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Hysterectomy questions

Started by ZombieDog, August 08, 2016, 02:34:33 PM

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ZombieDog

The further into my transition I go the more closely I'm looking at bottom surgery and hysterectomy.  Especially as I've developed relatively frequent cramping and have decided against ever bearing children.

I have concerns about lasting complications from total hysterectomy though.  I've read that some possible permanent problems include urinary incontinence, frequent need to urinate, fistula, etc. 

Can anyone shed light on how common these things are?
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blink

Urinary and bowel complications are a big concern for me too. This is something to discuss with your potential surgeon(s), I am not a doctor, but here's my understanding of the matter.

The type of hysterectomy makes a difference in long term outcome. Check out the difference between abdominal, vaginal, laparoscopic-assisted vaginal, and total laparoscopic. Something else to keep in mind, almost all statistics on this are gonna be concerning cis women who: 1) do not have a vaginectomy 2) are not on testosterone HRT, therefore have less muscle mass than a trans man on a dose of T adequate to maintain male-typical levels  3) are not always, but often, middle age or older and would be more prone to urinary issues regardless.

To my understanding, the chance of long-term issues is minimized by getting laparoscopic hysterectomy performed by a surgeon competent in the technique (don't be shy about asking for their complication rates, how many times they've performed the operation, etc.), vaginectomy, and staying on T. With a vaginectomy the bladder is better supported than if the uterus were removed but a vagina were still present. All the better supported with T and an active lifestyle (resumed when one is well healed after surgery, consult your surgeon) to have strong pelvic floor muscles. Look into kegel exercise.

I don't know exactly what you have in mind for bottom surgery - not everybody wants a vaginectomy - but that's what my reading on the matter has told me. Odds should be in your favor, but there are no guarantees. Only you can decide if the benefit outweighs the risk.

I've put a lot of thought into it and, for me, I'd rather have the right junk and run the small risk of needing to wear some manner of adult incontinence product than put up with the current plumbing for the rest of my life. There are no guarantees of not developing these kinds of issues down the road, anyway. Getting old is rough.
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ZombieDog

Thank you, that is helpful.  I haven't decided between phallo and meta(I imagine cost will come into the equation) though I do want a vaginectomy and to have testicles constructed.  I think having a vagina bothers me more than lack of penis.
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FTMax

1% complication rate for anything related to urination during the hysto, according to my surgeon.

I personally had no issues.

ETA: This is separate from the complication rates related to urethral lengthening with bottom surgery procedures. Those range from 20%-40% for meta and phallo, respectively.
T: 12/5/2014 | Top: 4/21/2015 | Hysto: 2/6/2016 | Meta: 3/21/2017

I don't come here anymore, so if you need to get in touch send an email: maxdoeswork AT protonmail.com
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blink

Quote from: ZombieDog on August 08, 2016, 04:02:32 PM
Thank you, that is helpful.  I haven't decided between phallo and meta(I imagine cost will come into the equation) though I do want a vaginectomy and to have testicles constructed.  I think having a vagina bothers me more than lack of penis.
I hear ya. As far as I'm concerned, I have a penis. It's just small. The rest of that stuff down there needs to go.
Am leaning towards phallo at this point, but a vaginectomy and metoidioplasty + scrotoplasty would still be heaps better than dealing with this.

Great avatar, by the way.
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mm

My take on this, many cis women have had kids so their pelvic muscles are strained from childbirth and how they hold the pelvic organs is different from us, so the results of a hysto is going to be different.  I want a complete removal of everything including the vagina and a meta or phallo haven't decide which one yet. FTMAx's data of 1% is interesting as that is very small.
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ZombieDog

I like the look of the phallo better but the price, greater risks, and number of surgeries might not be worthwhile as I don't need to penetrate my partner.  Then again I ask myself if the appearance alone makes it worthwhile.

