The Vagina Monologues (and my love of Dr. Susan Kellogg-Spadt)

by statia on September 24, 2010

I’ve attempted to write this post so many times. And every time, I fail.  Either the two small people that inhabit this house, are at my feet, refusing to let me write, or words just fail me.  This isn’t one of those light hearted, witty posts where I talk about poop, that you’re so fond of.

No.  This one is about my vagina.

Writing about this, has been something I’ve toyed with for awhile.  Because, unlike my boobs, which the entire internet has probably seen by now, my vagina is a different story.  Unless of course it had something to do with infertility and me making fun of the fact that there’s a line of people waiting to get a look at the goods.  DOCTORS, people.  It’s not like I’m a slut.  Also?  I guess a lot of people have seen my vagina.  Never mind, then.

After awhile, I figured, well, if blogging about my experiences can help even one person, then isn’t it worth it to share?  I mean, isn’t that what I blog for?  Because I like to overshare?

Back when I first had sex, at the tender age of 18 or so, of course, it hurt.   Anyone that says that sex doesn’t hurt the first time is a liar.  But I had no idea how much it was supposed to hurt, all I knew was that it HURT.  A lot.  I wondered how women ever went on to have more sex, have babies, or worse, do porn, or make any other sort of living having sex.  Because I wanted no part of it.    I tried marching on, like a good little horny soldier should.

But it never got better.   I went to the gynecologist.  I told her my problems.  I winced in pain as she shoved the speculum in my girl parts, and fished around with her fist for my ovaries.   She never seemed to notice, and she told me that the pain was all in my head, and sent me on my merry way.   I should have found another doctor, at that point, but I was young and naive.   When I went back again, the next year, complaining of pain, again, she told me it was in my head and to maybe find a good therapist to talk to.

And it was at that point that I didn’t go to the gynecologist for another few years, because her bedside manner was atrocious, and I figured they were all like that, and there is nothing fun about getting fisted and then walking around like you have a snail in your pants for the rest of the day, all the while your nether regions feel as if they’re on fire.

Fast forward a couple of years, and I was at the hospital waiting for my then soon-to-be niece, to be born.   The midwife who was delivering her seemed to have this aura of goodness and light surrounding her.   I made a mental note to make an appointment with her, and it was the day that changed my life forever.   The midwife’s name was Vivian.  And if it seemed that she had an aura of goodness and light surrounding her, it was because she was such a sweet woman.  She cared deeply about her job.  Her craft.  Her patients.   We went over my history.   I told her about my last doctor, and told her about my problems, and she immediately told me that no, my issues were absolutely not at all, in my head.   She told me that I had a condition.  A condition that other people suffered from.

My problem!  It had a name, and I wasn’t alone.   She told me that she was no expert, but it sounded like I had something called vulvar vestibulitis.

Vestibulitis is basically a condition where the vestibule (or entrance to your vagina, and I wonder how many times I can say the word vagina without it sounding so formal and embarrassing) is inflamed, causing stinging and burning and redness to the nerve endings.  As I understand it.  It’s an excess of nerve endings.   And the inflammation can range from severe, as in you can’t even wear pants, to mild, where it’s basically aggravated by something, being inserted into the vagina (still weird) such as a penis, or tampon, or a Buick Rivera.  Whatever you fancy, I don’t judge.  (I guess I still can’t avoid wittiness.  Even when I’m trying not to be).   Mine ranges on the mild end of the spectrum where it kind of feels like there’s a buick being shoved up my yang when I’m having sex, but otherwise, I can wear pants, and sit, and walk, if I so choose.

