POISCENTER
POIS Cause/Treatment Discussions => General Alternative Causes and Treatments of POIS => Topic started by: Quantum on November 29, 2017, 11:27:31 PM
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Here is a list of doctors and specialists ( urologists, neurologists, allergy specialists, etc...) who know about POIS, and are open to see POIS patients ( "POIS doctors" ). The MDs in this POIS Doctors list may be from anywhere in the world. City and country where is the Doctor's clinic is in red in the list below, so you can easily find which Doctor is the nearest from where you live.
So, for members who would like to see a physician who already knows about
POIS, one that will not send them in psychiatry, or try a large list of tests that will come back all normal ( as they did with all members here), or try any meds with no particular experience with it, so here is the place to find a "POIS Doctor". Those "POIS doctors" will not make you feel frustrated because you were not understood at all, will not make you false promises, but will help you the best they can, and are willing to learn more about POIS, and help us more, and they are usually involved in POIS research.
Be aware that these Doctors do not know yet what causes POIS, and in most cases do not have much to offer in terms of treatment ( However, as of 2024, there are a few case reports of successful treatment of individual cases with specific drugs). But at the least, those doctors know about POIS diagnostic criteria, and can confirm you have POIS, and you will get some understanding from a qualified doctor. Also, those physicians listed here are aiming at a better understanding of POIS, and at raising awareness of POIS in the medical community. So, the more POIS patients they will see, the better they will get to know POIS, and the more material they will have for another scientific publication on POIS ( most of those listed here have already published at least one article on POIS).
Some of these doctors do offer some treatment alternatives, like NSAIDS or prednisolone, but at this point, they may be called "experimental" treatments. Keep in mind that there is no specific treatment for POIS yet. Before accepting a treatment offered to you, be sure to be aware of all the potential risks of this experimental treatment. Do not hesitate to ask for a second opinion from your family doctor or from another specialist before going forward with any treatment, which, at this stage, are all experimental.
So, be aware that POISCenter does not recommend any treatment, and IF YOU HAVE A CONSULTATION WITH A POIS DOCTOR ON THIS LIST AND ACCEPT TO TRY AN EXPERIMENTAL POIS TREATMENT SHE OR HE SUGGESTS, YOU DO IT AT YOUR OWN RISKS.
If you think a physician should be added to this list, send me a private message.
POIS Doctors List:
1- Doctor's name: Dr Wayne Hellstrom ( Urologist)
Contact information: Professor of Urology / Chief of Andrology / whellst@tulane.edu / (504) 988-3361 / School of Medicine, University of Tulane, New Orleans,Louisiana, USA / http://medicine.tulane.edu/departments/urology/faculty/wayne-jg-hellstrom-md-facs (http://medicine.tulane.edu/departments/urology/faculty/wayne-jg-hellstrom-md-facs)
POIS article(s) published:
Direct link to appointement webpage https://medicine.tulane.edu/find-doctor/urology-clinic (https://medicine.tulane.edu/find-doctor/urology-clinic)
Other information: You need a reference from your primary care physician in order to make an appointment with Dr Hellstrom about POIS.
Take note that Dr Hellstrom is the head of the Tulane University team, same team that has made a survey on the forum in 2019 and will eventually publish about it.
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2 - Doctor's name: Dr Ege Can Serefoglu, MD, FECSM
Contact information : Associate Professor / www.drserefoglu.com (http://www.drserefoglu.com) / Uroklinik - Center of Excellence in Urology / Zerrin Sk. No:2 34330 ?ç Levent, Besiktas, Istanbul, Turkey / egecanserefoglu@hotmail.com
POIS article(s) published : https://www.ncbi.nlm.nih.gov/pubmed/28499517 (https://www.ncbi.nlm.nih.gov/pubmed/28499517)
Other information : Even if in Turkey, he is perfectly fluent in English
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3 - Doctor's name: Pr Gerard Amarenco ( Neuro-urologist )
Contact information : , La Sorbonne : gerard.amarenco@aphp.fr
Service de Neuro-Urologie, Hôpital Tenon, Paris
4 Rue de la Chine, 75020, Paris, France
Neuro-Urology Department, Tenon Hospital, Paris
GRC01 GREEN Groupe de Recherche Clinique en Neuro-Urologie
Sorbonne Universités UPMC, Paris, France /
GRC01 GREEN Group of Clinical Research in Neuro-Urology
https://grc01-green.jimdo.com/ (https://grc01-green.jimdo.com/)
Tel : (33)156017500
POIS article(s) published : https://www.clinicalkey.fr/#!/content/playContent/1-s2.0-S1166708717300696?returnurl=http:%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS1166708717300696%3Fshowall%3Dtrue&referrer= (https://www.clinicalkey.fr/#!/content/playContent/1-s2.0-S1166708717300696?returnurl=http:%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS1166708717300696%3Fshowall%3Dtrue&referrer=)
Other information : La Sorbonne University is in Paris, France
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4 - Doctor's name: Dr Ahmed Mahmoud ( Endocrinology and metabolic diseases)
Contact information : Scientific coordinator of Andrological center / Male sexual dysfunction (Universiteit Gent) UZ Gent, Corneel Heymanslaan 10, 9000, Entrance 12, route 1450, 9th floor , Gent, Belgium
e-mail : endocrinologie@uzgent.be
website : https://www.uzgent.be/patient/zoek-een-arts-of-dienst/endocrinologie-en-stofwisselingsziekten/team/dr-ahmed-mahmoud (https://www.uzgent.be/patient/zoek-een-arts-of-dienst/endocrinologie-en-stofwisselingsziekten/team/dr-ahmed-mahmoud)
PHONE: 09 332 21 37
POIS article(s) published : -
Other information : You need a reference from your primary care physician in order to make an appointment with Dr Ahmed Mahmoud about POIS but you can also email him a letter with explaining your personal history about POIS, how it effects you, etc.
The Andrology Center of Ghent is a founding member of the “Belgian expert group for semen analysis” which provides ESHRE training every 1 or 2 years in semen analysis under supervision of the Belgian Institute of Public Health (Ahmed Mahmoud, followed by Kelly Tilleman).
Dr Ahmed Mahmoud is a colleague of the medical head of endocrinology Prof Guy T'Sjoen
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5 - Doctor's name: Dr Irwin Goldstein ( urologist, specialized in sexual health)
Contact information : 5555 Reservoir Dr Ste 300 , San Diego, CA, USA
92120 (619) 286-8804 or 619.265.8865
e-mail: dr.irwingoldstein@gmail.com
website : http://www.sandiegosexualmedicine.com/meet-dr-goldstein (http://www.sandiegosexualmedicine.com/meet-dr-goldstein)
POIS article(s) published : data to be added
Other information : In recent years, it seems that Dr Goldstein has offered an experimental treatment to members of this forum who had a consultation with him: Transforaminal Epidural Steroid Injection ( TFESI). Be aware that this procedure has not been evaluated in POIS. See here a comment from a member about this procedure: https://poiscenter.com/forums/index.php?topic=3948.msg41968#msg41968 (https://poiscenter.com/forums/index.php?topic=3948.msg41968#msg41968).
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6 - Doctor's name: Dr Paul-Henri Cesar ( Neurologist )
Contact information : Keck Hospital of USC
1510 San Pablo St., 5th Floor, Suite 514, Los Angeles, CA, USA 90033
toll free number fr appointements: (800) USC-CARE (800-872-2273)
e-mail : paul-henri.cesar@med.usc.edu
https://providers.keckmedicine.org/provider/Paul-Henri+Cesar/205217 (https://providers.keckmedicine.org/provider/Paul-Henri+Cesar/205217)
POIS article(s) published : -
Other information : At least one of our forum members had consultations with him. He is interested in understanding POIS and help find a treatment.
