An 8 year and counting journey of frustration, hopelessness, diagnosis and (fingers crossed) recovery of dyspareunia.

Let’s go back to 2009 when I was a blissfully unaware 19 year old. Back then the only thing hard about sex was “your place or mine?” It was just so easy and fun, it could be spontaneous and care free (for the most part). I was in the dating scene and enjoying myself, but always looking for my Mr. Right. Through these adventures I had sex with 5 male partners, all for the most part pain free normal sex. I then met my now husband and just like in the past I engaged in a normal sexual relationship.

I have been asked several times by several doctors when my sexual pain started and what did I do differently to cause it to start- and my answer is literally a blank. The only time stamp I have to pinpoint the change is my husband and mines first Valentine’s Day together, 5 months into our relationship. I know this because I had bought us lube as part of my husband’s gift. Partly as a cheeky kinky gift, but mostly because we desperately needed it. Somewhere along the way sex had become very uncomfortable, my vagina was terribly tight during sex and I would always bleed afterwards. It almost felt as if my husband’s penis had a blade on the underside of it. I assumed lube would rectify this, no problem. Wrong. After sex I would sit on the toilet crying wondering “what the f**ks wrong with me?!” as I wiped blood from my swollen, sore vagina. I was very ashamed of this and went months without consulting my doctor—don’t do that!! Do not be ashamed! Seek help and talk to your doctor.

Finally I had had enough of not knowing and sucked it up and booked an appointment with my doctor. She was concerned and immediately sent me to the lab for testing-convinced I could have Chlamydia. I was terrified. How could I have Chlamydia?! My boyfriend and I were exclusive, we used condoms, this kind of stuff just doesn’t happen to me (oh my naive 20 year old self! Knowing what I know now I would have killed for that simple of a diagnosis!) so needless to say I sat in the waiting room, bawling, awaiting my turn to pee into a cup.

Diagnosis?? You do not have Chlamydia! I was obviously relieved but…. now what? My doctor seemed a little stumped, she did a pelvic exam and found nothing really out of the ordinary, perhaps a more prominent pelvic bone then most but still no reason to have bleeding during sex! She put in a request for me to meet with a gynecologist. Something that in my area can take up to 6 months to even get a consult. But at this point I was probably nearing almost a year of painful sex so what’s another 6 months.

The day came, to speed up the process I had chosen a gynecologist a couple of hours from where I live. He was very shocked that a woman of my age would struggle with such a condition. One that he admittedly didn’t have a lot of experience in. Again, like before, I stripped down and had a pelvic exam. I always made sure that my boyfriend and I had sex the night before the visit so that there would be evidence of the trauma. He noted the quarter inch slit I had on the bottom section of my vaginal opening. If you were to think of the vaginal opening as a clock I had a significant tear at the 6. So there’s my problem I have a cut in my vagina, or a fissure as they call it. But still no idea why. I saw this gynecologist on 3 separate occasions, then he chose to refer me to a more specialized gynecologist who had more experience. I got the impression that this particular gyno does a lot of deliveries and hysterectomies and not too much in the realm of sexual pain.

