Author Topic: List of Doctors Who Knows about POIS and are seeing POIS patients  (Read 50006 times)

Journey

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #80 on: January 27, 2023, 01:56:24 PM »
Does POIS show up on official doctor databases of disorders? Is there a such an unified system?

Many POISers have said some doctors did not even know it exists and even when told about the name they were sceptical

So is there a lack of information in the databases?

Quantum

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #81 on: January 27, 2023, 09:43:00 PM »
Does POIS show up on official doctor databases of disorders? Is there a such an unified system?

Many POISers have said some doctors did not even know it exists and even when told about the name they were sceptical

So is there a lack of information in the databases?
POIS is officially listed in the Rare Diseases database of the National Insitute for Health (NIH), see https://rarediseases.info.nih.gov/diseases/10809/postorgasmic-illness-syndrome

It is also listed on Orphanet: https://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=20421&Disease_Disease_Search_diseaseGroup=pois&Disease_Disease_Search_diseaseType=Pat&Disease%28s%29/group%20of%20diseases=Postorgasmic-illness-syndrome--POIS-&title=Postorgasmic-illness-syndrome--POIS-&search=Disease_Search_Simple

Most doctors do not know about POIS because it is a rare disease, and they do not see cases during their training and career.  But if a doctor take the time to search pubmed for it, he will find a lot of medical articles on POIS: https://pubmed.ncbi.nlm.nih.gov/?term=post-orgasmic+illness+syndrome


Pubmed is freely accessible to all doctors, so it is a question of being willing to take the time to investigate.
There is not much information on POIS up to now, but a simple search on pubmed, a database trusted by doctors, will show that POIS do exist.

I strongly recommend that you give this link to any POIS sufferer planning a visit to a doctor, any doctor: https://poiscenter.com/forums/index.php?topic=2392.msg20182#msg20182  .  It clearly says what to expect, and gives to link that you can send the doctor, which is the best review article so far on POIS ( this article is at https://tau.amegroups.com/article/view/11107/11778 .  Access is free, it is the whole article, complete with references, and it is from Dr. Waldinger).

Of course, any skeptical doctor can be given the link to Muon's POIS archives, listing all POIS articles published in medical journals, by year of publication:  https://poiscenter.com/forums/index.php?topic=3127.msg31515#msg31515 .  This will make it clear to them that POIS is already acknowledged by at least a part of the medical community.

A high-profile POIS study like the one coming up this year will help raise that awareness among doctors, of course.



« Last Edit: January 27, 2023, 09:46:41 PM by Quantum »
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healor

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #82 on: March 22, 2023, 11:42:38 AM »
Dr. Raj Singh MD, FACP, FASN
Internal Medicine, Nephrology
HEALOR
www.healor.com
3900 west charleston blvd ste 170
Las Vegas, NV 89102
702-362-2273

https://healor.com/post-orgasmic-illness-syndrome
« Last Edit: November 04, 2023, 04:55:06 PM by healor »

berlin1984

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #83 on: March 22, 2023, 11:48:59 AM »
healor, nice, welcome to the forum!

Quantum can add you to the list in the first post.

Quantum

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #84 on: May 10, 2023, 08:38:04 PM »
Thanks to Muon, we have a new entry in our POIS Doctors List:

18-Doctor's name:   Dr Zsolt Kopa, MD, PhD, MSc, andrologist/urologist
Contact information:
Associate Professor, Semmelweis University, Andrology Centre (Dept. of Urology), Budapest, Hungary
Websitehttps://semmelweis.hu/urologia/en/zsolt-kopa/
email:  kopa.zsolt@med.semmelweis-univ.hu
POIS article(s) published:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8392034/ 
Other information :    Even if he is in Hungary, he is perfectly fluent in English

It is the first entry for Hungary.


