His and Her Health

The thing that jumps out to me is your report of allergies.

I developed seasonal allergies at about the same time my anhedonia began. Whether it's a histamine thing, or whether the body can cause lasting damage due to allergies, I don't know.

But that's an interesting angle, if you ask me.

Join us at ejaculatoryanhedonia.com when you get a chance.

cjsteele - Some of us think that our EA could be a form of premature ejaculation. Many of us can "make it last" but don't feel pleasure. So the thinking is that as our bodies begin to get to where pleasure should be felt, the ejaculatory reflex happens. And just because this is more than a couple minutes of sexual activity, it's an early ejaculation in that it shouldn't really have happened yet. The body never builds up to anything good.

Also, I have not tried bromocriptine. I'd love to hear someone's experience with it.

(I have tried cabergoline, Wellbutrin XL, and ropinorole.)

jrsousua2 - Yes, so glad to hear of your success. Since I haven't been on the board for awhile, and to be sure I'm clear on what you're taking, would you just summarize which supplements you're taking (please include brand), and how much, and when each day?

Thank you!

Michelle -

I've ordered supplements through Puritan all the time. Also thorough vitacost.

Irritability is a symptom of sleep apnea. (It was a primary symptom, for me.) Does your husband snore?

As you've already discovered, you have a higher level of understanding of this EA problem than 75% of urologists. And that can be frustrating. You might ask around, about urologists, or even a family doctor, who's known to listen to his or her patients, and work with them.

For example, my regular doctor is very willing to prescribe me medications to see what (if anything) will happen.

Oh, and if you research hypothyroid tests, you'll see that they mainly check for TSH, T3, and T4.

Guys, I think crab-cz's post is really interesting. Prostate pressure eliminated pleasure for him.

Perhaps some kind of inflammation or disturbance to our prostates is partly responsible for our loss of pleasure too.

I've never heard anyone else say they've been able to duplicate our problem, voluntarily.

Does this spark any additional thoughts for anyone?

In reply to the earlier question - even though I may have a normal erection, I lately have not even felt the excitement of arousal. I enjoy making my wife feel so good, but I sometimes feel nothing at all. At all - no exaggeration. No pleasure from oral, intercourse, ejaculation, or even a mental/chemical uplift.

I'd add to my previous comment, to the wife of the sufferer, who has posted, that I sometimes wish my wife wanted to have sex more frequently. Sometimes it's hard for me to see that she's capable of so much pleasure, but doesn't want it. Meanwhile, I'd give nearly anything to feel even half as good as she does. So it can feel like she's not even interested in this experience I am dying to enjoy.

Does that make sense to anyone else?

TnT - any progress with the TV program?

Michelle:

I've never felt annoyed or upset toward my wife about her ability to feel the pleasure that I cannot.

Sometimes when she's felt great, and I've felt nothing, I get very sad. And even though she knows it's not directed toward her, my wife still feels guilty about feeling so good.

She'll sometimes decline my offer to make her feel good, because she can't return the favor. This always makes me feel bad, because it's not fair for her to miss out because of my illness.

Every once in a while I do feel jealous of her. But I try really hard not to show it, due to the way she'll react. (Which I've just described.)

For most of our married life, I've still had a pretty high drive, and you'd say I was the aggressor. But for the past 4 months or so, things have felt so badly for me that I've pretty much given up on feeling good anymore. So we only have sex once a week. Maybe twice. I'm trying to stop hitting my head against the wall. But this makes me sad too. It's as though part of me, and our relationship, is gone forever.

Bottom line, though, I love my wife, and love to make her feel good. I hope your husband feels the same way toward you. But I can understand if his own drive is very low, since there's no payoff for him, personally.

Michelle - Welcome to the board. I'm sorry to hear about your husband. It sounds like he's been suffering alone, until recently. Although I realize that's not quite true, since you've wondered why he's acted this way.

I started this message board, and am now 34. Unlike your husband, I had normal functioning until about 9 years ago. Sorry to say, my current status is about as poor as ever. Whereas ejaculation itself used to be pleasureless, now the the entire process is pleasureless.

However, several men have had success with the supplement GABA Plus. So it can't hurt to try it.

And your husband isn't alone in not knowing what to do. Mos of us have had the experience of being rejected by doctors who say this problem is in our heads. It hurts not to be taken seriously.

So I'd introduce him to this message board. Look at how many hits this topic has had. We blow away any other topic, male or female, on this entire website. He's not alone. And that's a start.

Also, read through the entire thing. It will take you days. But see if you can find any similarities in his health history, compared to ours. Also, visit ejaculatoryanhedonia.com, and register there.

I'm glad you found us. And though we cannot yet offer a cure, we can at least offer our empathy for both of you.

