Somewhat embarassing condition...causing emotional distress.. help

Hi...

I've been reading the posts here, and I've been quite amazed at how understanding and helpful all of you are. I have a condition that I think is best brought here. I brought this up with my practitioner about 4 years ago, and he said it'll go away.... but it never went away.. it got worse, and I'm way too embarassed to ask a doctor to do something. I "mentioned" it to the T, but blew it off because I thought it was going to be part of all the psychological problems I have going on... as a matter of fact, it's causing more. It's been driving me mad lately, and I started poking around the internet, and I found that this is a very real condition.

Persistent Sexual Arousal Disorder

Frankly, I can't handle it anymore. It's interfering in my life... my life is messed up as it is, and I've been working hard on regaining my health (both physical and emotional), and I got this THING driving me crazy from the moment I wake up.. keeping me up at night... interrupting my sleep.. keeping me from concentrating.. blah blah blah. It is both unwelcomed and unwanted.

It clearly has nothing to do with sex.. no matter how many orgasms I have, it doesn't go away. It's there when I'm working out and sweating like a pig (not feeling aroused at all), gardening, washing dishes, cooking dinner, feeling ill, feeling good... it doesn't matter.. it's ALWAYS there! I thought maybe it was hormonal.. my age (45).. but from what I read it could have something to do with the nerve damage I deal with (from diabetes), or some osteo problems (back, hips).

Does anyone else deal with this??? Are there any suggestions.. medications.. ANYTHING?? My bf is long distance and we've only been together twice for two weeks at a time over the last six months, and I thought we were just incompatible because I'm ALWAYS aroused, but I see it's just MY problem, and I want to fix it before it ruins this relationship.. I have to get rid of it so I can concentrate on moving forward..

Can anyone help?

Thank you
L

I have no idea hon. I have bad back issues but that has not happened to me. I did go thru this in my mid 40's to a degree. I wanted sex all the time. not that I was what I would call aroused all the time but wanted to have sex. maybe because I was feeling so unwanted it made me want that closeness. jmo!

Thank you for responding.. and thank you for your kind response.

I thought that what you experienced is what was happening to me... my self esteem is in the gutter.. always lonely.. I thought that's what it was (began in my mid 30's). When I was about 40, I kinda asked my doc if he could give me a hormone shot or something to stop it. He kinda laughed it off.. said it would go away. It didn't .. just got worse.

I have some really good anti inflammatory pills I save for emergency... it might sound rediculous, but .. just maybe they'll work.

Thank you..
L

oh tell me about the self esteem! when I was younger and not injured I could do whatever I wanted. now I can't even stand long enough to cook dinner. do I want sex? not really but I want the intimacy. rarely has my sexual desires been about the act itself.

OH, girl...I know what you're saying. Because of a physical condition he developed.. my (then) husband lost interest in everything.. including the "intimacy" about 18 years ago. I cried myself to sleep (on the couch) every night. Eventually, the marriage came to it's logical (and legal) conclusion in 2005, although we remain best friends. In the course of 15 years of lonliness, I'd soothe myself with alcohol, drugs, food. I gained a massive amount of weight, became ill because of it (joint issues, fibromyalgia, uncontrolled Type II DM (and the horrors that go along with that). The smoking advanced the c.o.p.d. until it became emphysema. My doctor was beside himself.... so was I. My husband didn't even notice most of the time.

So there I was.... having to force myself into the shower because it hurt soooo badly to stand there, hating myself to the core, just waiting to die until one night, about 4 years ago, I put my head down and prayed with all of my heart that God take this out of me, or just take me. Things started changing, I found a church, I started resisting the drugs.. trying to clear my mind. I closed my businesses in debt (I just didn't care anymore) because my body couldn't go another day, and moved up into the country (with my ex husband) to try to heal. I've been here for 2 years. In less than a year (from about September to now), I've lost over 120 lbs, began to work out with a personal trainer, began seeing a therapist.. and just continually pushing forward.

Lack of self esteem almost cut my life very short when I look at it. It seems that self esteem issues are progressive.. I've been like that forever.. as long as I can remember (8 or 9 years old), and with each destructive behavior, it got worse and worse.. and I'd take on even more destructive behaviors which in turn pushed me down further and further emotionally.

If you don't mind, I'd like to know what is happening with you.. what's causing your pain (if you don't mind me asking).

L

I use to drive a truck. yep 18 wheeler! I have 3 torn disk in my lower back. nothing really they can do at this point. and my weight is out of control so that adds to everything!

I know how much damage doing that for a living could cause to your body. I got my CDL, but my brother forbid me from taking a job doing it. He suffered greatly from it, he also had an accident at a dock where the plate slipped of the dock, he went down, the forklift came down and the plate came down and broke both his legs. He put on a massive amount of weight and never did heal.

I couldn't move much a year ago and I gotta say that low (close to no) carb is what took the weight off of me and allowed me to move again.

..praying for your peace and comfort..

L

Your "problem" sounds like something I went through as I was healing from surgery involving my spinal cord and brain stem. None of my friends thought it was a "problem" when I tried to explain it, but it definitely gets old really quick.

It could be something involving the cervical are of your vertebrae, or at least around that area. I would see a neurologist.

Good luck!

I'm sorry you had to deal with this, but to be honest, I appreciate the validation!

How long before it went away for you?

L

I know how important validation is to someone who has an unseen physical complaint, but has had mental health issues in the past, sometimes I think the mental health stigma is greatest among Drs.

Because it took so look to finally get someone to look at ALL the test results and finally send me to a neurologist, I continue to have some of deficits in the areas that brought me to the doctors in the first place i.e. swallowing problems, balance issues, etc..