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7- Doctor's name: Dr Serge Carrier ( urologist )
Contact information : Hôp Général Juif - Sir M.B. Davis E-208-3755 ch de La Côte-Sainte-Catherine, Montreal, P.Q., Canada, H3T 1E2
Telephone: 514-340-8222 extension #7558
POIS article(s) published : data to be added
Other information : English and French speaking
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8 - Doctor's name: Dr Celina Silvia Stafie ( Specialist in Allergology and Clinical Immunology, Specialist in Internal Medicine )
Contact information : Allergology Private Office, Bd Carol I nr.4, corp A, Habitat Building, Iasi, Romania
Office phone +40232219932
Mobile office phone +40745114074
Email address aret2009@gmail.com
POIS article(s) published : POST COITAL ALLERGY - A CASE REPORT OF POST ORGASMIC ILLNESS SYNDROME (https://www.revmedchir.ro/index.php/revmedchir/article/view/1798/1449)
Other information : website: http://alergologieiasi.ro/ (http://alergologieiasi.ro/)
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9 - Doctor's name: Dr Keity Souza Santos ( immunologist )
NO LONGER RECEIVING POIS PATIENTS IN CONSULTATION ( 2023-10)
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10 -Doctor's name: Dr De Boer Mannen Gezondheid ( urologist)
Contact information : 3723 MB, Bilthoven, Netherlands
Phone: 030 662 8327
e-mail: voorbeeld@domeinnaam.nl
Dr De Boer Mannen Gezondheid is now retired ( around 2023-2024) . His clinic will receive you only if you already had an appointment with him, and I have no information if there are any doctors there knowing about POIS and receiveing POIS patients ( even if it is the clinic where the late Dr Waldinger was practicing).
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11 -Doctor's name: Dr Yacov (Cobi) Reisman ( Urologist & Sexologist )
Contact information : Prof. W.H. Keesomlaan 12 , Amstelveen, The Netherlands
Phone: +0031638760984
e-mail: info@flare-health.nl
Website: https://www.flare-health.nl/ (https://www.flare-health.nl/)
POIS article(s) published : https://www.nature.com/articles/s41443-020-0314-9 (https://www.nature.com/articles/s41443-020-0314-9)
Other information : He knew Dr. Waldinger personally. He would like to help POIS patients.
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12 -Doctor's name: Dr Khaleeq ur Rehman ( Urologist )
Contact information : 14- Abu Baker Block New Garden Town, Lahore, Lahore, Pakistan
Phone: + 042 32500989
e-mail: info@hameedlatifhospital.com (info@hameedlatifhospital.com)
Website: http://www.hameedlatifhospital.com/doctor_departments/urology-lithotripsy/ (http://www.hameedlatifhospital.com/doctor_departments/urology-lithotripsy/)
POIS article(s) published : -
Other information : He speaks English and Urdu. He has treated at least one patient with presumed success ( with 5mg prednisolone 4 hours before O, see https://www.reddit.com/r/POIS/comments/if2ssc/on_the_way_to_recovery_thanks_to_my_brilliant/ (https://www.reddit.com/r/POIS/comments/if2ssc/on_the_way_to_recovery_thanks_to_my_brilliant/)
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13 -Doctor's name: Rachel S. Rubin MD, IF (Urologist and Sexual Medicine Specialist)
Assistant Clinical Professor Department of Urology, Georgetown University
Contact information : 6171 Executive Blvd Rockville, MD, Rockville, MD, USA, 20852
office phone: 202-888-6731 fax: 202- 851-5739
email: info@rachelrubinmd.com
website: https://www.rachelrubinmd.com/ (https://www.rachelrubinmd.com/)
twitter:@drrachelrubin
instagram: @drrachelrubinPOIS article(s) published : Orzel, J., and R. Rubin. "042 Successful treatment strategies in two patients with Postorgasmic illness syndrome (POIS)." The Journal of Sexual Medicine 18.3 (2021): S23-S24. (https://www.jsm.jsexmed.org/article/S1743-6095(21)00114-4/abstract) (Full version (https://poiscenter.com/forums/index.php?topic=3551.msg38184#msg38184))
Other information : She knows about POIS and is interested in seeing POIS patients and contributing to POIS research
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14-Doctor's name: Jia Yin, MD, Allergy Doctor/ProfessorPresident of Allergy Department, Peking Union Medical College Hospital. President, Chinese Medical Doctor Association - Allergy Department
Contact information : Peking Union Medical College Hospital,Beijing, China, 100032
Office Phone: +86 10 69156114
Email: doctoryinjia@163.com
Website: http://ims.pumch.cn/doctor/detail/4573.html (http://ims.pumch.cn/doctor/detail/4573.html)
POIS article(s) published : Postorgasmic illness syndrome (POIS) in a Chinese man: No proof for IgE-mediated allergy to semen https://sci-hub.se/10.1111/jsm.12813 (https://sci-hub.se/10.1111/jsm.12813)
Other information : Professor Yin reported the first POIS patient in China and has built up a team to research POIS. She is actively recruiting patients who can go to Beijing to have an appointment with her. Please contact Professor Yin via email or make an appointment via Peking Union Medical College Hospital.
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15-Doctor's name: Kam Mann, MD, Physician in Andrology, MBBS MRCP MRCGP
Contact information : BMI Sarum Road Hospital, Sarum Road, Winchester, Hampshire, England SO22 5HA and also International Andrology London ,78 Seymour Place, London United Kingdom ,W1H 2EH
Email: unknown
Website(s): https://www.wessexandrology.com/about-the-team (https://www.wessexandrology.com/about-the-team) , https://london-andrology.co.uk/medical-experts/dr-kam-mann/ (https://london-andrology.co.uk/medical-experts/dr-kam-mann/) and https://www.bmihealthcare.co.uk/consultants/kam-mann#aria-panel-1/ (https://www.bmihealthcare.co.uk/consultants/kam-mann#aria-panel-1/) ( there is a "Chat with Us" link at the top right of this webpage, in order to get information)
POIS article(s) published : He presented a POIS Case Study at The British Society for Sexual Medicine Annual London Conference, in 2018 http://www.bssm.org.uk/wp-content/uploads/2018/04/PROGRAMME-MAY-11TH-RSM.pdf (http://www.bssm.org.uk/wp-content/uploads/2018/04/PROGRAMME-MAY-11TH-RSM.pdf)
Other information : Dr Mann is an experienced Men’s Health Physician with a specialist interest in Sexual Medicine
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16-Doctor's name: Prof. Piotr Jedrzejczak, MD, PhD, gynecologist/andrologist
Contact information: Division of Reproduction,Poznan University of Medical Sciences, Poznan, Poland
Website(s): https://www.mp.pl/lekarz/piotr.jedrzejczak (https://www.mp.pl/lekarz/piotr.jedrzejczak)
phone: +48601820212
POIS article(s) published : Wrotynska-Barczynska, J., Swat, E., Berger, A., Pawelczyk, L., & Jedrzejczak, P. "Intensified Hyposensitization Is an Effective Treatment of Postorgasmic Illness Syndrome (POIS)." Sexual Medicine 10.2 (2022): 100474 (https://www.sciencedirect.com/science/article/pii/S2050116121001549)
Other information : to be added
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17-Doctor's name: Dr. Martina Ambardjieva , MD, Ph.D, Urology resident,
Contact information: Ss. Cyril and Methodius University in Skopje, Skopje, North Macedonia
Website(s): -
email: martina.ambardzieva@gmail.com
POIS article(s) published : - no published article, but cited in https://www.mdlinx.com/article/new-study-sheds-lights-on-a-rare-condition-that-causes-illness-after-orgasm/7CrdELYiQcGnjFMZOLhQhj (https://www.mdlinx.com/article/new-study-sheds-lights-on-a-rare-condition-that-causes-illness-after-orgasm/7CrdELYiQcGnjFMZOLhQhj)
Other information : to be added
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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
Website: https://semmelweis.hu/urologia/en/zsolt-kopa/ (https://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/ (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8392034/)
Other information : Even if he is in Hungary, he is perfectly fluent in English
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1- Doctor's name: Dr Wayne Hellstrom ( Urologist)
Contact information: Professor of Urology / Chief of Andrology / whellst@tulane.edu / (504) 988-3361 / School of Medicine, University of Tulane, New Orleans, USA / http://medicine.tulane.edu/departments/urology/faculty/wayne-jg-hellstrom-md-facs
POIS article(s) published: http://www.smr.jsexmed.org/article/S2050-0521(17)30116-6/abstract
Direct link to appointement webpage https://medicine.tulane.edu/find-doctor/urology-clinic
Other information: You need a reference from your primary care physician in order to make an appointment with Dr Hellstrom about POIS.
Take note that Dr Hellstrom is part of the Tulane University team that have expressed the intention to submit, in the coming months, a POIS study project to NORD for our research grant.
