[demografx]

...I was addicted to having an orgasm after an orgasm...

Horrible feeling for me! Someone here (sorry forgot who) said it very well: " During early POIS, I still feel like I'm 'in sex' "

Sadly (it's not a good feeling), that rings true for me.

[demografx]

Forum tech disruptions

Everyone is frustrated, I've written complaints.

For now, hitting the "Refresh" button is all I can suggest! []

[Counterpoints]

Tarkington, I'm really interested in any other changes you may have made and have continued, within months of when you started taking relora. e.g. exercise, diet, etc.  Also, it would be helpful to know the specifics of your condition (symptoms, how long you've had it, etc.), if you are willing to share this information.  Did you get my private message?

[rock27]

Tip to all readers:
If you click on the person's name (for example Tarkington) and then click 'read last posts of this person' you can read many messages this person has posted.

I did this with Tarkington and it is amazing; I read this forum everyday and still there were many posts I couldn't remember having read them.

I was struck Tarkinton did have so much in common with my case; the feeling at the start of pois, the insomnia, the not having hunger the next day. So, I have ordered Relora as well. Tarkington on your site it is mentioned twice (one 7 dollar and one for 6 dollar; I can't see the difference; anyway I took your type (7). I also ordered at a Dutch site, so can report on that later as well.

Technical problems: have not encountered them yet here in Holland. I have made a full back-up of this forum. If anything happens to the site Demo, you have my e-mail so we can put it back up then.

[Limejuice]

Blood Test Results:

An endocrine revieled my blood work results:

Testosterone - Normal
Prolactin - Normal
TSH - Moderately high 5.9

I showed her the POIS study and asked her for other possible ideas what is causing POIS.  She only recommended me to another doctor, "you've exhusted endocrine, check with a urologist."

[girlwind]

Blood Test Results:

An endocrine revieled my blood work results:

Testosterone - Normal
Prolactin - Normal
TSH - Moderately high 5.9

I showed her the POIS study and asked her for other possible ideas what is causing POIS.  She only recommended me to another doctor, "you've
exhusted endocrine, check with a urologist."

Wow! That is a really high TSH. I have read that "Recommendations from the American Association of Clinical
Endocrinologists now encourage doctors to consider treatment for patients who test outside a narrower normal
range of .3 to 3.0." (SOURCE: Mary Shomon--Living Well With Hypothyroidism) Some thyroid doctors draw the line
at 2.0, and one doctor (Bruce Rind) has found the "optimal range" of his healthiest patients to be btwn 1.3--1.8.

You might want to get a Free T3, Free T4, TPO and Reverse T3 to check out any potential thyroid issues. I had no idea
that I had a thyroid problem until I had all those tests, and now FINALLY I know. After 30 years of being left UN-diagnosed.

[underwater]

Observation Re: POIS Symptoms
I have been thinking that isolating "predominant-primary" symptoms of POIS may be much more important than I first thought. From my reading now for many weeks, it appears that extreme exhaustion and a breakdown in concentration are at least two of these. For some of us however, orgasm may trigger a different group of "primary" symptoms, thus suggesting that orgasm influences other related or independent disorders, without "lining up" with the "predominant-primary" symptoms of POIS. Therefore, the focus of solutions may vary. Perhaps some sufferers need hormone therapy; others neurotransmitter intervention; others adrenal strengthening; others diet & exercise; others psychological assistance; others spiritual focus; others a combination.
In my view, POIS remains an apt description but perhaps with a broader understanding. 

[underwater]

Thank you Girlwind and Demo and others I haven't noticed (my apologies for any omissions) for sharing your expensive and time consuming lab results with us. I spent my money on spinal therapy, because my lower back ties in to my POIS and GAD. That is a long story. I'd share results, but they are inconclusive; except to say that spinal stimulation definitely helps me across the board. I'm still waiting for my GAD to be finally gone, but the fiend still lingers.

[demografx]

Technical problems: have not encountered them yet here in Holland. I have made a full back-up of this forum. If anything happens to the site Demo, you have my e-mail so we can put it back up then.