It's all a pipe dream at the moment since I can't afford my relatively inexpensive top surgery let alone bottom surgery.  I have hope my insurance might pay for a hysterectomy though.
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FTMax

Quote from: mm on August 08, 2016, 06:01:33 PM
My take on this, many cis women have had kids so their pelvic muscles are strained from childbirth and how they hold the pelvic organs is different from us, so the results of a hysto is going to be different.

I 100% believe that this has everything to do with it. The majority of anecdotes you'll read online about hysterectomies are from cisgender women who are typically at a later stage in life. It makes a lot of sense to me that this procedure would be a lot harder on them. My surgeon for my hysto specifically said that every transman she's worked on (1) had an easy procedure, and (2) had a non-complicated recovery. If any of you are on Facebook, there is a great group you can search for called FTM Hysterectomy. Loads of pictures, experiences, Q&A sessions, etc. It is very helpful for pre-op guys.

Quote from: ZombieDog on August 08, 2016, 06:04:48 PM
I like the look of the phallo better but the price, greater risks, and number of surgeries might not be worthwhile as I don't need to penetrate my partner.  Then again I ask myself if the appearance alone makes it worthwhile.

It's all a pipe dream at the moment since I can't afford my relatively inexpensive top surgery let alone bottom surgery.  I have hope my insurance might pay for a hysterectomy though.

Unless you live outside the US and want to come to the US for surgery (or vice versa), the majority of folks are having everything bottom-related covered by insurance these days. It is infinitely cheaper to save up enough money to pay for monthly premiums than it is to save up for the full price of a bottom surgery procedure.

Lots of employers are starting to offer inclusive coverage. HRC has a great list. It isn't comprehensive, but it's a good start. Lots of national companies like Apple, Starbucks, Best Buy, Target, etc. - all covered. Definitely worth some investigation. I'll be paying $4k for my phallo as opposed to $125k which was the cash price.

And on your other question - I also have very little need to penetrate my partner, but standing to pee is important to me. I know that after I get through any urethral complications after surgery, I'll be able to STP. There is a very slim chance that I wouldn't be able to, and that would mostly be due to poor management of complications. Either way, it was much better odds than the 50/50 shot both surgeons I consulted with gave me if I decided to go with meta.

So I would make a personal pros/cons list for yourself and then meet with a surgeon that performs both procedures early on in your research process just to see what their thoughts are for your specific case. I ended up having to go with my dead last choice of donor site, but I think complication-wise and needs-wise, I will be better off for it.
T: 12/5/2014 | Top: 4/21/2015 | Hysto: 2/6/2016 | Meta: 3/21/2017

I don't come here anymore, so if you need to get in touch send an email: maxdoeswork AT protonmail.com
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ZombieDog

I'm very relieved about the hysterectomy complications being less than what I've been lead to believe.

I'm in the US but my insurance coverage is not great.  The only places that my insurance is good at is within my own city so while I'm certain I could find a good place here to get a hysterectomy, there are no good top surgeons or bottom surgeons that I know of at either of the covered hospitals.(I asked around, the nearest one with any experience is two hours away, so not covered.)

I'm considering changing jobs due to needing more money and possibly for better insurance but nothing has jumped out at me yet.  I am definitely looking into companies whose insurance covers trans surgeries but it's also important to me that my job not be completely soul crushing.  I could totally work for some of those places you listed though.  I think I'll have to start putting out apps.

Quote from: FTMax on August 08, 2016, 06:16:07 PMLots of employers are starting to offer inclusive coverage. HRC has a great list. It isn't comprehensive, but it's a good start.

What is HRC?

Nevermind, I found it.  For anyone else that wants to see the list: http://www.hrc.org/resources/corporate-equality-index-list-of-businesses-with-transgender-inclusive-heal
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FTMax

Quote from: ZombieDog on August 08, 2016, 07:25:41 PM
I'm considering changing jobs due to needing more money and possibly for better insurance but nothing has jumped out at me yet.  I am definitely looking into companies whose insurance covers trans surgeries but it's also important to me that my job not be completely soul crushing.  I could totally work for some of those places you listed though.  I think I'll have to start putting out apps.

