About Vulvodynia Siren

I am a woman with vulvodynia - Vulvar Vestibulitis Syndrome (VVS) who has chosen surgery in response to my condition. vulvodyniasiren@gmail.com

4 Years Post Vestibulectomy

It’s been almost 4 years since I’ve had a vestibulectomy. My daughter is almost 2 years old! Time has been moving very fast but I wanted to add a quick update.

My husband and I haven’t had sex in over 6 months. Keeping up with our (now) toddler has been exhausting. But we also are both emotionally exhausted dealing with the “painful sex issue”. My husband has been through an ordeal as well and I find that he is no longer interested in sex. I can’t blame him. I’ve almost been happy that he’s lost interest.

Until today…

We had a lovely and somewhat awkward tumble during a nap break after I pretty much cornered him! And you know what? I actually had very little pain and a lot of fun! It made me reflect on everything we’ve been through and how it has changed us.

I’ve recently been to see a new doctor who seems to have taken more of an interest in my vulvar discomfort. So I still struggle but not like I used to before the surgery. I hope that maybe today is the start of a more regular sex life for us. I’m so grateful to have such a brave, amazing husband. It was amazing to connect with him physically. We’ve both been through so much, I feel like we need to get to know each other again…



3 Years Post Vestibulectomy

Our baby is now a toddler. 15 months old.

Last time I posted she was only three months old. It’s been a whirlwind. So much has happened I’m overwhelmed trying to think of what to write. I think it’s why I haven’t posted in so long. I don’t even know what to say.

It’s been… 3 years since I had a full vestibulectomy. When I look back, I would do it all over again because now I have my beautiful daughter. I’ve been struggling lately because I’m having a lot of vulvar problems again and I feel so overwhelmed, lost and exhausted.

So a few months ago I had a real itchy bump just above my urethra. Eventually the itching stopped but the area around my urethra remains very red and burning. The area extends to the tip of my clitoris and can be quite uncomfortable. My condition originally was at the bottom of my vaginal opening. As you can imagine I’ve very frustrated.

I started sitz baths with baking soda as I thought perhaps my condition was related to Cytolytic Vaginosis. The sitz baths do sooth the area but it doesn’t cure anything. I started using steroid cream as my pathology report from the vestibulectomy surgery said it was similar (but not diagnosed as) lichen sclerosis. That too initially seemed to help a bit. In fact I was feeling quite encouraged for about a week or two. Especially when I ovulate, I was able to have intercourse with manageable discomfort. However, the last week things have gotten really bed.

My gynecologist won’ address the issue basically saying it’s not within his scope but there is no other doctors to see. In the meantime, I try hard to avoid sugar and gluten, continue the sitz baths and try to come up with a new plan.

I’ve been thinking about returning to the states for treatment but I’ve been entertaining the thought of having one more baby. Time is running out as I will be 38 years old soon and now that I stay at home and don’t get a paycheck, finances are especially tight.

I have no idea what is next.

I have Vulvodynia… and a baby!

It’s been three months since we welcomed our little daughter into the world. She arrived a month early giving us a bit of a scare but she is strong and healthy now, having more than doubled her birth weight!

I have been thinking about writing this blog post for sometime now. I’ve started it several times only to be cut short by my baby’s cries for attention. I have so much I want to share that I’ve been overwhelmed to even begin writing.

March 2015, the month before my daughter arrived marked two years since my vestibulectomy surgery in the states. Even with that amount of time passing, I opted to have a C-Section as I did not want to cause further damage to my vulva. My Canadian doctor recommended it before I brought it up. It was a difficult decision, aside from the obvious reasons of wanting to have a vaginal delivery, I heard there could be benefits to vaginal delivery for vulvar pain patients . In the end, I couldn’t face taking anymore trauma to that area. The doctor also said flat out that he wasn’t going to be dealing with any kind of vulvar condition. At my six-week check up after baby arrived, my doctor said he would be referring me to a clinic in Vancouver. It’s been two months and I haven’t heard anything yet but truthfully, how would I have the time and money with a new baby to get myself to Vancouver anyway?

Pregnancy is an interesting time to have vestibulitis, vulvodynia or any kind of vulvar pain condition. Doctors prescribe medication. That is what they do. And when you’re pregnant and can’t take medication, you can’t be treated. Obviously, the wellness of baby comes first but I found it frustrating that doctors had nothing to do or say about what was happening with my vulva. The truth is, pregnant women may still want to have sex!

