1

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

« on: 10/03/2011 12:28:34 »

Got my reply from Dr Goldeier, he does'nt know of any other Dr's that recognise POIS  []

Also I've found a couple of organisations that I would like to email regarding POIS giving them my personal experience and all the studies and reports by dr Waldinger etc.

Could I get some advice on wether to give them my own experience as it may not give a full representation of the condition ?, I might just give a short basic overview with the studies attached.

I'm going to keep looking to see if I can find anymore that may be worthwhile contacting, if nothing more than to raise awareness.

The two I've found are

http://www.raredisease.org.uk/index.html

http://www.nhsonline.net/main/

Edit

Found another

http://www.eurordis.org/

http://www.patient.co.uk/
  

2

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

« on: 08/03/2011 15:03:15 »

Can anyone point me in the direction of a Doctor in the UK who would be willing to prescribe me Testosterone, also has anyone compiled a list of Doctors who recognise POIS or are at least willing to give it some credibility. 

I'm begining the preparation of a WEB based database where we'll be able to go and enter or find such information. Should have a basic setup (no bells and whistles for now) in about a week.

Fantastic

3

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

« on: 08/03/2011 15:02:23 »

Can anyone point me in the direction of a Doctor in the UK who would be willing to prescribe me Testosterone, also has anyone compiled a list of Doctors who recognise POIS or are at least willing to give it some credibility. 

What are your test levels? I reached the end of my tether with the local NHS, my total testosterone was well under the reference range and my Bio-available test was 2.6-2.8 nmol/l with 2.5 nmol/l recognised, clinically as hypogonadism (with several tests), waiting for months on end for answers as to what they are willing to do for me, in the end I just gave up. The consultant was not even willing to discuss POIS and said the case reports don't suggest testosterone so it's a firm no. Very demoralising. Good luck with that.

My Test results were borderline so my Doctor said no, not even a short trial to see if it made any difference.

I'm having an absolute nightmare with the NHS, of the three Doctors/consultants I've seen none of them would give POIS or Dr Waldingers reports the time of day. I've had loads of tests done and everythings came back clear so I would have thought they would at least look into it as a possibility.

I've e-mailed Dr David Goldmeier asking if he knows of any Doctors closer to me that are willing to actually listen as travelling down to London at the moment is'nt an option.

Also how many of us suffer from PE, if we are indeed allergic to our sperm would the body react by getting it out of your system as quickly as possible, just a thought.

4

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

« on: 08/03/2011 12:47:17 »

Can anyone point me in the direction of a Doctor in the UK who would be willing to prescribe me Testosterone, also has anyone compiled a list of Doctors who recognise POIS or are at least willing to give it some credibility. 

5

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

« on: 02/03/2011 22:37:11 »

Maybe it's interesting to do the skin pr.ick test on a man who doesn't have POIS. But with the semen of a man with POIS. Then you can exclude that it is the semen.
Or inject semen of a man without POIS into a man with POIS.

Eeeiiiooouuuu!

Edit:
Heh, heh, let's see, how would that go??

Hi, "Bill", hey I've got some of my semen here, I thought it would be a great idea if maybe I could inject you with it heh, heh. POW, BIF, BAM-M-M. Uff, I guess it's out of the question that you give me some of yours and I'll inject it instead WHAM, SMASH, BLAM WHAPP.

 []      []      []
Hilarious!

[]

6

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

« on: 26/02/2011 11:18:34 »

What does anybody know about "natural" testosterone boosters? On the net you read a lot about tribulus terrestis, but I saw one lab report that said it did nothting. There are a lot of legal muscle builders supplements that claim to increas testosterone levels, but hmmm... why am I sceptical?

Anybody tried anything? Can we combine it with fenugreek?

I've tried quite a few different brands over the years and by far the most effective was Reflex Bulgarian Tribulus, I felt significantly better when taking it initially but gradually the effects lessened to the point that I didn't feel like it was doing anything.

A cycle is about 8 weeks, it's advised to stop for about 4 weeks then to let your body produce testoterone on it's own.

I'd normally last about 3 weeks taking it (until it had no effect) then feel worse than ever for a week to the point that I stopped using it atall, same with Ginseng. 