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2 - Doctor's name: Dr Ege Can Serefoglu, MD, FECSM
Contact information : Associate Professor / www.drserefoglu.com / Uroklinik - Center of Excellence in Urology / Zerrin Sk. No:2 34330 ?ç Levent, Besiktas, Istanbul, Turkey / egecanserefoglu@hotmail.com
POIS article(s) published : https://www.ncbi.nlm.nih.gov/pubmed/28499517
Other information : Even if in Turkey, he is perfectly fluent in English
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For those wondering why Dr Marcel Waldinger is not on this list, it is because I did not received yet an answer from him as to whether or not he is still making appointment for POIS sufferers, and if so, what would be the contact information to use. That doesn't mean he is not making such appointments, but the other Doctors listed here have sent me an e-mail confirmation that they do, and have confirmed the contact information to use.
As soon as I receive confirmation from Dr Waldinger, I will update this thread
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3 - Doctor's name: Pr Gerard Amarenco Neuro-urologist
Contact information : , La Sorbonne : gerard.amarenco@aphp.fr
Service de Neuro-Urologie, Hôpital Tenon, Paris
4 Rue de la Chine, 75020 Paris, France
Neuro-Urology Department, Tenon Hospital, Paris
GRC01 GREEN Groupe de Recherche Clinique en Neuro-Urologie
Sorbonne Universités UPMC, Paris
GRC01 GREEN Group of Clinical Research in Neuro-Urology
https://grc01-green.jimdo.com/
Tel : (33)156017500
POIS article(s) published : https://www.clinicalkey.fr/#!/content/playContent/1-s2.0-S1166708717300696?returnurl=http:%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS1166708717300696%3Fshowall%3Dtrue&referrer=
Other information : La Sorbonne University is in Paris, France
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Quantum, thanks for this fantastic resource!
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Thanks a lot Quantum. Anyone in UK?
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There was Dr David Goldmeier in St Mary Hospital, London that I met in 2011 and he met several POIS patients. I have just been referred to him by my GP so will have soon an appointment with him.
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Dr Michael Lowy at The Male Clinic, SUITE 2, LEVEL 6
75 CROWN STREET
WOOLLOOMOOLOO NSW 2011
2023-12 update: Dr Lowy is now retired
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Dr Michael Lowy at The Male Clinic, SUITE 2, LEVEL 6
75 CROWN STREET
WOOLLOOMOOLOO NSW 2011
Thanks melt for the reference. I am not surprised to have found that he had already made a clinical presentation of a POIS case at a sexual medicine conference. For those, like me, wondering, this address is in Sydney , Australia. I have also found an e-mail for him, see below:
Doctor's name: Dr Michael Lowy
2023-12 update: Dr Lowy is now retired, and asked to be erased form the list
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5 - Doctor's name: Dr Irwin Goldstein ( urologist, specialized in sexual health)
Contact information : 5555 Reservoir Dr Ste 300 , San Diego, CA 92120 (619) 286-8804 or 619.265.8865
e-mail: dr.irwingoldstein@gmail.com
website : http://www.sandiegosexualmedicine.com/meet-dr-goldstein
POIS article(s) published : data to be added
Other information : like the other doctors mentioned here, he does not have any definite treatment to offer, but he knows about POIS, and is interested in understanding it and finding a treatment for it. He has already seen at least one member of this forum, and maybe other POIS cases as well.
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6 - Doctor's name: Dr Paul-Henri Cesar (Neurologist)
Contact information : Keck Hospital of USC
1510 San Pablo St., 5th Floor, Suite 514, Los Angeles, CA 90033
toll free number fr appointements: (800) USC-CARE (800-872-2273)
e-mail : paul-henri.cesar@med.usc.edu
https://providers.keckmedicine.org/provider/Paul-Henri+Cesar/205217
POIS article(s) published : -
Other information : At least one of our forum members had consultations with him. He is interested in understanding POIS and help find a treatment.
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Any chance this doctor can help us or the guy who consulted him to get a PET-MRI?
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Dr. Serge Carrier Im Montreal, QC, Canada who is a urologist also recognizes the condition.
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Thanks, lycopolous!
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Dr. Serge Carrier Im Montreal, QC, Canada who is a urologist also recognizes the condition.
lycopolous, please check your inbox for private message from me.
Thanks!
Demo
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Dr. Serge Carrier Im Montreal, QC, Canada who is a urologist also recognizes the condition.
lycopolous, please check your inbox for private message from me.
Thanks!
Demo
Did anyone get to see Dr. Carrier? I'm also in Canada and am interested in what form of treatment he can offer if any.
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I have sent out some emails to doctors.
Quantum can copy this info to the top post. Suggestion: I would sort the complete list based on country:
Country A
Doctor X
Country B
Doctor Y
Doctor Z
etc
Reserve the first few replies of yours in case you might want to expand the list.
I think this thread should be linked on the front page in the same area where the Tulani survey study link is placed. I would call it something like 'click here for the POIS doctor's list'.
Here is another doctor who shares contact info, big thanks for this! This is especially useful to patients from Romania:
Celina Silvia Stafie
Lecturer, PhD MD
University of Medicine and Pharmacy Gr.T.Popa Iasi, Romania, Department of Preventive Medicine
Specialist in Allergology and Clinical Immunology,
Specialist in Internal Medicine,
HUG Diploma in Therapeutical Education for Chronic Diseases
Adress: Allergology Private Office, Bd Carol I nr.4, corp A, Habitat Building, Iasi, Romania
Office phone +40232219932
Mobile office phone +40745114074
Email adress aret2009@gmail.com
Site www.alergologieiasi.ro
Her paper: POST COITAL ALLERGY - A CASE REPORT OF POST ORGASMIC ILLNESS SYNDROME (https://www.revmedchir.ro/index.php/revmedchir/article/view/1798/1449)
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Haven’t we moved beyond skin prick test credibility discussions?
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Haven’t we moved beyond skin prick test credibility discussions?
I do understand your comment Demo but that's not what this thread is about. Finding doctors who are familiar with POIS and are open to receive POIS patients can be quite difficult.
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Ok
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POIS patients from the countries below could try to get in contact with the corresponding author of the papers themselves (look for an envelope icon or this *Author for Correspondence). I'm unaware if these doctors want to see POIS patients.
China
Postorgasmic Illness Syndrome (POIS) in a Chinese Man: No Proof for IgE?Mediated Allergy to Semen (https://www.sciencedirect.com/science/article/pii/S1743609515309632#!)
Colombia
Sindrome postorgasmico: alergia al semen en hombres (https://www.sciencedirect.com/science/article/pii/S0210480613001174?via%3Dihub)
Czech Republic
Prof. Dr. Petr Weiss, Ph. D.
Sexuologicky ustav 1. LF UK a VFN
Ke Karlovu 640/11, 120 00 Praha 2
tel: 224 965 250
petr.weiss@vfn.cz
http://www.sexuologickaspolecnost.cz/kontakt
Egypt
Post-orgasmic illness syndrome: a case report (https://f1000research.com/articles/2-113)
Germany
Spermaallergie (https://sci-hub.se/https://link.springer.com/article/10.1007/s00105-015-3710-1)
India
MEDICALLY UNEXPLAINED SYMPTOMS EXPLAINED!!!! A CASE OF POST ORGASMIC ILLNESS SYNDROME (https://pdfs.semanticscholar.org/1eb8/93056353f17057297c1e3beba3f928381971.pdf)
Indonesia
https://poiscenter.com/forums/index.php?topic=2575.msg37530#msg37530
Israel
P-03-055 Post orgasmic illness (https://www.jsm.jsexmed.org/article/S1743-6095(16)00625-1/abstract)
Japan
Keio University hospital
Page 220:
https://sci-hub.se/https://doi.org/10.1111/jsm.12182_3
Oman
Preejaculatory illness syndrome: Two cases of a rare psychosomatic disorder (https://www.researchgate.net/profile/Mohamed_Elawdy/publication/286766524_Preejaculatory_illness_syndrome_Two_cases_of_a_rare_psychosomatic_disorder/links/56d1beb608ae4d8d64a5d3a7.pdf)
South Korea
Intralymphatic Immunotherapy With Autologous Semen in a Korean Man With Post-Orgasmic Illness Syndrome (https://www.sciencedirect.com/science/article/pii/S2050116118300199)
Spain
Depreux, N., Basagana, M., & Pascal, M. (2018). Negative allergy study in a case of postorgasmic illness syndrome (POIS). Revista Internacional de Androlog?a, 16(1), 42-44. (https://www.sciencedirect.com/science/article/pii/S1698031X1730064X?via%3Dihub#!)
