141

New Theories / Re: Post Orgasmic Illness Syndrome (POIS)

« on: 10/11/2008 03:25:08 »

and great to see you back!

Thanks Demografx, its good to feel involved again. I hope I can stick around long enough in one stint this time to make a contribution even a hundredth as significant as those made by some of the regular writers on this forum who are making giant leaps for POIS sufferers. (Of course everyone who posts makes a significant contribution just by telling their own stories and brainstorming in their ideas).

Hi Mellivora, you are very rare here! If you didn't read all the precedent messages one important thing is Counterpoints's form here : http://pois.olympe-network.com/
Also I'm not sure if you have seen Girlwind's video :

Good luck.
Posted on: Today at 00:37:17Posted by: martin88 

This is a great post for me Martin88 -  thanks for taking time to update me and bring the questionnaire and finished video to my attention.

Counterpoints you've spent a lot of time and consideration putting the questionnaire together (helped by others on the forum) - thank you. It may take me a little while to complete but it looks great and I think  it is an important step.

Girlwind you've done a fantastic job with the video  - its a terrifically concise and accessible summary of what POIS, how it affects sufferers, and the current state of play with research. Thanks!

I've spent a good while reading posts today and I'm still only on page 52 (admittedly under the influence of POIS so I'm probably a bit slow). It really emphasises how active and determined this forum is and how much support we gain from visiting it.

142

New Theories / Re: Post Orgasmic Illness Syndrome (POIS)

« on: 09/11/2008 16:02:14 »

Also very quickly.....
Last time I was posting I said I'd had a reply from the International Society for Sexual Medicine (ISSM). One of the doctors there was going to talk to Dr Waldinger about POIS. I see since then that Dr Waldinger has been in touch with the forum which is great news. I totally understand that the time he can spend on POIS is limited but its terrific to know he is aware of us. Everyone on this forum is doing a great job in chasing this illness down.

143

New Theories / Re: Post Orgasmic Illness Syndrome (POIS)

« on: 09/11/2008 15:50:36 »

Wow I've missed a lot on this forum since my last post. I can only apologise for not posting more regularly. I'm always impressed by the depth of contributions that forum members make. I wish I had some ground breaking news to post but unfortunately I don't. I appeared to have a little success with sporadic raw garlic eating after reading John21's positive experiences with garlic. My symptoms seemed reduced and on 2 occasions only lasted 2-3 days rather than the usual 5-7. Usually days 3 and 4 after orgasm are my worst days but by day 3 I was starting to feel ok again. I ate one clove a day for a few days, had a couple of days off from eating garlic (smelly breath is an issue!) and then had an orgasm and ate a garlic clove immediately after and another one the follwoing day. Its not possible to say the garlic definitely helped as this certainly wasn't a controlled experiment and of course its only a couple of events. Other times, taking garlic after orgasm (without any garlic beforehand) seems to have had little or no effect. Even if garlic does help I would guess its best to take it regularly over a period of time rather than just once after an orgasm. Of course I'm just speculating. I'm actually still a little optimistic that garlic may be able to help alleviate my symptoms to some extent if taken regularly. There are many pages of this forum for me to read since my last post and I'm sure others have written more about garlic and other things there - I look forward to catching up with your  experiences. I travel a bit and sometimes work funny hours and don't always have internet access.

In line with counterpoints and John21, I can say that physical exhaustion is not a symptom for me, mental exhaustion, brain fog, difficulty concentrating, difficulty in social situations etc is by far the most prominent and distressing aspect for me.

144

New Theories / Re: Post Orgasmic Illness Syndrome (POIS)

« on: 27/07/2008 12:33:58 »

Quote from Girlwind:

I've been working on the text for my youtube PSA/film this weekend and borrowed a few phrases from you.
(I trust that you don't mind.)

Hi Girlwind - of course I don't mind you quoting from my letter - glad it helps. And I totally understand you wanting to focus on the film by yourself - I often prefer to work alone creating such things. Unfortunately I don't know any internet sources of free, public domain music off the top of my head but googling things like 'public domain music' seems to raise a few possibilities. I'll ask some friends who might know more about this.

