Length of growth and pain

[bendo]

Hello everyone,

Last time I sent a message I was still under HCG treatment for fertility and nothing was happening in chest. To resume that treatment, it started itching a lot at 4 months. I was not able to sleep on belly, not able to run/jump, and I was shirtless all day (thanks for COVID period to stay at home). Hopefully, it ended with my treatment at 7 months. After that I got a surgery in tests (and its consequences...)

So during that treatment my ratio T/E was 15 but I think that my oestrogens were so high (68 Pg/mL) that it cannot prevent gynaecomastia to appear.

Now, I am at 3.10 ng/mL of testosterone and 29 pg/mL for oestrogens. My ratio is at 10.7 so perfect. But oestrogens have increased a little since last exam and with age testosterone will continue to decrease even If my BMI is at 20. And I have full KS 47 xxy. So all medics told me it will come again soon : around 40 years old.

So as I am 40 with very low testosterone, I think I am on the edge and I don't want hrt or surgery for that. To much consequences but I don't want either a non stop pain like I had during my treatment, so here are my questions:

1. How long does the initial growth last ? Is it 12 months or it never ends, which could be strange because it ends for women.

2. Is the final size linked to family history? In my family women have A or C cup so it should stop quickly, no ? And stay little I think. Some say it is smaller than women in the family. A or B cup could be hidden easily I think but not C cup...

3. At the beginning, is there a way to decrease the pain ? During my treatment I was thinking about a sport bra but I was not sure it could help as there was nothing to hold. It was nearly flat but there were still big glandular tissue (about 10 cm I think) inside preventing me to run. And I only had to "hold" 4 months of pain.

4. No more pain after the growth? Or not the same pain I suppose. For example, you can sleep on stomach again (for small size) ?

Sorry for the long post and thank you for your help. In resume, I can cope with it but only if it isn't great pain for life and easy to hide.

[Justagirl💃]

Hello everyone,

Last time I sent a message I was still under HCG treatment for fertility and nothing was happening in chest. To resume that treatment, it started itching a lot at 4 months. I was not able to sleep on belly, not able to run/jump, and I was shirtless all day (thanks for COVID period to stay at home). Hopefully, it ended with my treatment at 7 months. After that I got a surgery in tests (and its consequences...)

So during that treatment my ratio T/E was 15 but I think that my oestrogens were so high (68 Pg/mL) that it cannot prevent gynaecomastia to appear.

Now, I am at 3.10 ng/mL of testosterone and 29 pg/mL for oestrogens. My ratio is at 10.7 so perfect. But oestrogens have increased a little since last exam and with age testosterone will continue to decrease even If my BMI is at 20. And I have full KS 47 xxy. So all medics told me it will come again soon : around 40 years old.

So as I am 40 with very low testosterone, I think I am on the edge and I don't want hrt or surgery for that. To much consequences but I don't want either a non stop pain like I had during my treatment, so here are my questions:

1. How long does the initial growth last ? Is it 12 months or it never ends, which could be strange because it ends for women.

2. Is the final size linked to family history? In my family women have A or C cup so it should stop quickly, no ? And stay little I think. Some say it is smaller than women in the family. A or B cup could be hidden easily I think but not C cup...

3. At the beginning, is there a way to decrease the pain ? During my treatment I was thinking about a sport bra but I was not sure it could help as there was nothing to hold. It was nearly flat but there were still big glandular tissue (about 10 cm I think) inside preventing me to run. And I only had to "hold" 4 months of pain.

4. No more pain after the growth? Or not the same pain I suppose. For example, you can sleep on stomach again (for small size) ?

Sorry for the long post and thank you for your help. In resume, I can cope with it but only if it isn't great pain for life and easy to hide.

My mum was an A cup, but my fathers side had very endowed women. I ended up becoming a DDD. Yes, family history should have much to do with growth.

It's been since puberty that I started growing, but I have continued again through my 50's, so it seems growth occurs whenever conditions are right.

[bendo]

Thank you.

And at each growth is it as painful as the first (if you remember) and how long does it last ? A few days?

So for the size I can be sure of nothing... Great.....

