#vestibulectomy

A lot of people grow up with a very specific image in mind when they imagine “the talk,” aka the first time they hear about sex from their parents. For me, it means something completely different-- a curse, actually, one that I can’t escape, one that I have no clue who bestowed it upon me except perhaps faulty genetics. 

For me, “the talk,” is having to explain to yet another man my eternal, un-asked for dilemma: I can’t have penetrative sex. You see, I was born with congenital neuroproliferative vestibulodynia-- in layman’s terms, that means that from birth, I’ve had a constant overgrowth of nerve endings in the vestibule portion of my vagina. And while some people probably hear that and think, “Nice! Sounds like a great time!” It’s anything but. When the nervous system receives an overload of feedback, it can actually feel excruciating. The first time I described it to my mother as a 13 year old attempting to insert a tampon, I used words like, “knives,” “burning” “fire,” and “acid.” To make matters worse, I developed secondary vaginismus as a result of the pain; to fear pain means to guard via muscular intervention, and to guard means to be in further pain. Years of nortriptylene, gabapentin, lidocaine, cymbalta, physical therapy, biofeedback, and “miracle cure ointments” that I don’t know how to spell couldn’t save me. In September of 2020, I had something called a vestibulectomy, in which a surgeon removes the vulvar vestibule and advances the elastic tissue of the vagina to essentially replace bad tissue with good tissue. While the surgery was somewhat successful and I can now proudly wear tampons, I find myself faced with the same burden as before... I still can’t have sex. I’m not sure what happened, exactly. A lot of vagina-havers come out of the surgical process pain-free. Alas, witches or God or faulty genes don’t remove a curse that easily. Last night, I had to give the talk again-- this time to a guy I really hit it off with several weeks ago.

“I know this is a really weird mood killer... But like, I just need to spit it out in case this is like a dealbreaker, and I hope it’s not weird.” 

“Oh come on, I doubt it, what is it?” He asked encouragingly.

(We had been really amping up the flirting the past several days. It was time.)

“So I have chronic pain.”

“Yeah?”

“Yeah.” And from there, I proceeded to tell him pretty much everything I just told you, except I did add in a spicy little, “There are other things I can do.” He listened quietly, giving an “uh huh,” and a nod every now and then. And yet, I could see it on his face-- the disappointment that I’ve become very familiar with throughout years of dating and being dumped or gradually un-touched. I’ll give him some slight credit; he tried masking it behind a, “I mean, that’s alright. Nobody’s perfect. We’re creative.”

I know he meant no harm by the “nobody’s perfect” line. He was trying to reassure me that maybe it was something that could be worked around. But as I laid in bed after our phone call, I couldn’t help but feel pretty burned by that comment. I’m fine just the way I am. I didn’t ask for this. This is not my fault. This is not a mistake I made and now must face consequences for. This is a weird fluke; the definition of “shit happens [in the womb].” 

The thing is, I want to be loved for everything I am, not despite everything I am. 

Hey everyone! First of all, I am so sorry about my extremely long absence from this blog. I originally created it to be a place where I could document my experiences with pelvic pain/painful intercourse and feel as though I had some sort of community who could relate to the things I was going through.

Life happens, and I needed a break from social media as I got married (yay!!!), coped with leaving a very toxic work environment, spent the summer in Guatemala, and started my masters program.

One of the biggest things that happened while I was away was I had surgery in January.

I had a vestibulectomy, which is essentially where the tissue around the vaginal opening is removed. I saw a doctor in a different city from me who works in specialized gynecology, and upon my first exam he noticed that the tissue around my vagina was very red and inflamed. This is something that often goes unnoticed and untreated by regular gynecologists. Vestibulodynia is either caused by excess hormones (usually the fault of birth control), or an autoimmune process.

After that tissue was removed it had to be biopsied. The results came back and showed that I have the latter– an auto immune disorder called lichen planus, which specifically targets that part of the body. The only way to fix it is through the surgery I had, along with medication in some cases.

It has been a long road to recovery– ointments, physical therapy, etc. However I am now able to have sex and it is so much easier. It isn’t still completely pain-free/uncomfortable, but I am confident that my body will get there one day (and soon).

This doctor literally changed my life and is one of the kindest people I have ever met. I would not be where I am right now without him, and I am absolutely grateful to him along with my pelvic floor physical therapist.

I will talk about all this in more detail in another post, but please send me a message if you have questions about my surgery or the process of getting diagnosed! This medical condition is more common than you might think!

I just had a vestibulectomy, so I wrote a blog post about how to prepare. It covers everything from what to tell your coworkers to what to buy to make sure you’re as prepared and comfortable as possible after surgery.

