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Orchiectomy prior to GCS


Guest Kaylee

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Guest Kaylee

Good morning all,

I was hoping a few of you ladies would be able to help me with a scenario slightly out of the norm?

I’ve been on HRT for 18 months, and on Spiro for about 10. Since I began Spiro, I have had a number of ill effects from it, including a constant drop in blood pressure (hypotension), issues keeping hydrated, and issues with insanely vivid and emotionally intense dreams.

I understand the first 2 are common place, and knew that going in. The dream issues however, seem to be less common, as I have not spoken to any trans-women who have this issue, only found forums based on other things people take Spiro for. If the whole reason I am transitioning is to have less stress with myself and my life… waking up sore from thrashing around all night, or constantly waking up screaming and crying is NOT the way to do it. (that messes you up all day!)

As a result of my intolerance for what I understand is already a pretty low dose of Spiro, and my depressingly high levels of T, it was recommended by my Endo that the testicles should to be removed, and completely kill testosterone production. Great, I’m totally on board. Have an Orchiectomy, Kill the T, eliminate the Spiro, the dreams, the low blood pressure, waking twice during the night to pee. It also gets rid of the discomfort from a varicocele that has been giving me problems for the last 15 years, and helps clothing fit better…. seems like a winning idea!

But there’s a complication. I personally NEED to have GCS. My decision to transition, is based on the realization that I want GCS. The complication lies in the fact that having an orchiectomy could cause scar tissue on the scrotal skin used for a vaginoplasty at a later date. I understand that it can be done laparoscopically, which should eliminate the issue of scar tissue, but not sure the insurance will pay for that specialty. I also understand that the skin could possibly shrink as well, but that certain massage is possible to keep that from happening.

I was hoping someone here on LP may has had an Orchi, and then had GCS later on that could give me the benefit of their experience? I was unable to find anything in prior posts regarding orchiectomy prior to GCS.

Hugs,

Kaylee

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This is pretty common question about orchi before SRS. There are certain ways the orchi should be done so that it doesn't interfere with SRS. Contact the SRS surgeon to find out what information should be conveyed to the doctor doing the Orchi...or better have the surgeon you are planning to have SRS with do the orchi.

I guess you are expecting a long wait before SRS? To me it seems wasteful to pay extra for one surgery when it ultimately will occur in the second, but I understand funds may not be available for the latter.

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Guest LesleyAnne

Hi Kaylee,

I have heard so many different answers to your question. I would like to know the answer as well.

I had a bi-lateral in 2014, and I do stretching exercises every day since I have been told skin shrinkage will occur. Plus I have been told that some surgeons that do GCS will not do them after an Orchi, or post 3 years after an Orchi. It is also a general consensus that the surgeon doing the GCS can instruct the surgeon doing the Orchi on where to make the incision on the scrotum so as to not cause complications later when it comes time to do the GCS.

I see that you live in Cali so are you able to receive medical care from Kaiser? Kaiser is setting up to do GCS, and they could be a source of information for you.

And of course I have a dumb question.....None of my business but have you considered skipping the Orchiectomy step, and going right towards GCS.

If you're like a lot of us cost is a factor. Medicare did my Orchi but not my GCS. So I'm somewhat stuck until I could find a surgeon who will even do it thru Medicare, much less Medicare agreeing to pay, and then my VA won't do it either.

I hope you have more options, and I wish you success. :wub:

My parting advice is to contact a couple of surgeons who perform GCS, and get their advice. A lot of times the staff will relay the question to the doctor, so my very best to you :)

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Guest Kaylee

Lesley,

As a question to you, is your plan still to have gcs?

Your advice to contact surgeon's who do gcs is valid, and a good idea.

I know Kaiser does gcs in california, but with the large number of times my family, or myself has had issues with Kaiser, I would never go back.

I have healthnet, whos policy does cover certain things under certain circumstances regarding gender reassignment, including orchi, and breast augmentation. GCS is suposedly covered as well, but I haven't read anything past 1 year full time.

The reasoning for the orchi is that the Spiro really messes me up, and I have only been living full time for 4 months. Insurance requires 1 year full time for gcs, has a longer recovery, and a very long wait. My Finances would be depleated by the time I got it approved.

The orchi allows me to continue with laid plans for school, and have GCS in a few years after I have been working a new job for a while.

I'm sorry to hear that you are stuck sweetie. Hopefully, everything will change here soon, and it will be covered by medicare and the like.

Stay strong :)

Kaylee

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Guest LesleyAnne

Hi Kaylee,

The answer to your question "As a question to you, is your plan still to have GCS?" the answer is a resounding Yes! :)

But this old granny is quickly running out of time :(. And thank you so much for caring words. I'm stuck but not defeated yet :superman: :)

However that does not keep me from wishing you a smooth journey to your goal. When you are ready of course.

I will tell you though I am so glad to be rid of the two vagrants hanging around the lamp post. E works much better un-apposed!

I do understand your having complications caused by anti-androgen drugs, and even though most doctors consider a low BP as being wonderful, I can say it's actually quite scary (I have it too but for other physical issues). No fun seeing unexpected stars, and hoping when you fall it's on something soft!