UK
Post-orgasmic illness syndrome (https://www.urologynews.uk.com/media/7490/uroma17-synopsis-v2.pdf)
282 Flooding as A Treatment for Post Orgasmic Illness Syndrome (https://www.jsm.jsexmed.org/article/S1743-6095(16)30671-3/abstract)
Ukraine
POSTORGASMIC ILLNESS SYNDROME: ??????? ?? ???????? (http://www.irbis-nbuv.gov.ua/cgi-bin/irbis_nbuv/cgiirbis_64.exe?C21COM=2&I21DBN=UJRN&P21DBN=UJRN&IMAGE_FILE_DOWNLOAD=1&Image_file_name=PDF/Msps_2013_18_4_21.pdf)
USA
Rochester, Minnesota
https://www.mayoclinic.org/biographies/ziegelmann-matthew-matt-j-m-d/bio-20460946
Is aware of POIS (saw his twitter comment about POIS article Ref (https://twitter.com/mjziegelmann/status/1316953200537292800))
Providence, Rhode Island
Mark R. Paulos M.D.
Paper (https://www.sciencedirect.com/science/article/pii/S0015028219325609#!)
Boston:
Successful treatment of Post-orgasmic illness syndrome with human chorionic gonadotropin (https://www.sciencedirect.com/science/article/pii/S221444201930453X)
R. Taylor Segraves & Richard Balon (Michigan). They are aware of POIS.
In Memoriam of Two Unique Men (https://www.tandfonline.com/doi/full/10.1080/0092623X.2019.1651497)
Authors from various countries that might be aware of Waldinger's POIS related work
You need to dig further yourself to find out whether they know about POIS:
Disorders of Orgasm and Ejaculation in Men (2004) (https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1743-6109.2004.10109.x)
Disorders of Orgasm and Ejaculation in Men (2010) (https://onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2010.01782.x)
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I'm unaware if these doctors want to see POIS patients.
Even if they don’t, I bet they’re in a great position to recommend one - - one that they trust to be POIS-sympathetic - - but which we know...most doctors aren’t!
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Well said Demo and feedback from patients who have visited one of these doctors is appreciated. Please keep posting articles which mentions POIS.
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Will do!
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As suggested by Muon, I have regrouped all the Doctors of my POIS Doctors list in the first post of this thread, for easier consultation.
I also have put their location ( city and country) in red, so it will be easier to find the nearest for you.
See the result at https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338 ( the first post of this thread )
I will keep it updated as I become aware of other doctors that are aware of what POIS is an that are seeing POIS patient, and have an interest to help understand it and find a treatment for it.
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I've added a paper from Spain to the list. Poisers from Spain could try to contact the authors and couple back to this thread.
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Maybe Observer can add to it?
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I've added a paper from Spain to the list. Poisers from Spain could try to contact the authors and couple back to this thread.
Emailed to Observer in Spain
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I've added a paper from Spain to the list. Poisers from Spain could try to contact the authors and couple back to this thread.
I will try to get in touch with this two female doctors. I might even pay a visit to them to share my impressions about this condition.
Thanks for sharing it!
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I've added a paper from Spain to the list. Poisers from Spain could try to contact the authors and couple back to this thread.
I will try to get in touch with this two female doctors. I might even pay a visit to them to share my impressions about this condition.
Thanks for sharing it!
Thanks, Observer!
Thanks, Muon!
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Dr. Serge Carrier Im Montreal, QC, Canada who is a urologist also recognizes the condition.
Quantum? Muon?
Included in list?
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Dr. Serge Carrier Im Montreal, QC, Canada who is a urologist also recognizes the condition.
Quantum? Muon?
Included in list?
Already done, Demo, see #7 in my list: https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338
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Added today to the list:
10 -Doctor's name: Dr De Boer Mannen Gezondheid ( urologist)
Contact information : 3723 MB, Bilthoven, Netherlands
Phone: 030 662 8327
e-mail: voorbeeld@domeinnaam.nl
contact page: https://www.dbmgz.nl/deboer/contactpagina (https://www.dbmgz.nl/deboer/contactpagina)
POIS article(s) published : - - -
Other information : website: https://www.dbmgz.nl/ (https://www.dbmgz.nl/) . Dr de Boers is a Dutch doctor who knew the late Dr Waldinger, so he knows about POIS and accept to see POIS patients.
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Email is:
contact@dbmgz.nl
You can delete my post after you edited your post.
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anyone in germany? ??? ???
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anyone in germany? ??? ???
It's interesting in the Orphanet listing that they list 3 "expert centres" in Germany under health care resources for this disease. It could be that these represent some of the people they consulted in verifying the existence of POIS, I'm not sure. It might be worth our while knowing more about this and I'll ask. I notice 'patient organisations' doesn't list our forums at present. I certainly made them aware of our forums in my original letter and I'll query this at some point.
Ah, just found this info about "expert centres"
http://www.orpha.net/consor/cgi-bin/Clinics.php?lng=EN
Thank you very much Mellivora. With people like you we have much more chance to overcome this condition.
It's not going to go away by itself!
I looked at the three "expert centers" and it looks like they treat in the "area", urology for instance, but I didn't see anything specific about POIS.
We'll have to work at updating our information there, but the biggest step has been made.
Thanks again.
pharayema:
From
https://poiscenter.com/forums/index.php?topic=125.msg3753#msg3753
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anyone in germany? ??? ???
I've come across this article in German about type 1 sensitivity against semen in my search for POIS articles, they also mention POIS so they are aware of it (see full article):
Spermaallergie (https://link.springer.com/article/10.1007/s00105-015-3710-1)
Click here for the full article (https://sci-hub.se/https://link.springer.com/article/10.1007/s00105-015-3710-1)
You may try to contact one of the authors, J.-P. Allam (click on envelope icon in first link or use the email address given in the second link). If you don't get any responds then you could try to get in touch via the university:
Klinik und Poliklinik f?r Dermatologie und Allergologie, Universit?tsklinikum Bonn, Sigmund-Freud-Str. 25, 53105, Bonn, Deutschland
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Thanks, Muon
Is “sperm allergy” still a viable concept?
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Is “sperm allergy” still a viable concept?
Most results from papers show that the mechanism behind POIS isn't antibody mediated. Only Type IV hypersensitivity hasn't been thoroughly tested. I don't think the classical allergy theory is viable.
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Thanks, Muon
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There was Dr David Goldmeier in St Mary Hospital, London that I met in 2011 and he met several POIS patients. I have just been referred to him by my GP so will have soon an appointment with him.
How did that go? I also live in london
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Any Londoners in this forum? If so, have you got any recommendations in terms of doctors and treatments?
Thank you!
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Hiya mate,
I'm not from London but live in Dorset. I would be willing to travel the country for a POIS doc. I reckon I'll try to contact Dr Goldmeier to see if I can after this whole Covid fiasco!
Idk if you've looked into that possibility? I mean of contacting him directly.
Take care!
J
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Japan has been added:
https://poiscenter.com/forums/index.php?topic=2575.msg31463#msg31463
Another Doctor to add:
Y. Reisman MD, PhD, FECSM, ECPS
Urologists & Sexologist-NVVS
Honorary Professor of Urology, Federal State Institute of Urology
Visiting Professor of Andrology, Shanghai Jiao Tong University
Program Director & Senior Lecturer Sexology RINO Amsterdam
Past-President of the European Society for Sexual Medicine (ESSM)
Address:
Prof. W.H. Keesomlaan 12
Amstelveen, The Netherlands
Phone: +0031638760984
Email address: info@flare-health.nl
Website: https://www.flare-health.nl/
Article: Clinical experience with post-orgasmic illness syndrome (POIS) patient-characteristics and possible treatment modality (https://sci-hub.se/10.1038/s41443-020-0314-9)
Comment: He knew Dr. Waldinger personally. He would like to help POIS patients.