@shuttler:

If you search for her name, you'll find her site, and the email address is at the bottom.

I'm glad to hear you're having some improvement with the chiro. Please keep us posted.

And the TV segment probably being filmed in Canada - I think that would we wonderful.

We're making some progress, gentlemen. Thanks for sticking together. When I started this thread three years ago, I thought I was almost the only one with this problem. There's strength in numbers.

Alan, michalesad, and danbo800 - I have to say how happy I am that you've found success with the GABA. I only wish I were also seeing improvement with it. But alas, I notice no change at all.

Has anyone else had success with GABA? Anyone lurking out there, who hasn't posted yet?

Yesterday I talked to Dr. Turek in San Francisco. He said that a colleague at his monthly meeting is aware of our anhedonia problem, and has treated it successfully. Her name is Melody Lowman, and you can search for her online to find her website. She’s been a practicing sex therapist for 45 years. And she said she’s seen anhedonia many times over the years.

So I called her today. (She’s also in the Bay area.) She said that in her experience, ejaculatory anhedonia is caused by a mind-body disconnect. It can be congenital, or inherited. The treatment is usually sex therapy. Not traditional psychotherapy, but behavioral reconditioning. She doesn’t believe that any drug or supplement will help.

I asked her flat out if she’s cured men with this reconditioning, and she said yes. She also said that she’d be happy to meet with anyone who can make it to the bay area. I’m not sure of the cost, but it would be interesting for someone to try it. (I live in the mid-west, so it’s too far for me to go.)

Many on this board have referred to our problem as a timing and reflex malfunction - that the ejaculatory reflex is set too low. This would seem to jive with her experience as a therapist. However, we’ve had at least three men see marked improvement with the GABA+. So perhaps there is more than one cause, after all.

On a personal note, I’m as poor off as I’ve ever been. Intercourse and ejaculation are almost completely pleasureless. I try to enjoy the closeness of being with my wife. But I truly long for a cure.

Baclofen only made me tired. So now I’ve backed down from 450 mg of Wellbutrin XL to only 150 per day. And I’m trying Enablex again. I also plan to try the GABA plus while on reduced WBXL, to see if it has a different effect.

TnT:

That is awesome news about the possibility of the TV show! I really, really hope it works out. If it does, I'd be happy to call you sometime, to talk things over if you want.

As for Dr. Turek, I talked with him a couple weeks ago, but heard nothing back. So I emailed again, and am talking to him at 4pm Eastern, today. I don't get the feeling he had anything new, but I'm curious to hear the reaction of his small group of urologists.

I'll post here and on the other site, after we talk.

michaelsad's link is incredible. Basically you have a group of doctors who say "you can run these tests, and if they come up with nothing, we think it's psychological . . ."

What a cop out! That's what they said about ED for years and years. Now we have three Rx solutions.

Imagine telling your doctor that another of your senses is diminished. You can't smell anything anymore. You've lost your hearing, or your vision is blurry. They run some tests, but have no answers. Would they say, "it's psychological" ? Really?

It's a total cop-out to say that. And just because it's a sexual sense rather than smell, taste, hearing, or vision, they get away with it.

You'd think some in the profession would realize that THEY ARE NOT TESTING FOR THE RIGHT THING YET!! So simple.

Regarding the TV show - I talked with Michele, and the opportunity is better for us than you might at first think.

They're doing a series on unusual sexual disorders. Each episode is 30 minutes, with two conditions covered per episode. So we'd get 15 minutes on our condition. And in the meantime, they're asking for other conditions, too.

A couple of things -

First, I appreciate the diarrhea warning, with the inositol. I think you're right, and that's certainly not what I'm trying to do!

Second, MY Twinlabs GABA has 200 mg of GABA in each pill (plus the other two ingredients). That's a lot more than yours, isn't it Alan?

Also, I've wondered how I can be taking a supplement, and still have an unreadably low amount of GABA in my blood. I don't know what it means.

So Thursday I'm meeting with my doctor to discuss the labs, and hopefully try baclofen.

Also, tomorrow is Dr. Turek's meeting. I'm really hopeful that someone in that meeting will have heard of our problem, and be able to help.

Alan, you make a good point. Starting today, I'm upping my intake to at least 2 grams. And I'll increase it from there.

I just received my lab results, from my most recent blood tests.

Testosterone 536 (about 300-400 lower than it used to be - 6+ years ago).
GABA = none detected (And the report states that they tested it twice!!

Interestingly, I was taking the GABA+, too, at the time the blood was drawn. I'd been taking it for about 6-8 weeks, in fact.

