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.
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.