And does someone remember how long the initial growth last? Because during my treatment it was 24 hours a day during 4 months. Like I said I knew there was a end but if you tell me there is no pause since your puberty... It is different!

[Justagirl💃]

And at each growth is it as painful as the first (if you remember) and how long does it last ? A few days?

Like I said I knew there was a end but if you tell me there is no pause since your puberty... It is different!

From what I remember, all growing spurts felt the same. The ones during puberty felt just like the spurts late in life. Usually from a few days to a few weeks (I am currently experiencing soreness and itching, and it's been about a week now). 

I have had MANY YEARS of pauses, but when conditions are just right the spurts can return.

Beyond that, our breasts change. Male or female, our breasts will slightly change every year. That is exactly the reason that it's recommended to have a fitting at least once a year.

[bendo]

OK, thanks. Now I just have to hope that my body produces enough testosterone so that it doesn't happen too soon, because with xxy, I'm not leaving with an advantage. I've come to the conclusion that it's impossible to predict and that I'll just have to see when the time comes, and hope it never does. All I can do now is keep my fingers crossed. And good luck on your side.

[bendo]

Yes that's exactly what I thought I would try for the exercise part. I heard about zinc also but for natural elements, the surgeon who did the surgery on my tests, said just before I fall asleep during my operation : "I will prescribe you testosterone". And he was surprised I refused. In my country they all say hrt, hrt, hrt. For them, it is working on the hormone problems but they don't care about secondary effects. I am happy that the doctor I see actually says I don't need hrt right now but he is part of team hrt. For now my best advantage is that I am slim (74-76 kg for 1m88) and it limits aromatase a lot.

So 5 months from small b to full b. The initial growth from flat to small b was longer I suppose? I am asking because in 7 months of HCG treatment I got glandular tissue of about 10 cm on each side but I was still flat, so I suppose the initial growth takes a lot of time. It is just to try to determine for myself the potential length (and pain) of this part.

[taxmapper]

Couple of things here Ill chime in on. 

first, breast growth in some and )it seems the number is growing) may not "stop" but continue in different phases and speeds throughout life. 
I have a friend who is the high "C" cup range that was a low A about 30 years ago. 
she is 60 now. 

Another was a full C cup in 2001 but is now more of a B cup due to some weight loss and other factors. its different for everyone. 

But I am also one who has noticed in modern times the focus is on a "medical" solution.  

Being one who studies in on esoteric and metaphysical studies, I can tell you that part of this is not a "medical" issue, it is a human experience one and one that should be embraced and treated not with a 'solution" but maintenance. 

A Birdie pointed out in another thread the conceptual idea (of what ever name or term used) is a hermaphrodite, the mixture of the human genome makes for an interesting mix.  Were so entrenched into this idea of a binary template that we want to "solve" a "problem" when its not a problem. 

Like any other aspect of the human machine again, should be "maintained" rather than "solved". 

To be honest and a bit blunt (and with all respect given) you may want to stop talking with that doctor and find another one. 
this is your choice, but I would recommend a female over a male.. 

Just sayin. 

[bendo]

I don't know if my endocrinologist care for my well being. He forgets everything. He says one thing then the opposite 6 months later just to say : "I was right...". For example he first told me that I was a rare case before my surgery because my T level was very high for KS. And he told me that the surgery won't make T level decrease. I believed him whereas all others were saying the opposite but as he is professor I thought he was right. 

After the surgery I lost 40% of my T level. When I told him it he said that it was not possible and that my T level were not at the level I was before. He even didn't want to look at the previous exams.... And he said: "whatever you are now at this level"...

I keep it just because he thinks I don't need hrt but he really should think of retirement (he is quite old).

The HCG treatment I had was given by a woman urologist. And before my treatment my T was high but my free T was very low. She said that I will need hrt after the surgery. It was 4 years ago and I am still ok.

The main difficulty is to find a specialist who really knows KS. Usually they are all specialists in thyroid but not in specificities of KS...

