Author Topic: New member - Do I have pois and what can the doctor do for me?  (Read 13758 times)

Merlin

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New member - Do I have pois and what can the doctor do for me?
« on: October 27, 2015, 03:48:09 PM »
Hi I'm new here, I just wanted to introduce myself.

I'm 37 years old from England, I'm not 100% sure if I have POIS but so I shall describe my symptoms.

I used to masterbate too much when I was younger and have always blamed my feeling ill afterwards on that and thought it was just the way you felt when you did it too much.
As I have got older my sex drive has gone down severely and the symptoms have got worse.
The symptoms I have are feeling drained,  depressed and I get a kind of all over discomfort/soreness, I need to urinate often and feel anxious and my chest muscles ache particularly when I'm under pressure at work. I also get the brain fog feeling but I have just put this down to having something wrong with my brain up till finding out about pois.
I have sex maybe once or twice a month and is more for my girlfriends sake than mine. I am not sure if this fits in with POIS 100% as I feel my symptoms pretty much all of the time whether I have had sex recently or not, It just seems a lot worse when I'm more stressed.

I haven't been to the Doctors for 3 or 4 years, the last time I went was to do with the frequent need to urinate. I had some blood tests done to investigate but that didn't find anything other than I probably have Gilberts syndrome which isn't a big deal. I have also suffered with quite severe anxiety when I was going through a lot of tests on my heart due to family history but I was given the all clear. These tests started 5 years ago but I don't have any anxiety about my heart any more, I just generally get anxious. I also went to a sexual health clinic around the same time and after telling them about my symptoms I was told that I should go to the doctors. The doctor sent me for psychotherapy and basically assured me I'd be ok and things would work fine with me and my girlfriend.
I want to go back to the doctor and have some more tests done but not really sure where to start, I'm thinking about requesting to have my hormones checked to see if there are any abnormalities such as low testosterone. I've been putting it off as I want to make sense of it all and not just appear like a hypercodriac as I'm not sure if they agree to test my hormone levels or just put it down to anxiety.
Does anyone have any advice on what tests I should have done?

Thanks

Does anyone have any advice on what to say at the doctors please?

Thanks
Merlin

Quantum

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Re: New member - Do I have pois and what can the doctor do for me?
« Reply #1 on: October 27, 2015, 10:38:15 PM »
Hi I'm new here, I just wanted to introduce myself.

I'm 37 years old from England, I'm not 100% sure if I have POIS but so I shall describe my symptoms.

I used to masterbate too much when I was younger and have always blamed my feeling ill afterwards on that and thought it was just the way you felt when you did it too much.
As I have got older my sex drive has gone down severely and the symptoms have got worse.
The symptoms I have are feeling drained,  depressed and I get a kind of all over discomfort/soreness, I need to urinate often and feel anxious and my chest muscles ache particularly when I'm under pressure at work. I also get the brain fog feeling but I have just put this down to having something wrong with my brain up till finding out about pois.
I have sex maybe once or twice a month and is more for my girlfriends sake than mine. I am not sure if this fits in with POIS 100% as I feel my symptoms pretty much all of the time whether I have had sex recently or not, It just seems a lot worse when I'm more stressed.

I haven't been to the Doctors for 3 or 4 years, the last time I went was to do with the frequent need to urinate. I had some blood tests done to investigate but that didn't find anything other than I probably have Gilberts syndrome which isn't a big deal. I have also suffered with quite severe anxiety when I was going through a lot of tests on my heart due to family history but I was given the all clear. These tests started 5 years ago but I don't have any anxiety about my heart any more, I just generally get anxious. I also went to a sexual health clinic around the same time and after telling them about my symptoms I was told that I should go to the doctors. The doctor sent me for psychotherapy and basically assured me I'd be ok and things would work fine with me and my girlfriend.
I want to go back to the doctor and have some more tests done but not really sure where to start, I'm thinking about requesting to have my hormones checked to see if there are any abnormalities such as low testosterone. I've been putting it off as I want to make sense of it all and not just appear like a hypercodriac as I'm not sure if they agree to test my hormone levels or just put it down to anxiety.
Does anyone have any advice on what tests I should have done?