I think working at a soul crushing place is worth it as long as it's done with a goal in mind. I am only staying in my current position long enough to have surgery covered, then back to freelancing full time for me.
T: 12/5/2014 | Top: 4/21/2015 | Hysto: 2/6/2016 | Meta: 3/21/2017

I don't come here anymore, so if you need to get in touch send an email: maxdoeswork AT protonmail.com
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Ayden

I am 3 weeks out from having a total hysto, and after reading horror stories I was pretty rattled.  I asked my doctor about every possible complication that I knew of and she answered my questions and told me how many times she had personally encountered them. Turns out, she only had one surgery out of over 1000 that had complications, but it was due to underlying health conditions. When you get to the planning stage, ask your surgeon for their stats. Any trustworthy doctor will gladly give you that information.

I fortunately did have insurance. We had no idea at the time we got it if my surgery would be covered. Turns out it was easier for me to get it covered than a woman going through the same procedure for health reasons. I didn't even need to get authorization. My bill is $5200 and the total cost was about $14000, including my preop lab work and 24 hours under the care of fantastic nurses. It might be worth it to look into insurance you have and the insurance for any job you plan to take. I live in a conservative state so I was surprised that mine was covered with no issues.

Aside from all that, you'd be surprised by how quickly you can bounce back. I was on my feet after 4 hours (moving like a lethargic drunk snail, but still), had my catheter out about an hour after that and was able to get up and down out of the hospital bed about every 45 minutes to pee. (That's just because I drank so much water as I was determined to not have the catheter in for any longer than necessary. It's been just over 3 weeks and I feel fine. I have occasional soreness in my stomach, but it just feels like I overdid it on an ab workout. I was off the pain pills in less than a week and sleeping on my side after 10 days.

Any surgery is nerve wracking, but it's important to remember that about 600,000 hysterectomies take place every year and overall it's a very easy recovery if you take your doctors orders into account. The reason the horror stories are so easy to find is that people tend to share problems and complications much more frequently than successes and easy recoveries.

The worse part of my surgery was getting poked 7 times trying to get the IV started. I'm a really hard stick.

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CMD042414

This is not to frighten you at all just to give you all possible scenarios. I had a full laporoscopic hysterectomy, so uterus, fallopian tubes, cervix. Procedure took about 3 hours. Absolutely no complications or hiccups and the doctor said it was a breeze. My recovery was ok until I began to pass large blood clots about 2 weeks later. They ranged in size from a golf ball to an orange. Now I want to be clear that I had absolutely no pain or discomfort at all post surgery from the procedure.

The only external healing was the stitches on the two small holes in your pelvis where they stick the laparoscope through. The clots were passing easily with no other symptoms. I was experiencing something called pooling where the excess blood from surgery doesn't release as it materializes and instead coagulates at the vaginal cuff. Eventually gravity takes place and it drops down. This happens quite a bit and should not be a concern though it is certainly no fun.

The fix was going to the doc and having a small amount of nitrous oxide applied at the cuff to act as a suture and close off the area where blood pools. The cuff is where the cervix had been and the tissue is sewn shut.
Started T: April 2014
Top Surgery: June 2014
Hysterectomy: August 2015
Phalloplasty: Stage 1-August 2018
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mm

CMD042414, did you keep your ovaries, didn't see where you said they were removed?  Are you planning any other lower surgeries?  I your recovery is still good.
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CMD042414

Quote from: mm on August 15, 2016, 11:09:28 AM
CMD042414, did you keep your ovaries, didn't see where you said they were removed?  Are you planning any other lower surgeries?  I your recovery is still good.

Ovaries removed too, sorry, left that part out. I want phallo with Crane but if I get my insurance to cover it he doesn't take what I have so I will look into Schecter. Recovery has been a breeze since the one mishap.
Started T: April 2014
Top Surgery: June 2014
Hysterectomy: August 2015
Phalloplasty: Stage 1-August 2018
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