A few more months go by and I finally meet with the “specialized” gynecologist who just so happens to operate in the same city I live in. I do my usual night before sex to ensure the fissure is clearly visible. I do the usual strip down, legs spread once I’m in the office. He takes note of the tear in my vagina but also notes that this tear might be a result of my hymen not breaking properly. I found this theory a little hard to believe because my current boyfriend is my 6^th sexual partner, surely my hymen would be fully broken by now?! Or I would have had this issue with my other partners. He tells me “no sex for 3 weeks then come and see me” I follow his instructions and meet with him in 3 weeks. The fissure is still present and angry as ever. “Don’t have sex for 6 weeks and come and see me.” Again I return and it’s still looking the same. “Let’s try 12 weeks and go from there.” Now not only have I had little to no improvement in my condition, my boyfriend and I have had the struggle of an abstinent relationship, and my fissure has now started to create scar tissue (YAY!). With no improvement my gyno suggested he take a biopsy of the area to ensure the area that was tearing was composed of normal healthy tissue. This would involve a local anesthetic to the area and a small section of the tissue removed to be tested. The injection of anesthetic was obviously uncomfortable but tolerable and once the freezing set in I felt nothing else, the section that was removed was so minuscule that it didn’t require any stitches. A mustard colored substance was applied to stop the bleeding and that was it. I took it easy for a day or two and awaited the results. It surprisingly came back that I had eczema on my vagina- news to me! Eczema is not something new to me but I had never experienced any eczema like symptoms in this area, but I was happy to have a diagnosis none the less! A round of cortisone cream later I should be healed and back to great pain free sex! HA! Nope. There is maybe a slight, slight improvement but not much. My gyno later prescribed a numbing cream to apply pre sex. I will admit it helped with the pain but the blood and tear were always still present. At this point I had been visiting this gyno for almost a year and a half and I think he to admitted defeat. His Diagnosis: I am too small, my husband is too big, and I will just have to wait until I have a baby, then my vagina will get stretched out and at that point I will resume a normal sex life. As a naive 22 year old I took his word as truth and just suffered for 5 more years in this manner.

Over those 5 years we had become accustomed to what our “normal sex life” was- lube, lots and lots and lots of lube, foreplay, lots and lots of foreplay, and what I would consider less sex than the average 20 something couple. Partly because I needed to mentally prep myself for the endeavor but I also had to let my vagina heal post sex. It can often be uncomfortable to even sit in a chair the day after a night of sex. So these 5 years we have kind of tweaked and perfected how we have sex, but a nasty side effect has come of this. The physical, painful consequence of sex is something I have gotten used to and just “grinned and barred it” but the mental side of things (which is very important for women during sex) started to work against me. My brain was literally telling me to clamp my thighs shut and tighten every muscle in my pelvic floor to prevent this pain from happening. This was hard for my now husband (ah the wedding night was no exception, sexual pain does not take a holiday!) to continue to push through when I’m laying there stiff as a board and wiggling away in fear. The only way I can explain it is imagine your body is braced and tensed for impact, while feeling the effects of a panic attack. My entire body, mentally and physically were fighting against it. Sex is probably one of the most natural things in the world, it’s meant to be fun and exciting and naughty and I found it terrifying, painful and just so much work.

I started smoking marijuana just as a kind of unrelated later in life thing and found it actually worked wonders on my mental state during sex. While high I could actually fully enjoy sex and let myself go. It was very exciting to find something that allowed me to enjoy sex again but I didn’t want to rely on being high every time we wanted to make love. It’s effects are temporary as the mind is an incredibly powerful thing and even while under the influence I could hear and feel my conscience coming up and telling me “this will hurt” so the weed was merely a band aid on this gaping wound.

Finally in October of 2017 I had a breakthrough, while on an incredibly romantic trip with my husband I found myself about to have sex and I just couldn’t. My vagina was not having it and it was basically impossible. Embarrassed and ashamed I gave my husband oral, so that he could at least be satisfied, and when he went to shower I just laid in the bed and bawled. I bawled for my husband, he shouldn’t have to put up with a woman like me, I bawled for myself, hating my vagina and my body for betraying me, and I bawled for my future, I want to have a normal vagina but I am not ready to have a baby. That moment by myself crying my eyes out is what I needed. In frustration I grabbed my phone and Googled sex therapists in my area, surely they could help my mental state regarding this. I found one that I thought I would feel comfortable talking to and emailed her requesting an appointment. That is the best thing I have ever done for myself!

