What does normal feel like?

[JamieMackenzie]

19 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.?

 

I completely hear your frustration and I for one commonly hear this story and too myself have had extreme frustrations with my post-op results. One, I want to say I really appreciate you being vulnerable and sharing your story. Post-op life is something that I feel isn't often discussed due to "feeling different"  or "not normal".  In fact I run a group through my business and this was almost the exact topic that was discussed. The idea of expectation, and often we see the best of the best or the worst of the worst. And if we are anywhere in the middle we might feel shame, isolated, lonely, or like no one else has these challenges because no one talks about it. So thank you for speaking up. 

 

In my field we were trained look out for common frustrations that you hold. Such as "I have never been so disappointed to hear that I am perfectly healthy" And that is what I feel is the problem with allopathic medicine. Medicine tells too many people they are healthy, when in fact they do not feel healthy. I can get really deep into this, but health is a continuum. Many doctors see health as just the absence of disease, but it is so much more, and even if you are "healthy" you can still be missing out on an increased quality of life. 

 

Often the answers we seek is from external authorities like Dr. Brassard, or other surgeon's. Their answers do not actually meet our current needs. Rather, what I have learned,  the answers I seek have to start from my own internal authority (again a deep topic I am skimming the surface of). 4-Years out I have personally run out of hope, I have resorted to my internal authority to help guide myself to better answers which may even come from other types external authorities (PT, Therapists, Wellbeing Coach). I hear you, and don't want you to give up on hope, but I feel it could be time to put on those big girl pants regardless and help yourself manage this challenge you face. 

 

Sorry, that might of been too brash of pep talk, but really I hope you find a place of healing and peace with your results... 

[KathyLauren]

5 hours ago, JamieMackenzie said:

 

Sorry, that might of been too brash of pep talk, but really I hope you find a place of healing and peace with your results... 

 

Don't apologize.  It was a good pep talk, and comes to pretty much the same conclusion that I am coming to.  Thanks.

[Lexi C]

Thank Kathy and I am sorry if i rain on your Thread. I guess it just overwhelm me. I had such a tough times over that last month or so. I just need or hoping for some good nice.  Hope you feel sweetie.

 

God Bless

[DonkeySocks]

On 3/11/2021 at 9:55 AM, KathyLauren said:

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.

I feel like maybe I'm overstepping by posting again because of course we don't have the full story here, and you seem to be pretty done with the topic. I'm just really concerned that you think you can't get any more help with this. It's your body, your insurance should pay for care of your body. See a GP about being referred to a pain clinic, if they have those where you are. If this is about it taking longer to heal, then anti-inflammatories should change or  help that pressure effect, and if they don't, it would seem, from your description of the problem, that there is an external problem and maybe it wouldn't even take a trans specialist to deal with it, but a gynecologist or a more general plastic surgeon should have a look. Don't let other people tell you how you feel. I hate it when medical professionals say someone is healthy when that someone is in chronic pain. In many cases it's untreatable, but from what you've said in this thread it really sounds as if your doctor is being too dismissive. But if you're sure he got the message as to what's wrong and he explained it to your satisfaction, I don't know, maybe I'm overreacting to hearing about this over the Internet. But you sound upset and it really sounds like something that needs a second opinion, from any doctor willing to talk to you. Even an online consultation. Anyway, I'll let my ranting end now. Good luck, I'm not judging you for dealing with the pain, sometimes that's what has to happen. I just hope somebody can help you and you fight to get help.

[Jani]

@DonkeySocks I'll jump in and say you're not overstepping.  This is what this forum is about, offering support and suggestions as well as an ear to listen.  

 

@KathyLauren you are obviously looking all right externally from what I hear of the doctor's prognosis but internally there appears (IMO) to be a nerve connection issue.  I still have some numbness in my upper left thigh after surgery almost 4 years ago.  This was not in an area the surgeon was near but most likely a complication from being in the stirrups for the surgery duration.  I know you are disheartened and you have the right to be.  Nature can be disagreeable some times.  I do hope this pain calms down.  

 

Jani

 

[KathyLauren]

Thanks, all.  @DonkeySocks, all advice and suggestions are welcome.

 

@Jani, you are correct.  My understanding from what the doctor said is that my nerves are over-sensitive.  They are (painfully) aware of every little bit that has been moved, even though my brain still hasn't always figured out where they got moved to.  And, because of the sensitivity, my brain is paying too much attention to those signals.

 

So I need to desensitize.  Fortunately, I am fairly good at "mind over matter".  (I am the only person I know who can stop the hiccups just by willing them to stop, and I have learned to dissociate during electrolysis.)  So I am going to try to ignore those signals.  The fact that he said everything looks fine down there means I don't have to worry that I am damaging anything by ignoring the nerve signals.

[Dorit]

HI Kathy! ?‍♀️

Sorry I am late in trying to help you, I just joined this forum.  I am back in Philadelphia, over two years since my MDV, five days post-op revision.  I too have struggled with pain and discomfort. I have experienced a year of cancellations because of the corona pandemic, and even an attempted revision in Tel Aviv last July that was written up as "exploratory surgery" because the surgeon did not see anything to correct once I was on the operating table!

 

My problem was excess erectile tissue in my right labia minora and clitoris.   It was not always visible, but I could feel the swelling and discomfort, particularly when I removed my underwear before bed.  I hope now my problem will be solved.

 

Some of us girls just have to deal with a difficult recovery, I accept it, and I hope you can too.   I hope that somehow you can get another opinion, as my experience has taught me that every recovery is unique and that not every surgeon can clearly see what needs to be done.

 

I have to add that in spite of my difficult, long recovery, I am very happy and delighted that I has GCS.  I now have female problems!?

[KathyLauren]

Thanks, @Dorit!  I am glad you were able to get relief.

 

So far, the psychological approach has helped me a lot.  It is still uncomfortable, but I am able to ignore it most of the time.  The impression I got from my surgeon was that my nerves were sending me "fake news".  Just as with certain politicians, if you ignore them, they shut up.

[Kris-Boston]

More as I know there will be a range based on age and physcal condition .  How long post surgery where you able to do long bike rides  and run distance .   More for planning the time of year and range of expectaions . 

[Jackie C.]

Well, you and I are the same age and I was able to do cardio on the stationary bike at around six weeks. I was reasonably healthy at the time (overweight, but I'd been working out for about two years prior to surgery and working intensely for the second year). It depends on how your surgery goes though.

 

Hugs!

[Kris-Boston]

Thank you .   In the better months I bike about 100 miles a week .  Its something that I enjoy , my just have to get a  seat  more gender approraite .  Have a Hybrid bike good for the trails , not major off road ing . 

[Jackie C.]

2 hours ago, Kris-Boston said:

Have a Hybrid bike good for the trails , not major off road ing . 

 

Bumps will NOT be your friend for a while. Better keep to the bike paths until you're completely healed. ?

 

Hugs!