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 all so fond of.
No. This one is about my vagina.
Writing about this has been something I’ve toyed with for a while. 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 my infertility and my 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 a while 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, 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, 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. Really there’s 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. 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. 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) is inflamed, causing stinging and burning and redness to the nerve endings. As I understand it, it’s an excess of nerve endings. 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 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, 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 practitioner (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 understand 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 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 that I 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 vagina?
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 not only was going to hurt but that 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 painful 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 take that step 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 that 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.
July 19, 2009 will always be an important date in our families personal history book. To most this day passes without a second glance, but to us, today will always be the day God saved our son.
The emotional roller coaster of this day has not even come full-circle, the accident happened at 7PM. And yet, before 9AM I have felt joy, peace, fear, sadness, anxiety, hope, reassurance and love.
And, I’ve told Satan to go to Hell.
Because today, friends, is about celebrating life & all that it has to offer.
The fear and anxiety that Satan is calling me to feel will not overpower the joy and celebration of this day. There are many forts to build and pools to swim, trees to climb, and playgrounds to discover. We do not have time to waste on worry.
There is too much life to be lived.
Last night, as Bubs slept, I crept into his room and I knelt down beside his bed. There, I gently stroked his chest and legs & I prayed and cried and thanked the Lord.
I thanked Him for:
his strong frame that held the heavy weight of that 800 pound golf cart
his wherewithal to hold that beautiful head up as the cart drug him along the concrete earth
his tiny bones that may have bent and broke but held it all together, somehow
for the neighbors who rushed to help my family in those moments before the paramedics arrived
for the paramedics who worked swiftly and kindly with my little fragile son
for the pilot that drove the helicopter carefully and without haste
the doctor’s that worked through the night to repair his tattered, broken body
for the nurses that healed my family as much as they healed Bubs during his time in Children’s Hospital
for the gift of medicine, that allowed our sleepless son to rest, and be relieved of pain, long enough to heal his bones and build up his energy to fight again the next day.
And then I thanked him for our gift of friendship. My, how we’ve been blessed. The old saying is true, you really don’t know who your friends are, until you need them. And Lord, when we needed friends, you showed us in overwhelming numbers. You gave us an emergency room full of love and prayer. You filled the waiting room for countless hours while we waited for the doctors to tell us the surgery was complete. You sent visitors and toys and prayers and hugs.
You sent tiny angels Lord, and we have seen Your face.
I will never forget the faces as I entered that emergency room. Their concern and worry wrinkled over their knitted brows. Most of them looked like they had been praying for hours, deep in communication with their Lord. Some of their eyes fell as they saw me wheeled through the room – they didn’t want me to see them crying. They are a force to be reckoned with – those prayer warriors.
I will never forget looking around as they rushed me back to my son. I have relived those moments 365 times since then… The faces of friends who came from far and away – I saw you all. The faces of people who love my little family & the little boy behind the wounds.
I am forever indebted to them.
And I am fine with that.
In my hour of need, Lord, you gave me friendship. I am honored to say that I learned to give from the best. I am honored to call them friends.
There were times when my heavy heart and tired pregnant body didn’t think it had any more fight in it – and in those times I remember the people I love carrying me. I remember friends calling and emailing & praying. I remember physically feeling those prayers working.
I have seen the face of God.
I call them friends.
And, I believe in prayer. And, I am blessed because of it.
Today, I will celebrate. I will go to a pizzeria and order a movie. I will buy “grey ice cream” (Oreo) and I will top it with chocolate sauce. I will watch him blow out candles and I will play with his hair until he falls asleep.
Anyone who has been through IVF or any type of infertility treatments can vouch for how isolating it is. The time period where I spent all of my energy and focus on trying to conceive were the most lonely times of my life. Sure, yes, you’re with a partner, but as only woman knows, creating life is entirely a maternal thing.
I could sit here and tell you my story, which would take all day. And believe me, I LOVE to talk. But to spare you, I’ll give you the short version.:
I went through approximately 6 1/2 years of infertility, on and off. It killed my first marriage, and with my second marriage, it definitely took its toll, but we had our limits. Our last attempt was a Frozen Embryo Transfer (or FET for you newbs or n00bs if you prefer leet speak). We both decided, for our mental health and our marriage, that this was it. If it didn’t work, we were going to become the crazy animal people in our neighborhood. There probably would have been weird things like ferrets and tegus.
But it worked. And we were…shocked. That’s the thing about fertility treatments, when they actually work, you feel like you pulled off a bank heist.
