Adult Onset Gyne - How long does the tenderness/pain last?

[fguss01]

Hi all,

I know that we are all different but just looking to get some sort of idea on timeline regarding the "florid phase" of Gyne.

I am on Tamoxifen for a month now and the pain is better than it was but if I try and swim I get a flare up of pain for a couple of days which tells me that I am still in the phase where pain will be a problem when I stop the Tamoxifen. Also any repeated rubbing of cloth over the nipple also generates pretty bad pain so hiking is hard right now too.

So - any examples out there that may help me - months? years?

Thanks as always.

[xelnaga13]

If you are still in pain your gyno is not stable and is continuing to receive hormonal stimulation. The exception would be pain caused by constant squeezing and touching of the area.

Is it continuing to grow? Have you been to an endo and had a complete hormone panel?

If estrogen is too high, no amount of nolvadex will prevent the estrogen from latching onto breast tissue.

Typically pain subsides after a few days of nolva or anti estrogen therapy.

[Paa_Paw]

A very snug undershirt like underarmor (or even an athletic Bra depending on the size of your breasts) will prevent the rubbing of clothes that is irritating you.

DO NOT use any kind of tape, plasters, bandaids and etc. Just trust me on this, never put tape on your nipples. BAAAAD NEWS.

[HellandBack]

If you are still in pain your gyno is not stable and is continuing to receive hormonal stimulation. The exception would be pain caused by constant squeezing and touching of the area.

Is it continuing to grow? Have you been to an endo and had a complete hormone panel?

If estrogen is too high, no amount of nolvadex will prevent the estrogen from latching onto breast tissue.

Typically pain subsides after a few days of nolva or anti estrogen therapy.

Does pain subside and stay gone?

[xelnaga13]

If you are still in pain your gyno is not stable and is continuing to receive hormonal stimulation. The exception would be pain caused by constant squeezing and touching of the area.

Is it continuing to grow? Have you been to an endo and had a complete hormone panel?

If estrogen is too high, no amount of nolvadex will prevent the estrogen from latching onto breast tissue.

Typically pain subsides after a few days of nolva or anti estrogen therapy.

Does pain subside and stay gone?

Only if the underlying cause for the pain is gone. That's why it's essential to get an endo on board for the long road ahead. There are many causes for hormonal imbalances.

[fguss01]

If you are still in pain your gyno is not stable and is continuing to receive hormonal stimulation. The exception would be pain caused by constant squeezing and touching of the area.

Is it continuing to grow? Have you been to an endo and had a complete hormone panel?

If estrogen is too high, no amount of nolvadex will prevent the estrogen from latching onto breast tissue.

Typically pain subsides after a few days of nolva or anti estrogen therapy.

Hi, sorry for the delay, I missed this response. I am awaiting the second round of bloods done by a second endo - see him again next week. My E2 is at the upper end of normal at ~40 which it has been at consistently for a few months now - the endo does not seem to see this as an issue in itself, now that he has ruled out all the possible sinister causes of high E, and as I am not off the charts and may not be willing to treat me for this specifically. He seems more likely to let my body reach its own equilibrium and then advise Surgery if I am unhappy with the Gyne at that time Thoughts?

[xelnaga13]

If you are still in pain your gyno is not stable and is continuing to receive hormonal stimulation. The exception would be pain caused by constant squeezing and touching of the area.

Is it continuing to grow? Have you been to an endo and had a complete hormone panel?

If estrogen is too high, no amount of nolvadex will prevent the estrogen from latching onto breast tissue.

Typically pain subsides after a few days of nolva or anti estrogen therapy.

Hi, sorry for the delay, I missed this response. I am awaiting the second round of bloods done by a second endo - see him again next week. My E2 is at the upper end of normal at ~40 which it has been at consistently for a few months now - the endo does not seem to see this as an issue in itself, now that he has ruled out all the possible sinister causes of high E, and as I am not off the charts and may not be willing to treat me for this specifically. He seems more likely to let my body reach its own equilibrium and then advise Surgery if I am unhappy with the Gyne at that time Thoughts?

I would be interested in knowing your testosterone total and free testosterone. A 40 estro is not an issue if testosterone total/free are at healthy levels. If the ratios are off, it may allow estro to become to dominant player.

[fguss01]

I should know more on this next week, he has commisioned lots of tests including E2, Total Test, SHBG, DHEAS and a load of Ferritin, Serum Iron, Iron Binding Capacity, CRP and other ones  I have never heard of.

I am hoping that there will be some rationale behind whats going on, the bloods were taken after 3 weeks on Tamox so he will have to interpret the results somewhat as I think Tamox increases Total Test, E2 and SHBG.

Will post back once i have seen the endo next week.

Also will have another USS done next week, the previous ultrasound showed no sub-areolar ductal tissue - confusing since I have slowly developing breasts - maybe the Tamox is doing enough to slow the ductal development but not enough to arrest the development of surrounding fat? - who knows?

[fguss01]

So, had some of my own bloods done prior to seeing the endo tomorrow.