Rock, you are a Wizard! I really appreciate your generous time backing this up. The problems now are minor and weird, but hopefully nothing will crash.

[demografx]

I'm still waiting for my GAD to be finally gone, but the fiend still lingers.

I wish the GAD-Fiend a swift death, Underwater! []

[demografx]

Blood Test Results:

An endocrine test revealed my blood work results:

Testosterone - Normal
Prolactin - Normal
TSH - Moderately high 5.9

I showed her the POIS study and asked her for other possible ideas what is causing POIS.  She only recommended me to another doctor, "you've exhusted endocrine, check with a urologist."

What nonsense! Limejuice, her reaction didn't feel right to me. At all! She didn't have a recommended "next step" for high TSH??

I had no luck with several top urologists in a major city. I would try another endocrinologist and ask for more extensive tests. Email them Waldinger's paper, then ask "Think you can help?" Go with the endo with the most positive and logical answer. I know it's work, but worth it. Or ask a physician you trust to recommend one. My Harvard biophysics friend recommends that we try local university medical group endo's.

Low Testosterone (my previous urologists only looked at a crude measure of testosterone and said I was ok!) + Very High prolactin were MAJOR findings for me.

I'm now on testosterone patches and feel much better mood-wise (which 2 other physicians confirmed can be expected) just as a side benefit! I will soon re-test all of this PLUS CORTISOL:

MY ENDOCRINOLOGIST'S LABWORK ORDERED FOR POIS

Counterpoints asked which blood tests were ordered after my POIS evaluation appointment, so they are listed below. I just now got the list, and was dismayed that CORTISOL was not listed. So I asked the endocrinologist if it could yet be included with today's creatinine blood test (kidney function). Creatinine test is required for pre-MRI injection so MRI results can be shown "with and without contrast".

Out of reference range
-PROLACTIN

Extremely high (reason for MRI of the pituitary gland this week)

-TESTOSTERONE(Bioavailable Testosterone, Free Testosterone, Total Testosterone, Sex Hormone Globulin Binding)

"Free T" is low; others I don't have reference range on summary.

In reference range
-DHEA-SULFATE

-FSH (Follicle Stimulating Hormone)

-LH (Luteinizing Hormone)

-TSH (Thyroid-Stimulating Hormone)
Well, let's see where this goes. I'm happy that this doctor is taking POIS seriously. This is what he decided after listening to my discussion about this forum, seeing Dr Waldinger's paper, and asking detailed questions about my medical history.

I didn't want to push specific testing requests any further than this. I'm not the doctor.

[Counterpoints]

Limejuice,
You should look for an endocrinologist who has a hospital affiliation, or is known to do some research and reading.  A lot of endos (and physicians for that matter) are closed minded, and aren't intellectuals -- if something isn't very basic, they pass it on to someone else. But there are exceptions, and if you ask around, you will find the right person.  When you are introducing the problem to an endocrinologist, it would be worth mentioning that you have corresponded with someone who has almost an identical problem, and who was helped by an endocrinologist.

I have found an endocrinologist who focuses on adrenal problems, and is an academic.  Hopefully I will have some luck!  And I wish you luck in your search.

[Limejuice]

Thanks for the concern and recommendation girlwind, demo, counterpoints, and others.  The endo did prescribe 50mgs of synthroid to treat the thyriod BUT as y'all know it's not the thyriod that really bothers me.

Time to look around.

[girlwind]

Limejuice--I would not underestimate the effect that low thyroid can have on POIS symptoms. I have definitely seen
improvement in both my POIS and CFS since I began addressing my hypothyroidism. Also, you should know there is
A LOT of controversy among both thyroid patients and expert thyroid doctors regarding the Synthroid medication--
which is a synthetic T4 ONLY thyroid remedy. Many patients have found they do better with Armour thyroid, which is
a natural thyroid remedy that's been around for a hundred years (made from pig thyroid), as it contains BOTH T4 and
T3. It all depends on where your thyroid deficiency lies. That's why it would be a good idea to have more extensive
blood tests done:  the Free T3, Free T4 and TPO (for thyroid antibodies), and Reverse T3. You'll get a much
more complete picture with a combo of all those tests.


