Libido & Chiari as a Twenty-Something-Year-Old

So, this is not a question I ask easily. I am an extremely private person when it comes to the things which I feel I fail at, or which I feel are private matters between me and my partner or my family, but I am getting painfully close to giving up on this issue.

To premise my issue I need to start with a short version of my story involving chiari and my partner. I began to get symptoms at age nine after falling backwards off the top of a set of bleachers onto my neck. I was actually lucky that I was able to walk away from the fall at all, but because of a lack of education on the condition where I lived combined with the continual dismissals that my parents recieved from doctors ("But Doc, we have to literally wrap her in ice and she screams and screams from pain and she has these headaches. ALL THE TIME.." "No, she's just going through normal growing pains and probably it's just her glasses causing the headaches." and on and on and on) I was only diagnosed with Chiari when I was eighteen and only after it took a turn for the very, very severe. I had surgery almost immediatly and it was completely successful and really helped fantastically, although not to the point that my symptoms are totally gone.

I met my current, long-term partner only about eight months before my diagnosis and began to date him about four months before diagnosis. He came into my life exactly when I really needed someone like him and has just been such a fantastic support and friend and lover to me that I feel honestly blessed to even have known a guy like him. Although some might find some sort of hidden twisted meaning behind this, he truly reminds me of my father only in that he is such a strong and supportive person.

The problem I'm having right now is that, well, we don't have sex. Ever. We don't do anything sexual. Ever. We did, very early on in our relationship, but not in around two years and I can tell that it is only his loyalty and love for me that is keeping him from being extremely hurt by it. Each time I turn him down or pull away it gets a little bit worse and I just am becoming more and more devestated by the idea that I might lose the first person I've ever really loved in this way because of something that I feel I SHOULD be able to do easily. I just keep wrestling with the idea that this is my fault and that I am hurting him and that there is something fundamentally wrong with me that I just have no idea how to even tackle.

I used to have a sex drive. I started feeling attracted to guys at around the same time that everyone else around me began to develope some sort of sexual attraction, but sometime after my symptoms took a turn for the worse it was as though a switch was turned off inside of me and all of a sudden it was as though sexual desire had never existed for me in the first place and sex became painful. Now, when my partner and I first met I had recently gotten myself out of a dead end, fairly terrible relationship with a guy I had mainly only stayed with for two years because I was secretly insecure that someone else would love someone with my health issues. I've never been an insecure or depressed person and I've always tackled things head on with a healthy self confidence, but every person goes through such things at some point. My partner and I had a sex life in the begining of our relationship mainly because I wanted to feel wanted and because I really, really liked this guy.

I don't have any other body related issues. My pain is under control. I am beautiful, tall, perma-thin and confident. I don't diet, I excersize as much as possible (which, while not that often, is often enough to keep a weekly basis going), I have fun and treat my partner to surprise trips to Paris and movie nights, and do well for myself in college. I am a happy person. My condition doesn't control my life. My guy is amazing. Seriously amazing. The kind of guy that you don't think exists until you meet him. My only problem is that I love him so much that to have this unspoken tension between us is breaking my heart and I feel like both of us deserve to have a normal, uncomplicated, unstressful sex life.

I had such high hopes that surgery would help my libido as much as it helped everything else but...if anything it's gotten worse, not physically but emotionally. Because I have come to associate sex with pain I have become much less likely to try to engage in sexual activity and slowly have started to pull away and put it off more and more and more. Although it may not seem like a big issue to anyone reading this, I am literally crying as I write this because of how much this issue has begun to wear on me. I want so, so badly to be 'normal', to be able to give him that part of any relationship, to show my love for him in that way and, most importantly, to never, ever see that hurt, but understanding look on his face and the uncertainty that is now a constant fixture in his eyes when he goes to kiss me or hold me.

This is breaking me down--whittling me down to nothing little by little.

Has anyone else dealt with this in conjunction with chiari or a similar condition? Is there any suggestions you might have for me? We've talked about it many times, tried to understand each other's needs and wants, but in the end I feel like we always slip back into the same routine and it's just not fair to him or to me. Should we seek joint counseling? Will conseling help with an issue that stems from a medical rather than emotional problem or do you think the emotional problems born out of the medical problems are a significant factor...? Please, please, anyone I just need...support...or help...or even just to hear that someone else out there is a twenty two year old woman going through the same things that I am going through.

