Uncategorized, when sex hurts

The First Diagnosis

Note: As I mentioned last week, I’m chronicling my adventures into the land of sexual pain mainly to help educate, and help other women who may experience or will experience these types of issues. I do not claim to know everything and everyones body is different. I will however, do my best to define terms when they come up so as to educate the best I can. Know some details from my personal experiences may be fuzzy, and my knowledge on all of this is still growing. If I ever say something in error, please feel free to correct me. Onwards! 

I was 18 the first time I really decided to see what was wrong with me. Back then the only people who knew I suffered from any sort of vaginal pain were my mom and my sister, neither of whom had any knowledge on what could be wrong.

At 18, this was one of my first-if not the first-soiree into the land of gynecologists. I remember being incredibly nervous going to the “adult” floor in Kaiser for the first time. My mom had offered to come with me, but I remember stubbornly  refusing and believing I could handle it on my own.  I remember the waiting room, and being called in, and being asked to put on one of those flattering and comfortable hospital gown… :-p

I don’t remember the doctor. I remember haltingly trying to explain what was wrong in awkward, unhelpful words, and faltering vocal hiccups. The doctor was not impressed. They (I can’t for the life of me remember if they were male or female) said it was probably nothing, but they’d take a look anyway. I remember being SO EMBARASSED that someone was going “down there” even if it was a doctor. I recall barely being touched, and the pain roared back just as intensely as ever. The doctor told me they couldn’t help me, and I needed to speak to a specialist. She (he? Gender non conforming? who knows) gave me a name, and then left me alone.

I left the hospital feeling shame, embarrassment and also a resigned resignation. I’d hoped this random gynecologist would somehow find a miracle drug for me. No such luck. An additional doctor was needed.

When the time came to meet Dr. Kathleen West, I felt incredibly hopeful. It was about a month or so later and I’d finally been able to get in to see her. I took her busy work schedule as a good sign and while still nervous, was much more hopeful than I’d been at the regular gynecologists office. Dr. West is a physical therapist out of Kaiser and while I didn’t understand how physical therapy could help me, I knew that she worked in women’s health and had helped many women prior to me.

Dr. West is an incredibly kind and knowledgable doctor. She took me into her office and asked me a series of questions about what my pelvic pain was like. She, unlike the doctor who’d referred me, said she could probably help me. Dr. West took her time and took immense care when she examined me. I remember the pain being horrific as always, but Dr. West guided me through it and helped me as best she could. I know I cried on her table, and her telling me it’s ok and that was quite common. I vaguely remember a machine as well, though I couldn’t tell you what it was for; only that she used it at some point. At the end of exam, Dr. West diagnosed me with vaginismus.

  • Vaginismus is a condition that is is the result of an involuntary vaginal muscle spasm, which makes vaginal penetration of any kind impossible whether it be sexual, tampons, or medical needs such as a pap smear. So, in other words, the muscles of my vagina would randomly decide to clamp down tightly and nothing could get in regardless of what it was.

This definitely sounded like what I had. I asked how I could possibly have vaginismus. This was the first-but far from the last-time I was asked if I was ever sexually assaulted by a family member. I was very adament that I was not. I was pressed further, and again declared very sincerely that this had never happened. Make no mistake, I understand why these questions are asked. Vaginismus is OFTEN a byproduct of sexual assault and if this has happened to you, there are steps to help. I will try to go into more details later, but for me specifically sexual assault was not an issue at the time.

Since assault was ruled out, Dr. West couldn’t tell me what caused my vaginismus, only that I had it. I asked her why it hurt so much when nothing could even get in there. She told me that vaginismus was a cyclical pain issue. When you think something is going to hurt you, your body automatically tenses up to help ward off that pain. This is the case with most anywhere on your body. Imagine someone working too hard on a knot while getting a massage. You tense up right? Well..the vagina is full of muscles. Why would the muscles of your vagina be any different than the ones in your back? They’re (k)not. (I’m sorry. It was a muscle pun. I had to) 

Dr. West expalined that because I was worried about the pain-and indeed had been worried about the pain for so long at this point-that is what caused my body to tense up whenever anything approached that area. This fear then caused the pain, which then reinforced the idea that this pain was there, and so the cycle continued. To break this cycle I would need to do a series of exercises at home and learn to retrain my brain. I was told I should buy a series of dilators (which I did, but not until 2 years later) as well as lubricant to use with the dilators to make things easier and get my muscles accustomed to “foreign objects.” I was also told to do a series of kegel type exercises to train my muscles to relax. Counter intuitive I know. If nothing helped, botox was an option, or in extreme cases, surgery. I was very overwhelmed by all this information, but I believed Dr. West when she said these things would help me. There’s only one problem…they didn’t.

