I went to the doctor about pois and....

[Sisyphus]

I got referred to an ANALPHYLAXIC CLINICIAN!

It's not quite what I wanted but the thing is, I've been trying to get a referral from my GP to speak with someone about pois symptoms for 20+ years so I'm pleased just to get a first appointment with any clinician. I would prefer to be seen by, for example, an endocrinologist who specialises in sexual medicine but that was not offered to me.

What to say to the analyphylaxic clinician?
I believe that the prevailing opinion on this forum is that POIS is unlikely to be an allergic condition (at least to one's own semen). Nonetheless, now that I have the referral, does anyone have recommendations, based on past experience or just an opinion on how to approach my appointment? Imagine this was you. Any suggestions for what to ask to have tested? I think my aim is to persuade the ANALPHYLAXIC CLINICIAN to take my symptoms seriously enough to refer me on to an endocrinologist. I'm not sure of the best approach. If you've been to a doctor or specialist about pois, what was your experience?

[Sisyphus]

So, I went to the analyphylaxic clinician during what was quite an eventful week for me. She diagnosed me with pois!

diagnosis
She had never come across anyone with pois before but seemed reasonably open minded which was quite refreshing. To make the diagnosis, she simply went through Waldinger's criteria. So, after 40 years of pois symptoms which includes 20 years of asking my GP for a referral I have finally been diagnosed.

treatment - antihistamines
For treatment, she recommended I take the antihistamine Fexofenadine Hydrochloride 180mg which I have taken before. She wants me to take it more frequently, she recommended every day, twice per day if necessary. Previously, I've found antihistamines reduce my sypmtoms by about 50% but they can make me feel slightly groggy. I'm cautious about all meds so I will take a little time out to consider her recommendation.

She also referred me to to a Urologist.

Overall, it was a positive appointment.

[Muon]

You could ask her if she wants to be on this list
https://poiscenter.com/forums/index.php?topic=2575.0

[Sisyphus]

Hi Muon. Good idea. I'll ask her if she wants to be on that list at my follow up appointment in a few months time.

tryptase: I forgot to mention that she wanted to do a blood test for tryptase so I had that done in the hospital on the same day. I had never heard of tryptase but I have since read that it can have an association with MCAD so I expect that you and others know about it. I'll post the result here in due course.

[Muon]

Tryptase is not reliable to observe mast cell dynamics, it is used for the subset of MCAD named mastocytosis which I do not think plays a role in POIS if mast cells are involved. Almost all POIS patients who have been tested for Tryptase end up with a negative result. I think she wants to rule out mastocytosis. Other parameters are used to probe mast cell activity and can be found here including diagnostic criteria for MCAS: https://poiscenter.com/forums/index.php?topic=3236.0

[Sisyphus]

Thanks for the clarification Muon. Much appreciated.

[joelawerence]

Any further update OP regarding your treatment?

[Sisyphus]

I don't have an update at the moment.
I'm still waiting for the NHS to give me my next appointments. I'm glad to have finally been referred into the NHS system after many years of trying so I just need to be patient because all departments have backlogs.
I have a review appt with the allergy specialist in November.
I am waiting for the appt with a Urologist.
I am waiting for the blood test result for tryptase and an appt for more blood tests (I don't know what else they plan to test).
I'll post an update later in the year.
In the meantime, I've started a thiamine protocol which you can read about here if you are interestested:-
https://poiscenter.com/forums/index.php?topic=3849.0

[Sisyphus]

Have you been to a doctor about your pois joelawerence?

Would anyone else who's been to a doctor about pois like to share their experience on this thread?

[Iwillbeatthis]

I don't have an update at the moment.
I'm still waiting for the NHS to give me my next appointments. I'm glad to have finally been referred into the NHS system after many years of trying so I just need to be patient because all departments have backlogs.
I have a review appt with the allergy specialist in November.
I am waiting for the appt with a Urologist.
I am waiting for the blood test result for tryptase and an appt for more blood tests (I don't know what else they plan to test).
I'll post an update later in the year.
In the meantime, I've started a thiamine protocol which you can read about here if you are interestested:-
https://poiscenter.com/forums/index.php?topic=3849.0

NHS won't have any help for you sorry to say it but they are useless for this kind of stuff

[Sisyphus]

NHS won't have any help for you sorry to say it but they are useless for this kind of stuff

What makes you say the NHS are useless for pois? Have you asked your doctor about pois? If so, what happened?

[Cosmic1982@]

I went to my doctors today and he was a young guy who was very intrigued into POIS and has put down on my NHS online notes "Possible Post Orgasmic Illness Syndrome". Not sure if that's worthy of any legitimately but none the less it's on there now and known.