Thanks

Does anyone have any advice on what to say at the doctors please?

Thanks
Merlin


Hi Merlin, and welcome to the poiscenter forum.  You will find here support, and useful information.

First, yes, what you have described sounds a lot like POIS.  But it seems to me that you may have something else apart from POIS.  If some of your symptoms are chronic, even when you are not having any sexual activity for a prolonged period, you may have another underlying, chronic, condition that is worsen a lot by POIS ( assuming that your POIS is not kept active when simply aroused, or when having a bowel movement or even when urinating, each of these situations being mild POIS triggers for a certain number of POIS sufferers ).  If you have symptoms in the absence of any POIS trigger, you may then have another condition that is worsen by POIS.  For example, in my own case, I have suffered of chronic anxiety since childhood, so I have been anxious even when not active sexually, but POIS had been making my anxiety reach the "out of control" level.  So, in addition to developing a method to prevent and control my POIS symptoms, I also had to work on my general anxiety disorder as well ( psychotherapy, yoga, meditation,...).

If you do not feel healthy even when out of POIS,  you should talk with your doctor about it.  Some other conditions, like depression, or chronic anxiety, or anemia, or CFS, or many others, may have to be diagnosed.

Regarding POIS, do not expect much from your physician.  Most of them do not even know about the existence of POIS.  It is registered at NORD, the National Organisation for Rare Disorders, so yes, it is quite rare, and not talked about in medicine curriculum nor in medicine textbooks.  There is a only a handful of published paper on POIS - some case report and a small study by Dr Waldinger, the doctor who have created the name "POIS" and have suggested some hypothesis about its nature and origin, as well as clinical criteria to define what POIS is ( you can get those papers by contacting Demografx, administrator of the forum, if interested).  And, of course, there is the ongoing Rutgers research, that has been founded by the members of this forum. 

Thus, so far, the cause or different type of POIS are not identified yet, and there is no known medical treatment ( apart form relief/prevention methods and supplements that members here are sharing about, as, for example, niacin usage).  Basically, what your physician can do for you is to rule out any other condition that you may have, like a prostatitis, another type of infection, or else.  You can not even expect a POIS diagnostic, as this disease is not known by mainstream medical culture, not even by urologist or neurologist or other specialists.  In fact, it seems like just a few specialist in the whole world knows about the existence of POIS, and that's about it.  But having your blood tests done is a good idea, and you can have your hormones level checked if you want.  They may come out as being in the normal range, or maybe not.  At least one member has a total control of his POIS symptoms with testosterone replacement therapy ( Demografx), and there is another case of a member that is relieved by the use of progesterone, If i recall it correctly. 

If this medical appointment does not bring anything useful for your POIS, don't be surprised or disheartened.  Come back often on this forum, read about what others has found as helpful, and ask any question you may have.

Take care, Merlin.

Quantum
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Merlin

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Re: New member - Do I have pois and what can the doctor do for me?
« Reply #2 on: October 29, 2015, 05:40:31 PM »
Hi Merlin, and welcome to the poiscenter forum.  You will find here support, and useful information.

First, yes, what you have described sounds a lot like POIS.  But it seems to me that you may have something else apart from POIS.  If some of your symptoms are chronic, even when you are not having any sexual activity for a prolonged period, you may have another underlying, chronic, condition that is worsen a lot by POIS ( assuming that your POIS is not kept active when simply aroused, or when having a bowel movement or even when urinating, each of these situations being mild POIS triggers for a certain number of POIS sufferers ).  If you have symptoms in the absence of any POIS trigger, you may then have another condition that is worsen by POIS.  For example, in my own case, I have suffered of chronic anxiety since childhood, so I have been anxious even when not active sexually, but POIS had been making my anxiety reach the "out of control" level.  So, in addition to developing a method to prevent and control my POIS symptoms, I also had to work on my general anxiety disorder as well ( psychotherapy, yoga, meditation,...).

