Hi,
Hmmm, where to start with this?

Put simply, I am male, now 48, and have never (not once) reached orgasm or ejaculated, not thro' masturbation or sex. Getting erections has never been a problem, tho' keeping one when I know nothing is going to 'happen' increasingly is.

I was diagnosed with a progressive neurological disrder > Hereditary Spastic Paraplegia, roughly 7 years ago, and even tho' there is only one case of ED in any form recorded with HSP (orgasm/ejaculation ability maintained) there is no record of penile neuropathy linked to HSP. Needless to say, this has lead to my being frustrated to put it mildly. The neuropathy has reached a point now where I have no sensation, even when urinating.

After years of being told by various medics, that this problem was impossible without a severe spinal injury/neurological disorder, and was psychological in origin, I was eventually referred to a Professor Brindley, who at the time (1994) was pioneering penile vibratory stimulus in the UK. The hope was, that as my spinal cord was intact, this treatment would work, and once the nerves were working, they would carry on working correctly. Unfortunately, two sessions of PVS failed. Even after this there was no follow up investigations, tho' it was obvious this problem was in fact physical, not psychological. In the hope PVS techniques had progressed since my being seen by Professor Brindley, I have since bought a ferticare vibrator, again, this has failed to work for me.

To look at me now, short of the fact I now need a cane to get about, I appear perfectly healthy, and compared to most SCI men, I am, but whereas this sort of problem is more or less a given with SCI, it's not with HSP. My sex life has always been limited, but is non existant now. It's a catch 22 situation, if I say something about this to a potential partner, they don't want to know, tho' trying to explain what was wrong when I didn't know myself, was impossible. If I say nothing I leave myself open to ridicule of my lack of 'performance' (and the latter has happened for the last time)

I'm still clutching at straws in the hope the medics will be able to do more than offer viagra, etc, tho' tbh, that's unlikely. I don't really know why I'm posting this, other than the hope that someone in the same/similar situation can offer some advice.

There is a lot more I could say about my physical background that might pertain to this issue, but I'll leave that till later.

Thanks for reading.

IJBXG

I think you are underestimating women to think that this will matter to every woman. There are many quads who are happily married and enjoy a sexual life that is based upon oral sex and touch. A penis is not the be all to end all to a sexual relationship with a woman. Yes, it will be tough to find the right woman, but it is not impossible.

Are you getting sexual gratiication in other ways? Men who have lost sensation in their penis often get it in other ways. They find that their earlobes or their nipples have the sensations their penis now lacks.

I'm not diminishing in any way what you are experiencing, but I think you need to start looking at the residual abilities and sensations you have - you may be very surprised.

Susan

Hi Susan,
Thanks for the reply.

Perhaps you're right, maybe I've just been unlucky so far, but it 'has' mattered. Bear in mind I've had this problem all my life, long before I was diagnosed with HSP. If enjoyment of sex is one way, it soon leads to frustration for both parties, especially as I could never explain what was wrong.

As I said, my sex life is now non existant, tho' there is a lot more to this issue than I initially posted. I was both physically and sexually assaulted as a child (7 years old) and I ended up losing a testicle. I'd aleays assumed this problem was a direct result of the assault/abuse, but getting the medics to accept it existed physically, was near impossible. The combination of the embarrassment at losing a testicle, and the lack of sensation has meant my sex life has been one disater after another. This problem has been partly solved by having a prosthesis fitted, but is so obviously not real, it isn't even close.

I am not comfortable with physical contact as a result of the above, even something as innocent as someone putting their arms round me, if I'm not expecting it, makes me panic. That might seem strange if it's a woman, but there was a female teacher directly involved in the assault/abuse.

I'm not naive enough to think, even if there was a 'magic' cure out there, that I wouldn't have psychological issues to deal with, but they are as a result of this problem and not the cause. You can't deal with one without dealing with the other, and so far that hasn't happened.

Ian

Ian,

I am so sorry, but I really do think you are looking for the wrong woman. Have you thought about personal ads where you put your "cards" out on the table. That way they know upfront what they are going to be dealing with when it come to you.

I know lots of women who would be very happy with an oral only relationship as long as the oral was good.

I haven't placed an ad in a few years but I did meet quite a few really nice guys that way. My last two relationships including the one I am in now (for 8 years) was from meeting online. I have disabilities and I was able to fully disclose before we met so I knew I wouldn't be rejected on the basis of disability - maybe because we didn't get along or their was no connection, but it wouldn't be because I was something different than they exected.

Susan

Hi Susan,
It's not so much I'm looking for the wrong woman, more a case of I keep meeting the wrong one.