Thanks for listening.
Please...if you can help...I just really need it right now.
Ashleigh

[selmaS]

  Hi, I realize u r a private person, this being ur 3rd post...so I understand and appreciate how difficult it was to be so candid.

The issues u mention have been a topic on here b4, and yes are Chiari related....my NS asked if I had these issues, and up until then I felt like u, like I wasn't being fair, but also knew something was not right....not to mention the HA's and other pains I got if we pursued  it . I felt so validated  sitting there in front of DH , he now knew what I was trying to say, it was not that I did not want to be intimate, but that I did not feel I could in a way that could satisfy him or myself with out having to stop in pain...and then  again were the days of no drive...being fatigued adds to that......

Since u r so young, I am sure that once u talk to a chiari specialist u will find out how much  chiari affects not only ur overall physical health but emotional as well .

  I hope this helps

   "selma"

[linnielou232]

I feel so bad.  I tried to personal message you and for some reason after typing for 15 min it wouldn't let me send it.  :(     I completely know what you are going through .   Please try to pm me because I would like to talk to you about this, but I know it is a personal issue for you.  That is if you would like.  I'm just disappointed you won't get the post I tried to send to you.  You will have better day's ahead and there are item's that help.  As I ask please PM me so we can talk a little bit more in private.  It will get better and we all are here to help you understand.

[AshleighMarine]

I have tried to reach out to chriari specialists within my area but they just don't seem to get it. I had a fantastic neurosurgeon for surgery but he became unavailable to me shortly after my surgery due to retirement. He was amazing! And so helpful! But everyone in my state either tries to send me to a psychologist (who never seem to help) or to specific specialists who can treat different symptoms, ie pain, or headaches, or nerve issues seperately. They don't seem to be able to give me any kind of chiari-specific help or even any help in this area.

I have a very close and open relationship with my mother, who I love dearly, but not only does she have her own stuff to deal with, but she's never really experienced this sort of a problem. She's a lot more open and flirty (not in a bad way, I am just quieter in nature) in general than I am, and she also attributes my problems to lack of feelings for him or lack of attraction for him, which it absolutely is not.

I am at my wits end. I realize now looking over my first post how super long it was, but I hope you guys don't mind! I had a lot that has just sort of built up to all of this, haha.

[Sexybare]

Hi i want to begin by telling you im 32 and had surgery thos past aug. I know how and what you feel. I do not have a strong drive either and ive been with my boyfriend for lil over a year now. He has no idea about it. Ive never told him gor i myself cant come to terms with it. Our sex life is definatly not the same but the stress you are goin thru now is also playing a role there. It sounfs like hes a great guy and isnt goin anywhere :) jist be patient and relax
Have you spoke with dr about any meds? As i havent either. Too emnarrased. Chiari takes a toll on us in many ways

[linnielou232]

I forgot this one.  My sister was dealing with this problem and she went to her PCP and he gave her a shot.  It was 150.00,  which she had to pay out of pocket because insuarance wouldn't over it ,but she was going on vacation with her husband and she wanted this for her husband.  My brother-in-law said by the time the week was up he was hiding from her. LOL..... he even called and thanked the Dr when they returned.  So I know there are med's out there for this problem,  just expensive, but they both said it was well worth the money.  So ask your PCP.  I'm sure you wouldn't be the 1st to ask.  Nothing to be embarrassed about.  Anything is worth a try.

[AshleighMarine]

I've had to tell him, since it became too obvious, but we've never really sat down and talked about the full extent of it because I don't want him to feel as though it's something he's done and because it's embaressing, like you said. I would like to go to a gyn or chiari specialist about it and talk about medications (both if their I something I could take for it and if there is something which I'm already taking which might be affecting it) but once again I seem to lose my nerve at the last minute.

Ugh, this is just such a frustrating problem. I just want to be normal, gosh!

