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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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GRRR....why?!

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GRRR....why?!

Post  [Sara] on Sun Jan 30, 2011 3:41 am

Most of the time I wonder if I will ever have sex with my husband ever again. I HATE THIS. I feel like a failure. I'm only 22, been married for 1 year and 7 months, this just doesn't make any sense. Will I ever have a baby? I don't know! I can't even go through the process of making a baby so why bother?! No

Of all of the effing prostitutes and whores out there...WHY CAN'T THIS HAPPEN TO THEM?!!!

My husband went for a bike ride today and it just really irritated me...I know, the weather was nice enough for the first time this winter to go outside. BUT. All of the bike riding we did together last spring caused all of this for me! So instead I sat inside and felt like a loser, sulked, and bawled my eyes out. He had no idea, I just pretended to be asleep when he got home so he wouldn't know. It was the first Saturday I've had off this semester and I was looking forward to relaxing with the hubby at home. I know sometimes men just don't realize things and he never would have gone if I made a big deal about it. I didn't put my foot down because I didn't want to be controlling or whatever, but this is a really sensitive subject. I can't express enough my hatred of bikes. Evil or Very Mad

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Re: GRRR....why?!

Post  Sarah001 on Sun Jan 30, 2011 1:50 pm

Actually I've always hated bikes, never could get on with the seats even when I was a kid! I think you should have talked about it with him, I made the mistake of not saying anything when my partner was going out and leaving me at home and eventually we split up because he'd got this whole new life (and woman naturally) without me. There must be other things you could do together rather than him go out on his bike and you stay home and cry!

And don't give up on the idea of getting better, it's one of the key things in the "Ending Female Pain" book, she says you have to get doubt right out of your head and focus on helping your body heal with all the physical things that need doing and some relaxation. Just stay away from bike seats.... Wink
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Re: GRRR....why?!

Post  Sebby (Admin) on Sun Jan 30, 2011 9:33 pm


I also think that you and your husband should find some other outdoor thing to do together..like jogging, swimming (if your not sensitive to the chlorine, skates!

Yes deff speak to him and explain that you would love to be able to go out and do something together but that bike riding is obviously a no no..yeah he prob just didnt think..

As for the baby thing..I know its hard but put that out of your mind at the moment you are so young and have plenty of time!

Also dont give up, keep up with the treatments and use the dilators to get yourself used to penetration.

Remember there are other aspects of sex you can still do so keep your sexuality and your intimacy alive by doing the things you can do

There is a quote I put on my facebook page which was:

Don't let what you cannot do interfere with what you can do.
- John Wooden

And keep faith that soon those things you cant do will become the things you can do..
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Re: GRRR....why?!

Post  Reader on Tue Feb 01, 2011 7:47 pm

Hey Sara,

I know you probably never want to get on a bike again as its the cause of your pain. But if you ever did want to get on your bike again there are things that can help...namely a seat called the 'spongy wonder' hehe. Its designed to help women with vulval pain, I think you can only get them from America so probably a bit pricy but might be worth a look if its something you enjoy doing. heres the link: http://www.spongywonder.com/

Im a student Midwife so im really keen to find women who have vulval pain whilst pregnant as its also a question I ask myself about having babies. I ask all the midwives about it....suprise suprise not many have heard of it but hopefully one day someone can shed some light on birthing and vulvodyna...will keep you updated!
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Re: GRRR....why?!

Post  alanasomething on Mon Feb 21, 2011 7:51 pm

Losing my virginity caused mine. I hate people who have one night stands and I hate people who abuse the fact that they can have sex.

I know exactly how you feel when the man in your life can just get on with his. We don't really have the right to hate them for having lives, but I do. I hate when all my boyfriend has to worry about is when the next Mumford and Son gig is!!!

I've been with my boyfriend for 4 years, but he doesn't love me, he's told me he just "really likes" me. So obviously he isn't going to be around forever, and the thought of finding a boyfriend or a husband makes me so nervous. What kind of man would willingly fall in love and marry someone like me?

Since sex started it for me, if this ever went away I'd be scared sex would bring it back...

Just try and tell your husband how you feel, but if you are like me, I end up blubbing and feeling totally pathetic.. I seem to get the impression my boyfriend thinks it isn't as bad as what I make it out to be...
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Re: GRRR....why?!