7

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

« on: 10/02/2011 16:24:28 »

Mine started after a time of particularly heavy ecstasy usage @ age 19, 15 years ago.  Eventually having an O felt began to feel like coming down off of ecstasy. The extremity has subsided, but I suffer many of the symptoms that others here share. Has anyone else had any experiences with drugs and POIS? Thanks.
p

Mine started at 18 when I was taking large amounts of Cannabis, Ecstacy, LSD and Amphetamines, at first I obviously thought the drugs were causing my problems so I stopped them but that had no effect.

Gradually over the years my symptoms have got worse and worse, strangley enough alchohol seems to have a positive effect on my physical symptoms for a couple of days after having a drink, I still have them but milder, after that I'm back to my normal POIS severity. 

8

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

« on: 24/01/2011 00:10:49 »

Can anyone help an idiot and PM me how to print off the PDF files so I can take/send them to my Doctor please I've got no idea when it comes to computers.

Decided I'm going to give it another go with him, if he still takes no notice after reading the reports then I'll change Doctors.

Thanks  

I wonder if he'll even take the time to read them. Sorry!
You really would be better with someone who's willing to actually listen.

The thought has crossed my mind, I just want to give him all the documented info so I'm completely justified in what I do afterwards.

I'm in the UK btw so I'm dealing with the NHS, a private Doctor would probably take it more seriously as I'd be a customer as it were ? but that really isn't an option for me.

9

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

« on: 23/01/2011 23:11:07 »

Can anyone help an idiot and PM me how to print off the PDF files so I can take/send them to my Doctor please I've got no idea when it comes to computers.

Decided I'm going to give it another go with him, if he still takes no notice after reading the reports then I'll change Doctors.

Thanks   

10

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

« on: 20/01/2011 09:29:40 »

I've just been to my Doctor and told him about the reports Dr W has released, he would'nt even entertain it, shook his head with a smile on his face "you havent got that, don't believe everything you read on the internet" were his words.

Feel like banging my head up a brick wall, it's fantastic what Dr W has done but what are you meant to do if other Doctors won't recognise or acknowledge his work ?

I can appreciate his position (my Doctor), if you worked in the medical proffesion and your patient came to you with news of an unknown illness he found on the internet what would you do, I'd be very dubious but I'd take the patient seriously and look into it for them but to completley disregard it with a smirk on your face as nonesence and not even look into it !!!!!

I'm so angry right now I'm having trouble typing, I felt like putting his head through the desk 

11

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

« on: 18/01/2011 01:18:23 »

Ok so I am left at a crossroads:  what to do to begin treatment?

• Do I approach an allergist and ask them to perform allergen immunotherapy with my semen?
• Do I approach my endocrinologist about the same thing, and also ask him to diagnose me with a testosterone deficiency and start me on supplementary?
• Do I find a new doctor, or some center (like the Human Sexuality Program, New York Hospital-Cornell Medical Center)?

Right now I have been working with my endocrinologist on this lately, so I'm trying to seem him again asap (Feb. 1st)   I wonder if it will be a waste of time, and if I should go to a urologist instead.  I feel discouraged after dealing with the medical bureaucracy, it's a lonely experience going through this...

I was about to post a similar question, though I am in the UK and it would be through the NHS and initially through my GP.

How do I approach the subject with him, is he going to take me seriously, even with DR Waldinger's papers put in front of him. I can't exactly ask him I want allergy tests done against my own semen can I, or can I ?

I have no qualms asking him anything and have done in the past relating to all of my symptoms but what is the best way of approaching the subject given DR Waldingers research and published articles.(I have asked him in the past for it to be disregarded as nonsence)

I must say I feel much more confident approaching him with this recent information, at least we all have some credibilty to our condition now.

Hopefully now the condition is getting some regognition and proper published research has been done more specialists will be doing research into it.

Personally I can't see the 'cure' taking upto five years, once there are more teams researching the condition that will be cut drastically.  

12

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

« on: 17/01/2011 10:48:26 »

I have had sex right upto the point of orgasm with no ejaculation, the groin and lower back pain I experienced was incredible, to the point that I could not stand up straight.