Almost exactly one month later I had my first meeting with *Tracy, a psychologist specializing in sexual pain. I was partly nervous but also incredibly excited, other than my husband, my mom and a few and I mean a few close friends I hadn’t told anyone about my condition. Having a condition that affects your sex life is a very shameful thing and although I wanted to shout from the rooftops what I was going through, I kept it to myself for fear of being judged. My hour with Tracy flew by. I laughed, I cried, I bawled! But mostly I became informed. She was able to tell me real facts about my condition and told me I was not alone. The majority of her patients are just like me. I can’t explain to you how gratifying it is to find out you are not alone in this struggle but then on another note how devastating it is to find out that so many women, and men, are going through the same physical and mental torment I am.

She informed me that there is absolutely no reason I should have to suffer like this until I have a baby, and for some people that doesn’t even fix the issue. She explained that unfortunately not all gynecologists are familiar with sexual pain but there are a few in my home city who do. She also informed me that there are physiotherapists trained in sexual pain and dysfunction. I just sat in awe! I had struggled with this for over 7 years and had absolutely no idea that these people even existed! As soon as I left the appointment I did my homework, I contacted my doctor to make an appointment for a referral to one of these specialized gynecologists and booked a consultation with the physiotherapist. No surprise that both of these women had a bit of a waiting list but I didn’t mind. When the day came for my first physio appointment I would be lying to say I wasn’t nervous. By this point it doesn’t bother me in the least to take my pants down and spread my legs, I was familiar with this song and dance. But I knew physio was going to be a tad more invasive and hands on. The first half of the appointment was a verbal account of my past, not just my sexual past but even further back. *Lisa told me there could be something, even something that seemed insignificant in my past that could explain my issue, such as a car accident or falling of a bike. Other than one time at 14 when I “canned” myself on a picture frame nothing else came to mind.  She showed me a book that I could purchase from the clinic that I could find helpful called “When Sex Hurts”, I’ll get into that a little more later. After much discussion it came time for the physical exam. Lisa was shocked to find out I was completely bare (I have always preferred the “Brazilian” look) but also very surprised with how underdeveloped my genitalia was. I was shocked as well! I have definitely seen other vaginas due to my job and here and there in porn and always thought I had a comparable or even dare say it more desirable vagina than most. She claimed that I had the tell tale vagina of someone on birth control for an extended period of time. She was correct, I have been on birth control on and off for nearly 11 years. But I have also had numerous Pap smears and my fair share of pelvic exams and not once been told any of this!? Of course the exam was as I suspected, quite “hands on” but very informative and worth the moments of discomfort. She informed me my vagina was very tight and my pudendal nerve was in a constant state of spasm. She did a few minor adjustments and sent me on my way with a few exercises to do at home and to book future appointments.  She, like Tracy, was such a relief to talk to. Here are two women who finally understand what I am going through and can help me!

As soon as I got home I stated reading “When Sex Hurts”, I would have polished it off in 2 days but I chose to wait to finish the last chapter “When Sex Is Good” until I myself am at a stage of regular, pain free sex. This book has been the most helpful, informative, reassuring piece of literature I have ever read. There are moments while reading it that were just so personal, that I may as well have been reading about myself. There is a particular section in this book that talks about the connection between sexual pain and birth control, much like Lisa was explaining to me, that I found incredibly informative. It suggested going and having a blood test to check on your hormones that the birth control could be inhibiting. These specific hormones are what creates and maintains healthy genital tissue. Literally mid chapter I called my doctor and requested to be sent for blood work. The book told me exactly what hormones to have checked so it couldn’t have been easier.

