My Story

[Nocturne]

So this is my story.

Two years ago, I would have laughed at the idea that I might end up suffering from ED, or any other health issue. I didn't have health issues. They were not my thing.

I was 41, and obese (60 pounds overweight), but I'd always had a high sex drive and never had any problems in bed (other than perhaps some very minor PE issues when I was younger -- no more so than I think is pretty typical of young guys). I'd been married and divorced in my 20s, and the divorce had in part been due to my ex's depression and resultant avoidance of sex. When I met my current wife, it took me a long time to trust that her apparently high sex drive was a real thing, and not just something that would fade away once a commitment was made (it did not, and she is wonderful and irreplaceable for so many other reasons too).

I had never been athletic, but neither had I always been so big. In fact, after my divorce I had joined a gym and lost maybe 30 pounds, but gained it back and more after ten years (and three more kids) with my current wife.

Anyway, my penis worked great, and I would have sex and/or masturbate at least once every day or two, sometimes more often. It never let me down. And my wife was happy -- she is easy to please, though (quick and easy orgasms, and a lot of them).

About eight months prior to "the incident", I had noticed that my erections were not quite as firm as they had used to be. I took this in stride, figuring that I was after all over 40, and things do change (as they had before -- sometime in my early 30s I noticed that I didn't get quite as hard from mere kissing anymore, and that a towel hung on my erection would pull it down instead of being held up, etc), and I still enjoyed sex as much as I ever had. My wife didn't seem to notice, so I figured it was all good. Looking back, I also realize that I had almost completely lost morning erections over the same time period, where three years ago and earlier I had often woken up with strong hard ons that would drill into the mattress. I did not understand the significance of morning wood, however. About a month before "the incident", I started noticing my penis "inverting", winking almost completely into my body at odd times like when I sat down or got into my car. This was annoying, and I knew it couldn't be good, but I figured it was due to weight gain and hadn't gotten around to worrying about it. Also, I had gotten to the point where I needed oral sex or self touching to get hard -- even nude play just didn't do it anymore. But these things were recent enough, and it was plausible enough that they were maybe "normal" for a guy who had turned 40, that I didn't let myself dwell on them.

Then my wife and I took a trip, our first trip alone in years. It was supposed to be a sex weekend, but then my wife started her period, and I figured that I'd be limited to enjoying a blow job or two -- which was fine with me, as I was curiously tired (I rarely slept more than 4-6 hours as I tended to stay up late nights and had to wake early in the morning for work) and didn't really want to put in the work required for sex anyway (this was an unusual way for me to think, not like I usually thought at all).

I will add that I actually remember the last time we had sex prior to this. I was wheezing from the exertion and felt tired enough that I just let myself cum right after she did for the first time (I more typically would bring her off 3-5 times first). I knew that couldn't be good, but again, I wasn't too worried about it yet.

We took in a show, had some drinks, and came back to the hotel room, where we did fool around until my wife decided she wanted sex, period or not. This freaked me out more than it should have, but not being able to see much in the dark hotel room, I started wondering exactly how much blood was flowing between the two of us, an imagined gobbets of clot, and -- lost my erection inside of her.

Well -- it lost most of its firmness, anyway. She still came, and so did I, but it did NOT feel right. And, despite the fact that there wasn't a LOT of blood after all, I dreaded her wanting sex in the morning (because of the blood, or my lost erection, or a lack of interest on my part?). Sure enough, in the morning she went down on me and I could NOT get hard. Period.

She had business to attend to that day and I wandered around the strange city in a fog. Why wasn't my dick working? I was freaked out. Then I got online in the hotel and read about ED, and its causes and connection to heart disease, and freaked out more. I had not been living healthily -- I knew that -- but I was only 41, and figured I had ten years or more before I seriously had to worry about my heart. And yet here I was with a mysteriously limp dick, and how could I deny the changes I'd noticed in the previous months, and what if this was IT -- me washed up at the very start of middle age. What was I going to DO?

I was totally freaked out! I tried playing with myself -- no luck. I was suddenly a limp noodle. It was Hell.

I called my doctor when I got back home, and made an appointment to see him. I'd only just met him the year previous, as I had turned 40 and figured it was time to get myself a GP (I had not seen a doctor regularly in close to two decades -- when I got sick it was always the same thing (pneumonia or sinus infection), and I went to a local clinic for that). As it turns out the night before I could see him, my wife and I had successful intercourse, and I figured that maybe everything was OK after all -- but in the few days prior to the meeting, I had finally gotten my bloodwork done (because I was freaked) -- bloodwork I had kept putting off after our first meeting -- and learned that my cholesterol was godawful (235 or so total, 35 HDL and 185 or so LDL). Shit.

Doc was concerned about cholesterol but assured me that at my age, heart disease was unlikely. He wanted to see changes, though, or he said he'd have to put me on a statin.

Well I had already cut out soda and fast food after "the incident", and never wanted to look at KFC again if KFC had killed my dick. My dick went back to being unpredictable, and that was nerve wracking, so I made an appointment with a urologist within a week, even as I continued to lose weight from diet and exercise changes. I was terrified that my cock was breathing its last. About half the time it wouldn't get or stay hard long enough for sex. My wife, God bless her, was great about it, but I was still a wreck.