After a few minutes of this I decided it could'nt get much worse if I did actually ejaculate so I did and it was like some one had flicked a switch, I physically felt the pain flush out from my groin and back, afterwards it was my normal POIS symptoms.

13

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

« on: 16/01/2011 02:03:18 »

Thanks Chris,

That may be important.
Interestingly, prolactin is a dopamine inhibitor and the treatment for overproduction of prolactin is parkinson drugs, i.e. dopamine agonists which is in line with Habibou's post.

http://en.wikipedia.org/wiki/Hyperprolactinaemia

Nick

My prolactin was sky-high, 1,000% above norm. I self-cured (with endocrinologist's blessing) from reading that same wikipedia article about hyperprolactinemia and getting off Reglan. That simple. The article states that Rx drugs are to blame in many, maybe most cases.

Hello Demografx

Just to clarify you were taking prescribed drugs when that level was taken and then stopped to return it to normal or you were prescribed something.

Thanks 

14

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

« on: 16/01/2011 01:16:53 »

I just found that sebum, compound of earwax and oil of skin was stimulated by some androgens hormones (particulary progesterone) and by some pituatary hormones (STH, LPH, MSH). So this is probably due to the hormone disorder. I guess I'll by a book about hormones ans all that, there are lots of things to illuminate, I'm convinced there are a lot of answers hiden in books.
How good is it to be able to think and seek, I love fenugreek and ginseng

You just reminded me I have used Korean Ginseng in the past and felt great mentally, physical symptoms also subsided slightly though after maybe 2 weeks it stopped having any effect I then stopped taking it, the following 2 weeks were really bad and I swore I'd never use it again.

15

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

« on: 16/01/2011 00:47:54 »

Chris,

Your prolactin levels were higher than normal?

Nick

Hello Nick

Yes my Prolactin levels were high, the report I was given states a minimum acceptable level is 85, highest acceptable level is 315 mine was at 816.

The report stated the reasons for this could be due to stress, Hyperthyroidism or an irregularity with my Pituritary gland which could be a swelling or a tumor.

My Doctor has wrote to the consultant I was intially reffered to at the Hostpital to let him know and see what/if he wants to do.

My Doctor told me he may want me to have an MRI scan on my head to investigate but to be honest with you all I think they MAY find would be a swelling of the gland which is causing the over production which MAY be down to POIS or not, I don't know.   

16

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

« on: 16/01/2011 00:32:25 »

Hello all

Also does anyone know when Doctor Waldingers report is going to be published      
   

Hi Chris!

Thank you for posting your experience with POIS, it was pretty good to read your experience with this debilitating illnes. It won't be long now till there is some sort of treatment for this.

Did you manage to get someone to look into your health on the NHS or was it private?

Hello Green, everything was done on the NHS except a consultation and a couple of blood tests which I paid for privatly.

17

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

« on: 15/01/2011 23:40:05 »

Hello all

I found this forum about a week ago and it feels like a huge weight has been lifted off my shoulders.

I've been suffering from POIS (if it is that) for over ten years, not knowing anything about it or the term it's self up until I found this thread and spent some (alot) of time reading through the posts, I had read of sexual exhaustion about 6 weeks ago but until then I saw no correlation between my sexual activities and my problems.

Up until around 7 months ago the symptoms came and went regulary with varying degree's of severity (I had no idea what was causing them), when I was really bad I'd go to the Doctor have bloods taken, be examined etc etc and would always be given a clean bill of health, they would then tell me to come back to them if the symptoms persist but they would always fade away gradually and flair up at a later date.

Thinking back after reading about this condition everything seems to fall into place and starts to make sense, I havent felt 'right' in my head (or physicaly) since I was about 17.

My symptoms comprise of

Depression
Anxiety  
Lack of motivation
Difficulty thinking
Unsociable
Quite introverted
Severe muscle tremors all over from the soles of my feet up to my eyelids
Legs burning
Testicular pains/aching
Pains in penis, enlarged veins in gland
Shooting pains in Anus
Painfull urination
Pains either side of Groin
Kidneys aching
Lower back pain rising gradually and dulling midway up my spine  
Enlarged Lymph nodes in my neck and groin (been enlarged in my neck since I was 17 dont know about groin)
Severe aching in neck where the glands are enlarged  
Occasional high blood pressure
Various joint pains
Diahorea
Headaches

I may have missed some from the above but can't think of anything else at the moment.