Cut to four years later, and we now have two healthy children, one, who was a big old natural surprise. We call her the Matlock baby. Because we joke that we had ten minutes before Matlock started, and well, you get the rest.
But my point to this is, that going through it, I felt…depression doesn’t even begin to cover it. The first time around, I felt as if I had this blanket of sadness wrapped around me, that I couldn’t take off. Ever. The second time around, I found solace in the internet. It wasn’t so taboo! I had people I could talk to. Blogs I could read. But it taught me two things:
One, you are not alone. Not by a long shot.
Approximately 7.5 [million] women are affected by infertility.
Two, use your voice. Educate.
I feel no embarrassment or shame in telling people that we had a hard time conceiving, or that my son was conceived via In-Vitro Fertilization. Was I ashamed that my body failed me? Yes, for a while, but it wasn’t my fault. So I tell people. I talk about it, and 70-80% of the time, someone will chime in, “ME TOO!” It opens doors. It helps us to find others like us. And it also helps to educate people that don’t understand what its like. When we were going through treatment, a good friend of mine was so interested in the process. She would watch me inject medication. She would ask questions. Some people will always be ignorant, but by and large, people are just uneducated about the topic.
Since I was 15 years old, I’ve been diagnosed with one thing after another.
It’s like a revolving door. Or a carousel of diagnoses. Like a really bad carnival ride, where you just want off, but it seems like it won’t end. Ever.
Usually I get a new label because we’ve run through the gamut of medication that is supposed to “solve” one problem, only to find that none of them work.
Or I have changed providers.
So I fill out another 500 question sheet of paper, which of course has answers that are completely dependent on what day of the week it is, what time of the day it is and whether or not I got any sleep the night before.
Then after this highly scientific deduction process, I’m given a new prescription to go with my new label and sent on my merry way.
Only to fall flat on my ass at some point (and I do mean fall, like rock-bottom), and have to start all over again.
This is why I’m a big fan of saying that medicine alone is not enough. I fully believe medicine is a hugely helpful tool. But I also think that it needs to be in conjunction with some form of therapy.
Of course, that doesn’t explain why I haven’t managed to make it to my appointments with my therapist in the last couple months…
This is her struggle with Lyme Disease and a happy update!
I’ve been on some version of antibiotics since late last fall, first killing Bartonella and then working with a combo of drugs to attack the Lyme bacteria.
A year ago, I had no idea why I was sick. Each month brought with it an unknown set of new symptoms. I would cycle through the month with a flare up every 35-ish days. I often predicted when I would get sick again because the cycles were so regular. No one wants a diagnosis like this, but at that point, I just wanted to know what the hell was wrong with me!
I have had several people question whether I was legitimately sick and then a few more question the Lyme diagnosis since it is far from fool-proof. But a year later, I have to say, I feel SO much better and am so thankful for the doctors who risk their licenses to treat this disease. I may not be 100%, and I certainly still have some neurologic deficits, but compared to a year ago, I am so much healthier.
The shooting electric shock pain is gone.
Where I used to be tired from doing nothing, I now am only tired from doing. I may still get more easily fatigued than I used to, but at least I can be somewhat productive. (And this week has been a record for energy I think since before I got pregnant TWO AND A HALF YEARS AGO!)
My joints feel much better and are only stiff momentarily in the morning.
The all-over body pain is gone.
I still get dizzy, but it’s becoming more and more related to over-stimulation and florescent lights, as opposed to just being dizzy because I’m awake.
I still forget how to spell words sometimes and can find myself lost in a conversation. My eyes still get tired. And the Bell’s Palsy isn’t fully resolved.
But I am better, and that’s a reason to be optimistic that I will make a full recovery!
I have a dear friend who has Hepatitis C. He went through interferon treatment, which is considered the gold standard for hepatitis C treatment, last year. The side effects were severe but it didn’t kill his disease and he will undergo an experimental protocol in January.
His wife, an even dearer friend, lived through hell during his treatment and now she has to return.
All I know how to do for them is be there when it starts. I will to walk through hell with them. They would do the same for me.
Ironically, they will probably have to one day. My better half has tested positive for Hepatitis C. I am just grateful that his viral load is still low enough that the doctors recommend against the interferon treatment; instead they are waiting, watching.
It is bad enough that these two men, so full of life and benevolent mischief, have this disease that wants to kill them. Yet, to add insult to injury, all four of us are recovering addicts. You’d think we had walked through enough hell just surviving addiction, getting clean, and finding a new way to live.
I feel so powerless, so inadequate. I want to scream. I want to fucking punch something
