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» Scarleteen Boards: 2000 - 2014 (Archive) » SCARLETEEN CENTRAL » Support Groups » Got chronic sexual pain? Come hither!

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Author Topic: Got chronic sexual pain? Come hither!
-Lauren-
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Since lots of our users over the years have reported chronic genital pain, be it with intercourse, penetration, or just plain general, I figured it's time we had a thread that addresses these problems and offers support for sufferers. Many support sites I've seen cater mainly to the older crowd of women, which can further alienate a young woman who feels she should be young, carefree, and oversexualized as the media would paint them.

Firstly, to anybody reading this who has such problems, a good read over of our article on painful intercourse should help to clear up most issues. Failing the common sense strategies outlined there, one should get themselves into a doctor to be screened for infections, STI's, anatomical variations, vaginismus, the works.

There are times, however, when there are no indications of vaginal infection, anatomical abnormalties, nor is any physical evidence present whatsoever that indicates stimulus of the vaginal area should be painful. In this case, a genital pain disorder called vulvodynia may be to blame.

1 1/2 years after my first attempt at intercourse, I finally received a diagnosis of vulvar vestibulitis syndrome, a subset of vulvodynia in which the pain is concentrated in the opening to the vagina. Before that, I went to two doctors repeatedly. I recieved wishy-washy answers from both, including gems like "You're just too tiny for sex", "You're too young to worry like this", "Just stretch yourself out, relax, and you'll be fine", "This is just a problem in your head, often caused by not being okay morally with sex or hating the person you're sleeping with".

Needless to say, much of the medical profession is not too familiar with pain disorders of the vulva, and at times, a medical professional's dismissal and trivializing of a woman's pain can be very damaging. Luckily, I was able to seek out a practitioner knowledgeable in chronic pain conditions, and I'm trying treatment right now.

I just wanted to leave this open in case any other teens/young women have similar problems, are struggling with body image/self esteem issues related to chronic sexual problems (I've been THERE!) and seeking help and overcoming them. I'll try to help as much as I can, as will any others who come forward. [Smile]

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babybear
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When the doctor tested me for STI's, even the little tiny swab hurt me upon insertion. I have trouble with tampons, and no matter how much lube, insertion ALWAYS hurts. The pain is not inside my vagina, but in the opening.

Do you experience this?

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-Lauren-
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Yes. A positive "swab test" in which the woman experiences pain at certain points in the vaginal opening when touched with a moistened q-tip, when all other potential physical causes of pain are ruled out, usually warrants a diagnosis of VVS.

Your case has intrigued me, in particular. I can't tell you HOW many times I've gone into the GYN suspecting a vaginal infection, and being told there's nothing there and being sent home with a yeast cream just for good measure. Turns out, it was just the burning/itching/pain of this condition the whole time.

For curiousity, has your recurring BV been confirmed each time you've received treatment?

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babybear
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As far as I know, the BV had been confirmed. I definitely had the discharge. The second time I went to the gyno because I knew I had it again - this was a new doctor - I told her about my previous history with the infection. After swabbing me for STI's [which came back clean], she immediately wrote me a prescription for Flagyl, which bothered me a bit because she did not do a whiff test or even have a look under the microscope. I am pretty sure I do not have BV anymore; the pain is not inside of my vagina - but directly in the opening and... maybe less then an inch inside.


Come to think of it - when I had my pap done back in December - it wasn't so much the swabbing of my cervix - the problem was with the speculum. I just thought the doc was being too rough.


How is your treatment going? I'm considering making an appointment with my gyno about this. Thanks so much for posting your experiences!

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-Lauren-
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Yeah, doesn't sound to me like she confirmed the BV that time. Some docs can tell just from the appearance of discharge what sort of infection it is the first time around, but when they have a patient for whom things aren't clearing up with the first action, they really ought to be extra sure.

So, how about getting back in to the gyn, and asking about getting cultures for yeast and BV? If those come out clear, it's time to explore causes like vaginismus (which really doesn't sound like your case, since you can have successful intercourse, it just hurts to high heaven) and vulvodynia. I'm assuming those STI screens came back negative, too?

