SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Sexual Dysfunction
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

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Sexual Dysfunction

Hi All,

I have gotten some recent messages from folks about this subject. This is the topic we never want to discuss because we are either shy or embarassed.In reallity this one of the most allienating and menatlly disabling situations to deal with. But this is somthing that needs to be talked about.....So please leave your inhabitions at the door.

Just the term in itself has condentations that there is somthing wrong or inadaquate about  you. But with Neurological problems this is somthing that alot of us deal with. It can make us feel very insecure and destroy our self esteem in both male and females. Most often it is both a loss of feeling and desire. But what comes first the chicken or the egg? Neurological dysfunction in itself can be devastating mentally and that can spill over onto every aspect of our lives. But when there is also a loss of feeling that can change the way sex feels.

I personally experience both. For me the loss of feeling came first and the lack of desire quickly followed. I was also experiecing hormonal changes and that just made things much worse.I was experiencing paresthesia from head to toe and everywhere in between. I also felt extremely fragile asthough I was going to brake.
But as I slowly got use to "The New Me" I felt more at ease with my issues. Let me  explain "The New Me. There came a point in my journey that I figured out there were certain issues that  may never resolve . Things that I need to accept and just learn to live with the best that I can. So while I am still me , I refer to myself as  The New Me now.

So once I accepted that things slowly become easier. I started to do my make-up and hair every day agin. Do my nails and the things that made me feel pretty and like a woman agin.We as women all have our little things that make us feel pretty and sexy. I started to  feel better mentally and wanted to become sexual agin.

I will admit that the first time that the husband and I had sex agin it felt different. It took much longer for things to get going for me. I could not reach orgasm and it is still hit or miss.But I really enjoyed the closeness agin. I also proved to myself that I was not going to brake. Things got easier and better in time. I have accepted the fact that our sex life is just different now.

Not bad, Not dysfunctional or Inadaquate Just Different!

I sort of look at it as learning how to make love agin like we did when we were younger. You did not know automactically what worked for you .You had to learn over time.

I hope that you guys will share too....Please do not be afraid we are all friends here.

Please Take Care, Theresa



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12 Comments
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Am so glad you have started this as a new thread, I wanted to respond to your other comments but didnt feel it appropriate there. Thank goodness for the un-shy and blunt !!! I am the opposite, this topic is something I have found very difficult to talk about to anyone (see still cant bring myself to say the actual words!!!!!)

I have really felt that i have been letting my partner down, pushing him away all the time either due to extreme fatigue or the unbearable tingling and distorted senstions in my arms and legs, loss of feeling basically anywhere. It is so uncomfortable to be hugged sometimes even . Anyway he never puts pressure on me and says he understands, it has made it too easy for me not to make any effort. But I do miss the closeness as he must do,  after all it is such an important part of a good relationship.

I followed your advice on Valentines night after explaining at length how I have been feeling (a useless freak for no known reason!). It certainly was very different! But it is hopefully a good beginning. As you say it is better to have something even if it cant be anything like in the past.

I feel so much better knowing it was not just me that has this kind of problem.  Thanks
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Tingletoes,

For me I think that I let myself fall  into a vast pain/illness abyss. I cant think of anything else to call it right now...But I was scared and afraid of what was happening to my body that it became all consuming. There was nothing else except ILLNESS!

I think sometimes that we forget about life and how to live it because of our own private abysses.(is abysses a word?). Anyway you know what I mean.

I too am hypersensitive to touch. It is totally out of proportion to what is actually happenning and it is called Allodynia...

Please dont refer to yourself as a useless freak...Be kind to yourself...

I am so happy for you. You went for it girl!
I think it is a great beginning and in time it will get better and easier.

Please Take good care of yourself!!!!







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Thanks, Stormy, for raising this too often neglected question.

I can't imagine any doctor being interested at all, going by past experiences, in a woman's sexual satisfaction.

After my cerebral event, I did my utmost to get back on track etc etc. After all, the  just-qualified, over-confident little puppy doc (he looked about 12 yo my partner reckoned) at the hospital was so sure it was only a migraine. I so wanted it to be a migraine too, my life was happy, contented, successful, lots of plans, a new marriage in the planning stage and a house move to a lovely old house in the country on the cards. I so wanted to just get better and back to normal asap.