If you do not feel healthy even when out of POIS,  you should talk with your doctor about it.  Some other conditions, like depression, or chronic anxiety, or anemia, or CFS, or many others, may have to be diagnosed.

Regarding POIS, do not expect much from your physician.  Most of them do not even know about the existence of POIS.  It is registered at NORD, the National Organisation for Rare Disorders, so yes, it is quite rare, and not talked about in medicine curriculum nor in medicine textbooks.  There is a only a handful of published paper on POIS - some case report and a small study by Dr Waldinger, the doctor who have created the name "POIS" and have suggested some hypothesis about its nature and origin, as well as clinical criteria to define what POIS is ( you can get those papers by contacting Demografx, administrator of the forum, if interested).  And, of course, there is the ongoing Rutgers research, that has been founded by the members of this forum. 

Thus, so far, the cause or different type of POIS are not identified yet, and there is no known medical treatment ( apart form relief/prevention methods and supplements that members here are sharing about, as, for example, niacin usage).  Basically, what your physician can do for you is to rule out any other condition that you may have, like a prostatitis, another type of infection, or else.  You can not even expect a POIS diagnostic, as this disease is not known by mainstream medical culture, not even by urologist or neurologist or other specialists.  In fact, it seems like just a few specialist in the whole world knows about the existence of POIS, and that's about it.  But having your blood tests done is a good idea, and you can have your hormones level checked if you want.  They may come out as being in the normal range, or maybe not.  At least one member has a total control of his POIS symptoms with testosterone replacement therapy ( Demografx), and there is another case of a member that is relieved by the use of progesterone, If i recall it correctly. 

If this medical appointment does not bring anything useful for your POIS, don't be surprised or disheartened.  Come back often on this forum, read about what others has found as helpful, and ask any question you may have.

Take care, Merlin.


Quantum

Thanks for the reply, It is quite difficult to completely avoid triggering any kind of pois response, I hadn't even realised a bowel movement can also trigger it but I have noticed that it does sometime do for me.
I'm finding the forum useful and interesting, I have read reports of Trazadone & Mytelase being very effective for some people. I think I will keep reading and make some notes to try and make some sense of it. Sorry this is a bit short but I need to go to bed, there's always too much to do.

Thanks
Merlin

Quantum

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Re: New member - Do I have pois and what can the doctor do for me?
« Reply #3 on: October 31, 2015, 09:00:57 AM »

Thanks for the reply, It is quite difficult to completely avoid triggering any kind of pois response, I hadn't even realised a bowel movement can also trigger it but I have noticed that it does sometime do for me.
I'm finding the forum useful and interesting, I have read reports of Trazadone & Mytelase being very effective for some people. I think I will keep reading and make some notes to try and make some sense of it. Sorry this is a bit short but I need to go to bed, there's always too much to do.

Thanks
Merlin

Hi Merlin,

The rectum passes just behind the prostate.  When passing a large stool, it causes pression on the prostate, and some prostatic fluid can leak ( in particular, if the prostate is quite full, like after a period of abstinence, you can even see some prostatic fluid coming out of the urethra after such a bowel movement).  For some, this is enough to trigger some POIS symptoms.  This phenomena ( as well as other hints) has led me to believe that it is not orgasm, but ejaculation, or release of prostatic fluid and/or seminal lfuid and/or pre-seminal fluid that can trigger POIS.

Take your time to explore the forum, there is many years of interesting posts that has been gathered here.  Do not hesitate to ask any questions you may have.

« Last Edit: October 31, 2015, 09:07:07 AM by Quantum »
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

hurray

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Re: New member - Do I have pois and what can the doctor do for me?
« Reply #4 on: October 31, 2015, 10:28:18 PM »
"When passing a large stool, it causes pression on the prostate, and some prostatic fluid can leak ( in particular, if the prostate is quite full, like after a period of abstinence, you can even see some prostatic fluid coming out of the urethra after such a bowel movement).  For some, this is enough to trigger some POIS symptoms."

