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Uh oh... Prolactin high at 34 ng/mL; No estrogen for you!

Started by Michelle_P, June 14, 2016, 12:10:25 AM

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Michelle_P

Well, I got my lab results over the weekend.  Everything OK but prolactin, at 30 ng/mL.  Nope, I'm not pregnant.  I'd just run 5.3 miles a couple hours before the blood draw.  Yeah, oops.

So, I re-tested this morning two hours after waking, after avoiding everything on the lists of stuff that elevates prolactin.  Everything. The results just came back.  34 ng/mL.  Normal range for assigned male at birth is 0-18 ng/mL. 

So, estrogen is on hold now, and spironolactone is at fractional strength.  HRT is on hold, and now I've got that crazy fear that I'll be stuck here forever.  :-\

I can't help but wonder if this is just the pituitary being part of my screwed up brain, and it has always been this way.  Or maybe I'm just 'lucky' enough to have caught a little bitty prolactinoma very early.  But goddess, what a complete bummer.  It's got me down tonight, and I just need to vent.
Earth my body, water my blood, air my breath and fire my spirit.

My personal transition path included medical changes.  The path others take may require no medical intervention, or different care.  We each find our own path. I provide these dates for the curious.
Electrolysis - Hours in The Chair: 238 (8.5 were preparing for GCS, five clearings); On estradiol patch June 2016; Full-time Oct 22, 2016; GCS Oct 20, 2017; FFS Aug 28, 2018; Stage 2 labiaplasty revision and BA Feb 26, 2019
Michelle's personal blog and biography
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veritatemfurto

that was never a problem for me so i don't know... what is it? i heard of some having to stop before but i just kept it in that category of things i didn't want my anxiety to run with....
~;{@ Mel @};~

My GRS on 04-14-2015


Of all the things there are to do on this planet, there's only one thing that I must do- Live!
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Michelle_P

Quote from: veritatemfurto on June 14, 2016, 01:08:07 AM
that was never a problem for me so i don't know... what is it? i heard of some having to stop before but i just kept it in that category of things i didn't want my anxiety to run with....

Well, prolactin is a hormone that is a thundering nuisance in male bodies, but is essential in female bodies for triggering lactation.  It's produced by the pituitary gland, a little gland in the center of the brain that rests in a bone socket in the skull.  Mine is apparently overproducing for some reason.  The fear is that it might be a tumor (not cancerous) called a prolactinoma.  These are fueled by estrogen and make prolactin.  The gotcha is that as they grow, they'll cause the pituitary to press on some surrounding bits that we need for vision.

So, since going blind or having double vision would be bad, I'm not to feed any possible prolactinoma, so no estrogen for me.  Meanwhile, the endocrinologist is on vacation, so I'll be on hold for a while until they're back and order more tests to improve the guesswork.
Earth my body, water my blood, air my breath and fire my spirit.

My personal transition path included medical changes.  The path others take may require no medical intervention, or different care.  We each find our own path. I provide these dates for the curious.
Electrolysis - Hours in The Chair: 238 (8.5 were preparing for GCS, five clearings); On estradiol patch June 2016; Full-time Oct 22, 2016; GCS Oct 20, 2017; FFS Aug 28, 2018; Stage 2 labiaplasty revision and BA Feb 26, 2019
Michelle's personal blog and biography
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alex82

Quote from: Michelle_P on June 14, 2016, 01:39:18 AM
Well, prolactin is a hormone that is a thundering nuisance in male bodies, but is essential in female bodies for triggering lactation.  It's produced by the pituitary gland, a little gland in the center of the brain that rests in a bone socket in the skull.  Mine is apparently overproducing for some reason.  The fear is that it might be a tumor (not cancerous) called a prolactinoma.  These are fueled by estrogen and make prolactin.  The gotcha is that as they grow, they'll cause the pituitary to press on some surrounding bits that we need for vision.

So, since going blind or having double vision would be bad, I'm not to feed any possible prolactinoma, so no estrogen for me.  Meanwhile, the endocrinologist is on vacation, so I'll be on hold for a while until they're back and order more tests to improve the guesswork.

