[demografx]

UNIVERSITY ENDOCRINOLOGIST

My appointment today went well, it exceeded my expectations. Thanks to everyone for their well wishes and especially to Girlwind for her advice on my preparation, which came in very handy.

I also agree with Girlwind's premise that someone can have fantastic, impeccable medical credentials, but what kind of human being is s/he? As it turned out, I lucked out in both departments (as far as first impressions go, of course). We also had a few things in common, which helped the "schmoozing" factor.

He took a definite interest in Dr Waldinger's POIS study (I handed him a copy) and also our POIS forum and its hard experiences. That was greatly encouraging. But keep in mind that my primary objective was to get his help - for me - as a patient, and then, only if comfortable, to see what I can pursue to possibly get his help for the forum, if and as the relationship progresses. The two objectives intermingled nicely this afternoon.

He was comfortable with the concept of POIS and the medical/therapeutic fools that I - and other forum members - had to suffer over the years. He asked questions about my sexual history, medical history, POIS history, lab tests (I brought him standard lab results and a typed list of meds which Girlwind suggested. I even impressed the nurse!). He asked about the forum's POIS experiences with masturbation vs. intercourse. I said there was no difference that I could see. He wanted to know if there was "a female variable" for men []. I added that NE also causes POIS. Again, the prime focus was my symptoms, not the forum's, so I didn't go into NE differences, such as John21 reports (better garlic results). I mentioned theories regarding oxytocin, cortisol, nitrous oxide, prolactin and "more". I also mentioned experiments with Levitra, relora, fenugreek, maca, and "more". At this point he was more interested in getting on with the labwork, as Girlwind warned. So I didn't scream theories and experiments at him even louder [].

OK.....For a POIS forum research study: he suggested I contact his colleague, with permission to use his good name, and he gave me his colleague's email address and directline phone! I asked if his colleague could help find funding. He quickly said to me:

"He gets grants." (in an emphatic inflection that implied 'yes, bigtime')

Very nice! I will contact his colleague asap.

To give you an idea of their size, just one of their medical research facilities is a fairly new $1.5 billion complex.

A question for us from the Dr.: "Does anyone have experience with tricyclic antidepressants, such as Tofranil, and POIS?"

He also wished to convey to the forum that beta-blockers may help POIS, but can also cause ED.

Blood tests were immediately ordered this afternoon, and will include most of everything that we discussed here, DHEA-S, Cortisol, Free Testosterone, Prolactin, Thyroid (most of Girlwind's, Counterpoints and B_Jim's list), and others. If it's not 100% comprehensive, I'm not concerned right now. I just want to see how he operates.

Hypogonadism was placed in the chart as an initial blood-test study for the lab technicians (I didn't see POIS on the forms []). Results this Thursday, with follow up discussion the same day on the phone.

Well, as usual, I make no promises. To me or you. All I can do is try! Thanks again, everyone. The forum strengthened my ability to have a more successful POIS doctor visit than ever before.

[Whoa]

I'm also interested to know what body types do fellow sufferers of POIS have? Ectomorph, Mesomorph, Endomorph?

Personally, I'm on the ectomorph side.

[girlwind]

UNIVERSITY ENDOCRINOLOGIST

My appointment today went well, it exceeded my expectations. Thanks to everyone for their well wishes and especially to Girlwind for her advice on my preparation, which came in very handy.

I also agree with Girlwind's premise that someone can have fantastic, impeccable medical credentials, but what kind of human being is s/he? As it turned out, I lucked out in both departments (as far as first impressions go, of course). We also had a few things in common, which helped the "schmoozing" factor.

Wow-wee Zow-wee Demo! It sounds like you lucked out. It will be interesting to see what happens next...
And how all your blood tests pan out. And how the next visit goes. Congratulations!   [] [] []

[demografx]

Wow-wee Zow-wee Demo! It sounds like you lucked out. It will be interesting to see what happens next...
And how all your blood tests pan out. And how the next visit goes. Congratulations!   [] [] []

Thanks again, Girlwind!