As for the sexual arousal thing...... For me it took about 2 months. I never mentioned it to my neurosurgeon.....Go figure . I chalked it up to all the trauma/swelling in the cervical area, and consequently the pressure put on the nerves there too. As the swelling went down, and the pressure lessened against those nerves, the affect went away.

Do you notice if the feeling gets stronger or weaker depending on your activity? I told everyone, that while it was going on, I could have been very happily married to a pepper shaker....... Every time I sneezed......wow

I hope you can come to a solution, but I really think a mention to a neurologist is your best bet.

Good Luck

Hey.. I would marry that pepper shaker if it would help!! LOL

Wow..yes.. there are times when it's worse.. When I'm on the treadmill, eliptical.. it gets rediculous.... I almost welcome the pain in my hips because it distracts me. Well, I can't say that.. it was there sitting though the movie WALLE the other day, it was there when I was cleaning the cat box .. blah blah blah. It'll be there for days in a row with NO relief, then there are other times when it's calm.. but only for a few hours.

It started when my blood sugar was completely out of control (I was running between 250 and 400). This is what makes me believe it's nerve damage. My feet and legs up to the calves always have something going on, as well as my hands.... so I was thinking that maybe this was it as well. My sugar has been under control for nearly a year now, and although the pain isn't as great in my extremities... the kitty cat is still always swollen. I'm ALWAYS aware.

I guess I just have to hope it goes away on it's own. There's no sense in telling a doctor something that he's going to laugh off. Been there, done that.. got the T shirt.. wore it out.

L

ltr I was on the no carb for awhile while I was driving. man it isn't cheap! truck stops won't sell anything hardly but the full meal. plus I was so tired of chicken and salads I thought I was going to grow feathers and a bottle of ranch dressing lol

I am sorry that you are having to suffer with ailment that was just newly discovered back in 2001 - therefore there is very little known about it or treatment for this disorder.

* * * * * * *

I found this website created by another PGAD sufferer and thought you might be able to find some relief in knowing that you are not alone.

http://www.psas.nl/content/home/default_en.htm

And here is a FORUM for women with PGAD

http://beyondmystical.com/e107_plugi...c.php?295.last

Please know that you are always welcome you here and that we will always offer support.

I agree that while on the road, the choices are quite limited. I love diners when traveling. I might spend more on a meal than I would like, but I eat one whole hell of a lot less too.

hahhaha... yea.. I feel like I'm growing feathers when I do the meat and egg thing. OMG.. I just got finished having a minute steak w/a whole egg and 2 eggwhites. Bok bok bok bok bok.. so many eggs.

When I'm on the road, I order a hamburger patty with an egg on it.

Frankly, I don't know how on earth I've stuck to this as long as I have, but I have to say, once you get used to eating this way, all the pastas and sweet veggies and sugary things just lose their appeal.

I'm down over 120 lbs in about 9 months.. and I credit my increased mobility to this way of eating (after trying everything short of surgery). The pain relief alone was worth the expense and the intermittent frustration with the menu.

I know the strain of the weight just complicates an already painful condition for you (it did for me even though I dealt with nothing as severe as what you're going through).

I hope there is a way for you to find some relief.. I really do feel ya here.

L

I think women have long dealt with this thing... but I know I WOULD HAVE NEVER been the one to come forward. Heck .. I could barely spit out a mention to my own doctor.

</font><blockquote><div id="quote"><font class="small">Quote:</font>
Ltr2Hermione said:
Heck .. I could barely spit out a mention to my own doctor.

</div></font></blockquote><font class="post">

If you can please try to get past the embarrassment so you can get the help you need and deserve..... you will me amazed to what a doctor can do for their patient when we give them the opportunity.

My doctors all ways tell me that they like the fact that I can talk to them with out any embarrassment - no matter what the subject may be.

Is there a female internist or GP doctor you could see? Do you have and endocrinologist doctor that handles your diabetes?

I also think that it involves nerve damage or impairment of some sort......Only based on what I went through though.....No MD degree here.

It may be hard to get passed the mental health stigma with your general MD or even your PDoc.....Trust me that is really sad, but you really need to get anything physical ruled out first.

Let me know how it goes. And feel free to pm me anytime.

Thank you..

My endo and I disagree on how I decided to control my diabetes. In essence, when I decided to stop injecting insulin, I also gave up the doctor. (My sugar is in complete control for the first time in 8 years and I haven't taken insulin in about a year).

I do believe this has to be more neuropathy too. Did your condition resolve itself??

Thank you!
L

It took about 2-3 months after the decompression/brain surgery for most of the symptoms to go away. I attribute that to the swelling in the brain stem/upper spinal cord area going down and the nerves recovering in that area as well.

I will write more tomorrow, as I have an awful headache again tonight. But I really think you should start looking for a female internist or endo doctor that you can make an appointment with and discuss this problem.

Also, begin writing down when it first began (generally), and what activities make it worse or give you some relief. Even things like when you're really tired, after you sit along time, etc.

Keep a daily diary! Believe me this comes in very handy when you are being questioned by different Drs.

Don't lose hope. You know there is something not right, do not let anyone chalk this up to a psych issue before you have ruled out ALL possible physical reasons you could be experiencing this problem.

After all you have said regarding the uncontrolled diabetes and your other different health problems over the years, I really think this is some type of nerve issue too. Either neuropathy or an issue with the nerves in the spinal cord (pinched, etc.), only because that is where mine originated.

Keep us posted, start writing, and begin looking for a female dr. too

More important, take care of yourself