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Guest KerryUK

Hi Kaylee,

You mistimed starting this thread. I'm sure it's Charlize who has had the Orchi alone for medical reasons. She would be able to answer quite a few questions regarding this. She is away for a few days at the moment - I hope she will see this on her return.

Kerry

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  • Admin

I had an orchi for most of the same reasons you want one, Kaylee. It's worked out great. My T-levels are practically non-existent, my E-levels are in the normal female range, and I no longer have those nasty side effects. The comfort and appearance issues are good, too. What I can't answer concerns future GCS. I would go with the answers provided by Drea and the others.

Carolyn Marie

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  • 2 weeks later...
Guest SonadoraXVX

I read this on the Preecha Aesthetic Institue website ( was wondering the same issue, here is what I found so far:

Selecting the method in Sex Reassignment Surgery
Between Penile Skin Inversion or Sigmoid Colon
if you are:
1. Long Penis (>6 inches (15 cm), when construct) = Penile Skin Inversion (PSI)
2. Medium Penis (2-6 inches (5-15 cm), when construct) = Penile Skin Inversion (PSI) with Scrotal Skin Graft (SSG)
3. Short Penis (<2 inches (5 cm), when construct) = Penile Skin Inversion (PSI, SSG) with Sigmoid Colon Graft (SCG)

But I would like more clarification too, since this was my original question on forums across the net:

I have been considering an orchiectomy, since I hate taking the spironolactone, just hate taking pills period, plus I'm 48, not good if your in your 40's. I'm currently on E pellets, but just want to cut out the pill taking as much as possible, with the exception of progesterone. I've recently read on Preecha Aethestic Institute (http://www.pia.co.th) website this information:

Selecting the method in Sex Reassignment Surgery
Between Penile Skin Inversion or Sigmoid Colon
if you are:
1. Long Penis (>6 inches (15 cm), when construct) = Penile Skin Inversion (PSI)
2. Medium Penis (2-6 inches (5-15 cm), when construct) = Penile Skin Inversion (PSI) with Scrotal Skin Graft (SSG)
3. Short Penis (<2 inches (5 cm), when construct) = Penile Skin Inversion (PSI, SSG) with Sigmoid Colon Graft (SCG)

So does that mean if, my bottom junk is in the medium range to long range, I can go ahead with orchiectomy, since there is enough skin there, depth of the newly created vagina?

Thoughts on this issue: Maybe those more in the know can put a light on this issue, its been really bugging me.

​I feel I have the answer already up to 50%, and may go on this answer, since nobody else can answer it objectively, with a yes or no, different doctors different techniques, I know, but I don't have the luxury to be guessing answers either, time is of the essence for me. So, I feel you Kaylee. I'm in Southern Cali, FYI :thumbsup:I and I do have Kaiser, that covers SRS/GRS and not even my endo could answer this, I feel like nobody has a clear cut answer, really bugs me. ​


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  • Forum Moderator

Kaylee i had an orchiectomy for the same reasons you cited as well as the feeling that it was perhaps the best and only step my cardiologist would allow. That was after changing to a GLBT friendly cardiologist and going several years of difficulties, tests and setbacks.

I can't say if it would effect GCS but the scaring in my case was quite small and very much on the two sides of the scrotum. The tissues there has diminished a bit but i remember how that would occur with temperature before the procedure. If you have an idea who you might use for GCS in the future it would most likely be best to discuss this with them. My procedure was done by Dr McGinn who is well known for her work in trans surgery and just happens to live nearby.

Hugs,

Charlize

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  • Admin

Several of my post-op "sisters" have dealt with this in a couple of ways, but the ways do need the advice of the prospective surgeon, of which we have at least one here in So. Calif whom you may have heard of. (I can PM you with name if you need.) There will be a time window in which the answer is that nothing much will happen if you do have an orchiectomy that will foul up GCS by any of the group of surgeons here in the U.S. that I know. Scrotal tissue will be the first and worst victim with nothing to keep it stretched out. Sometimes as in testicular cancer cases, the testicles can be replaced with prosthetic implants to keep the tissue, but I can understand that this might be Dysphoric as all get out. If you have chosen your surgeon, they can and will advise you on that option. With the scrotal graft such as I had, the penis length is not the problem it used to be, in fact, with all 4 California surgeons today, parts of the penile shaft are re-purposed in places other than the penetrable part of the neo-vagina. Not a much better answer than above, but I only know of limited cases where a pre-GCS orchiectomy has really fouled things up for vaginoplasty.

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  • 3 weeks later...
Guest Kaylee

I would like to thank you all for your insite, and information. I've been a little absent due to personal and family issues.

As expected, the Insurance has denied my request for Orchi, citing "Gender Reassignment is not covered by your plan."

This notice, I just got yesterday.

Funny though, when I open my explanation of benefits, a booklet that is designated for my specific plan... it says on page 60, that "Transgender Surgery that requires pre-authorization by "my insurance" is a covered benefit." It continues to state that HRT for one year is required, and refers to it again as "the actual surgery".