After finding information about the condition I have not had an 'o' for 3 days and many of the symptoms have alleviated slightly others have stopped completely Diahorea and headaches for example.

Anyway, beggining of last summer June/July time I felt worse than I ever have before and after having 2 weeks off work decided enough was enough, I went to the Doctors and insisted that some thing was wrong and needed to be investigated.

Between my Doctor and a consultant (Professor of Medicine) at the Hospital I was reffered to I have had the following procedures.

Ultrasound of a Testical - feel I need to elaborate on this one, when I was around 21 I was diagnosed with a 'Hydroseal' (Google is your friend) but it was relativley small so I left it alone rather than have an operation to correct it, my Doctor thought it prudent to have it checked again just incase anything had developed, it hadn't but I was strongly advised to have the operation so that any lumps or bumps would be easily found in the future.
I had the operation, developed a blood clot and spent a week in Hospital but thats another story.

Two chest X-Rays
Echocardiogram (ultrasound of the heart)
Ultrasound of the abdomen and neck
CT scan of chest and neck
Flexible sigmoidoscopy (5 biopsy's taken)
24 hour blood pressure monitor
2 ECG's
Many blood tests checking for Thyroid, liver, Kidney's etc

All of the above came back clear.

I don't want to sound dramatic but I got to the point where I was genuinely hoping they would find Cancer.

When I had my last consultation with the Professor at the Hospital and he told me they couldn't find anything wrong with me my heart sank I felt completely helpless, he made an appointment for me in six months if the symptoms persist!!!!!!

In all I had seen 3 different Doctors over this period two saying I had an enlarged Prostate, Liver, Glands and Kidneys the other not.

After I had been given the all clear I spent many hours on the net looking at hormone imbalances and what they can cause, I went to my Doctor and went through with him some of the things I'd found, he agreed to run a blood test on my Testosterone, Cortisol and Prolactin levels.

Cortisol and Test came back within the acceptable range, Prolactin came back as 816, the normal range is 85-315. He told me he was writing the Consultant at the Hospital to inform them and see what they want to do, I've had no letters through the post so am going to see my Doctor again next week.

Now some background info

I started doing drugs from the age of 14 (occasional Cannabis) up until around 19 when I was taking everything from Cannabis to Cocaine (would this have caused/have anything to do with the problem).
I have been going to the Gym (bodybuilding) from the age of 14, I have never taken steroids but have used legal supplements over the years including

Branch chain Amino acids
Glutamin
Creatine
Nitric Oxide
Bulgarian Tribulus

The Creatine seems to have no effect either way on my health, the Amino acids and Glutamin I feel consistantly better when taking.Initially when taking Nitric Oxide and Tribulus I would feel fantastic for maybe a week or so then they would seem to have no effect so I would stop taking them, then for the following two weeks I would feel like death warmed up.

Also if it is of any relevance the symptoms are always far worse after an 'o' but looking back they also seem to aleviate with any kind of 'natural' buzz or excitment ie I went to Alton towers early last year and whilst on the rides I felt fantactic but after a couple of minutes of it finishing I felt really bad, I just wanted to sit down and go to sleep, then Id go on another ride and again I'd feel fantastic each time feeling slightly worse afterwards.

The same with driving, I own a reasonably nippy car and in the right place at the right time like to put my foot down and whilst driving like this physically and mentaly I feel great then after a few minutes of stopping it's like my mind and body go into melt down.

Sorry for the long winded post but I wanted to give as much info as possible, no doubt I've missed off some relevant and not so relevant points but hopefully it may be some help if not to the regulars then at least to the people in my position who felt they had no where to turn to.

P.S over this time my Doctor has been insisting on me taking Amitriptyline just to see if it helps, I took it for two weeks and stopped as again for the first week yes I felt much better, second week it had no effect (I felt the same as before I started taking it) and after I stopped I felt worse than before for a couple of weeks.

PPS thanks to Demografx for sending me the PDF files

Sorry if its all a bit messy and maybe difficult to read

Regards Chris

Also does anyone know when Doctor Waldingers report is going to be published