Post  Mouse on Mon Feb 21, 2011 9:16 pm

I'm sorry I can't leave this alone. Every time I read "all the effing prostitutes and whores out there" comment it really bothers me.

I get the frustration and it's so unfair. Life wasn't meant to be like this. Calling another woman a whore however makes us no better than the generations of inequality inflicted on women throughout history. Prostitution is very rarely a career of choice. It's a profession built on desperation and exploitation.

Let's focus the frustration and anger into finding some answers =)

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Re: GRRR....why?!

Post  alanasomething on Mon Feb 21, 2011 9:55 pm

Mouse wrote:I'm sorry I can't leave this alone. Every time I read "all the effing prostitutes and whores out there" comment it really bothers me.

I get the frustration and it's so unfair. Life wasn't meant to be like this. Calling another woman a whore however makes us no better than the generations of inequality inflicted on women throughout history.

Hey loud Mouse! I lived with a girl last year who brought home a different man every night we went out, didn't use protection, got the morning after pill almost every Thursday (wednesday is student night) and it disgusted me. I think those are the kind of people Sara meant. I don't think its fair they get away with doing that and do not respect sex. They give women and people a bad name. People say "oh men can do it so why can't women" but I don't see why a woman would want to. I don't see why ment do either but I don't have much respect for men in general... which is bad I know, I don't know why!
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Re: GRRR....why?!

Post  Sebby (Admin) on Mon Feb 21, 2011 10:08 pm


Mumford and sons eh?...ahem..tell him to listen to proper rock! sorry if you do like them! I dont mind them lol

Also if he dont love you after 4 years send that dumb ass packing innit! Sorry but you deserve to be loved in a relationship..sex problems or no sex problems

I agree Mouse prosititution is deff explotation and I feel bad for them. I do think Sara meant women that just sleep around without having respect for their bodies. There is of course the arguement that what a women chooses to do with her body is her right..true but I cant help feeling pissed off too when I hear of girls sleeping with every tom,dick and harry and all I want is sex with someone I would love!

Saying that when I was still sedated after my nerve block, I could hear my mum and her mate talking about what they would do differently if they were in their 20's again. First thing that popped into my mind was 'more men, more sex'! thank God I was too groggy to voice that! So yes back in the better days I wouldnt have stayed in years long relationships with those dumb ass ex's lol

Seriously if im ever cured God help the men I meet! Wink

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Re: GRRR....why?!

Post  alanasomething on Mon Feb 21, 2011 10:24 pm

Aw because sex caused mine I have no other opinion on sex other than I hate it.

Yeah Mumford and Son! I don't really like them, he's obsessed lol! He used to love me, but when I got sick I was really horrible to him when I was depressed and he just closed off everything. Now he's a different person, he isn't emotional, we don't talk about our feelings, because he says he has none. He says he can't force himself to love me, but he really likes to be with me and likes me a lot. He used to love me and tell me all the time. But I think he holds what I've done too much, and doesn't trust me again.

I just feel torn because staying with a girlfriend who lives 2 hours away, who doesn't have sex with you and who doesn't want hugged is a commitment.. but not loving me means as soon as someone better comes along, it wouldn't be hard to just leave me...

And it doesn't help that we have been through this since I was 16 and even now I'm 19 I still feel as scared and insecure as a 16 year old. Because of this my already low self esteem has gotten worse and I feel... I duno, weird. MOAN MOAN MOAN lol!
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Post  [Sara] on Mon Feb 21, 2011 11:35 pm

I'm sorry Vicki, I wasn't trying to make you uncomfortable. How Alana stated it is pretty much what I meant. And I'll admit, I was in a terrible state when I posted the orginal post so you never know what might get typed out. Rolling Eyes