Sex while pregnant can be awkward. Working with “the bump” didn’t go so smoothly for us. So that issue on top of vulvar pain really shut down any version of a sex life for my husband and I during most of the pregnancy. I think for my husband, causing me pain during sex has been quite traumatic for him. Even though we communicate well, it’s just not a pleasant experience to cause pain to someone you intend to create pleasure for. Now, when that same person is pregnant and a man’s protective instincts are in overdrive? It just made things more complicated. My husband even worried if the pain I felt might somehow make an impact on the baby, he wondered if the baby would be afraid of him or associate him with causing pain. My poor, sweet husband!

I still don’t regret having the surgery but the truth is it didn’t cure everything. The skin has become inflamed again but not as bad as it once was. When I look at pictures right after the surgery I can see healthy pink skin. Now those same areas are inflamed again. So my journey to pain free sex continues.

Last week, my husband and I attempted sex for the first time after baby. Let me tell you… even with a C-section, after everything your body has been through and the sleep deprivation… that alone is challenging enough to overcome! I had no idea how much pain I would feel with intercourse as my body felt so different, my tummy was tender still from the incision, the texture of my breast tissue has changed but my husband and I really needed to connect.

It had been months since we’ve been together sexually. In some ways, this was beneficial because I forgot about what the pain felt like. I took an Ativan (anxiety medication) and honestly, it all went pretty well!

Because of the visual changes to my vulva after the surgery, I’m not interested in oral sex like I used to be. That, and the threat of baby waking up ensured that it was a “no fuss” encounter! But all and all it went fairly well. I’m not sure how much my hormones are part of my condition (I was diagnosed with hormone mediated vestibulitus) and have a thyroid condition. To keep things simple, I don’t take hormone based birth control. We are both fairly discouraged to have to go back to using condoms for birth control but that is currently our only option. It’s really just something else that deters us from having sex.

We are using non-latex condoms. Not that I have a latex allergy but we are trying to limit any kind of potential irritant. I purchased a PH balanced lubricant and have been taking baking soda baths, which seem to help the vulvar burning from time to time.

About two months ago I came across an interesting condition that I’d never heard about that seemed to fit my symptoms. It’s called Cytolytic Vaginosis. Basically, it is excessive growth of the useful bacteria (lactobacillus) around the vulva and vaginal area. I have taken so much medication for yeast over the years as initially I thought I was having a really stubborn yeast infection. Further to this, I frequently consumed probiotics to help fight yeast and have done so for years. It occurred to me that perhaps I was having the opposite of a yeast infection! Excessive growth of lactobacillus bacteria in the vaginal area can drop the bodies PH levels. When too much lactic acid is being produced in irritates the vaginal lining but mimics vulvovaginal candidiasis.

Currently, I am self-treating for Cytolytic Vaginosis. I also have an appointment with a dermatologist to further explore treatment options for Lichen Planus (or Sclerosis). After the vestibulectomy surgery, I was provided with a pathology report that said the tissue removed looked similar to Lichen Planus but this observation was “non diagnostic”. I found a study about successful treatment of Lichen Sclerosus with something called Tacrolimus so I’m hoping to find out more about this medication at the appointment. I will continue to update you!

A Story From A Different Post Vestibulectomy Patient: The Big One Year Update

Maybe It Won't Be That Bad: The Story Of My Vulvar Vestibulectomy

Hi Everyone!

I’ve been waiting for my one year anniversary to post about some of the things that have been happening.  I’ll start with what has happened since my last post about my unsuccessful drunk sex with a rando.

The Good:

After that unsuccessful attempt, I started up with the dilators again in hopes that they would help.  After a couple short weeks using the dilators, I actually had pain free sex that lasted longer than 10 seconds (the length of my last pain free event).  The sex was probably no longer than four minutes, so who knows if the pain would have started had it gone on for longer.

The Bad:

After that I was feeling pretty confident!  I must be cured right?  Wrong…  I stopped using the dilators after that guy, because I had little motivation.  About a month later I reunited with an old friend.  This was…

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A Story From A Different Post Vestibulectomy Patient: Post-Vestibulectomy Week 2…

Silent all these years...

