Doctors think I'm crazy

[demografx]

I'm on antidepressants. They help depression/anxiety, but zero for POIS. For me. And I wish I had a FRACTION of the money I wasted on psychotherapists-for-POIS!

Excellent post, GLC!

[Going less Crazy]

Okay I'm sorry for that.  Maybe I should have said antidepressants are what they are, antidepressants.  Now if we had antipoissants, we'd be in business.

[demografx]

Okay I'm sorry for that.  Maybe I should have said antidepressants are what they are, antidepressants.  Now if we had antipoissants, we'd be in business.

In case you missed my edit: excellent post, GLC

[COLM_2]

Good stuff GLC & Demo,

Can absolutely relate to the decades chasing and somewhat wasting a fortune with a pure psychological approach to cure POIS. In my opinion, while talk therapies certainly can help your spirit (they can clear something temporarily for many people in POIS and it's good to talk about stuff with a counsellor or therapist), but it doesn't offer a cure for POIS.

I blamed a lot of events from my past for suffering with POIS for a long time (before I discovered four years back I wasn't alone with the beast). But actually there was all this other physical root to the symptoms and reaction to "O" and for me being so depressed back then, as I clearly discovered these last few years (now 43 Yrs with POIS). I have been helped a lot through also trying things out here, along with taking some advice elsewhere from holistic practitoner. If psyche meds help people with symptoms that is good also. I have chosen however to avoid that avenue, and gone for the gut healing, lifestyle and other means to reduce my own symptoms. Please anyone on Psyche meds, do take professional advice before changing any dosage or reducing or stopping.

I will report soon here BTW on a six month VNS experiment I personally engaged with and invested in, and some positive results on further symptom reduction.

On the point about inflammation, as others have I think mentioned recently, there's a growing body of research looking at Inflammation as a possible root cause of many forms of depression. Such as explained here https://www.psychologytoday.com/blog/urban-survival/201701/new-research-shows-depression-linked-inflammation

Because POIS clearly has autoimmune and inflammatory characteristics and markers, depression is a natural component of what we tend to experience and battle with.

Kind regards,
Colm

[Going less Crazy]

Okay I'm sorry for that.  Maybe I should have said antidepressants are what they are, antidepressants.  Now if we had antipoissants, we'd be in business.

In case you missed my edit: excellent post, GLC

No I saw it just realized there may be people on antidepressants here even though they may not effectively help with pois.  Hahah nice picture.  Too bad it's 2017.

[COLM_2]

Hi guys,

So my POIS has gotten so bad to the point where it's ruining my life. I can't work properly, I can't think straight, I can't socialize and I'm terrified of sex now because of the price I'll pay afterwards. As a result I've become very suicidal. I decided to seek the help of doctors to start down the path of recovery and figure out what's causing this. My original plan was to tackle it from every angle by seeing an immunologist, endocrinologist, gastroenterologist, allergist, urologist, and a therapist. Cover all bases you know? Hopefully hone in on whether my causes auto immune related or hormonal related etc. I'm on this horrible Obama care in the US which is so so SO bad healthcare. And so far I've only been able to see a primary care physician, a psychiatrist and two therapists. My primary care physician wouldn't send me to any of the specialists. What happens every time I see a doctor of some sort is this: I'll explain why I'm there and I'll mention POIS. Of course no one has heard of it. I attempt to explain, and they always cut me off and the first thing they ask is why I want to see all these specialists and "what makes you think it's auto immune or allergy related?" etc. They always jump to the conclusion that it's psychological. And I can tell they don't want to hear me ramble on anymore about these crazy "theories". I can't tell them any other doctor has diagnosed me with POIS because no one has and no one can. I started seeing this therapist who of course didn't even entertain the idea that there's something biologically wrong and thinks it's related to psychological issues from my childhood. And the psychiatrist I saw could care less to learn about the illness and just prescribed me anti depressant drugs and sent me out the door.