[Sophie]

There are many factors that come into play with breast growth. My mother wore a 36B .I was a 34C  when I was 16. With sister sizing, it is essentially the same cup size. However I was a 36D when I graduated high school. My grandmother was well endowed and so is my sister. We both are 36G/H in most of our bras.

There are genetic and or possible intersex components to consider as well as medications and different foods that can and do influence your breast development. 

I am grateful for what I was blessed with.  I would still prefer to be a D or DD. However it is nice to have them when I need them. 

♥️Sophie♥️

[Justagirl💃]

The main difficulty is to find a specialist who really knows KS. Usually they are all specialists in thyroid but not in specificities of KS...

It's quite apparent that there are no 'Intersex specialists' out there. 

My current doctor is no exception. 

He refers to my condition as a "deformity" rather than just my normal condition. My medical plan sees my "gendering" as being correct even though I never got the other appendage. 

Perhaps a younger physician is a better option as the stigma surrounded intersex is starting to crumble in recent years. The older doctors are still very much 'old school'. 

[bendo]

I don't consider myself as intersex but I see what you mean. As these situations are not "common" but not rare at the same time and without short fatal risks, there are not a lot of researches on this subject.

In France, when you are "normal" there are some medical studies on everything. When you have a rare genetic disease there are associations and organisations which are doing researches. There are several websites dedicated for each rare disease and it allows you to find the correct doctor. But when you have KS you are in none of these two groups and it is really difficult: there are no list of specialist on the subject and at the same time it is not enough common to be studied. 

[WPW717]

Medical mysteries abound!
Got my second more expansive genetic test information yesterday. Unexpected results, too. Clinically I am classified as MEN syndrome. Type was harder to identify for a bit as the early genetic test and expected results didn’t have the positive gene ( RET-1). A secondary more expansive testing was supposed to show a positive CKND-? gene to firmly place me in the Type 4 category. ( It’s new nomenclature for barely understood distinctions from type 1. Wasn’t there ! BUT , hey Bob, we did find another positive gene pathology ( CHEK -1). Its primary prediction purpose is for breast cancer.
Lifetime risk of breast cancer is between 20-44%. For women! Males are unknown as no one has ever studied the situation. 

They are leaving me in the type 1 classification as type 4 and one have nearly the same guidelines for treatment. They are scratching their heads as the clinical presentation is classic but no genetic testing shows the reason.

I feel there are occasional signs of growth that last for a few days. Mammograms have shown no signs of cancer but breasts are dense. Makes it hard to spot early disease.

Prolactin cranial tumor becoming active again post chemo ?

Surveillance protocols for CHEK gene are different from MEN Type 1 and 4 situation. I wonder how these facts will resolve with Medicare since they only will pay every 2 years for mammograms and who’s, this patient ? He is not a female! Oh , and he’s old!

More labs next month and then an Endocrinologist appointment. The saga continues…

Intersex, KS, estrogen dominance, M vs F, … I wonder where to place myself at times since becoming a eunuch last month.

I do feel fine despite it all , just a touch of arthritis . I shall endeavor to persevere as the saying goes.

[Justagirl💃]

"Intersex, KS, estrogen dominance, M vs F, … I wonder where to place myself at times since becoming a eunuch last month."

Yeah, it seems things change as more test results come in. In my case as well.

Intersex was known since birth, but puberty brought new horizons to the diagnosis. Much later Chromosomes testing and abdominal ultrasound found much much more (PMDS).

End results are...

We are exactly as we are born, nothing more and nothing less.
Once we accept that, it just boils down to accepting ourselves and staying as healthy as possible. 

Birdie 💖

[Johndoe1]

Breast cancer is a worry for me because it runs on the female side. My grandmother on my mother's side died of breast cancer. I have this nagging fear are my breasts trying to kill me. It's a fear many women have I have found. The farther along in this journey, I find my breasts are truly no different than any woman's breast. There's some comfort in that thought but also some interpretation. 

[WPW717]

Right there with you 
I got my genetic report back and a CHEK-1 gene is in disarray. 80% likely mutations can cause cancer. Primarily in the breasts, lifetime risk 20-44% for women & unknown for men, it had not been studied.
Well …. Jack Benny style!🤔