So I now have an appointment with my doctor on Thursday to discuss it with him. I'm going to ask if I can try baclofen. (I've already tried gabapentin/neurontin.)

Welcome to the forum. I hope more and more men will post their stories. Knowledge is power.

You asked about drowsiness on GABA+. I haven't had any drowsiness with it. Whereas, when I tried gabapentin a few years ago, it made me VERY sleepy.


Also, I wanted to report here about my conversation with Dr. Turek, in San Francisco yesterday.

He said he's not treated ejaculatory anhedonia before. But he does have patients with spinal cord issues that can be made to ejaculate, but feel literally nothing.

The good news is that on Monday April 5, he's meeting with several of what he called the best urologists/doctors of sexual medicine in the country. And he's going to ask that group about their knowledge of our problem.

I'm hopeful that one of them will want to talk with me. I'll let everyone here know what I hear back from Dr. Turek.

Talking with a new doctor:

Well guys, I just got a call from the Turek Clinic, in San Francisco. I had come across the site a couple nights ago, and submitted a question about ejaculatory anhedonia. The woman who called said that the condition is rare, but that Dr. Turek has heard of it. (She didn't say that he's successfully treated it.)

Anyway, she pulled up the message board while we were on the phone, and seemed impressed that there are so many of us here. And tomorrow (Thursday) I have a 15 minute phone appointment with Dr. Turek. She said she thought he'd be "interested" to hear what I have to say.

I don't necessarily hold out lots of hope, but I've long thought that what we need is a medical professional to take a sincere interest in our problem, and work toward a cure. Maybe this is a step in that direction.

I'll report what we discuss. (You can search for the clinic online, if you care to see the background.)

My update:

I'm almost two months out from my apnea surgery. I've lost about 11 pounds, so I'm now 5 ft 10 and 150 lbs. I think I am sleeping at least somewhat better. At least, my wife tells me that I am. And I don't feel as tired during the day, as I used to.

Sexually, things have still been the same, which is to say, bad. But I had one shining ray of light last week. I started taking clomiphene citrate (Clomid), at a 50 mg dose, 2x per week. Anyway, for two days last week, oral sex felt very good. perhaps a 6 or maybe even 7 of 10. Ejaculation was still a non-event.

But that seems to have worn off. I have had a cold since then, and am hoping that my body's busy fighting the cold, so the Clomid is maybe not working as well. I think I may talk to my doctor about a more regular dose of Clomid.

Four or five years ago, intercourse and oral sex could feel quite pleasurable - even though EJ was awful. But I've been without even THAT pleasure for so long now. And maybe the Clomid is part of the solution for me. I'm desperate to repeat last week's small success.

I'm still taking the GABA+. But I'm not seeing the results of others. Anyway, I'll keep an update going here.

Welsh chap: Thank you so much for your post. I hope and believe that there are others like you who are following this thread. To any who haven't posted yet, please do!

I teared up reading your story, especially because it sounds like your wife doesn't know this is a problem. And knowing how alone I feel even WITH my wife knowing, I can only imagine your frustration all of these years.

A couple of questions for you -

1) Does intercourse feel pleasurable, but drops away at ejaculation? Or is there no pleasure at all for you?
2) Do you have symptoms of sleep apnea or allergies?
3) You mentioned being leaky, with urine. How long has that been the case?

Like you, I think the fact that you HAD a great experience once means that your body IS capable of feeling pleasure. The frustration is trying to find out what might unlock it for you. And the years fly by.

I think there can be value in visiting with a doctor. But you have to choose a good one - which means one who will really listen to you. I think that's more important than specialty.

Because no doctor knows what the cause or treatment is, you'll also have to go in with ideas to try. I would start with some basic blood tests for total and free testosterone, thyroid levels, and GABA.

You could try a dopamine agonist like Wellbutrin XL, or dostinex, just to see what happens. And if intercourse is pleasurable, clomipramine could be good to try.

Without a doctor you should try the GABA Plus, from Twinlabs, if you can find it. I'm afraid it hasn't done anything for me, but two men have had very good success with it, and several others have seen some improvement. If you can't find the Twinlabs brand, that's OK. Just find one that combines GABA with niacin. (See previous posts.)

Finally, I have mixed feelings about telling your wife. (You didn't ask for advice on this, so forgive me for sharing my thoughts.) On the one hand, you're not likely to be able to try drugs or have doctor visits without her knowing. And the support of a loving spouse can be great.

However, I can say from experience that my wife sometimes feels guilty that she can feel so good, while I feel virtually nothing. It's brought us both to tears on more than a few occasions. My point is that if things are going well in your view, is it worth rocking the boat? Hard to say.

Please answer the above questions, and let us know how the GABA supplement works for you.

