Meeting with Chief Physician in Sexual Medicine

[poisdk]

I hope you can help me answer some questions that might help all of us with POIS.

I have had POIS for 3-4 years but I did not know anything about POIS before last month. A couple of months ago I told my family doctor about my POIS and she sent me to a specialized department in a good hospital where I live. Initially I had an introductory "interview" with a doctor at the hospital with the purpose of finding the right specialized doctor for me. I told her everything I knew about POIS.

A few days ago the hospital invited me for a second appointment with two doctors of whom one is a specialist in sexual illnesses (like dr. Waldinger). I have this appointment in a few days. You can find some information about the doctor in the following links:

CV:
https://ikm.ku.dk/english/contact/ansatte/?pure=en%2Fpersons%2Fannamaria-giovanna-elena-giraldi(562f6342-fc0a-4953-83d4-7650af69afac)%2Fcv.html

Research output:
https://ikm.ku.dk/english/contact/ansatte/?pure=en%2Fpersons%2Fannamaria-giovanna-elena-giraldi(562f6342-fc0a-4953-83d4-7650af69afac)%2Fpublications.html

Note that she has made a lot of research within Sexual Medicine. This means that she might make some research on POIS if she finds it important. If I can give her some exclusive information that we have collected in the community about POIS that she can use in potential research, she might be motivated to make medical research on POIS.

This information could for instance be the "tendencies" and "cures" that helped most people in this and other POIS fora as on facebook and reddit. This lead to my questions; What is the strongest/best theories that we (POIS community + medical papers) have about POIS - why is it occurring? What evidence do we have from people having POIS - which "cures" or "semi-cures" have we found in the POIS community? Do we have some aggregate information from people reporting about POIS (for instance from surveys)? I know that there is a surveys now at poiscenter - do you have the results from this?

Thank you in advance. I hope that it will eventually help us all.

[Nas]

I hope you can help me answer some questions that might help all of us with POIS.

I have had POIS for 3-4 years but I did not know anything about POIS before last month. A couple of months ago I told my family doctor about my POIS and she sent me to a specialized department in a good hospital where I live. Initially I had an introductory "interview" with a doctor at the hospital with the purpose of finding the right specialized doctor for me. I told her everything I knew about POIS.

A few days ago the hospital invited me for a second appointment with two doctors of whom one is a specialist in sex illnesses (like dr. Waldinger). I have this appointment in a few days. You can find some information about the doctor in the following links:

CV:
https://ikm.ku.dk/english/contact/ansatte/?pure=en%2Fpersons%2Fannamaria-giovanna-elena-giraldi(562f6342-fc0a-4953-83d4-7650af69afac)%2Fcv.html

Research output:
https://ikm.ku.dk/english/contact/ansatte/?pure=en%2Fpersons%2Fannamaria-giovanna-elena-giraldi(562f6342-fc0a-4953-83d4-7650af69afac)%2Fpublications.html

Note that she has made a lot of research within Sexual Medicine. This means that she might make some research on POIS if she finds it important. If I can give her some exclusive information that we have collected in the community about POIS that she can use in potential research, she might be motivated to make medical research on POIS.

This information could for instance be the "tendencies" and "cures" that helped most people in this and other POIS fora as on facebook and reddit. This lead to my questions; What is the strongest/best theories that we (POIS community + medical papers) have about POIS - why is it occurring? What evidence do we have from people having POIS - which "cures" or "semi-cures" have we found in the POIS community? Do we have some aggregate information from people reporting about POIS (for instance from surveys)? I know that there is a surveys now at poiscenter - do you have the results from this?

Thank you in advance. I hope that it will eventually help us all.

Nice, good luck with the meeting and keep your expectations low.
So yes you need to get your doctor access to the survey recently done on POIS. You should also give her our test results thread in this forum (
https://poiscenter.com/forums/index.php?topic=2684.0 )
So here are the certains pretty much:
1-There is a cascade of symptoms after ejaculation, it is different from one person to another but there are commonalities and rarities.
2- After a week or so symptoms improve until the next ejaculation.
3- There is an immune reaction.
Other than that there are no solid proofs of anything. The main theory that I believe in is that there is an activation of Mast Cells during ejaculation that causes the symptoms. Member Muon on this forum showed that he had an elevation in Prostaglandin F2a which is a possible marker for POIS. I also did a WBC test and it didn't show any abnormalities, which indicates that we have an issue of mediators and not white blood cells count in blood.
Good luck!

[Quantum]

Hi poisdk,

The 2018 POIS Survey is not out yet, you can pm La_pet1te_mort about this - he is the one doing the survey.

If they are specialists in sexual medicine, they may already know about Waldinger articles, in particular, his latest review article on POIS.  You can find here a list of POIS scientific articles to give to your physicians, containing the Waldinger latest review article I mentioned above:
:
http://poiscenter.com/forums/index.php?topic=2392.msg20182#msg20182   

This post contains some advice, too, about what to expect from your appointment for POIS.

You ask about what method of relief have been found in the POIS community.  For that, see the POIS Types chart at http://poiscenter.com/forums/index.php?topic=2338.msg19448#msg19448 .  You can share this link with them if you want ( some POIS doctors already saw this chart and told me it was interesting )

[demografx]

poisdk, welcome to POISCenter!

[poisdk]

Thank you all for your answers, they are very useful! I am very glad that I found this forum.