March 9, 2016

It’s been about a month since my first post. After my first visit, my pelvic pain doctor prescribed me two creams: Lidocaine and a hormone cream. The Lidocaine didn’t really seem to work, so I’ve only used it two or three times. The hormone cream actually did help. I was in constant pain and taking Ibuprofen multiple times a day even though it barely helped. I started using the hormone cream twice a day, and it helped so much with this every day pain. After two weeks of using it, I saw my doctor again. He was extremely surprised to hear that I was having positive results from this cream. First of all, I think he was shocked that the very first thing he tried with me actually worked. I got the impression that usually there’s a lot of trial and error with this condition before finding anything that actually helps. Second, he was surprised because this hormone cream was not supposed to provide any kind of immediate relief. It was supposed to gradually repair the tissue, but it takes around 3 months for it it to actually work.

This information was very interesting to my doctor, but I was kind of confused by his explanation. It was something along the lines of having this cream, or any cream for that matter, inserted up in there was blocking whatever it is that’s causing my pain. He thought maybe I have some type of bacteria or chemical or something that’s irritating me or not being properly broken down by my body. Like I said, he kind of lost me with his explanation, so I’m sure my explanation doesn’t make much sense either. He prescribed a new cream that I inserted every night for 7 nights and then every 3 nights. This cream was meant to deal with unwanted bacteria and he told me that unlike with the hormone cream, this time I should feel immediate results. I didn’t really feel any difference, but I’ve been using it as directed.

Today is Wednesday. Last Saturday I drank a lot of alcohol, specifically a lot of liquor. Back in January there was that other night when I drank a lot of liquor, and the very next day my constant pain began. I think there must be a link between heavily drinking/liquor and my pelvic pain, because ever since Sunday things have been bad again. Throughout the work day I’m usually fine, but the pain gets worse as the day goes on. It feel like a terrible ache. I used the bacteria cream on Monday night for the first time since the pain returned, and for the first time I could FEEL that cream doing some kind of work inside. It was pretty uncomfortable, but almost in a good way. It definitely confirmed in my head at least that I wasn’t crazy and that something during that day of heavy drinking triggered something to go wrong down there.

I have four more weeks until my next appointment with the pelvic pain doctor. Living with this constant pain is terrible, and I’m still at a point where I would prefer to just get the vestibulectomy if that’s what’s going to be the most effective treatment. These creams may help with the pain, but they’re not a cure. My doctor pushed the idea of surgery at my first visit, but not so much at the second. He was so pleased that I was having good results with the hormone cream because he told me he really wasn’t expecting it. I think that since something is working, he is less likely to recommend the surgery. When I go back in four weeks I’m going to tell him that I’m still in constant pain and very unhappy and that I would really like to go through with the surgery if he still feels as if it’s my best chance at completely getting over this.

Also, I saw my urologist since my last post. We decided that all along I’ve probably been mistaking my vaginal pain for bladder pain. I stopped taking the ridiculously expensive bladder pills that I was on. I definitely still get burning when I drink coffee, and I’m sure whenever I have sex again I will get a UTI, but for now my bladder is not the issue.

February 7, 2016

I’m creating this tumblr account to document my struggle with vestibulodynia, and to hopefully be able to look back some day to see how far I’ve come.

I’m 26 years old and I’ve been having pelvic pain issues since I was 21. I’m not entirely sure if my pain issues are something I’ve had my entire life, or if they were brought on by something later in life. I just know that ever since I’ve been sexually active, sex has been extremely painful. I also have severe pain inserting tampons and during exams at the gynecologist.

It started when I was 21 and with a guy who I dated for about 2 and a half years. We had a pretty good relationship overall, but our sex life was a disaster. He would have had sex with me 10 times a day if I allowed it, while I would have preferred to never EVER have sex. It hurt so badly that I would often end up in tears when we tried. The most intense pain would always happen right at the beginning and after about 30 seconds things would get a little bit better. It never felt good, but I could tolerate it just barely. I still never wanted to do it and it was the cause of many fights. Understandably, he felt pretty hurt that I never initiated having sex with him. He knew that it caused me pain, but he still wanted to do it. All the time. While I was dating him I saw about 4 different gynecologists to try to figure out why I was experiencing the pain, but I never got any answers. One doctor told me to find a boy with a tiny penis and another wanted me to try inserting a hormonal cream up in there, but none of this was helpful. We eventually broke up. He left me for another girl - one of his co-workers. Our relationship definitely had other issues, but there’s no way my lack of interest in sex didn’t have an impact on him leaving me for another girl, whose vagina actually worked normally.

That relationship ended over two years ago, and since then I’ve been quite single. I’ve had a handful failed, short-term relationships, but they usually only last a few months. My inability to have a normal sex life is always a factor.