Oh Michelle, I'm so sorry about this bump in the road. There must be a way round it? Just keep going. I'll be hoping for you.

How are you finding electrolysis?
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SashaGrace

My prolactin level was off the scale last blood result I had as well but it dropped down on the retest but only just into the acceptable range. More tests are ongoing...

Hopefully it'll be OK for both of us!!
'Yea though I walk through the shadow of the valley of death, I will fear no evil.' Psalm 23, Verse 4
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Michelle_P

Quote from: alex82 on June 14, 2016, 12:27:49 PM
Oh Michelle, I'm so sorry about this bump in the road. There must be a way round it? Just keep going. I'll be hoping for you.

How are you finding electrolysis?

Like the guy who saw the demons circling said, "It's just one damn thing after another."  I'll probably just have to get dressed, get out of the house, and do some shopping.  Purely for therapeutic reasons.  Especially the shoes and wigs...

The electrolysis went very well.  This was an intro session, so we talked hair growth, what needed to be done, and so on, followed by an easy hour in the chair working on my chin.  Realistically, it's a spa session for me, with Jodie taking care of me while I relax.  She seems to have a good clientele of MtF folks.  She's using thermolysis on me, which works pretty well for me.  Very little discomfort, redness or swelling, and only three tiny red dots visible the next day.

The next session will be for two hours, and we'll see about getting a regular 4 hour block if I tolerate that well.
Earth my body, water my blood, air my breath and fire my spirit.

My personal transition path included medical changes.  The path others take may require no medical intervention, or different care.  We each find our own path. I provide these dates for the curious.
Electrolysis - Hours in The Chair: 238 (8.5 were preparing for GCS, five clearings); On estradiol patch June 2016; Full-time Oct 22, 2016; GCS Oct 20, 2017; FFS Aug 28, 2018; Stage 2 labiaplasty revision and BA Feb 26, 2019
Michelle's personal blog and biography
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alex82

Quote from: Michelle_P on June 14, 2016, 12:51:04 PM
Like the guy who saw the demons circling said, "It's just one damn thing after another."  I'll probably just have to get dressed, get out of the house, and do some shopping.  Purely for therapeutic reasons.  Especially the shoes and wigs...

The electrolysis went very well.  This was an intro session, so we talked hair growth, what needed to be done, and so on, followed by an easy hour in the chair working on my chin.  Realistically, it's a spa session for me, with Jodie taking care of me while I relax.  She seems to have a good clientele of MtF folks.  She's using thermolysis on me, which works pretty well for me.  Very little discomfort, redness or swelling, and only three tiny red dots visible the next day.

The next session will be for two hours, and we'll see about getting a regular 4 hour block if I tolerate that well.

Good - keep pushing through. Yep - one damn thing after another.

I find electrolysis so boring - I've just returned from another one - it wouldn't be so bad if you could read a magazine or a newspaper or anything. I looked at a place in Belgium that does 8 hour sessions for 4 days straight. I'm seriously considering it, just to get it done. That'll be very attractive by day 5 for the flight home.
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Michelle_P

Quote from: SashaGrace on June 14, 2016, 12:30:39 PM
My prolactin level was off the scale last blood result I had as well but it dropped down on the retest but only just into the acceptable range. More tests are ongoing...

Hopefully it'll be OK for both of us!!

Thanks, Sasha.

I'm wondering if maybe this is just a really common thing with MtF patients?  We know our brains are a bit different, and perhaps this is just another common variation.  I mean, how many men are ever tested for prolactin without symptoms?  Yes, the level gets checked when a pituitary problem like double vision from pressure, or erectile dysfunction crops up, but the levels there are sky high. 

For this level, it might be a tiny prolactinoma or overactive pituitary, either of which should be easily treated with a drug to tweak dopamine levels seen by the pituitary.  And I've never heard of a doctor turning off a ciswoman's estrogen to treat high prolactin levels, so I'm a little annoyed at being put on hold.
Earth my body, water my blood, air my breath and fire my spirit.