To see the complete POIS Doctors list,  go to https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338
« Last Edit: May 10, 2023, 08:40:15 PM by Quantum »
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

demografx

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #85 on: May 12, 2023, 03:09:23 PM »
Thanks to Muon, we have a new entry in our POIS Doctors List:

18-Doctor's name:   Dr Zsolt Kopa, MD, PhD, MSc, andrologist/urologist
Contact information:
Associate Professor, Semmelweis University, Andrology Centre (Dept. of Urology), Budapest, Hungary
Websitehttps://semmelweis.hu/urologia/en/zsolt-kopa/
email:  kopa.zsolt@med.semmelweis-univ.hu
POIS article(s) published:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8392034/ 
Other information :    Even if he is in Hungary, he is perfectly fluent in English

It is the first entry for Hungary.


To see the complete POIS Doctors list,  go to https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338

Thanks, Muon & Quantum!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

berlin1984

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #86 on: June 22, 2023, 03:04:32 AM »
Some German guy will apparantly see a doctor in Charité Berlin to talk about POIS.

https://www.reddit.com/r/POIS/comments/14f6p3c/to_all_german_poisers_in_this_sub/

Maybe someone with a Reddit account (Muon?) could reply to this thread and ask him to post more info and also post the results to POIScenter, maybe we'd have a doctor to add to the list.

I'd also be curious, maybe I'd go myself too, even though I have an aversion for doctors  :P .


EDIT: Thanks Muon!

Muon

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #87 on: September 02, 2023, 07:34:17 AM »
I emailed the doc but didn’t get any response.

T. S. Sathyanarayana Rao, Department of Psychiatry, JSS Medical College & Hospital, JSS Academy of Higher Education and Research, Mysuru, Karnataka 570004, India.

Article from August, 2023.
https://journals.sagepub.com/doi/10.1177/26318318231194228

pois_nc

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Re: Rachel S. Rubin, MD
« Reply #88 on: September 02, 2023, 12:00:08 PM »
https://twitter.com/drrachelrubin/status/1407425529309978624

I gave her contact info of Dr. Theoharides and vice versa. We need some experts on this.

I actually contacted Dr. Rubin to make an appointment for this condition because I'm not far from where she is but currently can't afford the fee for even an initial appointment. From what she messaged me, she already had a few patients that have Pois and said that she's learning more and more about the best ways to manage this thing. Hopefully, in the future, I'll be sure to visit her and give you all an update on how things are going *finger crossed*


Even with insurance?

demografx

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #89 on: September 07, 2023, 01:57:39 PM »
I emailed the doc but didn’t get any response.

T. S. Sathyanarayana Rao, Department of Psychiatry, JSS Medical College & Hospital, JSS Academy of Higher Education and Research, Mysuru, Karnataka 570004, India.

Article from August, 2023.
https://journals.sagepub.com/doi/10.1177/26318318231194228

Muon, thanks for trying.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Mikasa

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #90 on: September 18, 2023, 06:59:54 AM »
I emailed the doc but didn’t get any response.

T. S. Sathyanarayana Rao, Department of Psychiatry, JSS Medical College & Hospital, JSS Academy of Higher Education and Research, Mysuru, Karnataka 570004, India.

Article from August, 2023.
https://journals.sagepub.com/doi/10.1177/26318318231194228

Muon, thanks for trying.
Hello,. Does anyone know of a doctor who speaks Spanish???????


Andre2505

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #92 on: September 23, 2023, 05:35:48 AM »
Qualcuno conosce un medico che parli italiano??🇮🇹🇮🇹 perfavore

Quantum

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #93 on: September 24, 2023, 09:26:39 AM »
Hi Andre,

I see from your post at https://poiscenter.com/forums/index.php?topic=4400.msg47288#msg47288 that you have found an Italian doctor in Rome who receives patients with POIS.  If this doctor wants to be listed here on our POIS Doctors list, please send me his name and information. 