About a year ago I had my yearly gynecologist appointment. I saw a new doctor and she was extremely concerned about the pain I experienced during the exam. She recommended that I see a pelvic floor specialist who did physical therapy. I saw this doctor about 10 times over the course of 2 months. She thought my vaginal muscles were tight and used dilators to try to stretch out the muscles. This really didn’t do any good. I didn’t finish the treatment because it was expensive and I didn’t feel like it was working.

Within the last year, I’ve had a second pelvic issue start to occur. In the past year I’ve had sex with three guys a total of about 10 times. I’ve gotten a UTI just about every single time I’ve had sex in the last year. I was prescribed an antibiotic that I can take each time I have sex to prevent the UTIs. They work, and the only times I’ve had sex in the past year without getting a UTI were when I took one of the antibiotics, but I hate the idea of being reliant on those pills. Each time I dated a new guy I would get hopeful that maybe with this guy things would be different. But with all three guys I got UTIs. The sex was still painful each time, but that was something I had learned to live with. Usually the pain would go away after the first 30 seconds or so and I could tolerate it. Getting a UTI after having sex each time was just another reason for me to avoid sex. Along with these UTIs, I also started having burning with urination whenever I wasn’t well-hydrated. If i drank nothing but coffee in the morning before peeing, it would always burn. My urologist advised me to avoid coffee and I haven’t had it in about 2-3 months now. I haven’t had any positive results since cutting it out, but I haven’t started drinking it again out of fear that adding it back in could make things even worse.

About a month ago my third pelvic issue started. I went out one Saturday night and drank more than I usually do. The next day while on a walk I started having pretty severe pelvic pain. It wasn’t the usual UTI pain, and I hadn’t had sex in about a month, but I still decided to walk myself straight to the Target clinic to get tested. I wasn’t surprised when the result was negative, but the pain I had was really unsettling. In the past, any pain of this nature was always a result of sex. I thought this might be bladder pain, so I saw my urologist. She didn’t have a good answer, other than telling me to cut out alcohol. First, coffee, now alcohol?! I can’t have wine?! Ugh. Again, I can’t say that cutting out alcohol has resulted in anything positive, but I’m still avoiding it because I don’t want to make my pain any worse. Since that day, this pain has not gone away. It’s hard for me to tell where this pain is coming from, but it’s always there. It’s only like a 1 out of 10 most of the time, so it could be a lot worse. The pain is usually more severe at night, but this is likely because I’m laying in bed focusing on it and nothing else. I could live with painful sex and I could live with taking an antibiotic each time I had sex to avoid UTIs. I can NOT live with this constant pain. Even though the pain isn’t too severe, it’s always there and it’s driving me crazy.

At the suggestion of my urologist, last week I saw a pelvic pain specialist. For the first time in over 5 years of pain I was FINALLY diagnosed. I have a condition called vestibulodynia, which means that I experience severe pain near the opening of my vagina whenever it’s touched. The tissues are red and damaged. THIS MAKES SO MUCH SENSE. I can’t figure out why it took so many years and so many doctors to diagnose me. When you google this condition, it’s literally exactly what I’ve been trying to explain to doctors all this time. He said that my muscles and nerves actually seem very normal. I just have a textbook case of vestibulodynia, which affects just the tissue in the vestibule of my vagina. I’m fortunate actually that he’s able to pinpoint exactly where my pain is coming from.

So the good news - I know what’s wrong with me. The bad news - the doctor says that surgery is the most effective way to treat this. Since my doctor appointment I’ve done a ton of research on this condition and the surgery, which is called a vestibulectomy. They basically remove the damaged, painful tissues inside the vagina, and then to replace that tissue they pull other tissue down from further inside the vagina and stitch it up so that the opening of the vagina is now lined with tissue that doesn’t experience pain. Sounds lovely, right? I’m seeing this doctor again in two and a half weeks to continue discussing the surgery and my options. The doctor said that surgery is usually a very last resort, and he almost never suggests it as an option right off the bat. However, after listening to my story he thinks that I’m a candidate for the surgery due to the fact that I’ve always had pain with sex and the fact that it’s been going on for so long. In the mean time, he prescribed two creams for me to try. One is a hormonal cream that I’ll apply twice a day in an effort to restore the damaged tissue. The other is Lidocaine, which is a numbing cream. I’ll try these, but I’m not too optimistic. Sitting here now, with this never-ending pain, really makes me feel like I should attack this aggressively with surgery. From what I’ve read online, the recovery sounds brutal and the entire procedure is risky because not everyone has great results, but at this point I think it’s something I need to do.

So that’s my pelvic pain story. I hope that with this new diagnosis and a doctor who actually believes that he knows how to help me, this chapter of constant pain will soon come to an end. If anyone is reading this who has experienced similar issues, I would love to hear your story. My friends and family know what I’ve been going through, but they don’t really understand how difficult it’s been. If anyone is reading this who has had a vestubulectomy, I am VERY interested in hearing about how it went for you and if you’re glad that you went through with it.