My personal transition path included medical changes.  The path others take may require no medical intervention, or different care.  We each find our own path. I provide these dates for the curious.
Electrolysis - Hours in The Chair: 238 (8.5 were preparing for GCS, five clearings); On estradiol patch June 2016; Full-time Oct 22, 2016; GCS Oct 20, 2017; FFS Aug 28, 2018; Stage 2 labiaplasty revision and BA Feb 26, 2019
Michelle's personal blog and biography
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mmmmm

How was blood sample taken? Taken just once, or did they take 4 samples during 45 minutes, or hour, in 15 minutes intervals while you lay and rest on the bed?
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Michelle_P

Quote from: alex82 on June 14, 2016, 01:02:25 PM
Good - keep pushing through. Yep - one damn thing after another.

I find electrolysis so boring - I've just returned from another one - it wouldn't be so bad if you could read a magazine or a newspaper or anything. I looked at a place in Belgium that does 8 hour sessions for 4 days straight. I'm seriously considering it.

Woof!  That'll clear a crop of hair!  I'd just be worried about looking like a cute gorilla for days after that much plucking.  I've thought about it, too.  We have Electrolysis 3000 in Texas (Texas!), and a place in Chicago that do that sort of treatment.  It's a bit far for me to travel, though.  If there was one in San Francisco I might think about it.  (And why isn't there one in SF?  There's a huge community of Us in the region.)
Earth my body, water my blood, air my breath and fire my spirit.

My personal transition path included medical changes.  The path others take may require no medical intervention, or different care.  We each find our own path. I provide these dates for the curious.
Electrolysis - Hours in The Chair: 238 (8.5 were preparing for GCS, five clearings); On estradiol patch June 2016; Full-time Oct 22, 2016; GCS Oct 20, 2017; FFS Aug 28, 2018; Stage 2 labiaplasty revision and BA Feb 26, 2019
Michelle's personal blog and biography
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Michelle_P

Quote from: mmmmm on June 14, 2016, 01:07:50 PM
How was blood sample taken? Taken just once, or did they take 4 samples during 45 minutes, or hour, in 15 minutes intervals while you lay and rest on the bed?

No, this is Kaiser.  Take a number, when it is called, show your card and photo ID (*SNORT*); take yer tags, sit in Chair 5; "I'm a student, mind if I draw your blood?"; *POKE*; done.

It probably didn't help, that's for sure.
Earth my body, water my blood, air my breath and fire my spirit.

My personal transition path included medical changes.  The path others take may require no medical intervention, or different care.  We each find our own path. I provide these dates for the curious.
Electrolysis - Hours in The Chair: 238 (8.5 were preparing for GCS, five clearings); On estradiol patch June 2016; Full-time Oct 22, 2016; GCS Oct 20, 2017; FFS Aug 28, 2018; Stage 2 labiaplasty revision and BA Feb 26, 2019
Michelle's personal blog and biography
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mmmmm

Quote from: Michelle_P on June 14, 2016, 01:12:50 PM
No, this is Kaiser.  Take a number, when it is called, show your card and photo ID (*SNORT*); take yer tags, sit in Chair 5; "I'm a student, mind if I draw your blood?"; *POKE*; done.

It probably didn't help, that's for sure.

Ok. This is completely useless way to measure prolactine levels. Prolactine samples must be taken while you rest, preferably lay down, in 15 minutes intervals. First measurement is ALWAYS incorrect and irrelevant. Prolacin level is artificially raised by stress levels, like fear of needles can push it 5 times above actual levels, and even standing (or sitting) in the line to give blood sample, will show way to high results. If taken correclty, it would show decline of levels, from the first blood sample, to second, to third and fourth, and based on the curve, they can actually see if the levels at third and fourth sample are about the same (or still falling). If there wasnt much difference between third and fourth levels, this means that fourth level should be very close to correct measurement, and its the one that counts. If the curve would still fall, this would mean irrelevant reading, and the longer test should be repeated, this time with 8 blood samples, in 15 minute intervals.

They way your blood sample was taken, its completely irrelevant what the number is, because it doesnt tell anything about your actual prolactine levels.