I recently bumped into a old girlfriend, (tbh, she is the woman of my dreams) It was just friendship really, we never got as far as anything sexual, but as friends, we couldn't have been closer, we could talk about anything/everything to each other. She's married now, but it's not a good marriage. As a child she was sexually abused by her father, and I'm the only person she's ever told. She has major issues because of the abuse and because she knows about my past, knows I understand them. We'd not seen each other for the best part of 10 years, she wanted to know if it was too late for us to try again. I told her it wasn't, but had to warn her that things had got far worse for me since we had last seen each other due to my being diagnosed with HSP, that I wouldn't be able to work again, I'm now registered as disabled and I'm living on state disability benefits/my savings, etc, etc.

To cut a long story short, she's decided to stay with a husband who isn't shy at knocking her about, rather than have what would be a restricted sex life with me. This was a killer blow for me, if she turned me down because of my problems, I feel I have little chance with anyone else.

My GP has suggested much the same thing as yourself, that he see's plenty of women who are sick of sex, and that they would be quite happy to miss out altogether. He basically said I must be prepared to be rejected, but being rejected because sexually, I can't perform 'normally' is a lot harder to accept. Like most people, I've met someone looking for a one night stand, but have had to say no. Practically the only place I meet people is in a pub/bar situation. I need a drink or two to relax, but alcohol tends to make my problems more pronounced.

I have considered personal ads, maybe it's something I'll have to look into a bit deeper. Letting people know I've got problems before meeting them would be a hell of a lot easier than picking the right moment face to face.

Thanks for your input, it's much appreciated.

Ian

Ian,

I am NOT suggesting women who are sick of sex, but women who love and prefer oral sex and would not miss vaginal sex. Or even women who like sex toys for their vaginal sex.

I've met some really great guys online. I lived with one for 3 years and now have been in a relationship with another for 8.

There are websites that cater to people with disabilities with personal ads - but I don't think you need that. I just think you need a woman who loves oral sex and dislikes vaginal sex. (I counted myself as one of those for many years.)

Susan

Hi Susan,
Yeah, I know you weren't suggesting that, my GP is trying to help, and I just posted his perspective on this.

Sooner or later I'm going to have to accept my physical condition isn't going to change, tho' I'm awaiting a appointment to see my neuro in a few weeks, regarding the possibility of trying a drug (4-AP) that seemingly can help with increased genital sensation, and bladder/bowel control. He's forewarned me that it is likely to be of no use, too many adverse side effects, etc, but I won't know until we've spoken in detail.

Something/somebody will eventually turn up that will accept my situation..................he said hopefully.

Ian

Susan,
I meant to include this in my last post, but forgot.
There's one aspect to all this, that I seem to be the only person who's even considered, ie 'safe sex'.

With any new partner the use of a condom is common sense, but for someone with virtually no genital feeling/sensation to start with, the use of a condom makes things all but impossible.

I can understand you thinking I'm focusing entirely on the negatives here, but in my view, I'm simply being realistic.

Ian

Ian

No, I think you have painted yourself into a corner. You have decided that because previous relationships haven't worked that none will. Well let me let you in on a little secret - most people feel the way you do after a failed relationship. No one is every going to love me because of A, B, C, or D - and yes as long as you keep thinking that way - no one will. And not because of abc or d, but because you have stopped making yourself available emotionally.

I know people in sexless marriages that are very happy. I know people who are in a differently style sex-filled marriage that are very happy.

You have become a pessimist and going to a doctor who is clearly also a pessimist isn't helping you.

If you put an ad in the paper or go online - you can spell out your values - including that you intend to practice only safer sex. Most people will be relieved to see that. Women usually have to start that conversation and it is men who usually want no part of condoms. Waqnting safer sex only makes you look more appealing to most women not less.

I know it isn't easy. But stop making excuses. Get out there and relax and be open to the possibilities.

Susan

Susan,
You're right of course, I have painted myself into a corner, but as you say, it isn't easy getting out of it.

It'll be no surprise when I say a few close female friends have told me the same things as yourself. On the other hand, I've heard those same female friends openly discuss their sex lives, often to criticise their partners 'performance'. I've been down that road a few times, long before I had a medical explanation for my problems. I'm more than reluctant to put myself in a position again where I leave myself open to 'public' humiliation/ridicule again. It's happened before and it wasn't pleasant.

I've not become a pessimist over this, it's my nature.

Re safe sex, I think you missed my point.
The use of a condom is pretty much a given today, but in my situation of having very little genital feeling to start with, using a condom makes things far worse.

I've got to be honest, I'm looking at this from strictly a male of view and was hoping to get replies from men in a similar position to myself, ie how they've got over the frustration this type of problem involves.

Ian