But I just didn't get better...the cerebral oedema (diagnosed a few weeks later but not treated!?!) just kept on fuzzing my head up. My partner, not the most empathic person in the world but nonetheless very concerned, was in denial that I was ill and so I did my best to get on.

I've never told anyone this...I''ve been utterly crushed when I've told doctors my gross physical symptoms and they've just fobbed them off as nothing. But all of this was NOT nothing. Anyway, after the stroke (labelled thus 3yrs after by GP), each time we'd make love I went blind in the eye that was originally affected by the stroke and would slide off into a semi faint/black out.

It was horrid and worrying. I couldn't work out what was going on and I knew nothing about c-spine anatomy and blood vessels back then. It was also very disconcerting for my partner...having to stop in the middle of things and lose the moment to what was actually a medical emergency if we'd only known.

I'm sure this contributed to the demise of our relationship. And yet, if only the doctors had diagnosed properly - or even bothered to listen - I'm also sure that pain which we both suffered at the untimely end of our relationship could have been entirely averted. But according to the doctors I wasn't poorly...yet the unacknowledged, untreated illness wrought total havoc throughout my life and the lives of all those close to me.

I can imagine only too well how doctors would have contorted this blindness during sex as a load of psychosomatic b*ll*cks. After all, they've done that time and again with most other sx I've honestly and plainly reported. I could never bear to parade my intimate life in front of such callous people only to have it thrown back at me as some sort of sudden psychosexual problem on top of all else. What is wrong with these medics? Seriously, what is the matter with them that they have to dub our illnesses with some convoluted psychopathological taint or other?

Obviously, the blindness and lightheadedness was due to occipital vascular occlusion - purely physical and anatomical - as I scrunched my neck up. Simple, and as devastating, as that.

I am so sad as I write this - sad for me and my former partner, and for our families. I am terrified now to the point of being literally scared witless of the tremendous and unwarranted power doctors have to cause such pain and suffering in people's lives. And they carry on blithely disregarding us patients and denying any responsibility for the almost inevitable anxious/depressed/sad state we Limbolanders invariably end up in.

Yeah, I guess I too feel like a freak to some extent, alienated from normal life now. And my life cut off in its prime - even if I could meet a new partner, the thought of going through all that again just fills me with dread. And, let's be honest, there aren't that many people who'd get involved with someone with these sorts of disabilities...and they are disabilities that either need never have been or which could be greatly ameliorated by clear and early understanding.

If I never spoke with another doctor in the rest of my life it would be too soon...(so much for the 'attention-seeking' that they attribute to us! Dear oh dear, how delusional!)






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Sammy,
Thank you so much for responding.That took alot of strength.

Please do not speak badly of yourself. Also do not set up road blocks for yourself. Do not doom yourself verbally before you even try.You are a caring,loving and very deserving person. Love is out there if you allow it to be.

Unfortunatly illness can bring out the best and the worst in us. It's one of thoses instances that you don't know what will happen untill it happens.

I am not going to B.S you and tell you that everything will get better.But I will tell you that sh*t does get easier. You are who you are. You cannot change that. But you can try to see things differently. Try to accept the New You.I know that may sound corney but it really does help. When there are things that cannot be changed you have 2 choices. 1 sink as deep as possible into an abyss and be miserable. Shut the world out and be angry at yourself and every one around you. Or 2 N*t up and deal with the cards you have been dealt.You are a strong and intellegent person.I am sorry for being so blunt but you know how I am.

When was the last time you did somthing nice for yourself? We are woman and even the most frugal of us loves to do somthing selfish once in a while. Go to the spa ,go buy somthing pretty. Anything  that makes you happy.

Please Take Care, Theresa


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I was afraid that folks would not respond to this. It is unfortunate because I know that there are so many of us that deal with this. By not talking about it you are ultimatly only hurting yourself. Try to talk to your doctors or some one . This is why  Maria started this forum so that we could discuss issues like this....

I really do hope that others will want to share.

You are not alone....

Theresa
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dearest sam,

your story just shows how profoundly illness can rattle the foundation of every aspect of our lives.  i thank you for being so brave and sharing it with us; i have to say that i was moved to tears.

many hugs and blessings to you,
binx
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I envy those that can continue with a relationship, albeit differently. Having tried and failed, I don't believe I will ever have normal intimacy again.