Well, add me to the list. I only ever had it happen to me a couple of times, but I got POIS symptoms on those occasions. Pre-seminal fluid also gives me POIS symptoms.
I also get some POIS symptoms (brain fog) from hot showers, and morning erections (which I don't usually get).

G-man

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Re: New member - Do I have pois and what can the doctor do for me?
« Reply #5 on: November 02, 2015, 01:26:01 AM »
I'm wondering if it is the fluid from the bulbourethral glands that causes symptoms. Most (all?) of the pre ejaculate comes from the bulbourethral glands. It is also located on the urethral sphincter and the ducts go through the bulbospongiosus muscle, the muscle responsible for ejaculation. I wonder if the muscles are pushing the fluid somewhere other than the urethra and that is causing a hypersensitivity reaction
31 years old. POIS since puberty. Cognitive and physical symptoms.

BluesBrother

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Re: New member - Do I have pois and what can the doctor do for me?
« Reply #6 on: November 02, 2015, 04:29:36 PM »
I'm wondering if it is the fluid from the bulbourethral glands that causes symptoms. Most (all?) of the pre ejaculate comes from the bulbourethral glands. It is also located on the urethral sphincter and the ducts go through the bulbospongiosus muscle, the muscle responsible for ejaculation. I wonder if the muscles are pushing the fluid somewhere other than the urethra and that is causing a hypersensitivity reaction

That's a very interesting thought. I have been thinking along similar lines recently. Here's why:

1. I read a bit about mytelase which has eliminated POIS for user Outsider. Mytelase is a cholinesterase inhibitor. My understanding of pharmacology / biology is very shallow - but when googling cholinesterase inhibitor and ejaculation I found that cholinesterase inhibitors are used in the treatment of anejaculation and retrograde ejaculation.

See this article: http://www.ncbi.nlm.nih.gov/pubmed/23360268

Courtois, Frederique, Serge Carrier, Kathleen Charvier, Pierre A. Guertin, and Nicolas Morel Journel. "The Control of Male Sexual Responses." Current Pharmaceutical Design 19, no. 24 (2013): 4341-56.

I quote from the abstract:

"The pharmacological developments based on these mechanisms to treat male sexual dysfunctions will complete this review, including phosphodiesterase (PDE-5) inhibitors and intracavernous injections (ICI) for the treatment of erectile dysfunctions (ED), selective serotonin reuptake inhibitor (SSRI) for the treatment of premature ejaculation, and cholinesterase inhibitors as well as alpha adrenergic drugs for the treatment of anejaculation and retrograde ejaculation."

I cannot access the full text (if someone can, please send it to me), but it seems that cholinesterase inhibitors can help the autonomic nervous system reflexes which are involved in ejaculation. G-man, you speculate that the muscles involved in ejaculation push seminal fluid somewhere where it does not belong. It could be that metylase is effective because it 'fixes' the muscle reflexes such that the fluid does not anymore get to the places 'where it does not belong' and hence there is no POIS.

2. I have experienced ejaculations without symptoms. In all these cases, the ejaculation happened without me being aware of it - either as a nocturnal emission, or - in one case - during intercourse as an extremely premature ejaculation. These ejaculations 'feel different' in terms of the muscle contractions involved, which makes me wonder whether the way my muscles contract in all other cases have to do with POIS.

3. When having intercourse with a partner / being stimulated by a partner, ejaculation also feels different in terms of the contractions - somewhat heavier - and although I am experiencing symptoms in these cases, they last shorter and are somewhat different from those after masturbation.

I was going to try to talk to an urologist about this theory. First, I was wondering whether I might have something like partial retrograde ejaculation - however, I don't have the impression that the amount of ejaculate is particularly low in my case. But maybe there are more possibilities of seminal fluid going 'the wrong way'?
Used to have brain fog, flue-like symptoms, un-refreshing sleep, extreme exhaustion, muscle and joint pain, digestive problems, social anxiety, urge to urinate frequently.
Used niacin in the past. Now using nanna1's maintenance stack. Exhaustion and brain fog now main problem. 3-day POIS cycle

G-man

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Re: New member - Do I have pois and what can the doctor do for me?
« Reply #7 on: November 03, 2015, 01:01:51 AM »
I wasn't able to find much on the NIH site about cholinesterase inhibitors other than it has an effect on vas deferens contractions. I did find an article that said NMDA receptors play a crucial role in the ejaculatory reflex though, I'll have to dig into it later.

