I went to the doctor: "First time i´ve heard about POIS"

[Observer]

Today i went to the doctor for first time to explain my POIS symptoms carrying Dr.Waldinger´s papers (Thanks Daveman  ) and a newspaper article about POIS. He told me that this was the first time that someone describes to him  postorgasmic syndrome and that he has never heard this in his profesional career(middle aged man in his 40´s). He said that i was leaving him, in exact words, "shocked"  and he told me that he will ask his colleagues about POIS and will tell me later. He said i should go to an allergist and i would require some medical analysis. I´m currently studying outside my hometown(but inside Spain mainland), and i will come back in 20 days so i would look there for some medical help.

 Moreover the next year i´ll be in Belgium, so he suggested me to look for spanish doctors in Belgium. I informed him about the symptoms and he listened me with an open mind. He believed that it could be an strong auto-immune reaction, but he said that it seems that i known more than him  so he couldn´t help me at this point. He was very interested in adding POIS to his personal database and wanted to know more about the syndrome.

I live in a city of more than 300,000 people and i was hoping that the doctor would have heard something similar of POIS.

[Samir]

Him not knowing about POIS doesn't surprise me at all.  This is a very new disorder that's not even on the map right now.  We know about it from the victim standpoint, but it's still not known at all in the medical community.

What is really encouraging is his interest in the disorder.  If just a fraction of the doctors worldwide did this, I think we'd know a lot more about it.

[sameer7777]

here where i live ..... they think i m crazy and depressed cause of some personal problem , they literally laugh at  me , F them .......
i am wondering if there is any one who have seen a doc which really understand us ?

[Samir]

You're in a different part of the world where the culture is different in relation to these types of things.  Do not let their views affect your own.  We are all individuals on some level, and some of us are just more unique than others.  You're not alone in this as there's a lot of us suffering from this.

[Observer]

I send an e-mail to the head of one of the most prominent spanish allergic clinics and[/flash] at the same time, the chief secretary of the Spanish Society of Allergy and Clinical Immunology based in Madrid. I have received the answer and he recognizes that it´s the first time that he has heard about POIS and that the issue is going to be discussed by his medical team in September( I send them Dr. Waldinger´s papers), and that i will receive an answer the same month if i could get help from there.

Fortunately, this person is a direct relative of my cousin´s wife(who is medic), so i would know forehand if i would have the possibility to be treated by them, or on the other hand, he could refer me to another colleagues.

I will keep you updated on this issue.

[Observer]

I send an e-mail to the head of one of the most prominent spanish allergic clinics and[/flash] at the same time, the chief secretary of the Spanish Society of Allergy and Clinical Immunology based in Madrid. I have received the answer and he recognizes that it´s the first time that he has heard about POIS and that the issue is going to be discussed by his medical team in September( I send them Dr. Waldinger´s papers), and that i will receive an answer the same month if i could get help from there.

I wrote in the document:
The symptoms that i get from an orgasm and the duration.
The methods i have found that are useful for relief on me and the things that worsen the POIS, to see if they can extract some conclusions.
The links to this forum and the NSF.
Links to Reuters article about POIS, an spanish news article about POIS.
Links to NIH and Rare Diseases.
Dr. Waldinger´s papers.
Remedies that are working on some members(like TRT on demografx)
I am open to any suggestion.

[Observer]

I send an e-mail to the head of one of the most prominent spanish allergic clinics and[/flash] at the same time, the chief secretary of the Spanish Society of Allergy and Clinical Immunology based in Madrid. I have received the answer and he recognizes that it´s the first time that he has heard about POIS and that the issue is going to be discussed by his medical team in September( I send them Dr. Waldinger´s papers), and that i will receive an answer the same month if i could get help from there.

I will keep you updated on this issue.

I have received the answer from my relative: She said that they are currently looking for the medical research of this syndrome, and they will contact the Dr.s(I supposed Dr.Waldinger and some others) who have worked on the issue. They are very interested on P.O.I.S. and will get in touch with me this September. The Dr. said that it seems that some of the symptoms are related to an allergy, but others not. They think this is worth investigating.

[Daveman]

Good work Observer!

I liked all that you put in the document. The two links of NORd and ORDR (NIH) should help a lot. There are other doctors in the collaborators database that you could reference as well.

[MrMoonJr]

I am having a really tough time in my path to finding a doctor who is knowledgeable in POIS. I live in Canada just outside of Toronto, and i was first reccomended to a urologist in my area. My urologist told me that he had heard of it briefly, and thought it had something to do with the blood-testicle barrier, but he was limited in his practice, so in turn reccomended me to the best allergist/immunologist in Toronto. I ended up going to the immunologist, only to find out she had never heard of it, we talked through my symptoms, and likewise she said it sounds a little like an allergy but not enough to be one. I showed her Dr. Walldinger's papers, but she did not see a controled test and she was skeptical that he didnt test people without a POIS symptomology. In the end, After providing her with so much evidence she is now in the process of sending me to a psychologist to see if it is mental... Im pretty unhappy, but Im going to send a letter or email to other immunologists and endocrinologists in Toronto to see if I can get real help

[Daveman]

That's a pretty typical situation.

Until we complete our research grant and have professional researchers, for once and for all do a proper analysys, we're not going to be able to get a much better response from our doctors.

Even if we had the solution in our hands and stuck it in their faces, without a professional approval we're screwed.

There ARE docotrs though that go out of their way. There are doctors that don't let their ignorance effect our lives. You have to keep plugging away.

Even here in Chile there's a doctor that does desensitizations, so have hope.

BTW I'm a Canadian her in Chile. From Vancouver.

[Observer]

I send an e-mail to the head of one of the most prominent spanish allergic clinics and[/flash] at the same time, the chief secretary of the Spanish Society of Allergy and Clinical Immunology based in Madrid. I have received the answer and he recognizes that it´s the first time that he has heard about POIS and that the issue is going to be discussed by his medical team in September( I send them Dr. Waldinger´s papers), and that i will receive an answer the same month if i could get help from there.

I will keep you updated on this issue.

I just received the answer from the doctor and i updated him about the excellent niacin results. He is interested to make me an allergy test of my semen and he contacted with a laboratory in order to do so, and will notice me on advance. I am very interested in doing this test, so i think i will have more news about this issue the coming months.