Urologist ran his tests and all bloodwork looked normal - except my testosterone level was 130 ng/dl, which was in his words "approaching castrate level". I was not happy about this but at least it was an answer to what was going on, and as I read more about it I learned that SOMETIMES raising T could cure ED. Losing weight and being active could raise T, so I did much more of that in addition to starting Clomid per Doc's orders.

Doc also gave me Cialis, 5 mg per day.

All was great for about a month, but I was still rattled and did NOT like the idea that I was on "old man pills" at 41.

Then I took a trip alone and tried sex with an escort (my wife and I have an arrangement, and have since the beginning, we are totally open and honest about it). I was ready to celebrate my recovery and was planning to ditch Cialis after success with this girl -- except that I crashed an burned, could not stay hard for her, had to settle for a limpish hand job. Ditto the next day with a different girl. I was crushed. I told my wife all about it when I got home, and things did get a little better, but then rapidly worse, until I was totally limp about half the time we tried sex and just barely firm enough for penetration the rest of the time (and this was with 5 mg Cialis every day).

We fiddled with Clomid and Anastrazole, and my T levels went up a bit but never above the 500s. I dropped Cialis and eventually things did start to get better -- but not what they used to be, I could almost never have erections while standing or in the shower, and having her on top was almost impossible, and I'd go limp almost immediately after stimulation was removed. I was afraid to masturbate, I was so scared of losing wood in the middle of a session. A penile doppler showed flow of 40 m/sec, which my doc said was "normal", but when I read more about it it looked like it was about as low as it could go and still be called "normal". I was worried about my heart -- how badly were my arteries fucked up? -- but both docs assured me that everything was fine at my age and that a coronary artery calcium scoring test would be as waste of time and money.

I limped along, starting to do "OK" in bed and months went by without me losing wood during sex (although morning erections, which I understood to be important now, were spotty at best and never as hard as they used to be, and neither were my sexual erections). I worried about my testosterone -- in fact I had bad anxiety and worried about everything, especially returning to the Hell I had been over the summer when even Cialis didn't work. I worried about my flow inevitably slowing further over the years and wondered if I'd be impotent at 50.

Then my GP doc heard a heart murmur. He said it was probably nothing, but the sonogram he ordered just to make sure revealed aortic stenosis -- in a tricuspid valve -- so degenerative calcific aortic stenosis. Sometime guys don't get until their 60s. Doc played it off as nothing to worry about, but I read about it and it inevitably leads to open heart surgery and has a serious impact on lifespan. And I was sure that my whole circulatory system was fucked now.

Talked the urologist into signing off on a CT scan of my heart, hoping that the CAC score would be low even though my aortic valve was gunked up. It was not low. at 156, my CAC score was almost off the charts for my age -- in the worst 1%. And I kept reading about how this test was THE test, the best indicator of lifespan and healthspan that we had. And I realized just how cruelly fucked I was.

Oh, I'm fine for the next ten years -- 20, probably. But then even a modest CAC progression of 10% per year put me in the 1000s, and I had aortic stenosis to contend with too -- and ED became the least of my worries. And when ED is the least of your worries, you know you are pretty well hosed.

I have since read some more calming stuff about my heart situation, although it is still very bad, and I think I am unlikely to live much more than my late 60s or early 70s. Not much time to enjoy a retirement, and that's if I live to see it. Meanwhile, I have read more about implants here and resigned myself to needing one eventually.

And my cock has actually gotten a bit better, to the point where I do not even try things like cock rings anymore (unless its just for fun), and I can successfully achieve erection while standing up with light touches. Is this because of better T? Worrying less about erections because I am busy worrying about my heart and dying young? Weight loss (I have kept the 60 pounds off)? Who knows?

I am glad my wife has experience with other women, as I know she is able to get off without an erection in sight, and this has eased my mind a bit, but -- I do not even want to think about losing my ability to penetrate her. Or what she will ultimately do if I cannot.

Anyway, that's me, and my story. I am glad I have come here and seen the satisfaction that many men have with their implants, and plan to get mine sooner rather than later as I am unlikely to enjoy a long life and would prefer not to suffer through ten years of crap erections and frustrations only to die of a heart attack six months after getting the damn surgery. I don't need the implant now though -- getting by pretty well on very low dose of Cialis (2.5 mg EOD). And of course the Clomid (though I wonder if I'd get better results with real TRT, as my T levels seem to trend toward decline (375 ng/dl at last reading).

My life has been radically altered over the last two years.

[David_R]

Brother, thank you for sharing your story with all of its intimate details. I feel truly honored that you would be so open, in order to not only introduce yourself but also to let other guys in similar situations know that they are not alone. You are a good man.

[Jimbruski]

Nocturne,

Thanks for sharing your story. You've definitely stumbled into the right place. Most of the brothers on this site share a similar story as yours. I think you'll find that you are not alone. Feel free to ask questions. I guarantee you'll get many good answers and usually with a little humor along the way.

I wish you all the best of luck in the days ahead and on your journey, if you choose, to an implant!!