Garlic and candida :
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=180587

Great link B_Jim, thanks

Welcome bola bola, glad you found us.

Just a reminder: I'll be away from home most of the next couple of weeks with only limited internet access but will post when I can.

145

New Theories / Re: Post Orgasmic Illness Syndrome (POIS)

« on: 27/07/2008 12:21:05 »

I received a reply from a member of the International Society for Sexual Medicine. I would have preferred to have emailed you all the reply rather than post it here in public but I don't see a way to easily email all members of a particular forum. Do you know if this is possible? In the meantime, here is the reply which I hope the author doesn't mind me posting on the forum.

"Thank you for your e-mail. I have seen men with this bothersome problem and I certainly acknowledge the considerable distress that the condition can cause. I will be seeing Marcel next week and will speak with him about his knowledge of current research and clinical practice in this field. As you probably know, his main focus is currently on premature ejaculation, but he should still know who is currently interested.

I will have a look at your forum, too."

It's good to have some interest from ISSM. I think its important to bare in mind that these are all busy folk with full-time jobs without putting in extra time into researching pois. I think our best bet at the moment is to keep reaching out to as many people as possible to raise awareness of the syndrome - the more people are talking about it and the more cases of pois that are found, the more likely it is that someone will be able to secure funding and time to research it.

146

New Theories / Re: Post Orgasmic Illness Syndrome (POIS)

« on: 27/07/2008 12:04:34 »

I had an NE Monday night. It is now Day 6 and I have had absolutely no symptoms. I have been eating raw and cooked onions and garlic each day (a clove of garlic and approx 1cm slice of onion, + cooked onion and garlic with my supper) plus I have also been eating daily some flax oil/cottage cheese mixture (2tbsp oil + 4tbsp cc)["Budwig diet"].

Wow John21 that’s great. I do hope it continues to work for you. I’m sure we’re all eating garlic cloves and onion and surfing the internet for Budwig diet details – I know I am! Like girlwind, I’d like to know how more about the other things you are eating and how rigidly you are adhering to the Budwig diet. I found this link http://www.cancertutor.com/Cancer/Budwig.html and I see that with this diet one should avoid:

Sugar
All animal fats
All meats
Margarine
Butter
Salad dressing oils- exception extra virgin olive oil and balsamic vinegar or lemon
Foods high in Preservatives

Have you cut all those things out of your diet as well as taking your dose of cottage cheese and flax oil?

Throughout all my time with POIS (about 11 yrs) I have had probably two occasions when emissions resulted in almost no symptoms. I was never able to explain why. Perhaps, at the time I was by chance eating the right combination of foods. It’s very early days of course but I really hope these diet experiments amount to something for all of u. Please keep us posed John21, thanks.

I am increasingly interested in the possible link between candida and pois. I see that one symptom of candida is an itchy anus, I have from time to time over the last couple of years had this and also a couple of years ago had a skin fungal infection on my inner thighs which was treated with some antifungal cream (eventually, except for a minor reoccurrence a few months later, the cream  seems to have done the job although I also moved abroad for a time in that period which resulted in a slight change of diet (I’d say better diet) and climate so its difficult to say!). Anyway I’m wondering if anyone else here has suffered itchy anus or skin fungal infection which might be eveidence for a candida link.  What I would say though is that these yeast infection symptoms only cropped up for me in the last 2 1/2 years and I have had pois much longer. Perhaps if they are related to pois and they are caused by candida, maybe candida is more a side effect of pois than the underlying cause. I don’t know. I guess it would make sense for me to get tested for candida infection. In the meantime – garlic and onion!

147

New Theories / Re: Post Orgasmic Illness Syndrome (POIS)

« on: 25/07/2008 22:14:05 »

Hi everyone,
I'm back home for a couple of days and look forward to properly catching up with and responding to the week's  postings this weekend.