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Japan has been added:
https://poiscenter.com/forums/index.php?topic=2575.msg31463#msg31463
Another Doctor to add:
Y. Reisman MD, PhD, FECSM, ECPS
Urologists & Sexologist-NVVS
Honorary Professor of Urology, Federal State Institute of Urology
Visiting Professor of Andrology, Shanghai Jiao Tong University
Program Director & Senior Lecturer Sexology RINO Amsterdam
Past-President of the European Society for Sexual Medicine (ESSM)
Address:
Prof. W.H. Keesomlaan 12
Amstelveen, The Netherlands
Phone: +0031638760984
Email address: info@flare-health.nl
Website: https://www.flare-health.nl/
Article: Clinical experience with post-orgasmic illness syndrome (POIS) patient-characteristics and possible treatment modality (https://sci-hub.se/10.1038/s41443-020-0314-9)
Comment: He knew Dr. Waldinger personally. He would like to help POIS patients.
thanks, Muon, added at #11 on the list at the beginning of this thread: https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338
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Forget Dr Goldmeier he only wants to help people who only have POIS, he seems to think that all the people he sees only have POIS and thats it. Because I have other triggers like showers, exercise histamine foods, chronic infections which are likely because of an immune deficiency or mast cell issue he doesn't want to help me anymore... Its funny because he was the one who suggested to me that I may have a mast cell issue. I understand that he is a doctor only in sexual medicine but if he is seeing people for POIS then he shouldn't stop seeing or helping me for this reason.
And even still the treatments he was suggesting weren't in the slightest helpful... He is a nice guy but its frustrating how even the doctors who see POIS patients can be like this.
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It seems to be difficult for doctors to step out of their comfort zone and explore & address potential mast cell issues. If the random guy on the forum without any medical background can read up on mast cell disorders and how you approach treatment then MDs can do it as well. They need to educate themselves on the subject and step out of their comfort zone.
I asked Waldinger a question once, can't remember what question but it was research related and he told me he was looking for patients who had only POIS and nothing else. Then I told him that the majority might have secondary conditions next to POIS which might be intertwined with POIS. They see POIS as an isolated disease which may not be true.
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Yes I completely agree with you they need to do a lot more but their ignorance and arrogance is stopping them.
Its funny because I told him ok I don't mind lets only speak about POIS then but because I have secondary issues also he doesn't seem to want to help me anymore. He doesn't want to prescribe me indomethacin yet theres a paper where he gave it to a POIS patient.
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I asked Waldinger a question once, can't remember what question but it was research related and he told me he was looking for patients who had only POIS and nothing else. Then I told him that the majority might have secondary conditions next to POIS which might be intertwined with POIS. They see POIS as an isolated disease which may not be true.
That sounds like a total dead end, and I'm disappointed to hear a researcher would have that attitude towards something that's clearly a multi-system disorder. I'm sure isolating it would have made it easier to research, but I've yet to hear of a single POIS sufferer who doesn't have a bunch of other symptoms as well.
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Another doctor's name.....Dr. Jay D. Burstein (Urologist) Sycamore, llinois. Northwestern medicine and Kish Health Systems affiliated. Knows this condition.
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Important note:
*** To see the current, updated list of POIS Doctors, go at the beginning of this thread at:
https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338 (https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338)
Thank you.
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A list of physicians for those individuals with Dysautonomia: https://www.dinet.org/physicians/
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I got permission from Dr. Rubin to add her to the list.
"I’d be thrilled to be on the list! We have a lot of work to do to research this awful condition!"
Rachel S. Rubin MD, IF
Board Certified Urologist and Sexual Medicine Specialist
IntimMedicine Specialists
Assistant Clinical Professor Department of Urology, Georgetown University
1850 M Street Suite 450
Washington DC 20036
office: 202-293-1000 / fax: 202-463-6150
Website: www.IntimMedicine.com
email: rrubin@intimMedicine.com
twitter: @rachelsrubin1
Instagram: @drrachelrubin
Facebook: DrRachelRubin
Another doctor's name.....Dr. Jay D. Burstein (Urologist) Sycamore, llinois. Northwestern medicine and Kish Health Systems affiliated. Knows this condition.
Did someone check up on this doctor whether we can add the name to the list?
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"I'd be thrilled to be on the list! We have a lot of work to do to research this awful condition!"
Wow, wish I could meet a doc with that attitude. :o Failing miserably at finding an empathetic doctor willing to investigate properly here in Norway so far.
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POIS Doctors list has just been updated with a 13th Doctor, Dr Rachel Rubin ( thanks to Muon)
See the complete list at https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338 (https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338)
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POIS Doctors list has just been updated with a 13th Doctor, Dr Rachel Rubin ( thanks to Muon)
See the complete list at https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338 (https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338)
Thanks for the forum management Quantum.
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3 more doctors shared their contact info which is great. All from Indonesia and authors of this paper: Post-orgasmic Illness Syndrome: A Closer Look (https://e-journal3.unair.ac.id/index.php/iabj/article/view/34/16)
"Thank you for your information about this community. And yes, you can add me and my colleague to the list :) Hope this community can always help many people to have a better understanding about POIS.
Regards,
William"
Doctor's name
Contact information
- Department of Medical Biology, Faculty of Medicine and Health Sciences Atma Jaya Catholic University of Indonesia, Jakarta, Indonesia
- Andrology Specialist Program, Faculty of Medicine Airlangga University / Dr. Soetomo General Hospital, Surabaya, Indonesia
E-mail----------------------------------------------------------------------------------------------------------
Doctor's name
Contact information
- Department of Medical Biology, Faculty of Medicine Airlangga University, Surabaya, Indonesia
- Andrology Specialist Program, Faculty of Medicine Airlangga University / Dr. Soetomo General Hospital, Surabaya, Indonesia
- Ferina Hospital - Center for Reproductive Medicine, Surabaya, Indonesia
E-mail
- cennikon.pakpahan@fk.unair.ac.id
-----------------------------------------------------------------------------------------------------------------------
Doctor's name
Contact information
- Andrology Specialist Program, Faculty of Medicine Airlangga University / Dr. Soetomo General Hospital, Surabaya, Indonesia
- Raditya Medical Center, Depok, Indonesia
E-mail
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13 -Doctor's name: Jia Yin, MD, Allergy Doctor/Professor
President of Allergy Department, Peking Union Medical College Hospital. President, Chinese Medical Doctor Association - Allergy Department
Contact Information: Peking Union Medical College Hospital, Beijing, China, 100032
Office Phone: +86 10 69156114
Email: doctoryinjia@163.com
Website：http://ims.pumch.cn/doctor/detail/4573.html
POIS article(s) published: Postorgasmic illness syndrome (POIS) in a Chinese man: No proof for IgE-mediated allergy to semen https://sci-hub.se/10.1111/jsm.12813
Other Information: She reported the first POIS patient in China and has built up a team to research POIS
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Thanks for sharing this zzzzzz.
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13 -Doctor's name: Jia Yin, MD, Allergy Doctor/Professor
President of Allergy Department, Peking Union Medical College Hospital. President, Chinese Medical Doctor Association - Allergy Department
Contact Information: Peking Union Medical College Hospital, Beijing, China, 100032
Office Phone: +86 10 69156114
Email: doctoryinjia@163.com
Website：http://ims.pumch.cn/doctor/detail/4573.html
POIS article(s) published: Postorgasmic illness syndrome (POIS) in a Chinese man: No proof for IgE-mediated allergy to semen https://sci-hub.se/10.1111/jsm.12813
Other Information: She reported the first POIS patient in China and has built up a team to research POIS
Revised the information. Please use the version below, thanks!
14 -Doctor's name: Jia Yin, MD, Allergy Doctor/Professor
President of Allergy Department, Peking Union Medical College Hospital. President, Chinese Medical Doctor Association - Allergy Department
Contact Information: Peking Union Medical College Hospital, Beijing, China, 100032
Office Phone: +86 10 69156114
Email: doctoryinjia@163.com
Website：http://ims.pumch.cn/doctor/detail/4573.html
POIS article(s) published: Postorgasmic illness syndrome (POIS) in a Chinese man: No proof for IgE-mediated allergy to semen https://sci-hub.se/10.1111/jsm.12813
Other Information: Professor Yin reported the first POIS patient in China and has built up a team to research POIS. She is actively recruiting patients who can go to Beijing to have an appointment with her. Please contact Professor Yin via email or make an appointment via Peking Union Medical College Hostpital.
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13 -Doctor's name: Jia Yin, MD, Allergy Doctor/Professor
President of Allergy Department, Peking Union Medical College Hospital. President, Chinese Medical Doctor Association - Allergy Department
Contact Information: Peking Union Medical College Hospital, Beijing, China, 100032
Office Phone: +86 10 69156114
Email: doctoryinjia@163.com
Website?http://ims.pumch.cn/doctor/detail/4573.html (http://ims.pumch.cn/doctor/detail/4573.html)
POIS article(s) published: Postorgasmic illness syndrome (POIS) in a Chinese man: No proof for IgE-mediated allergy to semen https://sci-hub.se/10.1111/jsm.12813 (https://sci-hub.se/10.1111/jsm.12813)
Other Information: She reported the first POIS patient in China and has built up a team to research POIS
Revised the information. Please use the version below, thanks!