[demografx]

All right, here is the questionnaire!
http://pois.olympe-network.com/

Many people in this community contributed, and Marnia of reuniting has generously agreed to take full responsibility.  Please direct questions to
reuniting at hotmail.com

Is Marnia still involved?

[Counterpoints]

You can PM me questions about the form too.  I don't know how often she answers that e-mail.  But yes.

[demografx]

Counterpoints' survey questionnaire

You can PM me questions about the form too.  I don't know how often she answers that e-mail.  But yes [Marnia of www.reuniting.info is involved].

Have there been any discussions of including our data in her published stuff? Newsletters? Books? Articles? Website?

The reason I ask is because as you yourself pointed out, there is no guaranteed protection of the data. But anything we can do to maintain "proprietary interest" I would think is desirable for all of us, so please don't accuse me of paranoia (again) []

Your unnecessarily combative fellow sufferer,
Demo

[demografx]

I'm also interested to know what body types do fellow sufferers of POIS have? Ectomorph, Mesomorph, Endomorph?

Personally, I'm on the ectomorph side.

Whoa: endo (leaning towards)

[demografx]

Barry, I assume your dermatitis is in-POIS only?

Yes, that's right. However I can trigger most POIS symptoms by repeated sleep deprivation and stress as well.

Barry, that triggering is interesting. Some of my symptoms are absolutely unique to my experiences. And I thought most other people's were too, but now I'm not sure.

[neilep]

UNIVERSITY ENDOCRINOLOGIST

My appointment today went well, it exceeded my expectations. Thanks to everyone for their well wishes and especially to Girlwind for her advice on my preparation, which came in very handy.

Well Done chum !!...thanks for the detailed post too !...and every thing you do here too !

[demografx]

UNIVERSITY ENDOCRINOLOGIST

My appointment today went well, it exceeded my expectations. Thanks to everyone for their well wishes and especially to Girlwind for her advice on my preparation, which came in very handy.

Well Done chum !!...thanks for the detailed post too !...and every thing you do here too !

Neil, many thanks! Your continued interest in the forum is greatly appreciated!

[Counterpoints]

Counterpoints' survey questionnaire

You can PM me questions about the form too.  I don't know how often she answers that e-mail.  But yes [Marnia of www.reuniting.info is involved].

Have there been any discussions of including our data in her published stuff? Newsletters? Books? Articles? Website?

The reason I ask is because as you yourself pointed out, there is no guaranteed protection of the data. But anything we can do to maintain "proprietary interest" I would think is desirable for all of us, so please don't accuse me of paranoia (again) []

Your unnecessarily combative fellow sufferer,
Demo

She hasn't published anything in the questionnaire responses, as far as I know.  But anything you, or others, post in this very thread is publishable, by her, or by anyone.  The same goes for the questionnaire responses.  For specific inquiries like this, I suggest contacting her directly.  I can't guarantee the responses will be kept private, just like no-one would guarantee that the posts made in this thread will be kept private; after all, the intent of this questionnaire is to express our problem to researchers -- so by its very nature it is not private.  However, I don't think there is reason for concern. The initial intent of the questionnaire was to address the issue that this thread is very long and disorganized -- something several people expressed when it was merely 27 pages long.  It is very unlikely any physician would read through any decent portion of it.  It is meant to reorganize information, which may already be available (although it may be scattered across many posts in a 100 page thread), in a way that we can make progress towards a real scientific study.

It's not something that worries me, but feel free to ask her about it.  PM (reuniting) or e-mail, or through her site, are probably the best ways to reach her.

[demografx]

Thanks, CP. But wouldn't a researcher(s) typically devise their own questionnaire for a study?

[Counterpoints]

Thanks, CP. But wouldn't a researcher(s) typically devise their own questionnaire for a study?