Prolactinoma isnt common. The indication for prolactionoma would likely show levels 10 times higher (or even more) than the max. average range. Even then, its not necessarily prolactinoma. If (actual) levels would indicate possibility, you would need MRI scans to confirm it.

If you ask me (Im not your doctor...), you can freely continue to take estrogen until you actually get proper prolactine tests done.
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alex82

Quote from: Michelle_P on June 14, 2016, 01:08:10 PM
Woof!  That'll clear a crop of hair!  I'd just be worried about looking like a cute gorilla for days after that much plucking.  I've thought about it, too.  We have Electrolysis 3000 in Texas (Texas!), and a place in Chicago that do that sort of treatment.  It's a bit far for me to travel, though.  If there was one in San Francisco I might think about it.  (And why isn't there one in SF?  There's a huge community of Us in the region.)

I saw the one in Texas - I looked at their website at the weekend.

Can you imagine how raw you'd be after such a marathon! But it might be worth it. It's something I'm keeping in mind. I contacted the Belgian place. It's in Antwerp - which I love, but for this I wouldn't really be able to go out and explore, or sit on a sunny terrace in the evenings. Well I could - with a very red, swollen face.

It's only a couple of hours on the train, but I'd rather fly - make it more of an event, and crucially, put some quick distance behind myself and the venue afterwards.

Why can't they just invent a pill that makes everything apart from the hair on your head, your eyebrows, and eyelashes just fall out!
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Michelle_P

Quote from: mmmmm on June 14, 2016, 01:33:03 PM
They way your blood sample was taken, its completely irrelevant what the number is, because it doesnt tell anything about your actual prolactine levels.


Prolactinoma isnt common. The indication for prolactionoma would likely show levels 10 times higher (or even more) than the max. average range. Even then, its not necessarily prolactinoma. If (actual) levels would indicate possibility, you would need MRI scans to confirm it.

If you ask me (Im not your doctor...), you can freely continue to take estrogen until you actually get proper prolactine tests done.

Yah.  After I looked at all the possible things that could affect the test (How well did you sleep?  How many hours since you woke?  Feel any stress? :P ), I concluded that this wasn't much more than a screening test and not really reliable.  It makes a great gatekeeper, though.

I'll probably have to get a referral to the Multispecialty Transition Clinic that Kaiser operates to gain access to an endocrinologist with experience in older MtF transgender patients.  I may be the oldest transwoman this endocrinologist has ever seen at the ripe age of 62.
Earth my body, water my blood, air my breath and fire my spirit.

My personal transition path included medical changes.  The path others take may require no medical intervention, or different care.  We each find our own path. I provide these dates for the curious.
Electrolysis - Hours in The Chair: 238 (8.5 were preparing for GCS, five clearings); On estradiol patch June 2016; Full-time Oct 22, 2016; GCS Oct 20, 2017; FFS Aug 28, 2018; Stage 2 labiaplasty revision and BA Feb 26, 2019
Michelle's personal blog and biography
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KayXo

Ann Endocrinol (Paris). 2007 Jun;68(2-3):106-12.

"In women with microadenomas, pregnancy generally has little impact on their adenoma, delivery is normal and breast-feeding is allowed."

Pregnancy and breast-feeding are times when prolactin levels are VERY high, in the upper double digit range and up to 600 ng/ml during pregnancy.  Estrogen levels are also very high during pregnancy (especially mid and late), way above what we could ever experience.

"While the literature has little to say on this subject and provides no adverse information, professional experience suggests that this attitude should be amended and that women presenting microprolactinoma should be allowed to use current contraceptive pills"

J Clin Endocrinol Metab. 2007 Aug;92(8):2861-5.

"observational studies have shown that pregnancy has a favorable effect on the natural history of preexisting prolactinomas. Prolactin levels are lower after delivery than before conception and complete remission of hyperprolactinemia has been reported in 17–37% of women after pregnancy (19, 20). Changes in tumor vasculature resulting in pituitary necrosis, microinfarction, or hemorrhage have been suggested as potential mechanisms to explain how pregnancy might lead to normalization of prolactin (21)."