On the other hand... the insurance companies "Sexual Reassignment Surgery" policy states Orchi is covered. But since there is always fine print, it states "criteria" for approval. Sure it does... anything to get out of covering things.

So I kept reading, and found something interesting. Basically, the policy states that when there is an incongruance between the SRS policy, and the medical plan contract... the medical plan contract takes pressedent.

What defines "transgender surgery"... or "the actual surgery"? I swear, that is how they refer to it... you can't make this stuff up.

The way I read the plan contract, is that "SRS" is covered, while still requiring approval as medically nessesary... which for me is the case. As far as I can tell, my plan contract does not state I should refer to any seperate policy for anything, sooo... end all be all.

I wasn't looking for GCS this soon simply because of the timing, and length of recovery.

I'm going back to school, and there are timing issues.

I desperately want GCS. This realization was what finalized my decision to transition. I just don't know if I can hold out financially if I decide to push for GCS if that is my only option. If it happens during school (online classes) I may be OK, but if it is scheduled for any further than 9 months of school starting.... the jig is up, and I may not be able to afford even ramen.

Sorry for the rambling, I only slept from 11pm to 2am... and can't get back to it.

Ha e a great day all!

Kaylee

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  • Forum Moderator

Kaylee i'm sorry you are getting the runaround from insurance. Let us know how it washes out and whatever happens try to relax about it as you can. I went through many hoops before my surgery could occur and maybe the worst part was how the anxiety built at times. Sharing that with others and then trying to let go as i regrouped for the next battle was the best i could do.

Many hugs,

Charlize

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  • Admin

Kay -- The real recovery issue from GCS that would hang up school stuff is the comfort in sitting which is 4 to 6 weeks, and your dilation schedule which is most intense in the first 90 days, (3 or 4 times a day) and drops to a single dilation per day at 6 months. If you are taking on-line classes with a bit of flex in daily time, I have had friends who missed only the week of their surgery due to be groggy from pain meds, but who caught up quickly and Aced the classes.

You are in California you say, and health insurance policies in the State are required to cover GCS or GRS by state law. The State Insurance Commission can help you out with info to give the insurance company to let them know they are on the hook!! Sounds like the claim may have been processed by someone out of state.

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Guest Kaylee

Vicky,

My issue is that I can barely survive financially through the end of classes, then I need to find work right away. I'm gonna have a long wait if I go with GCS right now... meaning a concflict with finding work when classes are over... you know what I mean?

I filed my grievance today. Possibly as long as 30 days for resolution.... on something so clearly written in my policy.

They just love to drag their feet :\

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Guest Mickey

I had to fight with my insurance company for almost a year, before my Orchie was approved. They did deny it the first time. While it was in the appeals process, my gender therapist got a call from the lady with my insurance company that gathered all the info for the Dr that made the final decision. I got the number for her, from my GT and called her. We spoke for a good half hour, while I poured my heart out to her. It got approved shortly after that. That was back in September when it was approved. I've since been trying to find a place near me that will allow the procedure.

One of the main things that is helping me get through all this, is this thought; I am fighting this fight so that it will be easier for the next Transgender person. And it is so disheartening. Dealing with the systemic bigotry. But we are breaking down walls girl. So let's keep up the good fight.

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  • 2 weeks later...
Guest Kaylee

Update:

So, after about a week, the insurance decided that my consult with the surgeon was infact covered. That's not to say they won't try to get out of paying for it though.

I had my appt yesterday, and as a result of me wanting SRS at a later time, the doctor is apprehensive about doing the orchi without a consult from an SRS expert. As a result, he has put in a referral for me to go up and see Dr. Marci Bowers.

I expect it will be rejected, but by then he will have conversed with her about any issues... then submit for surgery approval.

Potentially... orchiectomy surgery within 6 weeks :)

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  • 5 months later...

Hello All, time to add to this post. A lot has changed, and complications and new found information has come to light.

I'm gonna ask first, if anyone here could recommend a surgeon for an orchiectomy? I live in San Bernardino County, close to Los Angeles. The way things are working, it will be much faster to go right to the insurance, than to stay in network and go through my medical group. (how does that make any sense at all?)  So, I'm working backwards, and finding a surgeon first. If I stick with the surgeon who is in network, I'm gonna wait another few months before I see anything happen. Out of network, I can submit directly to the insurance (HealthNet) and get it approved much faster.

 

It took 11 weeks last time going through my medical group for a referral to go see Dr. Bowers for a just a consult. Sadly, it turns out that it would be another year on hold for surgery with her. It's already been 9 months, and I am done waiting.

As another note, I have submitted for Breast Augmentation as well. That actually seems to be going through insurance much faster than for Orchi, and it's easier to prove medical necessity for Orchi than B.A.

 

Again, if anyone could recommend a surgeon for an Orchiectomy here in the Los Angeles or San Bernardino areas, I would be most grateful :)

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  • Admin
1 hour ago, Kaylee said:

.Again, if anyone could recommend a surgeon for an Orchiectomy here in the Los Angeles or San Bernardino areas, I would be most grateful :)

Hi, Kaylee.  I have some information.  I'll PM you.

Carolyn Marie

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