PS  I've beeen trying to add some articles for you, but each time I do, what I've previously written prior gets erased. So
I just have these two for now. You might also check out Mary Shomon's website--she is the author of one of the best
books that I've read on thyroid--Living Well With Hypothyroidism.

http://www.thyroid-info.com/articles/mercola.htm
http://www.thyroid-info.com/articles/brownstein-hormones.htm

[msl]

Hi guys, its been a while. For some reason I don't know where to place POIS anymore :S I have seen numerous doctors, an erectile dysfunction doctor and have been taking prozac for 1 or 2 years now to reduce the frequency of nocturnal emissions. After the erectile dysfunction consultant was unable to help, he referred me to a neurologist and a sexual psychotherapist.. yet the appointment letter has been lying on my desk for weeks now :/ months ago I would have lept at the oppertunity, but now I can't shake the thought "is this all in my head?" What do you guys think?

[underwater]

Hi guys, its been a while. For some reason I don't know where to place POIS anymore :S I have seen numerous doctors, an erectile dysfunction doctor and have been taking prozac for 1 or 2 years now to reduce the frequency of nocturnal emissions. After the erectile dysfunction consultant was unable to help, he referred me to a neurologist and a sexual psychotherapist.. yet the appointment letter has been lying on my desk for weeks now :/ months ago I would have lept at the oppertunity, but now I can't shake the thought "is this all in my head?" What do you guys think?

I don't think it's all in your head. There are real symptoms responding to the trigger of orgasm. Everybody is different, so just like any disorder, each person has a unique set of responses. Some people may find they have a similar cluster of symptoms, others more random. It seems like this disorder is rare, and since it involves sex and orgasm, its not the most comfortable subject. There is no way we can avoid at least considering psychological conditions, because these may play a part. But as far as I can see, even if there are psychological components to POIS, there are real, biochemical and nervous system events taking place after orgasm. POIS must take place (logically) in the context of our whole, unique physiology, yet it clearly has a direct connection to sex, orgasm and "recovery" and, ipso facto, our mind too! Who in this forum can take their mind off of "sex/orgasm"? I bet that most sufferers here are "by nature" very sexual beings. We don't really discuss this much, but if it's true, it has to play at least some part in this condition.
 

[demografx]

I have found an endocrinologist who focuses on adrenal problems, and is an academic.  Hopefully I will have some luck!

Counterpoints, sounds promising. Good luck!

[demografx]

I can't shake the thought "is [POIS] all in my head?" What do you guys think?

Rapidgaming, good news! Reuniting posted the following New York Times (credible publication!) article by a NYC PSYCHIATRIST who says "it's NOT all in your head"!

"Sex and Depression: In the Brain, if Not the Mind"

http://www.nytimes.com/2009/01/20/health/views/20mind.html

[demografx]

Hi guys, its been a while. For some reason I don't know where to place POIS anymore :S I have seen numerous doctors, an erectile dysfunction doctor and have been taking prozac for 1 or 2 years now to reduce the frequency of nocturnal emissions. After the erectile dysfunction consultant was unable to help, he referred me to a neurologist and a sexual psychotherapist.. yet the appointment letter has been lying on my desk for weeks now :/ months ago I would have lept at the oppertunity, but now I can't shake the thought "is this all in my head?" What do you guys think?

Rapidgaming, Some of us are now leaning towards seeing an endocrinologist. Girlwind, Counterpoints, myself, maybe more.

The co-author of Dr Waldinger's original POIS study is an endocrinologist, so that helps establish credibility when you see him/her. If you don't have it already give Pyropeach your regular email address and ask for the PDF!

[Counterpoints]

rapidgaming: I would see the neurologist you were referred to.  Mention that someone with this problem was found to have adrenalcortical carcinoma, and that another was found to have an empty sellum.  Say that those who have seen physicians who took the condition seriously, and followed up, have identified problems associated with the condition. (e.g. an empty sellum can affect cortisol and prolactin levels).  The neurologist would be able to advise you.  I would also look for an endocrinologist.

It also wouldn't hurt to hear the sexual psychotherapist out. He or she might have some really good advice.