But I don't really regret typing it. I think I have the right to calling all the girls that my husband had sex with before me are all whores, and they always will be to me (I guess if I said that in the first place there wouldn't have been any confusion...I just didn't feel like involving my husband's past in this mess). I mean come on, one of them cheated on him and was having sex with other guys the whole time they were together. THEY should be the ones with the messed up parts. I have a lot of bitterness in regards to this situation. I don't want everyone thinking my husband was some womanizer or anything crazy like that, but he was raised differently than me (not a lot of parenting going on) and didn't know what he was doing, just young with hormones, guitar player in a band, etc. He met me and everything just sort of fell in to place and smoothed out. He has told me since that if he knew of how much it would hurt me to have sex with other people before being with me, he would take it all back because they mean nothing to him now. But oh well, you learn from your mistakes and move on. I will have to say that I had moved on from all of this until I had pelvic floor dysfunction and vulvodynia. When this came into my life, the hatred towards my husband being with other girls just eats away at me, especially since I can't have sex with him. It's complicated. Embarassed

@Alana "Just try and tell your husband how you feel, but if you are like me, I end up blubbing and feeling totally pathetic.. " <This is usually what ends up happening with me, too. Which is why I hardly ever talk about it...even at physical therapy when my therapist is asking me things I can hardly talk about it with her because I hate it when people see me cry. I don't know what's worse, holding it in or crying and letting it out and feeling pathetic afterwards.

And about your comment "What kind of man would willingly fall in love and marry someone like me?"...If there is a perfect guy for you and feels like you're the only one out there for him, having this condition won't matter to him. I'm trying to think of how my relationship with my husband would have been if I had this when we were dating...and not to get all mushy and stuff but we just had this connection with eachother that nothing else mattered but being together. I know if you do find this person in the future it won't be easy breaking the news to him (heck, I still hate talking to my husband about it). Sigh I wish this stupid condition would just get out of our lives!

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Re: GRRR....why?!

Post  Tyger on Thu May 05, 2011 5:05 am

Oh Sara, I can completely empathise with you.

It is so fu7king awful having this damn condition to deal with!!!!!!

I was 18 when I first got a yeast infection that turned into Vulvar Vestibulitis. I'm now 26.

I only had sex for a few months before it started. I feel like I'm stuck with it for life. FU7K THIS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

ARGH it really is so unfair!!!!!!!! I can vaguely remember what it felt like to have pain-free sex. I am so jealous of my former self. I am so jealous of every normal girl out there. I have a hatred for a lot of women now, and men also.

I hate how it makes me feel, dreading sex, feeling like a failure, anxious, upset, deformed, disabled...

I used to be so sexual and happy. Now I'm frigid and bitter.

It's weird though. I sort of swing between some days feeling hopeless, depressed, and SO angry that I'm stuck with this crap, then other days I truly don't think about it and feel like it's fine and not a big deal.

*Sigh*.

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Re: GRRR....why?!

Post  Sebby (Admin) on Thu May 05, 2011 9:22 pm


I swear I get so pissed off at this condition effecting my potential sex life that i'm gonna just get drunk and jump men on low pain days!!! ARHHHH!! I will turn into a hussy!!

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my pain started that way too...

Post  sadone on Wed Dec 28, 2011 12:07 am

Sex is what triggered my vulvodynia, and so I hate it too! Sex therapy is always about getting over your fears and learning to have a healthy sex life. Feck that! Why can't it be about our partners learning how to dampen their sex drives so we can stay out of pain!

Stupid sexist world!

Women expected to work through pain, and men don't have to do anything...

GRRRRRRRRR!!!

Needed to rant about this! It makes me so damn mad! Evil or Very Mad Evil or Very Mad Evil or Very Mad Evil or Very Mad

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Re: GRRR....why?!

Post  stephsue on Wed Dec 28, 2011 10:10 pm

Hi ladies - I definitely understand the frustration of constantly having to work towards something that other people have no pain with, but I think it's important to do that for YOU, not because you feel like you need to to be "functional" or part of a relationship. For a long time I felt like "ok f this, I'll just never have sex again" and was really bitter and resentful that it was seen as something so important. While I DO believe an undue level of importance is placed on the actual act of intercourse (as opposed to other sexual or intimate acts), the fact of the matter is, I do miss it and want to enjoy it again. Just try to keep in mind that you are working on this condition for YOU, not anyone else - and whether you care about having sex or not, it's important to just take the best care of your body you can and not be in pain!

All that being said, I've definitely had ALL of these thoughts before and it's nice to hear from people who understand!
xo

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Re: GRRR....why?!