Jimbruski

[thanos]

I have a similar story like you and I am only 35...The first incident of ED was when my girlfriend was on her period. I still wonder if there is a connection...Could menstrual blood cause an infection or something? Before that I was fine...And after that I became completely impotent in a 3 months period...

[Donnie1954]

Dude that is scary! Don't mess with anyone else blood! Find answers and solutions here on FT. Post me on my threads anytime. Welcome Nocturne and Thanos.

[Nocturne]

So, an update. I think I have found a root cause for my heart issues, and probably some of the ED as well.

Got a new cardiologist who thought I might have a mild form of familial hypercholesterolemia. She ran some advanced blood work, including a test for Lp(a) -- lipoprotein a. Lp(a) is a type of "sticky", nasty, damaging cholesterol that isn't usually looked for because it is genetically determined and does not really respond to changes in diet and exercise -- or statins.

A score of 30 nmol/Liter is considered normal. 75 or above is "high risk" for heart disease and heart attacks -- and aortic stenosis, which I have. 125 or above is "extremely high risk".

My score was 390.

I later learned that I am homozygous for a bad gene that causes very high Lp(a) levels and increases the odds of getting aortic stenosis further. So everything is starting to make sense now.

It's like I was born a diabetic smoker and didn't know because there were no symptoms and it was never checked for. And every heart health misstep I ever made was piled onto THAT.

There is a drug in phase 2 trials right now that can lower Lp(a) by over 90%. This could be a lifesaver for me, although to a large extent the damage is already done.

This has been a living nightmare. I *wish* the ED had just been from a venous leak that could only be cured with an implant -- that would have been a much kinder fate.

But at least I know why my heart is basically 70 years old now.

[David_R]

It is common, I understand, for E.D. to be a symptom of a larger health issue. In my case the year after my prostate was removed. when I wanted to get an implant, my cardiologist would not give me surgical clearance. "Something is going on," he said.

Of course I was disappointed in not being able to get an implant, but I am glad this doctor wouldn't clear me. Not long afterwards I had a massive heart attack that required quintuple (five-way) cardiac bypass surgery. If I had been on the table getting an implant and this had happened, I would have died.

So I am very grateful that my cardiologist recognized that "something" was going on. (I had the implant inserted the next year, in 2002.)

[Donnie1954]

Isn't it good to know, that our God, our gracious, loving, compassionate, heavenly Father, is in control? I'm glad you didn't die. It wasn't your time. When I was robbed at gun point and abducted, or tried to commit suicide, God had other plans. It wasn't my time.
Donnie.

[Flannigan]

Nocturne,
Thank you for posting your story. Sometimes it's therapeutic to put it all out there for the world to see. I'm sorry for the all the challenges you are facing. I too feel as though I am facing a similar situation and am somewhat hesitant to keep digging into my ED problem only to discover a similar root cause.

I am 53 now and have been suffering from ED since I was about 47. At first it was happened on occasion with a new girl and I played it off as stage fright. I could always masturbate without a problem. Then I started taking about 50 mg of Viagra and had great success. I did not feel a heavy need to get my ED problem checked out because I was not married at the time and I was always able to use the Viagra whenever I was with a girl. I am also in relatively good shape and went to the gym 3 - 4 times week. My cholesterol levels were all in check and at 6'1" 225 lbs I am not overweight.

However, more recently I met the woman of my dreams. She is smokin hot and has an insatiable sex drive. Wants it everyday and all the time. I was in heaven for the first 2 years. I was taking small amounts of Viagra and the sex was mind blowing. Unfortunately, recently the side affects have caught up with me. I have terrible body aches now from the Viagra and they last for days. I have tried Cialis and Levitra as well and they are even worse. So I finally had to come clean with my girlfriend and I had to tell her I was taking Viagra. She was a little pissed that I had been hiding it but she eventually got over it and is trying to be supportive but it's proving to be a bit more difficult now for her since I am not drilling her on a regular basis.

So I finally started making some doctor appts to find out what the heck is going on. I was only 52 and figured I should still be getting pretty good erections considering I was seemingly in decent shape. So in reviewing my past bloodwork my doctor did notice that my T levels had been low but not alarming low. I was always in the 225 - 300 range. We did some more bloodwork and my T level was 225. He put me on Anastozolone which brought me up to mid 500 and I did have some good morning wood but my dick is still not working as well as it should. I can still masturbate but it takes some heavy hand action and if I stop it goes away quickly.

I go back to my GP tomorrow to look for more answers. He has given me a prescription for Androgel but I haven't started on it yet. Wondering if getting my T level up to the 700's might help my problem. If that doesn't fix it then I am concerned about my heart as well. Heart disease does run in my family so I do have some concerns about it. I really don't want to lose my girlfriend over this and I am getting very concerned that might happen soon unless I can solve this mystery.

Again..thanks for sharing your situation with us and know that you are not alone. I am still hopeful that I can get back to having sex naturally but I am getting fearful of finding the truth about my problem.

Respectfully,
Flannigan

[tomas1]

I'd guess that your next stop might be injections. I was squeamish at first, but now it's quick and easy usually.