I want to make myself very clear when I say that Dr. West is an incredibly knowledgable, helpful, and warm doctor who did her best to help me. However, due either to the lack of knowledge on the subject at the time (2006), or due to my case specifically, Doctor West couldn’t help me past diagnosing me with vagnisimus. Which, I’d like to state, I DID have. The reason she couldn’t help me is because she couldn’t diagnose the CAUSE of the vaginismius. As I’ve already stated, we’d ruled out sexual assault. That accounts for over half the cases of vaginismus. We’d ruled out sex entirely, childhood trauma, and shame over sex. I didn’t feel shame about having sex. I felt shame about my inability to have it. So while I understood what Dr. West was telling me and believed her, I knew that wasn’t the only thing wrong with me. Something had to be the CAUSE of the vaginismus. You don’t just develop it from nothing. Nerve pain doesn’t happen from nothing. But as to what that something was, or how to treat it, I was pretty much on my own.

The other thing Doctor West did was perscribe me with Nortriptyline for the nerve pain.

  • Nortriptyline is a tricyclic antidepressant. It affects chemicals in the brain that may be unbalanced in people with depression.

Nortriptyline isn’t always used as an antidepressant though. Nortriptyline also helps with nerve pain and is often perscribed for it. Dr. West emphasized that she didn’t think I had depression, but that this would help with some of the mental fears I had towards the pain. I mention this wording specifically because it’s important. I don’t think it was intentional, but I took her wording to mean there was something wrong with how I was thinking and that’s why I was in so much pain. If I could somehow fix whatever was wrong with my brain, I could fix the issue. Dr. West was right, the drugs DO help with the mentality of the pain, but it’s much more complicated than that and I took her meaning very literally. This one sentence held me back for years.

Finally Dr. West told me how I walked also probably affected my issues and she told me I had an incorrect stance. She proceeded to have me stand for about 5 minutes and make micro adjustments until I was ‘standing correctly.’ I had no idea what standing incorrectly meant, and I certainly didn’t know how to emulate the correct posture at home.

I was printed out a detailed list of instructions and home care that I should do nightly, as well as a trial basis for the Nortriptlyine and sent on my way. The trail basis meant I was to start with 10mg nightly and gradually work my way up to 50mg daily. If-or when-I noticed a difference in pain, I would stay on that number of mg.

Such the long road to recovery began. I cannot emphasis enough that I think Doctor West was, and is, incredibly knowledgable. I’ve not seen her for many years, but I’ve no doubt she has learned a lot more about all of these issues since I saw her as a patient 10 years ago. As a later physical therapist told me when I related my wishes I’d seen her sooner; “honey. We didn’t even EXIST 10 years ago.” But again. I’m getting ahead of myself. There is a LOT of information to go through here and I want to try to inform, discuss, and explain as best I can in bite sized bits. I know a lot of this may be confusing especially in terms of nerve pain, and how drugs can help with that. I will do my best to explain everything. But for now, marinate on all of this.

As always, feel free to ask, question, engage, and share. ❤

Uncategorized

The Beginning

I was twelve. I was in karate class and all of a sudden I had this weird ache in my back and everything felt kinda wet. It was funny because even though I’d never really discussed puberty or anything prior to that moment, I instantly knew what had happened. I asked to be excused, went to the bathroom, and sure enough there was a bright red spot. I thanked the stars I was wearing a black gee as opposed to a white one. Being the quiet 12 year old that I was, I decided I didn’t wanna risk anyone worrying about me-and this was way before cell phones were a thing-so I dealt with it for the rest of class. When I arrived home, my mom did what I suspect many moms do when their daughter tells you they got their period. She got incredibly excited where I, flush with embarrassment, just wanted the entire thing to be over with. She asked if I wanted a special dinner for “becoming a woman.” No. I most certainly did not. And I begged her not to tell my dad.

She explained to me the differences between pads and tampons. At that point (2001 I think?) there were no such thing as Thinx period panties, and while the menstrual cup was definitely on the market, I don’t think it was something my mom was incredibly knowledgable on. I remember her explaining that pads were essentially like a diaper and that tampons were what most women used and what were considered the best and most efficient way to deal with the blood. So I tried to put a tampon in….