Post  mypalal8907 on Thu Jan 03, 2013 9:33 am

I, like mouse, can't leave that comment alone calling other women whores and asking why prostitutes and "whores" can't have this problem instead. I fully understand your anger. When I first found out I had this I would just randomly scream I was so frustrated, but I would never wish this on another woman. Not to mention, what a woman does with her body is her decision. The only reason I found out I had vulvodynia was because I was contemplating casual sex and I've never had sex. In your personal life you can view sex however you want, but to judge other women for their activities is not okay. It isn't their fault that they can have sex without this kind of problem, they're lucky I guess. I get frustration at other women who can have sex in general. It pisses me off every time a friend of mine talks about how she hasn't had sex for such and such amount of time when I simply can't without making matters worse. But, please do all women a favor, and do not slut shame no matter how angry and frustrated you get. It doesn't do any good. It only damages what so many women have been working for: equal standing in sex relationships with men.

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also wonder why

Post  justme47 on Fri Jan 04, 2013 9:21 pm

I have had this disease for 25 years off and on, and sometimes I get really depressed. My husband is very patient and has had his own episodes of chronic pain through the years. We always jokingly say that when it comes to sex, quality is better than quantity, especially at our age (in our forties and fifties). It is good to try and have sex on your good days, since it is such an ego boost when all the body parts are working. Don't try it on a bad day, it will only bring you down. Also try different lubes and positions. Give up on the quickie, it's not for girls like us. Helps to do it when the kids are at school, you don't feel so rushed. Smile

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...

Post  lavrose on Thu Mar 14, 2013 3:37 am

I get angry and hateful towards other girls too, especially the slutty ones. But GET THIS, I went thru a period where I was having casual sex too (WITH VULVODYNIA) From age 29, to 31) so a couple years.

Before I started having casual sex (or booty calls) with multiple partners, Id only been with 2 guys my whole life, and I lost my virginity when I was almost 23 years old. I got a RAGING yeast infection the day after I lost my virginity, and went on for a year, until I broke up with my boyfriend and 6 months later met my daughters father. I notice, going extended periods without sexual activity makes the Vulvodynia pain go away for awhile, and when you start up again with sex, its good for a little while, then the vag gets irritated and seems to stay irritated until you give it a rest for awhile again.

Anyway..I had about 4 months of AWESOME pain free sex with him (never happened to me before, finally understood what all the fuss was about, sex felt great), then I was down again, with Vulvodynia, for another couple years, and it is part of the reason why he left me. He developed a porn addiction because I was not having sex with him. Sad, isnt it..

Anyway, when I got pregnant with my daughter, I was diagnosed with group b strep, and had IV antibiotics for 36 hours while in labor, (protocol for group B strep mothers to prevent infection to the baby), after that. After I recovered from childbirth, sex was awesome and painless for me again, for a few months( her dad was amazed), so I def think theres a connection between infection and vaginal immunity.

My vagina lacks the flora, to prevent ANY kind of infection, it seems,a nd I always have a low grade something going on.

Anyway, when my mind snapped after everything and my daughters father leaving me, I became primiscous, and ofcourse my problems got much worse. I did have sum fun tho, and I discovered the wonders of amazing men, amazing sex, (even tho I was in pain, I worked thru the pain, and just being touched and having the experience was great) but after awhile I just couldnt do it any more, plus psychologically, it was very hard. And there is a moral reality, and KARMA. Its all very real, and people abuse sex everyday, but then they pay too, one way or another in their lives.

Its not good to have multiple partners, its really not. Even tho, it may feel empowering at the time, its just not right.
Then I met my husband. and its sad, because the entire time we have been together (a year and a half) we havnt had hardly any sex or decent sex, as it always hurts. Only lately weve actually had a couple good rounds, as I feel almost cured now, and Im hoping this will continue, and I can heal our broken, and wounded sexual relationship and save my marriage(my new husband is starting to watch porn too, and even almost finds me disgusting, and Im attractive!!, but i guess the condition has turned him off, smelling like oils, etc, and its all so heavily loaded, and spontaneous sex is out the window), and in this process, I can heal my deeply scarred sexuality. Like Ive said in earlier posts, combination, oils and probiotics vaginally, and oral supplements have helped me, and made me almost return to normal.
Ive weeped and cried and screamed in anguish in the night over this issue.
Its so horrible for a women beyond imagination. Cruel.