14 -Doctor's name: Jia Yin, MD, Allergy Doctor/Professor
President of Allergy Department, Peking Union Medical College Hospital. President, Chinese Medical Doctor Association - Allergy Department
Contact Information: Peking Union Medical College Hospital, Beijing, China, 100032
Office Phone: +86 10 69156114
Email: doctoryinjia@163.com
Website?http://ims.pumch.cn/doctor/detail/4573.html (http://ims.pumch.cn/doctor/detail/4573.html)
POIS article(s) published: Postorgasmic illness syndrome (POIS) in a Chinese man: No proof for IgE-mediated allergy to semen https://sci-hub.se/10.1111/jsm.12813 (https://sci-hub.se/10.1111/jsm.12813)
Other Information: Professor Yin reported the first POIS patient in China and has built up a team to research POIS. She is actively recruiting patients who can go to Beijing to have an appointment with her. Please contact Professor Yin via email or make an appointment via Peking Union Medical College Hostpital.
Thanks for the information, zzzzzz. I am glad to confirm that Dr Jia Yin have been added at #14 of our POIS Doctors list:
14-Doctor's name: Jia Yin, MD, Allergy Doctor/ProfessorPresident of Allergy Department, Peking Union Medical College Hospital. President, Chinese Medical Doctor Association - Allergy Department
Contact information : Peking Union Medical College Hospital,Beijing, China, 100032
Office Phone: +86 10 69156114
Email: doctoryinjia@163.com
Website: http://ims.pumch.cn/doctor/detail/4573.html (http://ims.pumch.cn/doctor/detail/4573.html)
POIS article(s) published : Postorgasmic illness syndrome (POIS) in a Chinese man: No proof for IgE-mediated allergy to semen https://sci-hub.se/10.1111/jsm.12813 (https://sci-hub.se/10.1111/jsm.12813)
Other information : Professor Yin reported the first POIS patient in China and has built up a team to research POIS. She is actively recruiting patients who can go to Beijing to have an appointment with her. Please contact Professor Yin via email or make an appointment via Peking Union Medical College Hospital.
--
If there are any updates to be done, please do not hesitate to contact me.
( For anyone who wants to see the whole POIS Doctors list, it is found at the top of this thread, at https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338 (https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338) )
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Hey guys, Awesome to have a list, but on the other hand I think we need to make some kind of campaign in the medical community to raise interest in helping us. We should have at least one doctor per 5,000,000 population. So in some countries that will be 1 doctor and in America that will be close to 1 per every state. That is just an arbitrary goal, but the main thing is to brainstorm how we could recruit more onto the list of interested doctors. I?ve have called many over the years and found some interest but mostly got the brush off. I started with Prostatitis doctors, but a lot of them are only interested if they could make money off of expensive procedures. If we could get serious interested they could pool their resources and make small case studies with groups of us..
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https://twitter.com/drrachelrubin/status/1407425529309978624
I gave her contact info of Dr. Theoharides and vice versa. We need some experts on this.
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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*
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Thanks, hardhead, keep us updated. I wish you to be able to see her sometimes in the future.
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Thanks to Adrian920, who have sent me the information, a new POIS Doctor has been added to the list, Dr Kam Mann:
15-Doctor's name: Kam Mann, MD, Physician in Andrology, MBBS MRCP MRCGP
Contact information : BMI Sarum Road Hospital, Sarum Road, Winchester, Hampshire, England SO22 5HA and also International Andrology London ,78 Seymour Place, London United Kingdom ,W1H 2EH
Email: unknown
Website(s): https://www.wessexandrology.com/about-the-team (https://www.wessexandrology.com/about-the-team) , https://london-andrology.co.uk/medical-experts/dr-kam-mann/ (https://london-andrology.co.uk/medical-experts/dr-kam-mann/) and https://www.bmihealthcare.co.uk/consultants/kam-mann#aria-panel-1/ (https://www.bmihealthcare.co.uk/consultants/kam-mann#aria-panel-1/) ( there is a "Chat with Us" link at the top right of this webpage, in order to get information)POIS article(s) published : He presented a POIS Case Study at The British Society for Sexual Medicine Annual London Conference, in 2018 http://www.bssm.org.uk/wp-content/uploads/2018/04/PROGRAMME-MAY-11TH-RSM.pdf (http://www.bssm.org.uk/wp-content/uploads/2018/04/PROGRAMME-MAY-11TH-RSM.pdf)
Other information : Dr Mann is an experienced Men’s Health Physician with a specialist interest in Sexual Medicine
I have sent an e-mail to one of his clinics, so maybe I will be able to refine the contact information for him.
See the complete list at https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338 (https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338)
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Prof. Piotr Jedrzejczak, MD, PhD, Division of Reproduction
Poznan, Poland
gynecologist/andrologist
contact, +48601820212
Wrotynska-Barczynska, J., Swat, E., Berger, A., Pawelczyk, L., & Jedrzejczak, P. "Intensified Hyposensitization Is an Effective Treatment of Postorgasmic Illness Syndrome (POIS)." Sexual Medicine 10.2 (2022): 100474. (https://www.sciencedirect.com/science/article/pii/S2050116121001549)
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Dr. Rubin started her own practice. Here is the updated info (Quantum):
Rachel S. Rubin MD
Urologist and Sexual Medicine Specialist
Assistant clinical professor in Urology at Georgetown University Hospital
6171 Executive Blvd
Rockville, MD 20852
p: 202-888-6731
f: 202- 851-5739
email: info@rachelrubinmd.com
website: rachelrubinmd.com
twitter:@drrachelrubin
instagram: @drrachelrubin
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Ok, Muon, added.
Do you know about the languages he speaks ? Polish of course, and English, I suppose ?
Prof. Piotr Jedrzejczak, MD, PhD, Division of Reproduction
Poznan, Poland
gynecologist/andrologist
contact, +48601820212
Wrotynska-Barczynska, J., Swat, E., Berger, A., Pawelczyk, L., & Jedrzejczak, P. "Intensified Hyposensitization Is an Effective Treatment of Postorgasmic Illness Syndrome (POIS)." Sexual Medicine 10.2 (2022): 100474. (https://www.sciencedirect.com/science/article/pii/S2050116121001549)
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Updated !
Dr. Rubin started her own practice. Here is the updated info (Quantum):
Rachel S. Rubin MD
Urologist and Sexual Medicine Specialist
Assistant clinical professor in Urology at Georgetown University Hospital
6171 Executive Blvd
Rockville, MD 20852
p: 202-888-6731
f: 202- 851-5739
email: info@rachelrubinmd.com
website: rachelrubinmd.com
twitter:@drrachelrubin
instagram: @drrachelrubin
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Do you know about the languages he speaks ? Polish of course, and English, I suppose ?
No idea, I guess English (based on email communication) and Polish?
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Please give me someone for India.
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Please give me someone for India.
The nearest to you in the list is from Pakistan. You can ask him if he knows a Doctor in India knowing about POIS:
12 -Doctor's name: Dr Khaleeq ur Rehman ( Urologist )
Contact information : 14- Abu Baker Block New Garden Town, Lahore, Lahore, Pakistan
Phone: + 042 32500989
e-mail: info@hameedlatifhospital.com (info@hameedlatifhospital.com)
Website: http://www.hameedlatifhospital.com/doctor_departments/urology-lithotripsy/ (http://www.hameedlatifhospital.com/doctor_departments/urology-lithotripsy/)
POIS article(s) published : -
Other information : He speaks English and Urdu. He has treated at least one patient with presumed success ( with 5mg prednisolone 4 hours before O, see https://www.reddit.com/r/POIS/comments/if2ssc/on_the_way_to_recovery_thanks_to_my_brilliant/ (https://www.reddit.com/r/POIS/comments/if2ssc/on_the_way_to_recovery_thanks_to_my_brilliant/)
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Please give me someone for India.
You could try to contact medical organizations in India or ask this question to an online doctor.
https://www.sehat.com
If you find one you can add it to the list.
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POISers from India could ask this doctor whether he wants to be on the list.