It’s the first time I remember feeling the-what would later become familiar- intense pain. I remember telling my mom and she said I must’ve put it in wrong. I tried again. It hurt again. It was excruciating. It felt like that tampon had turned into this red hot knife and it’s sole purpose in life was to split me open and rip me apart. I quickly abandoned the idea of tampons and for the next 6 years wore pads with little thought of anything else. It definitely made certain things difficult (swimming was an issue for a while) but all in all I didn’t really care too much. It was something to soak up blood for 3-5 days. Nothing more.

Those first few years were brutal for different reasons. I never cared to try tampons again as I was more concerned with the constant, horrible, intense aches that were menstrual cramps every month. I called it my tutu of pain. And while the sharp, agonizing, ordeal from that first time trying a tampon was (and is) way worse than any menstrual cramps, I could control putting a tampon in. Or rather, not putting one in. I could avoid that pain. So I did. I assumed there was something wrong with me, and I was built in such a way that tampons weren’t possible, and left it at that.

This was the majority of my adolescence in the land of periods. I was a pretty late bloomer for a lot of things so it wasn’t until I was about 16 and my sister ( 3 years younger mind you) pointed it out to me, that i realized I may have a bit of an issue.

“Annika. You can’t even wear a tampon. That’s this big.” She held up her pinky finger to further her point. “How the hell are you gonna have sex? A penis is a lot bigger, you know.”

No, I didn’t know. Well ok, that’s not true. Obviously I KNEW that penises were bigger than tampons, but sex was never something I’d had any inclination of doing when I was a teenager. It had never even occurred to me that if I was having trouble putting in tampons, that I may also be unable to have sex. Suddenly the world became a lot bigger, I became anxious about a lot of other things.

When I was 17 I went to a sleep away camp with my high school choir and one night after lights out all the girls started talking about sex. Whether or not they were virgins, and when, or with whom, they wanted to have sex with. What sex was like, or would be like, and the nervous but excited giggles that followed that line of talk amongst teenagers. I stayed silent and sad. I couldn’t have sex with anyone. The pain was too much. The pain was too scary. I couldn’t ever have sex. I couldn’t participate in this conversation at all. I’d steered clear of anything remotely romantic or sexual during puberty as I knew, even subconsciously, that it was an impossibility.

That was the beginning. The beginning of the next 12 years of my life being riddled with shame, guilt, horror, anger, embarrassment, and pain. The indescribable, uncontrollable, extreme pain. The type of pain you read about in books but have yet to experience. The type of pain that makes you see stars. That causes your grip on reality to fade. Hello, internet. My name is Annika. And I experience pain when I have sex.

I wish I could tell you there is a happy ending. I’m 28 now and I’m a long long way from those 12 and 17 year old versions of me. And while things have definitely improved, I’m still a long way off from being “100% cured.” Indeed, my doctor told me that I would never be “100% cured.” This was a condition I would have to live with. BUT…it was manageable. It was controllable. I would be ok. I could maybe even have kids someday. He might as well have told me unicorns were real and I’d be riding one home from his office. But I’m getting ahead of myself.

I’m writing this, in the hopes that I can help those who, like me, experience this pain. I’m writing this in the hopes that those who don’t experience this pain may develop empathy and understanding for those that do. I’m writing this in the hopes that people can learn that it’s ok not to have penetrative sex; but to still have meaningful, sexy, wonderful sex . I’m writing this so that men and women alike can raise each other up and help each other.

Because here’s the thing. You’re not alone. There are millions of women (and men) out there who are just like you. And you’re not a burden to society for having pain. It doesn’t make you less of a person. And you are CERTAINLY not broken. I will, with this blog, do my best to document my experiences. All of them. The good, the bad, the ugly, and everything in between. From the time when I lost my virginity and my boyfriend at the time almost calling 911, to the doctor who dismissed my pain as a “head fantasy.” To the jokes made in my expense, and to the gripping fear of anyone getting close to me for fear they’ll leave once they learn they can’t “have” me.

I’ll tell you about the first time I actually had penetrative sex- which brought about a whole bunch of extra issues I didn’t even realize were a thing. I’ll tell you about the drugs I take, the physical therapy I go through, the ointments I apply, the psychological therapy I go through, and the thousands and thousands and thousands of hours, tears, and dollars I’ve wasted and spent on believing that there was no cure, that I was stuck like this, and there was nothing I could do about it. I will tell you all of it. I want to tell you all of it.

This will be hard for me. Many of these things I’ve not spoken or thought about in many years. But it’s time I told my story. Because maybe, by putting the information out there, I can help someone else who feels like there’s no hope. Because there is. Feel free to ask questions. Feel free to comment. Feel free to question, and get involved. That’s how we learn and become better. You’re not alone. And neither am I