Vivian referred me to one of the best people to deal with this condition.   Her name is Susan Kellogg-Spadt, a nurse practioner (phD) who is considered a pioneer in the field of pelvic and sexual disorders.   I am extremely extremely fortunate, that she is based in Philadelphia, and that I only have a 40 minute drive to see her.  There are people that fly here to see her.   I didn’t walk, I ran to see this woman.   She made me feel as if I wasn’t insane.   What killed me was that, from being on birth control (which I find so funny, after going through fertility treatments for years), I always had a chronic yeast issue.   The stupid asshole gynecologist that told me everything was in my head, just threw pills at me, and whenever I went in, she told me, “you don’t have an infection, just have yeast.”   And that should have been my second clue to flee from her care.   Because of this chronic recurring yeast problem that only temporarily went away with things like diflucan or some sort of vagina suppository containing foul goo, it was most likely the cause of the condition. When I first went to see her,   she started me on an estrogen/atropine combination, applied topically.   I graduated to a capsaicin cream, also applied topically.

Did I mention that not only did she help me, but this woman is all sorts of awesome?

I know I just heard screeching brakes in your brain.  Hold up.  WHAT?  Why on earth are you putting the equivalent of a jalapeño on your vagine?

I know, right?  It totally sounds like backwards logic, and it kind of is.  The first time this was applied by Susan herself, she gave me full on “no bullshit or sugarcoating” warning that it was going to hurt and it was going to hurt like a bitch. And then she proceeded to stand near my head, because she’s obviously not stupid.  I would have full on donkey style, kicked her right in the teeth. But then, once the burning wore off, and I stopped swearing, I realized that it calmed the nerves down, and helped with the pain.

It was ten years ago, that I sought care from her.  And where I’m at now is basically, well, I’m uncomfortable.  Sometimes sex is still unbearable, sometimes it’s a lot less pain and I can handle it.  The pain has not completely gone away.  My next option is surgery.   Even though it’s knives coming at my vagina, I’m kind of at the point where I’m ready to move on.  To see if it will make my quality of life better.   Recovery is very tough, from what I’ve heard.  No heavy lifting for a really long time.  I went for a consult when the Mini was about LG’s age now, and I just couldn’t bear not being able to pick him up for that long.  Even going through what we were with him, at the time, when the doctor told me that I couldn’t lift him up, he got up from where he was playing and climbed in my lap and nuzzled his head under my chin.   Even though it seemed as if he was checked out and not paying attention, he knew.   And then a few short months later, we found out about matlock baby.  And now she refuses to be put down, ever.  I’m not ready to put her down yet.  This time with her will go fast enough.  But I’m ready.  I’m just waiting.

Why am I telling you this?  Because there are so many women out there with this condition.  I thought it was something that was rare.  Something I was one of the few that suffered from it.  And I’ve learned that I’m not, and it’s not uncommon. People just don’t talk about it.  It’s a shame.   I don’t go around talking about it like I do developmental delays and Autism.   Because that just makes for an awkward introduction.  But I do share it with people I’m close to.   I guess I’m close to you, internet.  I don’t want people to feel afraid, or like they’re a freak.  It’s so damn common that every time I make an appointment to see Susan, it’s like a three to four month wait.    So it’s obvious that it’s a secret hell that so many women are going through.   It’s a sad thing.  It’s a frustrating thing, especially for your significant other.

But you’re not alone.  And if that’s how you feel, then talk to me.  Ask me questions.  Or tell me what you know.  I want to give you a hug.  I want to bump fists.

Most of all, I want you to feel like it’s going to be OK.

{ 11 comments }

Betty M September 27, 2010 at 2:17 pm

Good on you for writing about this and helping other women out there. I had never heard of this condition before now. I am glad you have found health professionals who have taken you seriously as so often in the “women’s issues” area such help is hard to find.

Tommie September 27, 2010 at 3:47 pm

Oooh, those who say sex doesn’t hurt the first time are insane! I bled for six hours the first time I had sex. And it wasn’t just spotting, it was full on maxi-pad bleeding. Uck!! It was months and months before I was willing to try that again. I’m glad you posted this. Bring these things out in the open so the taboo of it all will go away.