Post Orgasmic Illness | Dr. Kelkar (MD, MBBS (https://www.youtube.com/watch?v=CqTsNsLlQBI) (Dr. Deepak Kelkar)
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Cross posting:
Had a medical appointment with Dr. Michael Lowy at Sydney Men's Health Clinic in Double Bay (https://www.sydneymenshealth.com.au/). He was pleasantly surprised about the fenugreek, garlic, gluten-free diet, and B-complex effectiveness of solving my POIS. Said that cases like this should be studied for science, unfortunately it is difficult to get funding given that POIS effects such a tiny group of the population.
He's seen an influx of POIS cases recently. (I believe there are lots of undiagnosed cases in the semen retention and nofap communities (r/semenretention r/nofap on reddit. We agreed that it is however difficult to discern between psychological guilt resulting from ejaculation and belief systems, and then actual physiological POIS types).
He said that the best/latest theory on POIS is that it is some kind of autoimmune condition.
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Thanks, Berlin!
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Just a reminder:
The POIS Doctors list itself is at the top of this thread, at
https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338
Please read the green notice just before the list - it is important to do so before contacting a POIS Doctor.
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Just a reminder:
The POIS Doctors list itself is at the top of this thread, at
https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338
Please read the green notice just before the list - it is important to do so before contacting a POIS Doctor.
Sent to 2023 POIS Study Research team.
Many thanks, Quantum!
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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?
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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 (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 (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 (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 (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 (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 (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.
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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 (https://healor.com/post-orgasmic-illness-syndrome)
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healor, nice, welcome to the forum!
Quantum can add you to the list in the first post.
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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
Website: https://semmelweis.hu/urologia/en/zsolt-kopa/ (https://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/ (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 (https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338)
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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
Website: https://semmelweis.hu/urologia/en/zsolt-kopa/ (https://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/ (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 (https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338)
Thanks, Muon & Quantum!
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Some German guy will apparantly see a doctor in Charité Berlin (https://en.wikipedia.org/wiki/Charit%C3%A9) 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!
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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
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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?
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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.
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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???????
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Hello,. Does anyone know of a doctor who speaks Spanish???????
https://revistasacademicas.cl/Upload/ArticulosPdf/schu_20210819142132_baa6f065-d151-4644-8c52-af22c8ce431e.pdf
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Qualcuno conosce un medico che parli italiano??🇮🇹🇮🇹 perfavore
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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 !
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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)
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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.
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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/
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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
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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 (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!
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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!
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New Dr on the list:
4 - Doctor's name: Dr Ahmed Mahmoud ( Endocrinology and metabolic diseases)
Contact information : Scientific coordinator of Andrological center / Male sexual dysfunction (Universiteit Gent) UZ Gent, Corneel Heymanslaan 10, 9000, Entrance 12, route 1450, 9th floor , Gent, Belgium
e-mail : endocrinologie@uzgent.be
website : https://www.uzgent.be/patient/zoek-een-arts-of-dienst/endocrinologie-en-stofwisselingsziekten/team/dr-ahmed-mahmoud (https://www.uzgent.be/patient/zoek-een-arts-of-dienst/endocrinologie-en-stofwisselingsziekten/team/dr-ahmed-mahmoud)
PHONE: 09 332 21 37
POIS article(s) published : -
Other information : You need a reference from your primary care physician in order to make an appointment with Dr Ahmed Mahmoud about POIS but you can also email him a letter with explaining your personal history about POIS, how it effects you, etc.
The Andrology Center of Ghent is a founding member of the “Belgian expert group for semen analysis” which provides ESHRE training every 1 or 2 years in semen analysis under supervision of the Belgian Institute of Public Health (Ahmed Mahmoud, followed by Kelly Tilleman).
Dr Ahmed Mahmoud is a colleague of the medical head of endocrinology Prof Guy T'Sjoen--
The Doctor who was at #4 is now retired, so I just put this new entry there
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New Dr on the list:
4 - Doctor's name: Dr Ahmed Mahmoud ( Endocrinology and metabolic diseases)
Contact information : Scientific coordinator of Andrological center / Male sexual dysfunction (Universiteit Gent) UZ Gent, Corneel Heymanslaan 10, 9000, Entrance 12, route 1450, 9th floor , Gent, Belgium
e-mail : endocrinologie@uzgent.be
website : https://www.uzgent.be/patient/zoek-een-arts-of-dienst/endocrinologie-en-stofwisselingsziekten/team/dr-ahmed-mahmoud (https://www.uzgent.be/patient/zoek-een-arts-of-dienst/endocrinologie-en-stofwisselingsziekten/team/dr-ahmed-mahmoud)
PHONE: 09 332 21 37
POIS article(s) published : -
Other information : You need a reference from your primary care physician in order to make an appointment with Dr Ahmed Mahmoud about POIS but you can also email him a letter with explaining your personal history about POIS, how it effects you, etc.
The Andrology Center of Ghent is a founding member of the “Belgian expert group for semen analysis” which provides ESHRE training every 1 or 2 years in semen analysis under supervision of the Belgian Institute of Public Health (Ahmed Mahmoud, followed by Kelly Tilleman).
Dr Ahmed Mahmoud is a colleague of the medical head of endocrinology Prof Guy T'Sjoen--
The Doctor who was at #4 is now retired, so I just put this new entry there
Quantum, thank you for creating this amazing repository of doctors willing to see POIS patients. It addresses one of the most critical challenges for POISers: finding a doctor - - any doctor! - - who UNDERSTANDS POIS!
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New Dr on the list:
4 - Doctor's name: Dr Ahmed Mahmoud ( Endocrinology and metabolic diseases)
Contact information : Scientific coordinator of Andrological center / Male sexual dysfunction (Universiteit Gent) UZ Gent, Corneel Heymanslaan 10, 9000, Entrance 12, route 1450, 9th floor , Gent, Belgium
e-mail : endocrinologie@uzgent.be
website : https://www.uzgent.be/patient/zoek-een-arts-of-dienst/endocrinologie-en-stofwisselingsziekten/team/dr-ahmed-mahmoud (https://www.uzgent.be/patient/zoek-een-arts-of-dienst/endocrinologie-en-stofwisselingsziekten/team/dr-ahmed-mahmoud)
PHONE: 09 332 21 37
POIS article(s) published : -
Other information : You need a reference from your primary care physician in order to make an appointment with Dr Ahmed Mahmoud about POIS but you can also email him a letter with explaining your personal history about POIS, how it effects you, etc.
The Andrology Center of Ghent is a founding member of the “Belgian expert group for semen analysis” which provides ESHRE training every 1 or 2 years in semen analysis under supervision of the Belgian Institute of Public Health (Ahmed Mahmoud, followed by Kelly Tilleman).
Dr Ahmed Mahmoud is a colleague of the medical head of endocrinology Prof Guy T'Sjoen--
The Doctor who was at #4 is now retired, so I just put this new entry there
Quantum, thank you for creating this amazing repository of doctors willing to see POIS patients. It addresses one of the most critical challenges for POISers: finding a doctor - - any doctor! - - who UNDERSTANDS POIS!
Thanks, Demo :)
This reference comes from a member who had a consultation with this doctor, but prefer to stay anonymous.
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New Dr on the list:
4 - Doctor's name: Dr Ahmed Mahmoud ( Endocrinology and metabolic diseases)
Contact information : Scientific coordinator of Andrological center / Male sexual dysfunction (Universiteit Gent) UZ Gent, Corneel Heymanslaan 10, 9000, Entrance 12, route 1450, 9th floor , Gent, Belgium
e-mail : endocrinologie@uzgent.be
website : https://www.uzgent.be/patient/zoek-een-arts-of-dienst/endocrinologie-en-stofwisselingsziekten/team/dr-ahmed-mahmoud (https://www.uzgent.be/patient/zoek-een-arts-of-dienst/endocrinologie-en-stofwisselingsziekten/team/dr-ahmed-mahmoud)
PHONE: 09 332 21 37
POIS article(s) published : -
Other information : You need a reference from your primary care physician in order to make an appointment with Dr Ahmed Mahmoud about POIS but you can also email him a letter with explaining your personal history about POIS, how it effects you, etc.
The Andrology Center of Ghent is a founding member of the “Belgian expert group for semen analysis” which provides ESHRE training every 1 or 2 years in semen analysis under supervision of the Belgian Institute of Public Health (Ahmed Mahmoud, followed by Kelly Tilleman).