If your doc is stumped by more complicated causes, ask them to refer you to somebody who treats chronic sexual pain, or you can leave and go doctor-shopping yourself. Ping me and let me know how it goes, and if you need anything else!

(Today is actually my first day of treatment, since the pharmacy had to special-order the lidocaine ointment. The poor girl at the counter didn't understand why I took one look at the can as she bagged it and walked away giggling madly, seeing it labeled "Lidocaine ointment 5% - Spearmint flavored". How considerate of my NP!

I went into my diagnosis/treatment and plan to update in my VP thread, if you wanna check it out. Thanks for asking. [Smile] )

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babybear
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Hahaha!! Spearmint flavored. I'll guess you'll be feeling extra fresh! [Smile]

My STI tests came back negative. The BV situation has seemed to improve - I'm eating lots of yogurt and switched to Aveeno body wash - soap-free, dye-free, fragrance-free.

I don't think vaginismus is anything to worry about - we do have successful - and quite good - intercourse, it is just the insertion [with anything, for that matter, not just the penis] that kills me! My boyfriend says it just because he is "packin' too much" haha. Oh, please.

I'm going to make an appointmet with my gyno and discuss this with her. If it weren't for you, I would have never known of this condition. Good Luck with your treatment - Keep posting and tell us how it goes! Once I get to the gyno I'll give you a full update.

[Smile]

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feefiefofemme
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So...

While I've never had partnered sex, I do masturbate. And I find that when I do, I can never insert more than just one finger into my vagina, even when I'm super aroused. If I do try to do so, I experience a sharp pain. I don't have any trouble with tampons when I do use them (though I don't usually use them, simply because I like pads better) or with putting in just one finger. However, if I try for more than that it just won't work!

It doesn't really seem like I would have any difficulty once I got past the opening of my vagina. There's plenty of wiggle room once I get farther in. It's just actually getting in in the first place that presents a problem. This leads me to think that I might be having some sort of trouble with my hymen not being fully eroded. But I'm not really sure. I don't have complete knowledge on the subject, though I've done a bit of reading.

I'd like to visit a gynecologist about this whole issue, but when I talked to my mom about it she said I didn't need to go to one until I was sexually active or going to be. I didn't actually tell my mom about the trouble I was experiencing (while I can talk to her about pretty much anything, it just feels a little too awkward to talk to her about this), I just told her I wanted to see a gynecologist. I suppose it's not absolutely nessacary that I get it seen to right away, as I'm not planning on being sexually active any time in the near near future. But regardless, it seems to me like it would make much more sense to get this whole thing dealt with now, when there's not exactly a pressing need to do so, than when I'm wanting to have some form of sex that involves penetration and find that I can't.

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Alice
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quote:
Originally posted by Miss Lauren:
The poor girl at the counter didn't understand why I took one look at the can as she bagged it and walked away giggling madly, seeing it labeled "Lidocaine ointment 5% - Spearmint flavored". How considerate of my NP!

(I really don't mean to butt in here, but I just couldn't resist...)

Spearmint Flavored. That's hilarious. But *why*? The only reason I can think of is oral sex. Is that it?

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cool87
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I just read your story BiGoddess and wanted to say that I seem to have something really similar as you.

I have pain upon insertion too (which might be cause of my hymen and will likely go away with time) and yeah there seems to be a lot less room at the entrance than in my vagina.

It's not really extremely bothersome for me but it's not a funny thing to have either. But the gyn told me it will go away with time and was not something to worry about.

So a trip to the gyn might be a great idea.

And nice to see I'm not alone in that. [Smile]

[ 04-06-2007, 03:17 PM: Message edited by: cool87 ]

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-Lauren-
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Hey, BiGoddess. Have you been to a gyn ever, to date? If not, it might help to remind your mom that you should be going yearly from the date of your first menstrual period. Not to mention that you ARE going to be sexually active; whether or not you have a full exam two years or 6 months prior shouldn't make that much of a difference, besides the former being much better in terms of preventative healthcare.