Finally March 26^th rolled around, the day I finally get to meet with my specialized gynecologist. Once again I was more excited than nervous for my appointment. Tracy and Lisa had given me so much hope that I would finish this journey with a positive result. Once again this woman was someone I could easily talk to and was flabbergasted at my previous diagnosis of “just have a baby”. Once again I rattled off my history, explained how I came to find her, that I had read the book and taken the liberty to have my blood checked. I informed her that I never heard anything back and assumed that must have meant my levels were in the normal range. She actually had the ability to bring it up in her system and was able to go through them with me. They were not normal. Normal for someone on birth control for the extent that I have been, but not normal to support healthy genital tissue. For example Estradiol (a major hormone produced in the ovaries) has a normal range of 70-1950 depending on the day of your cycle- mine is at less than 30. So definitely number one- get off birth control. I wish that my GP could have warned me of this at 19 but unfortunately this topic does not seem to be well known for most doctors. We then proceeded with a pelvic exam, this was the most eye opening for me. Within moments she was able to tell me that I have the genitalia of a 10 year old. A 10 year old. The tissue of my labia minora is shiny, tight and red and my clitoris is so undeveloped it’s almost missing. She says it’s a no brainer I have painful sex my vagina is literally in agony from lack of hormones. Tissue that should be plump and lubricated is taunt and shiny with dehydration. But the good news (the best news!) it is reversible. I am prescribed a cream that contains estrogen and testosterone to apply to the area to help stimulate my own natural hormone production. But now for my diagnosis (this has only been 8+ years in the making!) Vaginismus and Provoked Vestibulodynia (PVD). Vaginismus is a condition that affects a woman’s ability to engage in vaginal penetration, this is a result of an involuntary vaginal muscle spasm that makes any vaginal penetration painful or impossible. PVD refers to a pain sensation felt in the entrance of the vagina known as the vestibule, which contains glands that provide vaginal lubrication during sexual arousal.

I feel such relief finally having a diagnosis, and I seem to have a curable condition! Currently I am applying the cream concoction and eagerly waiting until May to meet with my specialized gynecologist for a follow up! I am excited and feeling optimistic about my sexual future! My journey has been a long one and it’s still not quite over, but if there is something you could learn from experience let it be this:

1. Do not hesitate to speak to your doctor if you are experiencing sexual pain. And if they don’t seem to listen or understand request to be seen by a specialist. Do not give up until you see someone who believes and understands your pain.
2. Make sure you have a partner who supports you! I feel so unbelievably blessed to have the husband I have, he is so patient and understanding and when the emotional effects take their toll you need a supportive partner.
3. Do not be ashamed! You are not alone in this! Talk about your condition with people you feel comfortable confiding in. Or do like me and create a voice on an anonymous stage such as social media. I live in a small town so am not quite ready to release my name, but love being able to express myself on such a large platform where I remain anonymous.
4. Seek alternative medical options. Prior to this I was very anti-weed and didn’t believe in psychologists. Sometimes you need to be in the fetal position crying to have moments of clarity to try something different. I should note I would never encourage someone to indulge in an illegal substance but if you live in an area where it is legal give it a try.
5. Buy the book. Read the book. Worship the book! When Sex Hurts is written by Andrew Goldstein, Caroline Pukall, and Irwin Goldstein- all of whom are gynecologists. It goes through almost every possible reason as to why you could be suffering with genital pain and is written in an easy to read format. I cannot say enough good things about it!!! Do yourself the biggest favor and buy it!
6. Beware of birth control! Obviously if you do not want an unexpected pregnancy find an option that is right for you but research it!! I can say with almost 100% certainty that if I had never been on birth control I would not have this condition. I do not regret going on birth control, it was my choice and it has been effective in its pursuit to stop me from getting pregnant, but I do regret not taking the time to look into the side effects. It also angers me that my doctor did not educate me on this, nor did they seem educated in it themselves.
7. Lastly, know that dyspareunia (painful sex) can happen to anyone at anytime. And sometimes you may never know why it started. It can be so incredibly frustrating and you may feel helpless but just know that for most cases there is a light at the end of the tunnel and you must keep going.

-E

If you would like to follow “E” here is her Instagram @onceuponavagina

Thank you to @onceuponavagina for sharing her story. If you would like to submit a guest post about your pelvic pain, please email tara@vuvatech.com

Tara Langdale-Schmidt is the Founder of VuVa Magentic Dilators and she helps women all over the world suffering from pelvic pain conditions.