One thing I know is that the irritation I feel after ejaculation is is in close proximity to the ejaculatory muscles. I remember having spasms in this area and seeing my doctor about it. I thought it was my prostate that was spasming and he told me that is impossible because my prostate is not a muscle. LOL. That had me confused for the longest time, but now it makes more sense.
31 years old. POIS since puberty. Cognitive and physical symptoms.

Merlin

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Re: New member - Do I have pois and what can the doctor do for me?
« Reply #8 on: November 04, 2015, 05:00:16 PM »
Hi everyone

I've had a look on wiki and to summarise the bits that I can kind of follow is  that mytelase is taken to treat Myasthenia gravis. Mytelase's  job is to protect acetycholine (by inhibiting the enzyme that breaks it down - acetylcholinesterase). The supplement Lecithin was also taken along with the Mytelase as s source of choline - a building block of actylcholine.

from the below wiki extract, antibodies are blocking (attaching?) the nicotinic receptors -  how does taking nicotinic acid affect this? does it help acetylcholine function ie does the nicotinic acid bind with the antibodies?

Myasthenia gravis (from Greek μύς "muscle", ἀσθένεια "weakness", and Latin: gravis "serious"; abbreviated MG) is a neuromuscular disease that leads to fluctuating muscle weakness and fatigue. In the most common cases, muscle weakness is caused by circulating antibodies that block acetylcholine receptors at the postsynaptic neuromuscular junction, inhibiting the excitatory effects of the neurotransmitter acetylcholine on nicotinic receptors at neuromuscular junctions. Alternatively, in a much rarer form, muscle weakness is caused by a genetic defect in some portion of the neuromuscular junction that is inherited at birth as opposed to developing through passive transmission from the mother's immune system at birth or through autoimmunity later in life.[1]


I'm wondering if I would be able to get testosterone, acetylcholine & serotonin levels checked at the doctors to see if there is anything abnormal of they will test it for me? does this sound like a plan? anything suggestions?

Here's something I came across the other day on health, diet and the human microbiome, it's very interesting if anyone wants to take a look.

https://youtu.be/AnNa2N22Tb8

G-man

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Re: New member - Do I have pois and what can the doctor do for me?
« Reply #9 on: November 09, 2015, 10:33:45 PM »
So, I'm reading in various places that the prostate does contain muscles. That shows how arrogant doctors can be.

I cannot access the full text (if someone can, please send it to me), but it seems that cholinesterase inhibitors can help the autonomic nervous system reflexes which are involved in ejaculation. G-man, you speculate that the muscles involved in ejaculation push seminal fluid somewhere where it does not belong. It could be that metylase is effective because it 'fixes' the muscle reflexes such that the fluid does not anymore get to the places 'where it does not belong' and hence there is no POIS.
I went to see my urologist Friday, and brought this idea up. He prescribed me Flomax because it relaxes the smooth muscles in the prostate and bladder neck. I'll report my findings in a few weeks, but I am hopeful so far. I was reading on the NIH website that 90% of patients on Flomax report markedly decreased ejaculate volume and 35% experience anejaculation.

I'm wondering if I would be able to get testosterone, acetylcholine & serotonin levels checked at the doctors to see if there is anything abnormal of they will test it for me? does this sound like a plan? anything suggestions?
If you're worried about your serotonin levels, I would look into taking, before ejaculation, 5-HTP and the IDO and TDO inhibitors that Quantum has listed in his pre ejaculation pack here:
http://poiscenter.com/forums/index.php?topic=2090.0
31 years old. POIS since puberty. Cognitive and physical symptoms.