You should be able to call your primary physician and ask for a referral to a gynecologist; that should help you avoid hassles with your insurance. If your mom isn't receptive to you going, you can ask the gyn office about going in alone, how much they'll charge, etc. [Smile]

(And Alice, I think what happened is that the pharmacy made a mistake and thought the ointment was for oral use, because the can said "for dental office use only" in tiny print. Unless my NP did it as a joke. [Razz] )

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feefiefofemme
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No, I've never been to the gyn. I told my mom that really at this point I should have been several times already, because I've had my period for just over five years now, but she said that she's never heard that you're supposed to start going when you start your period. Her words were something to the effect of "You know, most women will tell you that going to the gynecologist is not a pleasant experience and not something you want to do any more than you absolutely have to. And no one goes when they start their period. You go when you're sexually active." When I was at my last doctor appointment, which was just a couple weeks ago (I had to get a physical before I go on tour to China this summer), I asked my doctor about going to the gyn and he said that you should start going when you turn 18 or when you start having sex. Which, really, doesn't make any sense to me at all. Because if I go to the gyn for the first time after becoming sexually active, than how on earth will I know prior to sex if I have any STDs?

What with all this, I'm more than a little bit frusturated. I'm considering telling my mom that I am having sex, just so I can get in for a visit. :D No, I'm just kidding. I know that wouldn't be a good idea. But really, I'm not sure what to do, especially since my doctor doesn't think I should be seeing a gyn at all until three years from now.

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-Lauren-
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Hey, BiGoddess.. I remember you saying you're in California at some point. If that's the case, you can likely get a GYN exam free at a local planned parenthood or public health clinic through the state program.

Is that an option?

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feefiefofemme
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Yeah, I am in California. The nearest planned parenthood to me is a couple cities over, though, and not too easy to get to for little old no-driver's-license, semi-over-protective-mother-having (she won't let me ride the bus to far by myself) me. *shrug* I think my best bet at the moment might be another "Mommy... lemme go to the gyn!" talk, maybe explaining a little more of why I want to go, and then, if that doesn't work, go from there.
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-Lauren-
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Soo.. thought I should post what's going down here for good measure, since my VP posts have a tendency to be so disjointed, and I'd like to chronicle my experiences just in case another young woman finds herself in the same situation (I hope not, but hey).

After a bit of deliberation and being sent to my NP's colleague, I've decided on having surgery. This doctor seems to believe, like many other experts on the disorder, that topical medications are of little help to women who have had the problem for most their lives, and that the success rate is too low for the sexual (and accompanying emotional) effects they have to live with.

The date for the pre-op is June 26th, with the surgery two days later on the 28th. I've read accounts of what recovery is like, and they look a little harrowing, but I'm pretty sure I can handle it. I'll post more once the time rolls near -- thank goodness I have some time to prepare mentally and enjoy my vajayjay as I know it -- and post a vestibulectomy-recovery saga for your TMI-enjoyment. [Smile]

[ 05-22-2007, 06:17 PM: Message edited by: Miss Lauren ]

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pyro_angel
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14) Surgery – Vulvar vestibulectomy with vaginal advancement. The theory behind surgery is that the underlying problem with VVS is that there are too many nerve endings in a very small area of tissue (about one square inch) and if the mucosa (skin) with these abnormal nerve endings is removed and replaced the healthy tissue, that this will solve the problem. There have been 25 published studies examining this procedure for VVS and 21 of the 25 have shown greater than an 80% success with the surgery. Unfortunately, surgery has gotten a bad reputation.

If surgery is not done by an expert (who has done many of these operations) there can be significant side effects including infections and scar tissue formation. In addition, if not enough tissue is removed, there can be areas that still hurt after surgery. In fact, initial success rates for this operation were only about 50-60%, but continued advance in surgical technique has pushed the success rate to almost 90%. In one study, more than 85% of women who had the surgery would recommend the surgery to another woman similarly affected.