[Sexybare]

You arw not alone. You get the nerve and ask your dr. Dont stay stuck in this rut. Please ask the dr you feel most comfortable with. I think snce you brought it up im gonna ask when i go in jan. If you dont by then, maybe i can give you some info about it then, ok

[selmaS]

  It is very possible since u had surgery, that u may have yet another issue u r not aware of, such as tethered cord*....most times post op from a PFD it can get worse very rapidly, but does not have to be the case.....

I also have TC* and had PFD and mine did not get worse post op....I do have issues with it like always, but surgery did not make it worse.

Many of us also have a tilted pelvis or uterus, do u know if u also have this issue?

  I would also ask them to check ur pituitary gland as that deals with our hormones and when compressed can alter them.

   Too many of us have had this issue for it to be u, know that.....

        "selma"

[irislita]

...feels as if u r speaking for a lot of us...since operation i just do not want anything...its just gone as if it did never exist.before my symptoms became serious in summer i loved to love.actually today i was wondering if this is happening to others...

[Sexybare]

I found out from pt that he says my back is off and my whole pelvic area. What does that mean?

[DANI0103]

I HAVE A QUICK QUESTION. WHAT IS A PCP DOCTOR?

[bookworm79]

primary care physician

[jiggle93]

When you say "many of us have a tilted pelvis or uterus", do you mean as CM females?, or just females???  just curious if this is another side affect?

[selmaS]

...I am referring to those with EDS in addition to chiari....

We have been noticing the similarities for a while now and found that quite a few of us  have this...I also am finding those with it r getting a dx of EDS who did not have it b4.....

I would not say it is a side effect, but a related condition, EDS is a connective tissue disorder that affects the glue that hold all joints  together...so to have some tilted and what not is not unexpected.

  I am not sure how males are affected  by this as I have yet to hear of  one on this forum with EDS....and mention symptoms and issues....so, I am going by the membership here, not a study out in the clinical offices somewhere.

   "selma"

[jiggle93]

very interesting. My gyno discovered this years ago and mentioned that its farely uncommon. I never thought much more about it, except to "help" others find it when having my  children. I havent been tested for anything since learning about the CM, but if it ever comes up- I'll let you know. Thanks for the info!
Jiggle93

[selmaS]

  no problem...do let  me know what u find out...as I am finding it  interesting as well...my Drs never gave me a reason for mine...and ignored it....so, as I am going along this journey I am finding out sooooooo much.

  

[jiggle93]

Ya know Selma, I really think you should start compiling a handbook, or guidebook, or some type of literature material on all of the wealth of information you have. I would bet money on how fast it could be sold to all of us newbies that benefit from all of your knowledge. Just a thought....but, really-consider it PLEASE!!!
jiggle93

[selmaS]

   LOL....well thanks for the thoughts...we actually considered putting a book together a while back, but there was not enuff members willing to help...by that I mean that come back...every 6 months to a yr the membership here changes....and it is hard to start all over with a constant flow of newbies...so, I dropped the idea....

It was too much work for me to do by myself.....but if that ever changes I will let u know : )

[Rahe28]

Hey there. So sorry to hear of the problems that are tearing at your heart. I have not been a member long, but I have been dealing with this same issue since I was 23, I turned 28 yesterday...so about 5 years. My husband and I have never had any sexual relation problems. Then, it was like all of the sudden...just, well, GONE. Our relationship has definitely been strained due to it over the years. He felt as though I just wasnt interested. .. which was not the case. I just didnt know how to be interested anymore. I was DX'd with Chiari 2 years ago, and I have never been able to recieve any medical care for it. I however just found a nl, and will be visiting her within the month. This is most definitely a topic I will need to discuss with her, I have to, no matter how embaressed I am. I can't stand that hurt, understanding, look of rejection in his face anymore. It just saddens my heart to see the man I love more than anything feel rejected by me, and not by choice. You most definitely are NOT alone. I was actually so pleased to read your post ( not because of the the pain your going through ) , because I have never even thought that Chiari was related to this issue. I now do not feel as though it's a lost cause. I just thought that it was something I was going through. THis gives me a place to look for answers though. Thank you for posting such a personal and private topic. You have no idea what this means to me. I am sooooooo sorry that I have no answers for you, but if you haven't asked your pcp about it by the time I go, I will ask and share whatever info I learn with you. Once again, thank you for posting :)