Now going into all this I told myself I have to be open minded and willing to try anything and everything. I have to. I'm desperate for relief and resolution. Now keep in mind none of these doctors I've seen have ever heard of POIS. But they have me thinking now, could this all be psychologically rooted for me? I know there's definitely people that have found it's an imbalance of some sort in the body for them. But has anyone been cured of POIS through therapy? Has it ever been known to be rooted in deep depression or anxiety? I suffer from really bad allergies and I'm allergic to pretty much everything you can think of, and my immune system is super weak. So these made good starting points. But now I'm confused and I don't know what to do. Should I not trust these doctors? I'm lost...

Hi Neutral,

All I can say is I hear your anguish, frustration and struggle around this. I would not abandon the medical advice that is available to you (in the knowledge Doctors don't really know too much about POIS, and because ther are no proven facts about it's root, they may try to put it in the psychosomatic box, which suits their left brain world.  But also please do take on what resonates with you here, from the many credible experienced POIS "battlers" who post here, people who have found things to help their POIS symptoms stay more under control, so that they can live their lives to the best, until we have a clearer medical solution. This is a physical, mental and emotional battle to keep strong and have a good life.

It is truly mind over matter in sticking to trying some things you feel resonate with you and experimenting with various strategies that can work for your POIS type.

Don't lose hope, there is much happening to support us in developing wellness and coping mechanisms. Daveman, Demo, Quantum, Stef and other founders and supporters here have your  back for the long haul in trying to bring more solutions and credible research, so Doctors can't rubbish us any more.

Much luck and best wishes,
Colm 

[demografx]

Too bad it's 2017.

Why 2016? I didn't want your PM mailbox filled with antipoissant requests

[Neutral]

Thanks so much for all the advice guys. Really appreciate it.

My primary cares office left me a voicemail this morning refusing me referrals to the specialists again. I called back and got angry with them, they became short with me and said "Ok I'll just file for all of them". I can't believe how easy it is for them to make the referral but instead deny me access to help. It was so frustrating hearing that. All I had to do was get mad at them and they caved. Truly sad.

Any way in 10 days I "should" have referrals for an endocrinologist, Gastroenterologist and immunologist.

I really do believe my symptoms could stem from inflammation. I have allergies, and I've been tested for all sorts of things I'm allergic to like certain foods, dusts, mold, trees, grass etc. And a lot of them came back positive. And this may sound stupid but I just FEEL inflammed on the inside. My brain feels swollen and on fire at times, can't think straight. My question is what kind of doctor or specialist do you see about inflammation? I have this hunch that a naturopath would be helpful. But they're not real doctors so no insurance covers them. And they're INSANELY expensive. The few I inquired with were $300-$400 for a first consultation. Not to mention the cost of follow ups and testing.

[Going less Crazy]

Yes, the swollen and on "fire" brain is a problem I can 100% relate too.  That is my number one most irritating, degrading, tortuous problem I deal with when pois hits.  Fortunately for my diet, i haven't experienced that for a year, but than I went on antibiotics, messed up my gut and experienced pois twice since.

That's why I think this problem is soooo closely related to gut health, food intolerances and allergies.  Antibiotics are the worst thing you can put in your gut, and that's what I did, now I'm having pois.  I'm getting back to my previous self, but healing doesn't happen overnight.

It sounds to me like you have an ongoing inflammation problem.  And I think the combination of you being a vegetarian, not eating meat and not having enough calories forces you to eat stuff your body might not be fine with, like quinoa.  Are you still eating that?  Take my post with a grain of salt but I do have a lot of pois experience regarding allergies.  If your pois is related to diet, you should definitely notice it and feel better within a couple of days to a week after eating the right foods.

Regarding the right doctors I am not entirely sure, but you seem to be on the right path.  I'd try to get some kind of cyrex food allergy/sensitivity panel or something... If you haven't already.

[Going less Crazy]

Too bad it's 2017.

Why 2016? I didn't want your PM mailbox filled with antipoissant requests

Well you know I was trying to get rich quick.  But that's OK hahah

[demografx]

Any way in 10 days I "should" have referrals for an endocrinologist, Gastroenterologist and immunologist.

Neutral, we're all keeping our fingers crossed for you!

[Neutral]

Yes, the swollen and on "fire" brain is a problem I can 100% relate too.  That is my number one most irritating, degrading, tortuous problem I deal with when pois hits.  Fortunately for my diet, i haven't experienced that for a year, but than I went on antibiotics, messed up my gut and experienced pois twice since.