Growth Horm IGF Res. 2003 Aug;13 Suppl A:S38-44.

"A review summarized results of 16 series reported between 1979 and 1985 totaling 246 women with microadenomas and 91 women with macroadenomas who became pregnant [17]. Subsequently, three series totaling an additional 117 women with microadenomas and 60 women with macroadenomas have been reported [18], [19] and [20]. When these data are combined [17], [18], [19] and [20], only 5 of the 363 women (1.4%) with microadenomas had symptoms of tumor enlargement (headaches or visual disturbances or both) (Table 1). In no case was surgical intervention necessary."

in ciswomen, pregnancy is rarely (1-5 % of time) associated with symptoms that would suggest an enlargement of an already existing prolactinoma when the prolactinoma is small and this frequency of enlargement is estimated to not be different from what it would be, in the absence of pregnancy. Hence, the risk is negligible. This number, however, significantly increases to 20-40% when the prolactinoma is large. No studies have shown that pregnancy can cause a prolactinoma.

No prolactinoma has ever been observed in transsexual women taking only bio-identical estradiol and bio-identical progesterone. Most commonly, the use of cyproterone acetate has been associated with prolactinoma, other progestins and non bio-identical estrogen.
I am not a medical doctor, nor a scientist - opinions expressed by me on the subject of HRT are merely based on my own review of some of the scientific literature over the last decade or so, on anecdotal evidence from women in various discussion forums that I have come across, and my personal experience

On HRT since early 2004
Post-op since late 2005
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Michelle_P

Thanks, Kay.  The information will be useful at a future appointment.  The bio-identical estradiol never producing an observed prolactinoma is particularly interesting.  The non-bio identical versions of estradiol are looking more and more problematic to me.
Earth my body, water my blood, air my breath and fire my spirit.

My personal transition path included medical changes.  The path others take may require no medical intervention, or different care.  We each find our own path. I provide these dates for the curious.
Electrolysis - Hours in The Chair: 238 (8.5 were preparing for GCS, five clearings); On estradiol patch June 2016; Full-time Oct 22, 2016; GCS Oct 20, 2017; FFS Aug 28, 2018; Stage 2 labiaplasty revision and BA Feb 26, 2019
Michelle's personal blog and biography
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Michelle_P

Just an update:  I'ved got a telephone appointment with the endocrinologist for mid-July.  I expect there will be more tests, possibly an MRI (hitting max-out-of-pocket on the high deductible insurance.  Ouch.), and in a sane world, a prescription for a dopamine agonist, which seems to be the standard treatment whether or not something appears on the MRI.   I'm pretty sure ciswomen don't have to stop E while dealing with high prolactin.  ("Doctor, you're prescribing a hysterectomy for slightly high prolactin?")

With any luck I'll get my estradiol in a few months.  Meanwhile I AM still on the spironolactone, which I've been ramping up to the prescribed level while taking plenty of fluids, raising salt intake from 700 mg/day to 1400, and watching my blood pressure like a hawk.  I think I'm feeling the effects a little already.

So, I'm currently on track to transition to a frail eunuch with osteoporosis.  Yay me!  :)  It's a start.  (I'll need the estradiol eventually to maintain bone density, and shake the lethargic low-T feeling.)
Earth my body, water my blood, air my breath and fire my spirit.

My personal transition path included medical changes.  The path others take may require no medical intervention, or different care.  We each find our own path. I provide these dates for the curious.
Electrolysis - Hours in The Chair: 238 (8.5 were preparing for GCS, five clearings); On estradiol patch June 2016; Full-time Oct 22, 2016; GCS Oct 20, 2017; FFS Aug 28, 2018; Stage 2 labiaplasty revision and BA Feb 26, 2019
Michelle's personal blog and biography
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Dena

I suspect over time the lethargic feeling will fade. With what I know now, my estradiol levels have never been and still are not out of the male range and I lost my T source in 82. The last 10 years I was both T and E free.  I don't feel lethargic and in some ways, getting that dirty word T out of my system as allowed me to concentrate more. I think I have lost some physical stamina but that was to be expected once the T was gone.
Rebirth Date 1982 - PMs are welcome - Use [email]dena@susans.org[/email] or Discord if your unable to PM - Skype is available - My Transition
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Michelle_P

How about an update?  I can do that!