Many authors suggest that surgery should only be used as a “last resort.” However, more recently, as the success rates are now so high, many experts in the field suggest surgery after failing 1-3 alternatives discussed above. Lastly, many experts also believe that because primary VVS is probably a congenital operation, surgery is the only treatment that will work for primary VVS.


Is this the surgery you're having? How is it going? I've read a bit about VVS and maybe it's what I have.. [Confused]

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-Lauren-
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Hi pyro angel, good to see you over here. [Smile]

Yes, that's the surgery I had. I had only tried one treatment, that is topical lidocaine, and when that failed I decided that I wanted to go for surgery when I read the relatively high success rate compared to other treatments.

You can read about my recovery in depth in my Village People thread. Aside from a complication (the surgical site got infected and caused atypical pain and bleeding, plus the stitches coming loose.. getting checked on Monday), my recovery thus far has been relatively easy.

If you'd like to read it, I also wrote about my struggle to get a diagnosis and my feelings relating to my relationship on the main site:

Too Young for Sexual Pain?

VVS is actually the most common cause of chronic vaginal pain, being prevalent in up to 15% of women complaining of pain during intercourse. It can lead to conditions like secondary vaginismus if it goes untreated and intercourse continues, making it a bit more complicated.

Generally, diagnostic criteria is pain at the vulvar vestibule (difficult to explain exactly.. it's the skin around the mouth of your vagina which the hymen is attached to) upon touch with a moistened Q-tip during a physical exam; to most women, this will present as nothing but slight pressure, but it is very painful for women with VVS.

If you suspect this is the case, you should find a gynecologist learned in vulvar pain disorders; biofeedback therapy as a treatment option can be provided by a sex therapist, but VVS itself often requires medical intervention.

I'm happy to answer any questions you have or talk about any difficulties you're having emotionally. It's such a tough space to be in, and it really helps to talk to someone who knows what it's like. [Smile]

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pyro_angel
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Thank you so much for sharing..
I'm not sure what I have, I keep telling myself it's all in my head, but I think that's a hope more than a fact.. I read lots about Vaginismus, but I CAN get my finger, or a tampon into my vagina, it just hurts ALOT most of the time. I can get my finger in without it hurting SOMEtimes. I'm hoping to get a referral to a gyn as well as seeing the sex therapist. His qualifications say "Counselor, Ph.D., R.C.C.". I'm not sure exactly what that means, but I know he's called a DR because of the PhD.. I think. Mostly right now I'm just trying to not freak out over the idea of going to see him next Monday.. Thankfully, my boyfriend has offered to come with me and drag me in there..

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pyro_angel
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I just read the link you send me to, and I cried. It sounds like what I've been going through, only even more severe [Frown]

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Courtenay

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-Lauren-
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Aww, pyro. I'm sorry so much of this has hit home. Hugs your way!

When you talk to the therapist Monday, can you ask about a referral to a good doctor who deals with female pelvic pain? I'm willing to bet he receives lots of patients from good doctors who send their patients to work on the mental/emotional issues of their conditions.

If he can't recommend a doctor, find out which ones in your area accept your insurance (I apologize for not being familiar with the Canadian healthcare system) and call each one before you make an appointment, saying something like "I've been having genital pain during intercourse for a long time, and believe it may be due to a condition like vulvodynia or vaginismus. Are you/is the doctor familiar with these and treat them?" This is your best bet for any doctor; I wasted far too much time and money on doctors who didn't know what was wrong with me.

This is NOT in your head, honey. Physical pain is real as real gets. You deserve treatment with a caring practitioner and a full sex life.

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Heather
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I just want to add a comment to make sure the wrong message doesn't get sent here, or Lauren's last sentence there isn't misinterpreted.

Lack of vaginal entry or intercourse does not mean an incomplete sex life; nor does sex without that mean that sex life isn't "full." That's obvious, I'd hope, if it isn't wanted or all that interesting for a given women, but it's also important to recognize even if it IS wanted, but for certain people, just isn't possible or comfortable.