That's why I think this problem is soooo closely related to gut health, food intolerances and allergies.  Antibiotics are the worst thing you can put in your gut, and that's what I did, now I'm having pois.  I'm getting back to my previous self, but healing doesn't happen overnight.

It sounds to me like you have an ongoing inflammation problem.  And I think the combination of you being a vegetarian, not eating meat and not having enough calories forces you to eat stuff your body might not be fine with, like quinoa.  Are you still eating that?  Take my post with a grain of salt but I do have a lot of pois experience regarding allergies.  If your pois is related to diet, you should definitely notice it and feel better within a couple of days to a week after eating the right foods.

Regarding the right doctors I am not entirely sure, but you seem to be on the right path.  I'd try to get some kind of cyrex food allergy/sensitivity panel or something... If you haven't already.

Yeah I got a food allergy test along with all the other allergy tests. It was more than a year ago. But the people at the office said they haven't seen allergies that bad in a while in someone. I started doing that treatment with them where they inject you with a specific serum to build up your natural response or tolerance or whatever. Much like some of those doctors that inject POIS sufferers with their own semen. They lied to me about the cost of it though and after a few months when the bills started coming in I quickly stopped.

So I know I'm allergic to a lot of things. But not really deathly. I had pretty bad asthma as a child. But I've never had allergic reactions to where I needed to be hospitalized.
Anyway I've been on this AIP diet for a while with a couple hickups. I cut out all grains (quinoi and lentils included) for the last 2 weeks. I can't say I feel great. I think I'd probably be feeling a little worse if I was still eating a ton of wheat and gluten and all that. But so far I don't feel a massive difference. Rather discouraging.

Sometimes I feel like maybe my POIS has subsided but I still experience severe anxiety and depressive symptoms. Which could be unrelated to POIS? But I've had POIS for so long and it's so closely related that it just feels like POIS.
I find my opinion constantly changing which is annoying. Not knowing what's wrong with you. But something is definitely wrong.

[Going less Crazy]

If it is diet related, it could be as simple as eliminating one thing that is bothering you that you do not know about.

[Neutral]

If it is diet related, it could be as simple as eliminating one thing that is bothering you that you do not know about.

I'm curious. If you spend a whole weekend eating whatever you want, including foods that are not allowed in AIP. Do you instantly get symptoms or is it just if you orgasm after eating that stuff? And if you do get symptoms, how long does it take you to recover back to normality if you quickly go back to strict AIP food?

[Quantum]

Hi Neutral,

About the original subject of this thread - what to expect from primary care physicians and specialists, and how to manage this - , see my post at http://poiscenter.com/forums/index.php?topic=2392.msg20182#msg20182  .  It may save you a lot of disappointment and frustration, and help you to have a more effective strategy with doctors.

[Going less Crazy]

If it is diet related, it could be as simple as eliminating one thing that is bothering you that you do not know about.

I'm curious. If you spend a whole weekend eating whatever you want, including foods that are not allowed in AIP. Do you instantly get symptoms or is it just if you orgasm after eating that stuff? And if you do get symptoms, how long does it take you to recover back to normality if you quickly go back to strict AIP food?

Yes, at this point in my life if I eat whatever I want I get what I consider POIS, and having an orgasm during that time I feel like the reaction has more "entry" into my brain and feel a lot worse, like an O would throw me way farther off the ledge.  Think of people who are in "constant" POIS and O would make them worse.  The constant part is what I would feel if I ate whatever I wanted.

It takes me currently about 24 hours to start feeling better after eating the wrong food, or even eating the wrong food in combo with O'ing.  Oing while eating the right foods I have a normal orgasmic response.

[demografx]

Hi Neutral,

About the original subject of this thread - what to expect from primary care physicians and specialists, and how to manage this - , see my post at http://poiscenter.com/forums/index.php?topic=2392.msg20182#msg20182  .  It may save you a lot of disappointment and frustration, and help you to have a more effective strategy with doctors.

Quantum, your link above could've spared me oodles of time with primary care docs and urologists.