Yesterday, I got stomach cramps about a half hour into my daily exercise routine.  WTF?  I've never had that before.  They went away after half an hour, and I went about my day.  Then, during group therapy in the late afternoon, I got a series of fairly intense hot flashes.  Again, WTF?  I wonder if this is significant, as in "Congratulations! Your hormone levels are now so low we gonna celebrate with mock menopause!"

It was weird. It also hasn't repeated yet.

Meanwhile, I've still got that telephone appointment with the endocrinologist next week, to see what I can or should do next.   

Meanwhile meanwhile, I think I looked and sounded a bit distressed in group.  I was feeling miserable this morning about what I worried was my disintegrating marriage.  The wife doesn't want to talk or hear about any trans-related issues I am having, doesn't want to see me as myself, and is pretty much in denial.  When I'm at my most bummed out this morning, the phone rings.  My therapist had a cancellation and thought I could use an extra appointment early next week.  Yes, please!

Meanwhile meanwhile meanwhile, the wife comes home, and I start coming apart at the seams about myself, and she's actually sympathetic. Then the phone rings.  "Michelle?  This is the Multi-Specialty Transition Center". "We want to schedule a telephone session for you tomorrow to see about covering your electrolysis."  What!  OK, yes, please!

I'm already riding an emotional roller coaster without the estrogen!
Earth my body, water my blood, air my breath and fire my spirit.

My personal transition path included medical changes.  The path others take may require no medical intervention, or different care.  We each find our own path. I provide these dates for the curious.
Electrolysis - Hours in The Chair: 238 (8.5 were preparing for GCS, five clearings); On estradiol patch June 2016; Full-time Oct 22, 2016; GCS Oct 20, 2017; FFS Aug 28, 2018; Stage 2 labiaplasty revision and BA Feb 26, 2019
Michelle's personal blog and biography
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Michelle_P

Quote from: Michelle_P on July 07, 2016, 08:39:09 PM
  "Michelle?  This is the Multi-Specialty Transition Center". "We want to schedule a telephone session for you tomorrow to see about covering your electrolysis."  What!  OK, yes, please!

DEEEEECLINED!

Oops.  Silly me.  I failed to comply with the undisclosed secret rules.

Quote"You bumped into the ceiling which now has to be washed and sterilized, so you get nothing! You lose! Good day, sir!"
-- Willy Wonka

In order to get on HRT, They wanted to see signs that I was serious about moving forward, such as being on electrolysis.  Besides that, I HATE having a beard and shaving (dysphoria triggers...), and am prone to razor burn and ingrown hairs.  Before I started HRT, I wanted to get electrolysis rolling.  So, I did, and the areas where I used to get the most ingrown hairs are now nice and smooth.

But...  There's ALWAYS a but...

Getting electrolysis covered requires me to be on an androgen blocker at least 6 months.   The insurance folks think that might reduce hair growth to the point where I don't need electrolysis.  Maybe on a Tanner 2 14 year old, but on a 60-something?  Then, at the 6 month point, I'm to be evaluated by a dermatologist, just in case there's enough non-gray hair to make me a laser candidate.  (Nope!)

The thought has crossed my mind to stop all facial hair removal, including shaving, and show up as a mountain man with boobs...  I'd probably lose my mind before that point, though.  (Lemme check my pockets... I know it's here somewhere...)

Earth my body, water my blood, air my breath and fire my spirit.

My personal transition path included medical changes.  The path others take may require no medical intervention, or different care.  We each find our own path. I provide these dates for the curious.
Electrolysis - Hours in The Chair: 238 (8.5 were preparing for GCS, five clearings); On estradiol patch June 2016; Full-time Oct 22, 2016; GCS Oct 20, 2017; FFS Aug 28, 2018; Stage 2 labiaplasty revision and BA Feb 26, 2019
Michelle's personal blog and biography
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