So the first 2 weeks post-op were not nearly as bad as I had imagined they would be. The worst pain I ever felt was during days 4-6 and even then it was manageable with rest and painkillers. Day 7 I went to a luncheon with my boyfriend through his martial arts company and realized that I still was unable to sit. Luckily it was an informal buffet setting so I was able to kneel on one leg on a chair and eat and then stand the rest of the time. Day 7 was the last day that I took any painkillers as the pain was becoming insignificant at that point. Week 2 I started working again since I’m allowed to work from home. Sitting on a couch or soft surface was doable as long as I was reclined slightly. Day 14 I actually made it to the office and…

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2 Years Post Vestibulectomy AND 8 Months Pregnant !

Yesterday was a very special day. It was exactly two years since I’ve had vestibulectomy surgery! I am also in my 8th month of pregnancy and have been feeling very reflective on where this vulvodynia journey has taken me.

First of all, I’d like to apologize for not providing more regular updates. I have reached a point where I am trying to move forward with my life and not be so defined by this condition (vulvodynia) which I still consider myself having despite the surgery. Obviously, my journey through pregnancy has also been very consuming! It’s been a very emotional time.

After two years, healing is considered “complete”. But I think, as a patient you can be left with scars of all kinds- physical, emotional, spiritual.

Sex is still uncomfortable for me but not nearly what it was like before the surgery. I currently don’t have a doctor involved with monitoring the vulvodynia. I think surgery in the states created a kind of stigma for me in Canada. I had my OBGYN who is providing my prenatal care basically say, “I don’t deal with this, get back on the plane”. This was devastating and it took a lot for me to move past it and continue seeing him. I had a “flare up” of burning pain in January and asked to be tested for yeast or examined to be sure there wasn’t some kind of infection that might harm the baby. This request was not well received by the doctor. So then and there I decided to get through the pregnancy, focus on getting the baby here healthy and not discuss my vulvar pain with my doctor. Kind of ridiculous but necessary for me to survive this process. Every year, I go to a chronic pain clinic but since they found out I was pregnant they are no longer involved. Everything is being deferred to the expertise of the baby doctor who… won’t treat or acknowledge the vulvodynia. The chronic pain doctor even said, “your pain will be easier to deal with because you have a baby to look forward to”. As if having a baby eliminated my own needs to feel well. So in summary, attempting to get medical support continues to be frustrating. I have been talking to my husband about paying for private medical care in Canada after the baby comes to try to get more help even though we are financially exhausted at this point and soon will have a baby to pay for!

I should be clear here, surgery was the right decision for me. Sex is a lot less painful and addressed the main problem which was tearing that would happen in the “fourchette” or 6 o’clock area of my vulva. The surgery made sex… and the baby I’m carrying possible. I have pain from scar tissue but I’ve also noticed some irritation in new spots developing. My motivation to continue seeking help comes from the fact that before I had tearing, I had chronic irritation in the same location. So I suspect, I have skin in certain areas that is deteriorating and may one day become new “tear spots” and I want to prevent that from happening. For now however, it’s all about baby.

Pregnancy With Vulvodynia/ Post Vestibulectomy

A year and a half after the surgery, my husband and I decided to try for a family. This was a very difficult decision for me as I wasn’t sure how I was feeling about starting a family after the outcome of the surgery. I felt I still had some healing to do but time was not on our side. I’m 36 and have watched some dear friends go through fertility issues which helped me understand that babies don’t always “just happen” and time was not on our side. Two weeks after we decided to try for a family… I was pregnant! We were shocked and felt incredibly fortunate. My husband and I had already been through so much. We had decided that if pregnancy didn’t happen we would not pursue fertility treatment. This was for emotional reasons, having already been through so much with the vestibulectomy and having witnessed our friends struggles with IVF. But also financial, the vestibulectomy cost us many thousands of dollars. I’ve also stopped working to allow myself to heal and manage my chronic stress. I can’t express how fortunate we felt to have gotten pregnant. Especially with my prior history of recurrent miscarriages and generally feeling like my body is still “off” somehow. I still wonder if part of the problem is related to my hypothyroid condition, other hormones, yeast/ leaky gut… I feel like my body still struggles. I still have fibromyalgia and chronic fatigue and it’s been very hard for me to trust my body could carry a baby.