You think your gonna end up a lonely, bitter old hag, with a burning vag, and a broken bitter heart. Missed opportunities, and sadness of what could have been. Plus Im psychotically jealous, even over porn!! Im completely needy, pathetic, and JEALOUS over my new husband, because my vag is uncomfortable ALL THE TIME, and it just adds to the tension and crankiness.

i feel I missed out on sex too. I feel Ive missed out on so much, and its deeply complicated how this issue effects your psyche and psychologically.
How do we know these sluts dont have pain too!! Maybe they just hide it, or ignore it, I did.
You hear about slutty girls giving and spreading diseases all the time. I got Chlamydia and didnt know it for a year for Christ sakes, I thought it was just my Vulvodynia!!
I prolly gave it to like 3 people, lol tongue
But hey, you know, youd be surprised how secretive owmen can be about this issue. and if theyve had it their whole lives, like I did, they would just think its normal
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Re: GRRR....why?!

Post  Alana3 on Thu Mar 14, 2013 1:33 pm

Seriously, why are you calling other girls sluts because they have sex and you cant? That's wrong. Don't call someone a slut because they may have other problems that you don't know about. Most people do have problems, lupus, depression, cancer, stuff that is way worse than what we're going through. Where vulvodynia is truly horrible, bringing someone else down because they can have sex is not OK and doesn't help the situtation at all. I don't have casual sex, but a lot of my friends do and that's their choice, who am I to judge them because they aren't broken? If you had a normal vagina, you may be running wild too. I feel like a lot of people do when they first experiment with sex. It's a hard thing to stay away from when it feels good. Trust me, I understand how it is to feel like that, but bashing someone else isn't really going to help your problem. And use protection if you're going to sleep around, that way things won't be passed along or have a lesser chance of it happening. Just be smart, when sex feels good it's easy to get carried away Smile

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Frustration

Post  jjr23 on Sun Aug 28, 2016 8:42 pm

I know the original post is old but I couldn't leave the page without replying because parts of it resonated deeply with me.

This condition has driven me crazy. I'm 23 and am meant to be enjoying myself and exploring my sexuality but all I've been feeling is anxiety and depression. It's been really hard being around my friends. Sex almost always comes up in discussion. If it's not sex, then the topic of who's dating who will come up. What's worse is that my friends have no clue what's going on. They see me as a very sexual being and come to me for relationship advice! I ooze confidence because I am confident. I keep myself slim and healthy and know that I have the curves that men like. My friends are well aware that I have no issues getting attention and dates from men but they have no idea that it can't go anywhere with them because I have this condition which makes sex a very awkward and painful experience! I really envy them and how they can just have sex without any worries or pain. One friend in particular has recently become single and brags about how much she loves sex and how many different guys she is sleeping with. I'm not saying that I want to be like her and sleep around but it would be nice to be able to have sex and approach the whole thing like a normal person! They have no idea I'm suffering from this and it's making me resentful towards them and I think one of my friends is sensing that I'm becoming bitter and distant. You guys are probably thinking well why don't you just tell her. She wouldn't understand. Anyone who hasn't had to suffer from this issue could never truly understand the emotional pain and what we have to go through. They may understand the pain element, but what about our fear of being lonely and unwanted, and our countless visits to the doctors and various treatment methods. The list could go on. It's not fair. Why me? I hate playing victim and feeling sorry for myself but this condition is a fucking nightmare. On one hand it's just sex, but on another hand it's like so many things are impacted by not being able to have sex. It's like having a disability that you can't see

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Re: GRRR....why?!

Post  fairlight10 on Mon Aug 29, 2016 6:21 am

Hi jjr23 I think you should let your friends know. This condition has been a secret too long. I did not hide behind this condition and was not frightened of telling those that I thought cared about me. Some were supportive and some recoiled when I told. It is nothing to be ashamed of. It could happen to anyone of us. I am so sorry that some of you are so young. Mine started at 56yrs. So maybe linked to menopause.

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