Someone in the POIS forum at reddit told me that I could tell her, if it becomes relevant, that there is a research grant available for someone to study POIS. He said that the National Organisation of Rare Diseases (NORD) give the grant and that people at POISCenter know everything about it. I tried to look at their website and it seems like the grant can be up to 31.000 USD. However, I am not certain whether or not it is available for Danish (non-american) researchers as well? I ask this because I am living in Denmark.

[Nas]

Thank you all for your answers, they are very useful! I am very glad that I found this forum.

Someone in the POIS forum at reddit told me that I could tell her, if it becomes relevant, that there is a research grant available for someone to study POIS. He said that the National Organisation of Rare Diseases (NORD) give the grant and that people at POISCenter know everything about it. I tried to look at their website and it seems like the grant can be up to 31.000 USD. However, I am not certain whether or not it is available for Danish (non-american) researchers as well? I ask this because I am living in Denmark.

It'd be great if Doctors gave us some attention for once, they would help a lot in giving their solid advise and perhaps help us understand POIS by leading us in a much more scientific direction.

[poisdk]

Thank you all for your answers, they are very useful! I am very glad that I found this forum.

Someone in the POIS forum at reddit told me that I could tell her, if it becomes relevant, that there is a research grant available for someone to study POIS. He said that the National Organisation of Rare Diseases (NORD) give the grant and that people at POISCenter know everything about it. I tried to look at their website and it seems like the grant can be up to 31.000 USD. However, I am not certain whether or not it is available for Danish (non-american) researchers as well? I ask this because I am living in Denmark.

It'd be great if Doctors gave us some attention for once, they would help a lot in giving their solid advise and perhaps help us understand POIS by leading us in a much more scientific direction.

I completely agree. I think that the more time and energy we use in trying to reach out the specialists that can look at POIS the better.

[demografx]

Thank you all for your answers, they are very useful! I am very glad that I found this forum.

Someone in the POIS forum at reddit told me that I could tell her, if it becomes relevant, that there is a research grant available for someone to study POIS. He said that the National Organisation of Rare Diseases (NORD) give the grant and that people at POISCenter know everything about it. I tried to look at their website and it seems like the grant can be up to 31.000 USD. However, I am not certain whether or not it is available for Danish (non-american) researchers as well? I ask this because I am living in Denmark.

Yes, Danish researchers are most welcome, but the POIS Grant is planned to be awarded this month, so unfortunately the deadline for submission has passed.
https://poiscenter.com/forums/index.php?topic=2462.msg25642#msg25642

[Nas]

Thank you all for your answers, they are very useful! I am very glad that I found this forum.

Someone in the POIS forum at reddit told me that I could tell her, if it becomes relevant, that there is a research grant available for someone to study POIS. He said that the National Organisation of Rare Diseases (NORD) give the grant and that people at POISCenter know everything about it. I tried to look at their website and it seems like the grant can be up to 31.000 USD. However, I am not certain whether or not it is available for Danish (non-american) researchers as well? I ask this because I am living in Denmark.

Yes, Danish researchers are most welcome, but the POIS Grant is planned to be awarded this month, so unfortunately the deadline for submission has passed.
https://poiscenter.com/forums/index.php?topic=2462.msg25642#msg25642

Really hope the next team would base their research on Wldinger's findings. Perhaps a cultured test to figure out the reaction the blood has against semen.

[poisdk]

Thank you all for your answers, they are very useful! I am very glad that I found this forum.

Someone in the POIS forum at reddit told me that I could tell her, if it becomes relevant, that there is a research grant available for someone to study POIS. He said that the National Organisation of Rare Diseases (NORD) give the grant and that people at POISCenter know everything about it. I tried to look at their website and it seems like the grant can be up to 31.000 USD. However, I am not certain whether or not it is available for Danish (non-american) researchers as well? I ask this because I am living in Denmark.

Yes, Danish researchers are most welcome, but the POIS Grant is planned to be awarded this month, so unfortunately the deadline for submission has passed.
https://poiscenter.com/forums/index.php?topic=2462.msg25642#msg25642

Oh, I'm sad to hear that. On the bright side there will be some research in the near future. I hope that good researchers will get the grant. How long time did it take for the community to contribute the 31.000 USD?

[demografx]

Really hope the next team would base their research on Wldinger's findings. Perhaps a cultured test to figure out the reaction the blood has against semen.

Nas, I think that the researchers will be very aware of this, but please remind me after the announcement and we can contact them to make sure that they are at least knowledgeable about all previous findings.

Thanks for bringing it up.

[demografx]

On the bright side there will be some research in the near future. I hope that good researchers will get the grant. How long time did it take for the community to contribute the 31.000 USD?

poisdk, our forums began in 2007. We then started thinking seriously about sophisticated outside research
2-3 years later. Here’s Stefanie Putkowski’s plea to all of us at the Forum to do medical research on POIS when she was at NORD:
https://poiscenter.com/forums/index.php?topic=125.msg1042#msg1042

And then you can see the fundraising interaction here starting *approximately* with Habibou’s post here:
https://poiscenter.com/forums/index.php?topic=426.msg4839#msg4839

If you flip through this thread (Familiar Place), you’ll see when we finally raised the required $33,500. Since we’ve never calculated this timing of fundraising, please share your findings!