The experience of being pregnant was not what I expected!

Here are some random observations. I think it some ways, pregnancy might have temporarily IMPROVED my vulvodynia! I’ve had less muscle pain (joint pain remains). I think this might be related to pregnancy hormones that relax the muscles so that has been a bonus! My labia is actually thicker and healthier, it looks about the same as it did when the doctor in the states gave be testosterone replacement… again, maybe pregnancy hormones? So this has started to make me consider getting more hormone support after the pregnancy. Also, I’ve been able to eat way more junk food with fewer consequences. I’ve indulged in all sorts of things I normally couldn’t tolerate. Very strange (and welcome)! Apparently this little baby likes cherry pie 😉 full of gluten and sugar!!! Something I could never get away with 9 months ago!

Having Sex While Pregnant, With Vulvodynia, Post Vestibulectomy

Honestly, sex gets weird when your pregnant. Your body is changing, your hormones are changing but add in vulvar issues and things get really complicated. My husband and I have been down to having sex about once a month. We’ve started to recognize that sex, while less painful than before the surgery causes us both a great deal of anxiety and it’s just easier to avoid. This was confusing especially in my second trimester when my sex drive INCREASED but we still weren’t having sex. We wanted to, but just felt like we couldn’t. We had to maneuver around the bump and deal with managing my pain during intercourse… it just became too much. My husband and I are in therapy and hope to further explore this topic as it’s been really hard for us to talk about. It’s been causing me a lot of concern because it’s not just about sex, it’s about intimacy. I find myself wishing there was more information and support for partners who go through vestibulectomy. I think my husband feels subconsciously that HE is the cause of my pain and in pregnancy is causing pain to the people he loves most, his wife and baby. I should note that before pregnancy and after the vestibulectomy we were having sex about 2-3 times per month and were working on increasing frequency but after the pregnancy about once a month was all we could manage… and it was frequently filled with stress. So obviously this is a big area we need to focus on. Even scarier is how much sex will we be having once the baby arrives?! Vestibulectomy changed the way my vulva looked, pregnancy changed the way my body looked and none of it makes me feel better about myself. I suspect my future posts will focus a lot on this topic. For now. Baby is coming in exactly 1 month. If it’s one thing vulvodyina taught me, it’s to take things one day at a time so that’s what we will do.

Having A Baby After Vestibulectomy

My husband and I have decided to have a c-section. We have heard that vaginal birth can be a good thing if you’ve had a vestibulectomy as it will stretch the remaining scar tissue. However for me, I feel like I’ve experienced enough trauma to that area and am not confident any further damage will be cared for by doctors here in Canada. Generally I feel when I complain of any pain issues the response is “of course your vulva hurts you’ve had a vestibulectomy”. From surgery, the pathology test on the skin they removed came back as “non diagnostic licen planus” basically meaning my skin was irritated but no reason for the condition could be identified. Because we do not know the exact cause of my vulvar irritation/ burning, I did not want to pass a baby through the area in the slim chance it was infection related (even just chronic candida). We also want to protect what I call our “financial investment” in my vagina! Another surgery is not an option for us physically, emotionally or financially.

Honestly, with baby coming in a month I have to admit the idea of a c-section terrifies me. Up until now, the vestibulectomy was the biggest surgery I’d every gone through. Recovery was challenging. So I keep trying to imagine what it will be like to recover from surgery AND care for a new baby, I’m overwhelmed even though I have a wonderful, supportive husband. I’m also afraid of what will happen to me when my hormones change after the baby comes… I’ve had depression, will I be more susceptible to postpartum depression? Will my vulva deteriorate a lot from the big change in hormones? Will I be well enough to take care of my baby physically and emotionally? Will I have a satisfying sex life with my husband again after all of this?

It’s been 2 years since the surgery but vulvodynia is definitely still impacting my life.

Moving Forward

Having almost completely stopped worked now, I will take the month before the baby comes to rest. My mental health is greatly improved, I’ve been surprisingly emotionally stable through the pregnancy. My focus right now is on being present, getting the baby here healthy and working to adapting our little family to a new normal. Every day I focus on all the gratitude I feel for being where we are at in our lives right now but our story is far from done. You see, I’m having a daughter. So now, more than ever I am determined to keep learning more about vulvodynia. This is something I never want her to have to go through.