After five weeks on Tamoxifen @ 20mg pd

Albumin = 41
SHBG = 62.8 nmol/l
Estradiol = 99 pmol/l
Total Test = 645 ng/dl

Using a free Test calculator yields 9.27 ng/dl

So to me the free test looks low?

Also E2 is lower than a few weeks ago (it was at ~150) which surprises me since I thought that Tamoxifen had the effect of raising both Test and E2 through blocking E2 at the HPT axis as well as in breast tissue.

Now very confused......comments?

[xelnaga13]

So, had some of my own bloods done prior to seeing the endo tomorrow.

After five weeks on Tamoxifen @ 20mg pd

Albumin = 41
SHBG = 62.8 nmol/l
Estradiol = 99 pmol/l
Total Test = 645 ng/dl

Using a free Test calculator yields 9.27 ng/dl

So to me the free test looks low?

Also E2 is lower than a few weeks ago (it was at ~150) which surprises me since I thought that Tamoxifen had the effect of raising both Test and E2 through blocking E2 at the HPT axis as well as in breast tissue.

Now very confused......comments?

Hey bro. Can you please provide the results from both panels? Also we need the ranges along side your numbers.

[xelnaga13]

Your SHBG is rather high. That accounts for low free test and as a result lower E2.

Something caused your SHBG to spike. Are you on any other medications? 

[fguss01]

Hi, thanks for the responses,

The results with ranges are:

Albumin - 41g/l (range 34-54g/l)
Serum Testosterone - 22.4 nmol/l (range 10-40 nmol/l) = 635 ng/dl
Estradiol - 99 pmol/l (range 10-150 pmol/l) = 27 ng/dl
SHBG - 62.8 nmol/l (range 13.2-80 nmol/l)
Free Test - 9.27 ng/dl (1.44% of total)

I am no other meds aside from the Tamoxifen - the results before I started on the Tamox were;

Testosterone - 22.7 nmol/l
Estradiol - 151 pmol/l

So 5 weeks into the Tamox I have similar Test and lower E2 - E2 could be explained by diet - been eating lots of anti-estro food the past month but I would have expected a peak in the Test due to the Tamox inhibiting the E2 at the Hypothalamus and therefore boosting LH and therefore serum Testosterone?

Dont know what the SHBG was pre-Tamox as it was not measured by the first endo.

Thanks in advance for any inputs....more endo results tomorrow eve......

[xelnaga13]

Hmm. Other than your free test being slightly out of range ( low end) everything looks good. Certainly no smoking gun as to the cause of your gyno flare.

One interesting thought I had in regard to your E2 (purely novice speculation). Going from 150 to 99 is a significant drop. Maybe more than diet could possibly explain. It's possible that those numbers signify a downward trend. It could be for some unknown cause your estrogen spiked and built up... Now your body is slowly filtering it out. What if your E2 spiked at 200, then you had blood done a few weeks later it was at 150, then a few weeks later it was 99. Just a thought.

[fguss01]

So, saw the 2nd opinion endo on Tues eve, summary below;

All bloods from 3 weeks ago in normal range (Test and E2 virtually identical to the latest figures above taken last week) except for SHBG which 3 weeks ago was 75 (out of range but did not get the range from the endo) - it is now 62.8

2nd opinion endo thinks that high SHBG is now due to Tamoxifen and that I should stop the Tamox after 6 weeks.

Ultrasound on Tues shows no evidence of sub-areolar glandular tissue but nipples still sore and sensitive especially LHS and no reduction in fatty/fibrous breast tissue.

Seeing my regular endo tonight to get his view, will then decide whether to carry on with the Tamox - still getting a lot of underarm "heat" which the 2nd opinion endo thinks is the Tamox rather than hormonal stimulation of the Gyne. 2nd opinion endo is pretty learned guy with many published books and articles - even he admits that they still dont fully understand all the effects that Tamox has both anti and pro-estrogenic......

Also LH and FSH measured 3 weeks ago are virtually the same as pre-Tamoxifen which he could not explain since if the Tamoxifen were doing its job at the Hypothalamus (inhibiting the Estrogen feedback loop) then the LH/FSH/Test and E2 should have all ramped up by a significant %...

[fguss01]

Correction to the post above now I have the printouts - LH and FSH are elevated due to Tamox -ve estrogen feedback at Hypothalamus but overall Test only slightly elevated. SHBG was 75 on an assay scale of 10-50 so somewhat high.

My original endo has recommended that I stay on the Tamox for another 6 weeks and then come off it and see what happens - I have no detectable glandular tissue via Ultrasound and he hopes that I will not get a re-growth of this although obviously he cannot know - his rationale is that if whatever caused the Gyne is going to settle on it's own then it should settle within 3 months. If the underlying driver is still there then I either have the choice of trying AIs or letting the Gyne develope and see where we get.

Thanks as always for the support and advice of this group.

PS - I have a had a recurrence of chronic nausea this past few days that plagued me for around a year prior to the Gyne which has acted as a timely reminder that although Gyne is a real mindbending condition, it is only that - physically there are actually far worse things.....just my 2c