Dr Ahmed Mahmoud is a colleague of the medical head of endocrinology Prof Guy T'Sjoen--
The Doctor who was at #4 is now retired, so I just put this new entry there
Quantum, thank you for creating this amazing repository of doctors willing to see POIS patients. It addresses one of the most critical challenges for POISers: finding a doctor - - any doctor! - - who UNDERSTANDS POIS!
Thanks, Demo :)
This reference comes from a member who had a consultation with this doctor, but prefer to stay anonymous.
I sent your post and my highlighted reply to all of our outside POIS Research partners!
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https://www.reddit.com/r/POIS/comments/1act60i/heres_some_information_i_compiled_over_a_couple/
They are diagnosing and treating POIS according to their own website. Located in Bonn, Germany.
https://www.ukbonn.de/andrologie-maennerkunde/#ablauf-der-behandlung
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I am in a treatment for P.O.I.S. by Prof. Dr. Beier (sexual medicine) at Charit? in Berlin.
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I have not contacted this doctor, perhaps forum members from India can ask him to join this list. Dr Pramod Krishnappa from Bangalore. https://www.youtube.com/watch?v=3PrAY5cSXnA
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I have not contacted this doctor, perhaps forum members from India can ask him to join this list. Dr Pramod Krishnappa from Bangalore. https://www.youtube.com/watch?v=3PrAY5cSXnA (https://www.youtube.com/watch?v=3PrAY5cSXnA)
Hi Muon,
Thanks for the link. I have found an email address for Dr. Krishnappa, at https://www.androneo.com/, and just emailed him to know if he wants to appear on our POIS Doctors list.
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I have not contacted this doctor, perhaps forum members from India can ask him to join this list. Dr Pramod Krishnappa from Bangalore. https://www.youtube.com/watch?v=3PrAY5cSXnA (https://www.youtube.com/watch?v=3PrAY5cSXnA)
Hi Muon,
Thanks for the link. I have found an email address for Dr. Krishnappa, at https://www.androneo.com/, and just emailed him to know if he wants to appear on our POIS Doctors list.
Thanks, Quantum, Muon!
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Do we have Russian members on this forum that want to contact ChairUrology and ask if we can add them to the list of doctors?
A video in Russian about POIS. I have not looked into Russian POIS papers (Do they exist?).
June 6, 2024 Post Orgasmic Illness Syndrome (POIS) (https://www.youtube.com/watch?v=zjHfiqIeJ7s) (Youtube Channel: ChairUrology)
https://cmiko.ru/scientific-activity/kafedra-urologii/
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https://www.cureus.com/articles/245945-post-orgasmic-illness-syndrome-a-case-report/#!/
Someone could ask Fahad K. Alanazi from King Saud Medical City, Riyadh, Saudi Arabia, to be registered on POIScenter’s list.
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https://www.cureus.com/articles/245945-post-orgasmic-illness-syndrome-a-case-report/#!/
Someone could ask Fahad K. Alanazi from King Saud Medical City, Riyadh, Saudi Arabia, to be registered on POIScenter’s list.
Muon: from our POIS research team - -
(I deleted my own post about this article)
“We’re always glad for POIS to get attention, but that [Cureus] is a predatory journal with a long history of retractions for fraud (e.g., main study falsely claiming ivermectin cured COVID):
https://retractionwatch.com/?s=cureus
This case might be fine, it doesn't mean everything in it is bad, but we don't think the journal is trustworthy historically.
Hopefully, we get more positive attention!”
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@demografx
There are a couple of other papers on the list (POIS paper archive thread) which I’m not happy about for several reasons. I’m still posting those, people may ignore papers they do not like.
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@demografx
There are a couple of other papers on the list (POIS paper archive thread) which I’m not happy about for several reasons. I’m still posting those, people may ignore papers they do not like.
Thx for explaining.
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https://www.cureus.com/articles/245945-post-orgasmic-illness-syndrome-a-case-report/#!/ (https://www.cureus.com/articles/245945-post-orgasmic-illness-syndrome-a-case-report/#!/)
Someone could ask Fahad K. Alanazi from King Saud Medical City, Riyadh, Saudi Arabia, to be registered on POIScenter’s list.
I have just sent him an email.
Unfortunately, many doctors do not answer my emails, like the last one you suggest in early May ( Dr Krishnappa did not answer at all).
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Unfortunately, many doctors do not answer my emails
That is normal.
https://www.reddit.com/r/POIS/comments/1act60i/heres_some_information_i_compiled_over_a_couple/
They are diagnosing and treating POIS according to their own website. Located in Bonn, Germany.
https://www.ukbonn.de/andrologie-maennerkunde/#ablauf-der-behandlung
Why is this not on the list yet? Have you seen the website Quantum?
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Can be contacted:
https://www.youtube.com/watch?v=VDz1ts1DIu0
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Unfortunately, many doctors do not answer my emails
That is normal.
https://www.reddit.com/r/POIS/comments/1act60i/heres_some_information_i_compiled_over_a_couple/ (https://www.reddit.com/r/POIS/comments/1act60i/heres_some_information_i_compiled_over_a_couple/)
They are diagnosing and treating POIS according to their own website. Located in Bonn, Germany.
https://www.ukbonn.de/andrologie-maennerkunde/#ablauf-der-behandlung (https://www.ukbonn.de/andrologie-maennerkunde/#ablauf-der-behandlung)
Why is this not on the list yet? Have you seen the website Quantum?
Contacted, no answer.
I prefer not to include a doctor on the list if I did not have explicit consent.
Even then, I already had a doctor who gave explicit content, and then, years later, told a member that she never asked to be on th list and was not involved in POIS anymore. So, for now, this mention in the list's thread will do, for this doctor.
Since I do not have much time for that currently, and that you seem very good at spotting potential POIS Doctors, feel free, Muon, to contact this doctor or any other doctor. Ask them if they give their consent to be on the list, and what contact information they want to appear on the list. That would be very helping. If you have any positive answer, forward thier email to me !
In case this could be of any help for you, here is an example of the emails I use to contact them:
"Dear Dr. XXXXXXXX,
I am a member of one the largest information and support forum for POIS, created in 2011, which currently has over 1500 members worldwide ( https://poiscenter.com/ (https://poiscenter.com/)).
One of our members shared the link to your POIS ^***case report/article/survey/***. I am glad that you are interested in POIS, which is not very well known, even by doctors. We are very thankful for your interest in our rare syndrome, and your efforts to make it known.
I wanted to let you know that our forum is always willing to help any researcher who wants to go ahead with a POIS project or a POIS study. In particular, we can help with subjects recruitment, which is not easy in the case of a rare syndrome. If you or another health professional you know would like our help in finding POIS subjects, do not hesitate to contact the forum adminnistrators team.
Also, since not that many specialists and doctors know about POIS, we maintain for our members, on our site, a list of doctors who know about POIS, are interested in POIS research and/or have already published an article on POIS, and are seeing POIS patients. You can see the current list at https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338 (https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338) . If you see POIS patients and would like to appear on this list, it will be my pleasure to add you. If so, just send me the contact information you would like to see appear for you on this list.
As a final note, our forum gathered enough money to fund a POIS study, through a grant awarded and managed by the National Organization for Rare Disorders ( NORD). The study was supposed to start last year, but was postponed due to the pandemic. Hopefully, it will start in the coming months.
Again, thank you for your interest in POIS research,
Best Regards,
"
If any other member wants to help and contact a potential POIS Doctor, please forward to me any positive emailed answer.
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For info:
10 -Doctor's name: Dr De Boer Mannen Gezondheid ( urologist)
The website https://www.dbmgz.nl/deboer/contactpagina (https://www.dbmgz.nl/deboer/contactpagina) states that Dr. De Boer has retired and his office is going to be closed.
New patients are not accepted, however existing patients of the office will be helped for a couple of months.
I don't know the date this info was put on the website, or if another doctor or colleague is taking over his duty in helping POIS patients.
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DR Raj Singh with healor.com will see pois patients. He does treats with ayudervic and all other solutions. He is up to date about omalizunab treatment
https://healor.com/post-orgasmic-illness-syndrome/
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For info:
10 -Doctor's name: Dr De Boer Mannen Gezondheid ( urologist)
The website https://www.dbmgz.nl/deboer/contactpagina (https://www.dbmgz.nl/deboer/contactpagina) states that Dr. De Boer has retired and his office is going to be closed.
New patients are not accepted, however existing patients of the office will be helped for a couple of months.
I don't know the date this info was put on the website, or if another doctor or colleague is taking over his duty in helping POIS patients.
Thanks Anonimo, I have edited his entry !