I have a tri-fold chronic pain diagnosis of insterstitial cystitis, vulvar vestibulitis, and pelvic floor dysfunction. For those of you who don't speak doctor, the first one means pain of the bladder and the second two are basically pain of the vagina and parts around it.
OMG! I said it... VAGINA. What a dirty word. There are still some people that feel these female diseases shouldn't be talked about because they are something that should be private. Why? Because talking about the female reproductive organs makes you uncomfortable? My brothers grew up in a house with three females and still get super awkward when period or tampon are said.
I understand why these things used to not be talked about. It was a different world. But then there was the 70s and all of the sexual revolutions that have happened since. Shows like Sex and the City and Girls have brought female sex lives out of the dark. By why do people still feel awkward when I tell them I essentially have a vagina that malfunctions?
Changing the stigma around talking about female health issues is something I feel deeply and passionately about since it is the life I live every day. I didn't do anything wrong to earn these medical labels, and even if I did, it should still be talked about so people can be educated.
It took me countless doctors and many hours in doctors offices to get a diagnosis and treatment plans. Why? Because until ten to fifteen years ago, women who complained about pain in their vaginal area were essentially told to suck it up and there was nothing wrong with them.
I didn't know I had any of these problems until 2010 I was 24 when I started having sex. Yes, there's something else taboo about me. I chose to wait. But there I was, an intelligent, educated 24 year old who was afraid to ask people why sex hurt so much. At first I just thought it was because I'd never done it before. But after months of painful intercourse, I knew something wasn't right. It also started affecting other parts of my life. I noticed pain in my pelvis if I was on my feet too long, if I sat in certain positions, and when exercising. Some doctors believe that you are born with these issues and they aren't brought out until they are aggravated by an activity like vaginal sex.
It also affected my sex life because my boyfriend at the time didn't understand why I had to make him stop. He got frustrated because I don't really have orgasms (female orgasm, another thing that "shouldn't" be talked about). He was also an asshole and not understanding, but that is a different story.
Had there been more information about different forms of vulvadynia at the time, maybe it wouldn't have taken so many doctors to figure out the issue. If talking about sexual issues wasn't so taboo, maybe I wouldn't have been so uncomfortable asking other people outside of the medical field questions and would have been pointed down a more effective road sooner.
The good news is that while these diagnosis are permanent, the pain doesn't have to be. My vaginal issues were officially diagnosed in 2012 have been under control since about 2013 with a treatment plan that involves medication and physical therapy exercises.
Yes, I have had physical therapy for my vagina. Yes, it involves a physical therapist putting on rubber gloves with lube and manually manipulating your pelvic floor muscles. No, it is not as awkward as it sounds. No, it is not sexually arousing but yes, it does feel good... like if you were to stretch a tight calf muscle.
The bladder is another story. Once the issues the pelvic floor was causing were cleared up, some symptoms remained, some got worse, and some new ones joined the party. I had intense pressure in my abdomen, I felt like I had to pee constantly, and it never felt like my bladder fully emptied. It was frustrating because UTI tests kept coming back negative, but I was having all of the symptoms of a UTI. I was first diagnosed with interstital cystistis in 2014. It is currently 2017 and I still haven't found a treatment plan that works for me. I did, however, four urologists later finally find a doctor that not only specializes in IC, but also treats the individual and doesn't just say, "this is always how I treat IC" even if it is clearly not working for the patient. Because of her proactive care, I learned two weeks ago that I have a definite crack in my bladder lining after an outpatient procedure. What this means exactly, I'm not sure because I was still pretty drugged from the procedure when she told me, but I have a follow up soon.
I think it is also important to note here that if your doctor isn't providing care that is beneficial to you, there will always be another doctor who has another opinion and might have better care plans for you. It is also important to have a doctor you trust to tell your most intimate details to. By holding back or giving half truths, you are not doing yourself any favors in receiving the best care possible.
The "female" problems are harder to talk to a lot of people about, but for me, living with IC is more difficult because I can usually predict a pelvic flare and take actions to prevent it. IC ones usually come out of nowhere and are extremely difficult to calm. When I'm sexually active, it could go either way though.
IC is also more difficult for people to grasp the conditions and actual disease. Even my own family doesn't completely understand the disease. They don't understand that when there is a bad flare, sometimes it hurts to move. Walking from the front door to the car seems like an impossible task because every step sends unbearable pain to my abdomen. Like I said, a flare can come on at any time, usually with little warning. During a bad flare, I have anxiety about leaving the house. I panic about how long until I get where I am going and will there be a toilet there. I worry about how close I will be to a bathroom and the ease of accessing it. Bless the creator of Xanax.
This also doesn't always make dating easy, especially when I was younger. Imagine trying to explain to a 25 year old male that you can't always have sex because some days it hurts too much but then other days you are completely fine to bone away. They will think you are making it up or that it is in your head.
I've tried having this conversation at all stages of dating... near the beginning just to get it on the table, near the time where it might get sexual, after it gets sexual. I found that a lot of guys don't want to deal with it. I've been told I have too many problems. I've had a few never call me back after "the talk." (But I also don't have a great track record of picking decent guys.) The positive that I can say is that it has gotten easier as I've gotten older because 1- I just don't give a fuck about talking about it and will answer any questions without hesitation, no matter how weird or awkward they think they are. Sometimes I provide the information preemptively. 2- Guys have matured, somewhat, and don't run at the first sign of a problem. And they have learned that P in the V isn't the only way to get things done.
But, most of you would never know I deal with these things. You don't see it on the outside on a good day. And you might not see me at all on a bad day. Thankfully, the good days have been vastly out numbering the bad days, but you never know when the tables can turn.
I do still try to live life on my terms and not let my conditions stop me from doing the things I want to do. Sometimes I just have to take extra precautions, such as taking extra medication, doing additional stretches, or hiding a thermaheat pad under my clothes. I will say, I am not positive all of the time about my chronic pain. I am human. I spent many, many days in the begining crying behind closed doors that I would never be "normal" and that I would never find someone who would want to be with me because of my problems (note: I am still single, but it's my choice at the moment.) There are still days that I lay on the floor and cry about the hand that I've been dealt. But, the truth is, we all have our burdens and thankfully mine is manageable. I try to remind myself of that when I'm having a bad day. I also know that I will be okay. And if I'm not okay today, there is always tomorrow.
If you do have any questions about anything I wrote about, I'm very open. I'll answer anything (well, within reason).
Yes, Grandma. I really don't care who knows my personal business as long as someone walks away educated.
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