Much thanks to those that have and those that will share their stories. This is definately a difficult topic.

Hugs to all.
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Thank you all so much for sharing.Yes this is definatly a difficult subject but it is also a very widely spread problem.

InPain4evr,
Please dont just give up. Even if you have tried and failed in the past that does not mean that it will always be that way. What is normal intimacy anyway? You can find somthing that works for you and makes you happy.  :0)


I hate to admit it but Sammys post made me cry. I know how she feels and at times can feel impossible for anything to get better.


Like I have said before things may not actually get better but they will get easier with time.

Some of you may not like what I am about to say next...This is only my opinion.
Illness and other really bad things can bring out either the best or the worst in people. I have heard so many folks on here say that their relationships have failed due to illness and the stress that goes with it. While that may be a contributing factor that is not the true reason. I feel that if your partner could not deal or was not willing to deal with it then maybe they were not the person for you to begin with. Some people cannot deal with tragedy.I am not saying that they are bad people. But people fall into 3 catagories. The strong, the weak and the just dont give a F**ks. The strongs are the ones that do whatever they have to do to and stand by no matter what even when everything  is $hit. The weaks they just do not have the strenght nor the mental capacity to deal with tragedy. The  DGAF's they are the ones that want everything easy and dont want to put in the effort it takes to make things work. Exciting the situation is just the easiest option.  We come in contact with all 3 of these people in every form of relationships. Friendships,Sexual, Loving,work and everything in between.Unfortunatly it is often too late until we find out someones true colors. But you have to make a decision to either close yourself off and not let anyone in for fear of not knowing who this person may turn out to be. Or be cautious but open to relationships. Or just be a relationship $hit magnent. Whatever you choose just make sure you are happy and it works for you.

This is probaly one of those paragraphs where I typed before I thought.....

Please Take Care, Theresa




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I could so hug you guys...((((xxx)))

Thank you so much for your understanding and kindness. I've not spoken with anyone about this before. It felt a bit risky, made me feel very sad and vulnerable. I'm so sorry that my story made people cry. Normally, in order to get by I suppose, I default to anger - it feels like a stronger position. When I think about what happened between ex and I because of the misdiagnosis it just feels like my heart is dissolving away into great floods of tears. It so hurts, even now - it's the dismissive injustice and the needlessness of it all I suppose. Like being found guilty and sentenced without any evidence.

My ex was so angry at me for still being ill when the docs kept saying there was nothing wrong. It sort of built and built and I had no way of convincing anyone that it really was that seriously physical, especially when my speech and cognition was still so disordered.

One bit of me says that you're spot on Stormy - that you're better off without people who can't stay the course...'in sickness and in health' and all that.

On the other hand, another bit of me says that ignorance is hugely corrosive, the lack of knowledge makes people's minds run riot and leads to all sorts of misjudgements about others, and even their partners (or patients!). My ex is a fascinating and difficult mix of cool/calm/supremely logical/very intelligent when there are rule books about and tangible explanations yet, on the other hand, goes to pieces when the unexpected and sudden things happen: someone who needs a lot of reassurance behind the scenes and who can't at all tolerate uncertainty. I suddenly and devastatingly couldn't be a reassuring rock offering certainty anymore.

We're all different, we each have different strengths/weaknesses. What would have saved our partnership is a swift and clear diagnosis and proper knowledge so that we could have amended our life together accordingly. Bless him, I hope my ex has found a superhealthy woman who can provide the high level of security and reassurance. (I still can't bear to find out...)

I completely agree with Stormy's categories. The strong stickers are as rare as diamonds and far more precious. I can forgive those who are weak (and there are MANY out there who masquerade as strong yet who crumble after only a few weeks of being close to illness etc). But I now have just about infinite disdain and disgust for the DGAFs. Are they human even?! I don;t know, but there seems to me to be a vast army of them out there!

One of the great things about getting older is that we each have histories. So, in many ways, it's easier to work out which category people are likely to be in. Leopards don't change their spots and neither do people change their basic modus operandi - not essentially. You just have to look at people's track record!

Hey! Let's hear it for the good guys, the Strongs!!  I know who you are now!! Still, the likelihood of me meeting one of these rare diamonds is about zero right now *sigh* , so I'm actually contented with deepening the friendships I have with all the Strong friends/family I have still. Did I make this up just now or did someone say that 'overcoming adversity together brings you closer and creates more love'?!