An MD PhD researcher sent me some of his questions.  Many similar questions were included in the questionnaire.  Also, as Chris (of Naked Scientists) said in an early letter you posted, we often need to do such preliminary research before someone else would want to take on a project like this.  This is the data that we would give a researcher when introducing the problem.  I share Chris' opinion that this is an extremely important part of receiving help. Note: An MD PhD, a neurologist/psychiatrist, and a reputable psychologist, are amongst those who have reviewed the questions.

To all those who have just started reading, the form can be found at:
http://pois.olympe-network.com

[martin88]

Martin88,
SSRIs (I've been on many) had no effect on my POIS, although they assisted my PE somewhat.

I've been on SSRI's for 20 years. No POIS effect. They have lowered my libido, however.

I agree with both of you (I trust you) that SSRIs alone are not the cure for pois (at least for the dosage you took and perhaps for any dosages). However it's still possible that SSRIs can help pois in combination with garlic or Levitra or something else. (Note that SSRIs probably make a permanent change in the brain so it can be efficient even if you stopped). Also note that this is purely speculations! I'm not ready myself to take SSRIs, although my doctor really wants me to start with that.

Demografx, I'm looking forward to have the results of your "excursion" to the endocrinologist. Tremendous effort ! I know you spoke in your name only, but did you give them our answers to the questionnaire ? Thanks.

[demografx]

Demografx, I'm looking forward to have the results of your "excursion" to the endocrinologist. Tremendous effort ! I know you spoke in your name only, but did you give them our answers to the questionnaire ? Thanks.

Thanks a lot, Martin. I spoke both for myself and for the forum. The endocrinologist who I hope will assist the forum is an influential colleague of the doctor I saw, whom I still yet need to contact. If I can get this colleague interested in our forum, I am hoping that he will get a grant for a POIS study. In the past, this colleague has been very successful in obtaining grant money for medical research studies on other ailments.

I think initially I will mention to the colleague the questionnaires, the video and our forum website, as I did with Dr Waldinger (when Dr Waldinger showed interest I sent him Counterpoints' and B_Jim's compilations).

If the university colleague shows interest in working with us, I will show him, as I did with Dr Waldinger and as Counterpoints did with the MD/PhD, the questionnaire responses, and Counterpoints' and B_Jim's summaries.

[demografx]

I am re-posting the university endocrinologist's question yesterday to all of us, in case it was lost in my long, rambling writeup!

Question to us from the endocrinologist:
"Does anyone here have experience with tricyclic antidepressants, such as Tofranil, and POIS?"

[demografx]

Thanks, CP. But wouldn't a researcher(s) typically devise their own questionnaire for a study?

An MD PhD researcher sent me some of his questions.  Many similar questions were included in the questionnaire.  Also, as Chris (of Naked Scientists) said in an early letter you posted, we often need to do such preliminary research before someone else would want to take on a project like this.  This is the data that we would give a researcher when introducing the problem.  I share Chris' opinion that this is an extremely important part of receiving help. Note: An MD PhD, a neurologist/psychiatrist, and a reputable psychologist, are amongst those who have reviewed the questions.

To all those who have just started reading, the form can be found at:
http://pois.olympe-network.com

Thanks, CP, medical research apparently works a little differently from the market research I'm accustomed to.

Thank you very much for your very substantial effort in putting this together.

Previously, our information gathering/data were certainly not organized nearly as well as you have outlined, developed and brought to forum reality.

[demografx]

Counterpoints, I am leaning toward not showing responses immediately to the university rainmaker, but saying we have it. At this stage I just want to get him interested in us at a "warm and fuzzy" level. If he shows interest, then my thinking is to show him the summaries, etc. on the second round, as we did with the first set of researchers. Do you agree?

[martin88]

I am re-posting the university endocrinologist's question yesterday to all of us, in case it was lost in my long, rambling writeup!Question to us from the endocrinologist:
"Does anyone here have experience with tricyclic antidepressants, such as Tofranil, and POIS?"

I never took antidepressants, but Anafranil, a tricyclic, was the first choice of my MD in my case. Also I read that this drug is used to treat premature ejaculation (10mg/day). But there are a lot of side effects, and a lot of natural treatments for premature ejaculation to try before.