148

New Theories / Re: Post Orgasmic Illness Syndrome (POIS)

« on: 20/07/2008 14:39:05 »

I have written some letters. I feel like we should ideally have a separate place for releasing details of people we have written to to protect their privacy and to prevent them being inundated with letters (hence my suggestion to have a password protected section of a forum for members of the forum only if we end up making a new forum). However, for the time being  shall present the information here as others have done to prevent members of this forum at least contacting the same people:

(1)
I found this paper:
http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ArtikelNr=99840&Ausgabe=232878&ProduktNr=223864
and although I could only access the abstract it appears to give an overview of sexual symptoms that can be observed with endocrine diseases. It is also relatively recent (2007). I wrote to the corresponding author Emmanuele A.Jannini, Course of Endocrinology and Medical Sexology Department of Experimental Medicine, University of L'Aquila Coppito, Italy. Although the letter I wrote was tailored specifically to Mr Jannini, it is a variation of a letter I have sent elsewhere (copied below).

(2)
I have written to the committee and senior members of the International Society for Sexual Medicine as detailed on their website. http://www.issm.info/ I sent the following letter which you are welcome to borrow bits from (also see letters written by others such as Counterpoints, Girlwind, Demografx, B_Jim). We need to be careful to keep a note of who have written to as these details are potentially easy to overlook in our forum now that there are so many pages of it.

Dear ISSM members,
 
I am writing on behalf of over 50 people on an internet forum who all suffer from a virtually unknown condition which gives us crippling symptoms following orgasm (see more detailed description below). Searching elsewhere on the web suggests there are many more sufferers and there must be a significant number who have not yet spoken of their condition on the internet. I found your contact details on the ISSM website.
 
Our condition appears only to have been described by Dr Marcel Waldinger of Leyenburg hospital in 2002 and he classified it then as Post Orgasmic Illness Syndrome. Unfortunately Dr Waldinger appears now to have moved on from his research into this condition and those of us who were in contact with him have now lost contact. In light of your senior positions within the ISSM, I am writing to you to make you aware of our syndrome and I hope that you will pass this information on to your colleagues. We really need to find a professional who can investigate our condition and find its underlying cause and help us find a cure or at least manage it better. I realise you must be very busy but I would be grateful if you could take some time to look at our forum. Any feedback and advice on how we should proceed would be gratefully appreciated. Our doctors have not been able to help us since essentially this is an unknown condition and requires much research.
 
The web address for our forum is here: http://www.thenakedscientists.com/forum/index.php?topic=6576.0
There are many pages of detailed information here including our symptoms, experiences, medications we have tried etc. Realising that our forum discussion is very lengthy we are now working towards presenting this knowledge in a more organised way, perhaps via a dedicated website.
 
The symptoms from which we suffer last for up to two weeks (most commonly 3-7 days) after orgasm and the most prominent are extreme tiredness, difficulty concentrating, loss of speech fluency and cloudy mindedness. As well as this “brain fog”, members of our forum suffer other symptoms to varying degrees after orgasm including diarrhoea, constipation, muscle aches, sweatiness, feeling cold, feeling hot, restlessness, anxiety, depression. The symptoms from which we suffer are far reaching and are preventing otherwise intelligent and motivated people from working and socialising as they would like to. The impact of this condition on our lives is vast. When the symptoms wear off, we feel fine – until the next orgasm (which can be via nocturnal emission, masturbation or sex with a partner).
 
We are trying the best we can to educate ourselves as to the workings of the human body and you will see we have various quite detailed ideas on what the mechanisms of our symptoms could be. But we are not endocrinologists or neurologists (though some of us have scientific backgrounds) and a professional investigation is sorely needed. It would no doubt lead to publishable work too since this is such a little known condition. If there are 50 people on our forum, there must be a large number of others with the same condition who have not yet come forward. New sufferers are finding our forum all the time.
 
I realise research needs funding. I would be grateful for any advice you can give us on how to proceed, anyone you can recommend we get in contact with, any exposure you could give our condition to ISSM members and of course for any direct assistance you may be able to give.
 