Given the vagina, for the most part (especially when we're excluding the clitoris) doesn't overall have any more nerve endings or sexual sensation than say, your ears or neck, if a person winds up in a situation or a certain condition which makes vaginal entry or intercourse impossible, it's a disability like any other. So, just like we wouldn't say someone with chronic back pain couldn't have a full sex life, or an amputee couldn't have a full sex life, the same is true for someone who has a vaginal disability.

(And just because the world at large or heterosexual men make it seem as if vaginal sex is some massively critical part of sexual life doesn't make it so, especially since most of the folks sending that message don't even have vaginas of their own.)

Pyro: by all means, if you've had chronic vaginal pain, you should have been referred to a GYN well before now -- in fact, I'd say before you got referred to a sex therapist, because if this is only or solely a physical issue, with a definate physoliogical source, then a sex therapist is going to be of pretty limited use to you. So, do be sure to be as specific as you can about your symptoms and experiences when you see the therapist, and if they do NOT make a point of being sure you can see a GYN, then it's time to focus your efforts on finding a route to that yourself. And if you just can't get a referral at all (which would strike me as really odd), know that even a Planned Parenthood clinic -- and there are PPs in BC -- is a route to get that care.

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pyro_angel
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I'm aware that vaginal intercourse isn't the "be all and end all".. I've been on this site for way too long to still think that. It is, however, something I really WANT, for myself, not for society or anyone else.
As far as the gyn stuff, I've seen a gyn about it once before, and she assured me, similar to Lauren, that everything was normal and I'd be fine. My doctor did my last couple annual STD/Pap tests, and again assured me that everything is physically normal. However, after reading lauren's stories and bit of stuff online, I'm determined to find a gyn who will take me VERY seriously and try hard to find a physical cause..

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Courtenay

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Heather
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When you saw your GYN, did you get a speculum exam, though (you must have, if you had a pap)?

If so, was that strongly painful for you?

I also want to make sure you know that it's not a good idea to be invested in a particular problem having one kind of cause: you say you want them to try hard to find a physical cause, but it really doesn't matter if the root cause is physical or psychological. What matters is simply finding out what it is, period, so that you can get the appropriate treatment for it.

There's no more weight with sexual probelms whether they're physical at root or psychological: both can have very tangible psychological and physical effects. So, even if your issue IS phychological, that in and of itself can create pain, and that should -- just as if it were at root physical -- be treated with the same seriousness.

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pyro_angel
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That makes sense..
My speculum exam was not excruciatingly painful, in the way that would be symptomatic of vaginismus as I understand it, but definately not pain-free, as they keep assuring me it will be if i "just relax".. ugh. I'm just trying right now to take some steps toward getting an answer to this, you're right, i don't care WHAT the answer Is!!
Courtenay

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-Lauren-
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Well, I suppose a brief update here is in order. I'm currently 12 weeks post-op, with mixed results.

The pain with everyday contact is significantly lower; the inner labia and most the surrounding tissues can be lightly touched without any feeling of burning or irritation. The best way I can explain the pain before was sort of like touching your eyeball with your bare fingers.. just a stinging/burning irritation. I'm glad that's gone, at least.

However, there are some areas that I believe have been made significantly worse; my doctor calls them "sore spots" and my partner describes them as very irritated-looking spots like canker sores. I'm not sure what the deal is with that, except my current specialist is all out of ideas and doesn't know what to do with me.

I'm mostly happy with the improvement, even if penetration is slightly worse. I won't be going to the teaching hospital as recommended, but will be revisiting nightly application of lidocaine ointment, cranberry tablets/plenty of water, and wearing an emollient ointment during the day. I've had enough with the medical approach for now, so I'll tinker with stuff myself and see how it goes.

But hey, at least it might now be possible for me to buy that cute bike to get around on, and I don't cringe at the thought. [Smile]

[ 10-01-2007, 02:16 AM: Message edited by: *Lauren* ]

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