Any improvement is a good thing. I'm glad to see some activity on that board.

I've been on the GABA+ (Twinlabs) for 5 weeks now, without improvement. I've decided to reduce my Wellbutrin XL, in case that's somehow offsetting the GABA.

A few times lately I've felt as though I COULD build up and feel pleasure, but that my body ejaculated before any buildup could happen. I guess the encouraging thought there is that it would mean my brain is capable of feeling pleasure, if I could somehow stave off the EJ reflex.

I recently had a blood draw to test my GABA levels, so that should be interesting to see.

And I hope to try baclofen soon. (Tried Gabapentin a year + ago, which just killed my drive, and made me sleepy.)

Thanks for the tips, guys. In fact, the GABA+ that I've been taking IS the Twinlabs product. Maybe I need more time, a higher dose, or something different altogether, as has been discussed.

Hey everyone. Great post from a few years ago - the Student Doctor Network. And nice to see our friend, BstnGuy actively posting there.

I've been on the GABA+ for a little over two weeks now. 2 in the morning, and 3 before bed. Unfortunately, I'm not seeing any improvement. So I'm envious of those of you who are.

What's the highest dosage anyone has taken, of GABA?

@danbo800: I'm so glad to hear about your continued success. I'm about three weeks out from my apnea surgery, and have been on the GABA+ again for about 2 weeks. I take 2 in the morning, and 3 at night. No notable improvement for me yet, but I'm hopeful. Your and Alan's experiences are truly the best thing that I've seen on this board since I started it, three years ago.

@EASucks: I don't have to urinate frequently, but I've thought the hypothalamic/pituitary/adrenal axis may be faulty for some of us with this problem. Vasopressin is in there, as is oxytocin, GABA, T levels, etc. So keep researching that.

Finally, can someone PLEASE contact Michele and volunteer to be on TV? I believe we could hugely multiply the number of people who post here, and maybe come closer to finding a cure, if we can get the word out publicly.

Guys - I've been thinking about it for the past couple of days, and it's really quite incredible that two of our members here have had so much improvement with the GABA+.

I mean, who would have thought that any of us could say we're even close to normal.

I'm hopeful to see some results myself. Anyway, please keep posting, Danbo and Alan. You're an inspiration to me. For the first time in a long time, I have some hope.

@danbo800

I'm so glad to hear your report. I've been wondering how the GABA was working out for you. I've recovered from my sleep apnea surgery, but it will be another month before I know whether I'm actually sleeping any better.

I just restarted the GABA+ myself, almost a week ago. (Had to stop, for the surgery.)

What dosage and timing of GABA have you been taking lately? Is it consistent now? And how long did it take for you to feel noticeable improvement?

I suggest that we all try it, and post results here.

@aggiecrew:

Very interesting post, about the urine sample. I had never considered doing that myself. But it seems like a simple way to look for retrograde ejaculation.

I suppose the other important thing would be to take a sample not after ejaculating, to be sure of what a clean sample looks like.

AlBrown and others - I'm really interested in the pudendal nerve theory. I had read about the nerve a few years back, but ruled it out since I haven't had pain that many describe.

But the recent posts make it sound like the nerve could be damaged in a less-obvious way.

AlBrown, it sounds like you've had some pretty detailed tests. You mentioned something about tension. Can you elaborate?

And what could you do to treat pudendal nerve issues?

@alan - The surgey that I had was a tongue suspension / hyoid suspension (or hyoid advancement). It's all internal, and under the chin and tongue. I'm not quite a week into recovery, and they say that the swelling can cause sleep problems up to two weeks after surgery. So I have no results to report yet.

But I'm hoping there's an apnea connection to our problem, and that this might help resolve it.

TV show interviewee needed:

Guys, I've heard again from Michele Spinak. TnT's interview with her went quite well. And he's willing to appear on TV. But he lives outside the U.S., and the TV show's liability coverage doesn't allow them to film outside the country.

Michele requested that I post her contact information here, and encouraged anyone in the U.S. to call her. It sounds to me like they want to do the story - but need to get someone in the states to do it.

Michele Spinak
Sirens Media
office: 301-920-9860
cell: 301-792-9784

Here's her info. If they remove it from here, you'll still be able to find it in the email that gets sent to you when a post is made. Also, if you need it and it's not here, post on the board and ask for it again, and I'll put it up.

Thanks!!

There was also recent discussion about oxytocin deficiency, etc. I personally hope that my sleep apnea is related to our problem. My theory has been that the disruption of the sleep/wake cycle can prevent the hypothalamus and pituitary from creating the right hormones, etc, that they are supposed to.

I am 4 days into recovery from sleep apnea surgery. Too soon to tell if it will help, but I am hopeful.