He has referred me to go to speak about it to a professional in counselling to rule out any other possible causes that could have triggered it developing through puberty.

And in turn he advised they might be able to point me in the right direction.


He is willing to work with me 🙂 fingers crossed.

[Iwillbeatthis]

NHS won't have any help for you sorry to say it but they are useless for this kind of stuff

What makes you say the NHS are useless for pois? Have you asked your doctor about pois? If so, what happened?

Yes when I had POIS I wasted years seeing NHS GPs and specialists and even the nhs specialist who sees people for POIS, they are all useless. POIS, CFS, chronic infection illness like lyme etc don't bother with the NHS they don't know what to do for these conditions. There isn't some magic drug which wills save you, do your own research and become you own doctor you will achieve much more than seeing NHS doctors. Even if you have some condition they treat eg like lupus they just give you Corticosteroids which have short term benefit but cause big issues in the long run like most drugs do.

https://www.youtube.com/watch?v=kDC9NZo8Lqw&ab_channel=Dr.SuneelDhand

https://www.youtube.com/watch?v=WO7iisgt77Y&ab_channel=Dr.SuneelDhand

https://www.youtube.com/watch?v=KAvemcgLa-8&t=350s&ab_channel=Dr.SuneelDhand

[Sisyphus]

Hi iwillbeatthis.
I'm sorry to hear you've not had much help from general doctors. Same here for about 20 years until I got a hospital referral to see a specialist a few months ago. Since then I've felt a bit more optimistic because they are now taking an interest in my pois. What was the name of the pois specialist who saw you?

[Mahiraj]

So as you said you did daily coffee enema for 6 month?
Is 6 month is not bad for daily enema

[Sisyphus]

So as you said you did daily coffee enema for 6 month?
Is 6 month is not bad for daily enema

I'm assuming this question wasn't aimed at me?
I like to drink a coffee every morning, no way would I put it in my ass (or any of my Greek yoghurt).

Each to their own I guess but not for me thanks. But, it begs the question, what is it about pois that it attracts such a bizarre treatment? Is it indicative of how stuck some of us poisers feel?

[Sisyphus]

doctor update

I had my follow up pois appointment with the Analphylaxic Clinician from the local hospital.
This was a telephone appointment which followed my first appointment which was in person at the hospital around 5 months ago.

blood test results
Test results for tryptase, total IG, rare allergies were all normal/negative.

treatment update
prescription: The treatment recommendation had been the antihistamine Fexofenadine 180mg once per day, twice per day if tolerated.
my feedback: My feedback to the specialist was that I get some benefit from Fexofenadine when taken just before or just after o and then the next day. ex/ less allergy like and flu like symptoms. In my experience it doesn't help with migraine, actually makes it worse. Other side effects were mild grogginess, tiredness. I don't tolerate Fexofenadine well enough to take it daily and definitely not twice a day. Ad hoc it has some benefits and I am happy to keep using it.
thiamine:I mentioned I had been trying thiamine supplements which seemed to be helping with fatigue. She didn't seem particularly interested in thiamine and just said again she recommended antihistamines.
other treatment: The specialist did not have any other treatment recommendations.

pois doctor list
I asked this specialist if she would like to be listed on this forum as a doctor who knows about pois. She was not willing. She said I was the first pois patient she has come across, that she is an Allergy Specialist and knows very little about pois.

next appt?
None. The specialist made it clear she could not help any further with my pois so I have been discharged from her clinic from today.

Urology referral
I was referred to Urology around 5 months ago, still waiting for that appointment. I will update in due course.

[Sisyphus]

See previous post.

I was quite disappointed to be so abruptly discharged from the hospital clinic by the Allergy Specialist recently and it left me thinking that Iwillbeatthis might be right after all, that doctors are a waste of time when it comes to POIS. On the other hand, I've tried to have a more positive approach about everything in recent years so I decided not to give up and instead got a new set of general blood tests which are at this link:-
https://poiscenter.com/forums/index.php?topic=2684.msg49723#msg49723

I decided I wanted to discuss the results with my general doctor and to my surprise I got a phone appt with him straightaway which took place this morning. The outcome of the phone appt was as follows:-
My doctor is going to consult with his colleagues about my high transferrin saturation and haemochromatosis gene test to see what they recommend.
My doctor is going to re-test my PTH and a few other things.
My doctor is interested in the above. He's sceptical about POIS (had not heard of it) but acknowledges that the Allergy Specialist thinks I have POIS.
What I'm wondering is, could all of the above be linked? Or will this once again prove to be a dead end for my POIS research?

I will update in due course.

Anyone else been to a doctor about POIS recently and care to share what happened?