BluesBrother

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Re: New member - Do I have pois and what can the doctor do for me?
« Reply #10 on: November 16, 2015, 11:50:28 AM »
I went to see my urologist Friday, and brought this idea up. He prescribed me Flomax because it relaxes the smooth muscles in the prostate and bladder neck. I'll report my findings in a few weeks, but I am hopeful so far. I was reading on the NIH website that 90% of patients on Flomax report markedly decreased ejaculate volume and 35% experience anejaculation.

Hi G-man,

are you already ready to share your experiences with Flomax? I do not quite understand the logic behind taking Flomax. In our discussion before, you suggested that semen might end up in the "wrong places" - now it seems that Flomax actually makes this more likely to happen (as you write, anejaculation - and retrograde ejaculation - are side effects of taking Flomax).
Used to have brain fog, flue-like symptoms, un-refreshing sleep, extreme exhaustion, muscle and joint pain, digestive problems, social anxiety, urge to urinate frequently.
Used niacin in the past. Now using nanna1's maintenance stack. Exhaustion and brain fog now main problem. 3-day POIS cycle

G-man

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Re: New member - Do I have pois and what can the doctor do for me?
« Reply #11 on: November 16, 2015, 11:07:29 PM »
Hi G-man,

are you already ready to share your experiences with Flomax? I do not quite understand the logic behind taking Flomax. In our discussion before, you suggested that semen might end up in the "wrong places" - now it seems that Flomax actually makes this more likely to happen (as you write, anejaculation - and retrograde ejaculation - are side effects of taking Flomax).
I had a nocturnal emission the first night I took Flomax, other than that I have not yet had a chance to see if it has any affect on symptoms. The logic to take Flomax at this point is just to see what happens. I remember reading that a lot of people who thought they had retrograde ejaculation with Flomax actually had anejaculation, it was proven when their urine was tested and the amount of semen in it was not any different than normal. I'm hoping that the muscle inhibition caused by Flomax will cause less semen to be displaced where it should not be (if that's even the cause of POIS), since the force of the muscles will be less. Whether that will work in practice, I have no idea at this point.
31 years old. POIS since puberty. Cognitive and physical symptoms.

G-man

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Re: New member - Do I have pois and what can the doctor do for me?
« Reply #12 on: November 27, 2015, 09:46:33 PM »
There are a couple things I have noticed since starting Flomax. Strangely, my ejaculate volume has nearly doubled. Also, ejaculations are smoother and the burning sensation is no longer there during ejaculation. There is a small, but noticeable decrease in the duration and severity of the symptoms. Since my ejaculate volume increased about 1.5-1.8 times the normal volume, I wonder if POIS is due to some form of ejaculatory duct obstruction
31 years old. POIS since puberty. Cognitive and physical symptoms.

G-man

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Re: New member - Do I have pois and what can the doctor do for me?
« Reply #13 on: January 13, 2016, 09:54:57 PM »
A couple of updates: Flomax continues to provide relief for me. The symptoms are less severe and are shorter lasting. My ejaculate volume is still leaning towards being larger than normal. The side affects are tolerable and for me include tiredness, being out of breath after walking up flights of stairs, and increased mucus in the sinuses.

One thing I noticed is that I get symptoms from doing kegel exercises. I can use this fact as leverage when talking with doctors. The fact that I get symptoms from something that is not directly related to something sexual suggests there is a physical basis to this illness. I have been doing myofascial release on my pelvic floor muscles and will report back if it has any impact on symptoms.
31 years old. POIS since puberty. Cognitive and physical symptoms.

Merlin

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Re: New member - Do I have pois and what can the doctor do for me?
« Reply #14 on: January 14, 2016, 04:40:08 PM »
I've not been to the doctors yet but have an appointment to go next Tues 19th Jan, I'm a little bit nervous as I'm not sure what what iIm going to say but I'm going to try and have my blood tested for Testosterone level.

demografx

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Re: New member - Do I have pois and what can the doctor do for me?
« Reply #15 on: January 15, 2016, 02:09:16 AM »



Welcome
Merlin!!




Please see the resources at our Page:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1

I assume you found the Testosterone thread:
http://poiscenter.com/forums/index.php?topic=17.0

Best wishes!!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business