Thanks !
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

DivineAfflatus

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #94 on: October 09, 2023, 06:43:34 AM »

I sent messages to Dr Keity Souza Santos, and that was the answer, I recommend that you remove her from the list, she didn't show the slightest interest

Her response
(I have received some messages
My number ended up at this POIS Center because we published a case report of a patient with POIS. I'm a researcher, I'm not a doctor. We evaluated a cellular response to see if we could improve the understanding of the mechanism of POIs, but our results were negative, we saw no relationship. Unfortunately, our results only showed a path that is not... so I can't help. I am really sorry)

Quantum

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #95 on: October 09, 2023, 08:48:53 AM »

I sent messages to Dr Keity Souza Santos, and that was the answer, I recommend that you remove her from the list, she didn't show the slightest interest

Her response
(I have received some messages
My number ended up at this POIS Center because we published a case report of a patient with POIS. I'm a researcher, I'm not a doctor. We evaluated a cellular response to see if we could improve the understanding of the mechanism of POIs, but our results were negative, we saw no relationship. Unfortunately, our results only showed a path that is not... so I can't help. I am really sorry)

Thanks for the feedback, DivineAfflatus.   I will remove her name from the list.  Her answer is very disappointing.

She also answered like she was not asked for authorization before that I put her contact info here on the forum.  My work ethic is better than that.  Before putting a doctor's name on the list, I always contact them through email and ask if they do want to receive POIS patients in consultation, and if they accept to have their name on our POIS doctors list.   She was added in 2019. There is a clear sign in her entry that I have contacted her, as it is written, in the 'additional notes' section, that "She would be happy to see more POIS patients from Brazil".  She probably has forgotten about this, more than four years and many research projects later, and we will respect that.   She had many publications on other topics since then and has moved on, and it looks like her interest in investigating POIS cases has faded, so her name will be erased from the list. 

If anyone else has a similar answer from another doctor on the list, please let me know.
« Last Edit: October 09, 2023, 09:12:48 AM by Quantum »
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Muon

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #96 on: November 05, 2023, 02:42:21 PM »
Mental and sexual health institute in Athene, Greece is familiar with POIS (Dimitra Karyophylli). Patients from Greece could reach out to them. https://askitis.gr/syndromo-meta-orgasmikis-nosou/

less_fogged

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #97 on: November 06, 2023, 03:12:00 PM »
Hi Everyone.

I'm just curios, is there any POIS'ers here that can confirm having visited a doctor/professor that is named on the Orpha.net website? And were they helpful?

Pity that for diagnostic tests it says (0) and also for research projects (0) :(

https://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=20421&Disease_Disease_Search_diseaseGroup=post-orgasmic-illness-syndrome&Disease_Disease_Search_diseaseType=Pat&Disease(s)/group%20of%20diseases=Postorgasmic-illness-syndrome&title=Postorgasmic%20illness%20syndrome&search=Disease_Search_Simple


Quantum

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #98 on: November 06, 2023, 03:22:48 PM »
Hi Everyone.

I'm just curios, is there any POIS'ers here that can confirm having visited a doctor/professor that is named on the Orpha.net website? And were they helpful?

Pity that for diagnostic tests it says (0) and also for research projects (0) :(

https://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=20421&Disease_Disease_Search_diseaseGroup=post-orgasmic-illness-syndrome&Disease_Disease_Search_diseaseType=Pat&Disease(s)/group%20of%20diseases=Postorgasmic-illness-syndrome&title=Postorgasmic%20illness%20syndrome&search=Disease_Search_Simple

Hi less_fogged,
All I see on that page is very general information.  The clinics they link to are for auto-immune and rare diseases in general, so nothing specific to POIS.  The MDs there may not know about POIS at all.
Our list is more useful!
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

demografx

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Re: List of Doctors Who Knows about POIS and are seeing POIS patients
« Reply #99 on: November 07, 2023, 05:03:50 PM »
Mental and sexual health institute in Athene, Greece is familiar with POIS (Dimitra Karyophylli). Patients from Greece could reach out to them. https://askitis.gr/syndromo-meta-orgasmikis-nosou/

Thanks, Muon!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business