Orodemniades September 27, 2010 at 9:04 pm

Wow, that sounds like hell. I don’t have sex that often (totally TMI) but I always experience that ring of fire…it’s nothing compared to what you’re going through, though. i hope it gets better!

Kimmi September 28, 2010 at 4:22 am

Gday from Australia. I read your post earlier today and have been thinking about it since so I’ve decided to finally delurk after reading your blog for a few months now. I also suffer from the same condition and have been to hell and back since starting to feel pain during sex when I was 19 years old after pain free sex before that. At first I was terrified that I had a STD but after finally getting the courage to go to the doctor and being tested for everything under the sun and being given the all clear the pain has never totally gone away (I’m now 30 years old). I went to many doctors whose responses ranged from “hmmm, not sure what’s going on here” to “you need to admit you’ve been abused and go see a counsellor”. I finally found some relief with daily pelvic floor exercises but sex is still a fairly stressful event for me. Consequently, I was a little relieved to need IVF to get pregnant with my daughter (who turned 1 year old today!) Anywho, thanks for being so brave and honest and for sharing your story.

Betsy September 28, 2010 at 10:14 am

Thank you, thank you, thank you for sharing this…. after reading it a little light went on; I think I suffer from the same thing. It was always mild until I had my son and now it is absolutely agony to put ANYTHING in there, or near there, or to wear tight pants.

I have no insurance for another 3 months, so I won’t be seeking help any time soon, but it really nice to hear that I’m not some sort of vaginal freak!

Veronica October 2, 2010 at 4:01 am

This is why I share things that I might feel ‘odd’ about too, because if it helps just ONE other person, it’s worth it.

I’m lucky I guess that my ‘similar’ thing is just a latex allergy. Sex using condoms leaves me burning and itching for a week – same deal with gloves at doctors. If I’m lucky, they can hunt down latex free gloves, if not, I’m taking sitz baths for a week afterwards and crying when I pee.

Also, I just emailed you about stuff too, unrelated autism stuff.

Old School/New School Mom October 2, 2010 at 2:23 pm

So, is sex ever enjoyable? That’s so frustrating, but good that you got an actual diagnosis instead of that stupid GYN that told you it was in your head. Sometimes I think doctors have their heads up their arses. Seriously.

It’s great that you’re getting the word out about this. Hopefully someone else with this condition will benefit from reading that it’s “not in their head.”

Do you think you’ll opt for the surgery?

D October 2, 2010 at 9:09 pm

Oh thanks so much for writing this post. My friend forwarded your post and I’m so glad she did. Sex is excruciating for me but I’m lucky that it doesn’t interfere with my everyday life. I too have been relieved that my infertility treatments have kept me from needing to have sex. The specialist in town has tried the few limited things he can to treat me but seems at a loss since those things didn’t help.

Traveler October 3, 2010 at 12:23 pm

Wow, what a well written and informative post. As a healthcare worker it horrifies me that there are still people out there like your first Gyn. – but I’m well aware of the realities. Aside from that, I’m wondering if you’ve seen a Physical Therapist that specializes in women’s health and pelvic pain. The reason I ask is that I work with one who seems to have some success. My though is always to avoid surgical intervention until no other option is available. Best wishes to you and all the other women out there suffering right along with you.

Donna October 3, 2010 at 2:14 pm

Dude. I’m sorry for what you’ve been through and what you continue to go through, truly. And big kudos for letting the internets hear about it, you’ve already helped as you can tell by the ones who are brave enough to comment. Thank goodness for doctors who actually listen to their patients and do their homework.

jenG October 5, 2010 at 11:09 am

I was just having that conversation the other day…not about vaginas, but about how if telling the internet stuff that would make my grandmother spontaneously combust helps just one other person not feel alone, it’s worth it.

(Actually? In a way, it was kind of about vaginas. Huh.)

Anyway. You continue to rock. I’m glad you found someone who could actually help.

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