Thank you for your time in reading this letter,
Best regards,

149

New Theories / Re: Post Orgasmic Illness Syndrome (POIS)

« on: 20/07/2008 09:50:57 »

Hi all,
It’s been a long time since my last post, sorry about that. I work away from home a lot and also I guess I have just been trying to get on with things and cope the best I can though have often thought of you guys and the forum. But…WOW I have missed out on a lot here. I spent hours on Friday and yesterday trying to read up on what I have missed, no mean feat under the influence of pois day one and two. Well done everyone for keeping this forum going. I’m kicking myself a bit for not keeping up to date with it more and contributing more. I feel like it will take a week of constant work to digest all the postings. Demografx I see you are doing a great job as forum moderator. Welcome to everyone who has found the forum since I was last contributing.

Reading through the posts it is obvious that the forum has gathered a more powerful momentum of late and the emphasis has shifted as I always hoped it would from mostly swapping and collecting symptoms and theories (important in itself of course) to include a more proactive approach of heightening awareness, reaching out to more fellow sufferers and finding some researchers to help us. I made a list of all the contributors and I make it that we have 51 pois sufferers on this forum (in the process I discovered that B_Jim is keeping a similar list on page 11 of the forum here http://www.thenakedscientists.com/forum/index.php?topic=6576.250

There are some interesting ideas coming up on how to encourage medical researchers to investigate us. I think posting an advert in the Journal of Endocrinology is a good plan though not cheap. I expect we would need a half page advert to properly catch people’s attention. I would like to add my name to the list of people interested in contributing to an advert. Before submitting an advert here I’d also like to investigate other potentially relevant journals though it does defintiely sound like one of the best options.

A while ago I pondered the idea of trying to get a newspaper to run a story on our condition. Of course they did so in 2002 when Waldinger’s research hit the headlines but that was quite tabloidy. There are definitely negatives to doing something like this, it might attract pranksters to this forum for instance and I wonder how easy it would be to stay anonymous. The motivation would be to make pois higher profile and therefore to increase the chances of someone getting funding for some research. It could easily be very short-lived publicity though. I’m not sure if it is the right time just yet but who knows.

Girlwind I think your youtube idea is a really interesting alternative just now. As has been discussed the metadata would have to be done carefully and part of me wonders how people will find it but I see the CFS video you linked to has had nearly 40000 views and I would never underestimate the power of the internet. I have quite a lot of film-making experience and some photoshop skills. If you’d like to collaborate with making your film or just bounce ideas around do get in touch (if you work on these things better on your own that's fine too of course!).

A pois website is a good idea and this is also something I would be happy to get involved with. Certainly there is a lot of information on our forum now which would be more accessible and easier to evaluate and refer to if it was more organised. I have just a little experience designing websites and advising with website design (but really very few projects). I don’t have significant coding experience. I know there are a lot of free website templates on the web, including templates for forums. Perhaps we could save time by using a template. There’s no doubt that we have more than enough information to produce a useful website for anyone wanting to find out more about pois. I think the trick with websites is to make them easy to navigate with nothing too fancy and probably no Flash or similar.

Some potential website sections I might suggest would be (sparx, counterpoints and others have suggested some already)

-Description of POIS - list of the most important symptoms plus other known symptoms

-Case studies: description of each of our experiences with pois (would be anonymous)

- Questionnaire for anyone who suspects they have pois – downloadable or one that can be filled in online and entered into a database

-Overall results of our questionnaires

-Links – to other cases and information plus maybe to some sexual health organisations (no-one is affiliated with pois yet but maybe they will be)

-News

-Definition of terms – summaries or perhaps to save time, links to summaries, about different hormones and neurotransmitters plus other technical terms we refer to on the forum and what effects they are known to have and how they influence other hormones. This helps make postings more accessible and helps get newcomers up to speed.

-Things people have tried and any known success stories  - as has been much discussed this would need a disclaimer discouraging people from experimenting with drugs willy nilly. Like many others here I am always concerned when I read about people saying I’m going to try this or that. There are many side-effects documented for drugs affecting neuro-endocrine systems.

-girlwind’s video!

-A forum. Some forums have password protected sections. I wonder whether we should keep a list of researchers we have contacted in such a section to prevent them being inundated with emails etc. I think the present Naked Scientist forum should continue though how we would strike a balance between that and a new forum I'm not sure. Probably we would need to post a link from our Naked Scientist (ie this) forum to any new one we set up.

