear up on its own (I've heard as long as 18 months for full healing), but I would absolutely seek out another doctor to have a look.

 

Hugs!

[Jani]

Kathy I know you are deflated at this moment but keep your head up.  There is a distinct possibility it will clear up.  I hope your flight home is safe. 

 

Jani

[KathyLauren]

Thanks, all!

 

Home again, safe and sound.  Today is my one-year anniversary of my GCS.  And it is the beginning of my two-week quarantine, mandatory after returning from out of province.  (That's how we've kept our case load down.)

 

And, more to the point, it is the first day of the rest of my life, learning to deal with chronic pain.  Hopefully, it will go away eventually.  If it doesn't, I'll just have to put on my big girl panties and carry on anyway. 

 

There are no second opinions.  Dr. Brassard is the only option here.  Insurance won't pay for anyone else, and I sure as heck can't afford to go elsewhere.  Lordy, this consultation was the most expensive 20 minutes of my life, costing me over $1000 that I don't yet know if I'll get back from insurance.

 

@Lexi C, I am sorry to discourage you.  I hope you will go ahead and get your surgery.  But people do need to be aware of the risks.  I'm sure that, if I read the fine print on the waivers, "chronic pain" was probably in there somewhere as a risk.  But, when signing waivers, we tend to read the fine print as "blah-blah-blah" without taking it in.  I was expecting healing to take 2 or 3 months, maybe a couple more if my luck was really bad.  I was unaware that pain lasting more than a year was considered an uncommon outcome, but still considered normal.  If I had known that, I might have had second thoughts.