And another apology! This started off as an exploration of sexual dysfunction caused by whatever neurological diseases we have and I've turned it into some ramble about love and intimacy and partnership...Tch! (You should have stopped me after the first sentence...hahahaha!!!)

Thank you for listening though...;-)
big huggss to all
sammxxx




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Sammy,

You use this for whatever you like. Sex/intamacy/partnership it is all connected anyway.
In this particular instance I think that ignorance is a cover for fear. We as humans fear what we don't understand.

Here is another typing before thinking moment I have to say this!
It is not now and never was your fault you became ill!
I do agree that a life of uncertainty can be very difficult but $hit thats the way life is.
It was your partners decision to exit the situation and there is no one else to blame.Not the ignorance of the doctors and definatly not yourself for not being his security binkie anymore.
You are ill! You do not need to be any ones reassuring rock! It is time for some one to be yours! I'm sorry but I had to say that to you ....I am speaking to you as my friend!

I need to give a bit of background on myself here and why I know first hand what it means to stick by some one who needs me.

I got married the first time when I was 18 yrs. I was young ,dumb and thought I was in love at the time. My parents were not happy but the supported me.
About 6 months after we got married my husband was involved in terrible car accident. He had a flat tire and was putting on the spare when he was hit by a speeding car. The impact was so hare it knocked him out of his shoes and into the air. It threw him about 50 feet and he landed on his head. He did actually die several times at the scene but was revived. He had a massive hematoma and the brain had shifted in the cavity. He also had internal bleeding and numorous broken bones. They put him in an induced coma for about 3 weeks. The doctors told me that they did not know what would happen when he woke up.They prepared me for the fact that he may not know who I am. Well when they woke him up he did remember me. But he could not walk or move his arms on his own.He had severe cognitive issues. After about 6 months of therapy he did relearn to walk and do basic things for himself. But the cognitive issue remained. He never was the same.There is more to it but I tried to shorten a bit,
I was only an 18 yr old girl and dumb as a box of rocks ( like all 18 yr olds) but I still knew it was my place to be by his side and take care of him.
We did eventually divorce 10 yrs later .We did get married too young and we never had a chance to experience the world. We were not perfect. One day it escalated and he knocked the $hit out of me and I kicked him out and never looked back.

I have been both the  partner and  now the ill.. I do consider myself one of the strongs but I have become very hardened and jaded because of it.

Please Take care, Theresa

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Oh dear God, Stormy. That was an awful thing to happen to your husband - and an almost intolerable burden for a young woman. Kudos to you for sticking with him for so long - really big kudos. And violence, mental or physical is never tolerable, ever.

Thank you for your heartful friendly assessment. You're absolutely right. I know I wouldn't have walked away - and I deserve that reciprocated commitment. It is as it is. Who knows...? We don't know the real reasons behind the 'reasons' things happen, do we?

You wrote that you've become very hardened and jaded because you're a Strong - on some levels it's what the last 5yrs or so has done to me. But 'hardened and jaded' can also be turned into more positive: you're much quicker to get to the heart of a person or the matter in hand, you don't waste precious time on 'black hole' people but give 101% to those who deserve your attention, you focus on the more important things in life like quality in friendships and relationships and springtime and puppies and springcleaning ;-) = the rest can go hang...

There's me doing the Miss Pollyanna thing again - when I could often be accused of being hardened and jaded too!

samxxxx

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Sammy aka Miss Polyanna,

Thank you for the Kudos.But I dont feel I did anything special at all. I just did what I was suppose to do.

Your right we just dont know the reason ....

I do feel as though my protective wall is a bit too high sometimes.(Consider me Pink in The Wall) I have a tendency to be closed off. I know you would never have guessed it from my very open posts on here.But I am an introvert.
I assess whether or not someone is allowed in my circle of trust withinh about 5 mins of meeting them. I dont feel that I give people enough time to get to know them .
But once you have managed to scale the wall I am with you 101%. I am loyal to a fault.
I do prefer quality to quantity.
Yep frienships,relationships,springtime,puppies and cleaning..Thats me.....I am so difficult  and yet so simple at the same time..LOL I always say I am one big contradiction..

XXXX Theresa


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