I see demografx has written to the Journal of Endocrinology exploring the possibility of getting a grant. I wonder if there is somehow a way of securing sponsorship from somewhere to fund our further investigations into pois and help recruit a researcher to look into the condition. Sorry that's just a thought at the moment!

I hope to contribute to our cause much more in future than I have so far managed. Last night I went to bed eager for today to arrive so I could get back to reading the forum and start contributing again. Unfortunately, I am due to be working away from home again for much of the next month but will definitely be sticking with this forum more and checking in when I can and contributing to the efforts that are underway.

It’s been said many times, including by myself but it is so great being able to talk to other people with pois who know what it is like to live with. I’m grateful to all of you for making yourselves known and sharing so much,

Best to everyone.

150

New Theories / Re: Post Orgasmic Illness Syndrome (POIS)

« on: 19/11/2007 11:45:39 »

Hi everyone, sorry I’ve not posted in a while. Welcome to all  who have joined the forum since my last post and thanks a lot for sharing. Chrisb I second Jim_B’s highlighting of your lethargy and derealisation -  it’s the biggest problem for me too. Imre you’re definitely not alone in having problems at work because of this. Its affected my work big time as well. B-Jim I also hope you’re feeling better now.

For me I think exercise definitely has a benefit. It doesn’t really help relieve symptoms but it can definitely help me purge the urge for a release and I recommend trying some exercise next time you really feel the need but can’t afford the after effects. That said, I’m on day one of POIS just now which is my first in a while.

I see that a couple of you are married. I know its not ideal but I find a little comfort in the fact you’re able to maintain a relationship even with POIS. I started seeing a great girl recently and told her about POIS from the start. She said she was willing to try and work around it. Its not the easiest thing to do but if you’re sure you’re getting involved with someone and you find out it’s a mutual thing then I definitely recommend being upfront about POIS from the beginning. Unfortunately now that relationship has ended all too quickly which is really hard just now, but I saw a glimmer of hope that things might just be possible, be positive if you find yourself in the same situation. Like me you may have put up some barriers to stop yourself getting hurt in these situations. At the end of the day I let down the barriers, perhaps too late and I’ve wound up hurting. But I still think its worth the risk if you find someone willing to try and understand POIS. For me, falling for a person like this is so so rare, I think you have to try. Believe there’s someone for you out there. If they find their way to you, I hope it works.

Best to everyone,

151

New Theories / Re: Post Orgasmic Illness Syndrome (POIS)

« on: 06/09/2007 16:08:59 »

Welcome to the forum jplewin, TracySt, and bobsie. Thanks for sharing your stories with us, it’s good to hear from you.
B_Jim you seem to have spent a lot of time researching possible explanations for our syndrome and you have given me renewed inspiration to do the same. I have some scientific/biological  background but not medical. The internet is a wonderful tool for us all.

Demografx, thanks for your continued updates on your Levitra trials etc. Having read a bit about Levitra I can’t explain why it might work but I’m definitely no expert and if its  helping you then that’s great! I was interested to read that you are on ADD stimulants since low dopamine may underlie ADD/ADHD and B-Jim’s sources suggest dopamine may be at the heart of many of our problems.

I remember reading somewhere that someone suffering POIS or at least sexual exhaustion, had hormone level tests before and after orgasm and was found to have normal hormone levels except for elevated prolactin (permanently elevated not normal post-orgasm refractory period). (I thought it was a post on this forum but now it seems not as I can’t seem to find it again at the moment). Anyway this is also interesting because prolactin seems to inhibit dopamine release. Not just that but prolactin could be related to some autoimmune problems (something I’ve only read briefly about so far but there seem to be a lot of references on the internet). So whilst we have these two theories of dopamine/serotonin  deficiency and POIS (autoimmune reaction), they could very well go hand in hand. But I’m just speculating and don’t have enough knowledge (yet!).

Personally, I’ve always seen a resemblance between my symptoms and an allergic reaction in the way I get pressure in my head and sinuses  - it just feels like some sort of allergic reaction. So Dr Waldinger’s POIS seemed to fit when I found out about it. But I wouldn’t really say it feels like flu and  I don’t get sweats or muscle ache. One thing I have long noticed is that I feel worse in the mornings than later in afternoon and evening. Our biological clocks are regulated in part by melatonin which interestingly is synthesized from tryptophan via one of our suspects, serotonin. Melatonin also has effects on the immune system.
I’m not suggesting at all that melatonin has much or anything to do with our condition but clearly the roles, interactions and balances between all these things – the various neurotransmitters and hormones is complex and there seem to be all sorts of possible knock on effects which are doubtless different in different people.

I’ve just been suffering another episode these past few days which has affected my work. It’s so frustrating. But its great to be able to talk about these things with people who understand what its like so thanks for your continued posts

B_Jim, Coffee and tea don’t work for me either in terms of alleviating tiredness. Infact sleep doesn’t seem to help much when I’m in a post-orgasm phase– I wake up feeling tired regardless of how much sleep I have.
I’m interested in hearing all you are able to tell about this Zoloft case!

We now have eight people on this forum (including myself) who have come forward with POIS or seemingly related conditions and I think the forum is evolving into a persuasive tool toward gaining wider recognition for our syndrome. I suggest we start (if you haven't already!)to make any sexual medicine professionals that we are in contact with aware of this forum thread to raise awareness. I have included the link to this thread in emails to two doctors well respected in sexual medicine  and I hope you are all ok with me taking this step. It seems to be all of our aims to raise awareness and get our conditions more widely researched. I'll let you know if I hear of any developments.

Best to all,

152

New Theories / Re: Post Orgasmic Illness Syndrome (POIS)

« on: 22/08/2007 13:01:36 »

Hi all,
Probably like the rest of you guys I surf the net periodically looking for info about POIS from which I suffer. Well done for being brave enough to post about it. I too was in touch with Dr Waldinger, including filling out a questionaire for his research but have long since lost contact with him as he doesn't reply to emails anymore. My POIS started after I had treatment for an overactive thyroid which then went underactive following radioiodine treatment - I now take thyroxine to correct my underactive thyroid. A therapist I saw managed to actualy speak to Dr Waldinger and he apparently thought the thyroid treatment could possibly have set the condition off. Does that make sense to anyone else? Dr Waldinger said my symptoms do match POIS symptoms. However, I see there seem to be quite a variety of POIS symptoms and I don't have all of them. The most frustrating aspect is the mental fog, extreme tiredness and reduced capacity to think clearly. In the beginning (10+yrs ago) this could last as much as a month after orgasm! I also had a pressure in my head that made it feel like my eyes were bulging out. Over the years it has become less severe (or at least doesn't last as long) and now it takes  around a week to recover. Needless to say this has had a detrimental effect on my social life and my work. I don't get the muscle pain some people describe but I can get loose stools (used to be diarhoea but usually not that bad now) and severe sore throat though generally I don't get that so bad either now. It's mostly the tiredness and diminished mental abiity which decreases confidence when I'm affected. I haven't yet found anything that I can say reduces symptoms but have read all your commments and ideas on this with interest. Two things have helped me. The first was when I learned about Dr Waldinger's research and that there was actually a name for the condition and it was recognised (all be it by few doctors). That makes it easier to talk about and of course there's the knowledge you're not alone. One of the biggest things though has been just remembering that its not my fault I suffer from this and to recognise that I do a pretty amazing job of coping with it, incredibly frustrating as it is. I was used to being a high achiever in life, or at least academically, until POIS hit me. Naturally I get down about it as anyone would. But I also know its not my fault that I have POIS and recognising that has, for me, been an important thing. I'm not sure of the best way to make this condition of ours more widely recognised and researched but I think that is what it needs. Lets try and club together and work towards that.
I'll check back here regularly and post other relevant stuff as I think of it or come across it. Thanks again for starting and contributing to this thread. I hope others who suffer POIS will find it.
all the best to you guys,
stay in touch