I’m telling YOU this before my friends and family! 🙂
First of all, I apologize for not posting sooner, as you can imagine I have been very distracted!
Last month was an important “post vestibulectomy” milestone. 18 months post op was the date given to me as “full recovery” time. I was originally told that I would be feeling better 6 months post op and then it was explained that I should not worry too much if I wasn’t completely healed by then (healed is defined as having pain free sex) since 18 months is how long it could take for the tissue to recover. So, here is the final outcome:
In the “end” I do not have pain free sex. But sex is possible and less painful. As my 36th birthday nears my husband and I decided we couldn’t hold off starting a family any longer because of vulvodynia. I’ve started to move into an “acceptance” phase. Having the surgery makes me feel like I explored every possible option that I was open to and that it’s time to move forward with life. Surgery was the right option for me, but it didn’t solve everything. I will likely have discomfort “down there” for the rest of my life but I do have a chance at having regular sex in my marriage even if it isn’t as regular as I’d like. When I set out for the surgery, my goal was to be able to have sex 2-3 times I week. My new goal is once a week. Since I’ve been pregnant… it’s been once a month but that is a whole other story!
If you have been reading my blog for awhile you’ll know that I have several chronic conditions. Fibroymyalgia, hypothyroidism, low testosterone, insomnia, yeast/ sugar and gluten sensitivity… I’ve always suspected that all of these things were somehow tied in together with vulvodynia. Generally speaking, I rarely feel well. My energy is very, VERY low to the point where it is difficult to hold down a regular job and daily tasks can become overwhelming. For many years, I could not imagine having children. I didn’t feel I’d have the physical endurance. Further to this, I am not a maternal person and am terrified of childbirth. So as the years went on, I figured it was unlikely I would start a family. After having several miscarriages, I thought it even more unlikely.
I hadn’t considered what marrying the right person might do to change my perspective. My husband makes me think I can do anything and has taught me that there is a lot I can overcome, and that sometimes you just need support. His unwavering support is what made me brave enough to “take the leap” towards pregnancy. Ironically, the way he supported me through the surgery was one of the most important events to shift my opinion from “no family” to “family”. I saw that where I was weak, he was strong. As newleyweds at the time of surgery, we were really still getting to know each other and as our marriage became a true partnership I started to realize that by marrying him, I had doubled my strength.
So one brave week a couple of months ago, we decided to go for it. I’ve been on a waiting list for a fertility program for over a year and half. I was originally told it would take 6 – 8 months. I’d hope to get testing done that would give us more information about why the miscarriages happened in my past. This is another example of how I feel Canadian medical care has let me down. Fertility… is clearly a time sensitive issue and it taught me once again that when it comes to my health, I can’t rely on support from medical professions. I will always have to be aggressive about taking care of my health and to be honest, if I had any money left after the surgery, I would be paying to get proper medical care again. Anyway, sorry for the rant. I’m angry and exhausted with my experiences with medical professionals through the years. I hated feeling like trying to get pregnant was “rolling the dice”.
At the time we were trying to conceive, my overall health was fairly good. I reduced my work a lot which decreased my stress even though I constantly worry about money, it seemed like the best thing to do. So a week leading up to my ovulation I put my poor husband to work! We had sex everyday for almost NINE consecutive days. Which after having a full vestibulectomy and no sex for months in the previous year, was really… weird. Driven by determination and per-ovulation hormones… and fear that I would backout… I became single minded about mating with my poor, overworked husband. I should explain my dear husband works full time and takes evening classes… and frequently cleans the house and cooks diner for me on days when I’m not well… plus he does all the laundry (this is why I always say I hit the love lottery when I found this man: handsome, smart, sweet and helpful around the house)!
I’d like to mention that on day 7 HE told ME he needed a night off sex! It was seriously one of my proudest moments. And honestly, I was appreciative, I was definitely sore and needed the sleep but I still like to tease him about “not being able to keep up with me” … that one week. 😉
Less than three weeks later we ended up with a positive pregnancy test while on vacation. I went through a range of emotions, among them: fear, gratitude, confusion, relief, shock and in between all those? Joy.
Part of my monthly therapy has included dealing with my fear of pregnancy/ childbirth. For over a year, I’ve been trying to prepare for this moment but it turned out after so many miscarriages… I didn’t really believe I was pregnant.
At 7 weeks, I was sent for an ultrasound. One of the “perks” of being a high risk pregnancy I guess… perhaps it is just mercy. I desperately tried to see the technician’s screen and searched my husbands face for any indication that the pregnancy was viable. When the ultrasound technician quietly left the room without speaking I started to cry and explained to him that I expected that reaction for another miscarriage. My husband stayed calm and when the technician came back in the room she saw that I had been crying, I apologized and explained that I’d had several miscarriages before. She looked at my paperwork and said “oh I see” and then swung the ultrasound screen around so I could see it, rolled the “wand” over my stomach and showed me a heartbeat. SHOCK. TOTAL SHOCK. After several pregnancies, I’d never seen a heartbeat until this one.
I was on the table shaking and she handed me a picture and sent us on our way.
In the weeks since, I continued to struggled with understanding that this is real. I’m afraid a lot. I have been very sick and worried about money as I’ve almost had to stop working completely. My husband (as always) has been incredibly supportive, running out to the store at all hours of the night for whatever I need and doing more around the house while I lay down most of the day.
To make matters worse, nothing messes up a delicate system like a pregnancy. I began cheating on my diet… drinking milk, eating too much sugar, eating gluten. I stopped most of my supplements as many of them weren’t safe during pregnancy. Last week, at 11 weeks pregnant I was so ill and bloated…I started to realize that it couldn’t be normal in pregnancy. It was easy to blame everything on being pregnant but many of the problems I had before the surgery returned. Vulvar pain, urinary burning, severe bloating, brain fog. It was easy to pass these things off as pregnancy symptoms but now I have to go through recovery again… strict diet time. I feel disappointed that I seem to have undone so much progress in such a short time, especially when I never had more of a reason to take care of myself but that is the real challenge. Consistency.
The doctor gave me progesterone to help maintain the pregnancy, I also take baby aspirin every night to help. Finally being on thryoid medication might be contributing to why the pregnancy has been maintained to date also. As the pregnancy progresses, I’ve started to consider how vulvodynia interacts with pregnancy.
I spoke to my doctor who suggested a C-section so as not to cause further trauma to my vulva. I now consider my vulva an investment, how weird is that? So I am currently on-board with having a C-section but it got me wondering how vulvodynia patients and post vestibulectomy patients manage childbirth. I maintain this blog in an attempt to help other people and I wondered if I could do more. So I’ve decided to participate in a UBC Study on the subject (last study at the bottom of page). I should find out later this week if I qualify.
I struggle with having nightmares about childbirth/ C-sections. And that is when I can sleep at all. I wonder all the time if there is still a baby in me. I ask my husband every night before bed, “do you think the baby is ok”? and he always says yes and it always makes me feel better. On Monday, when I am 13 weeks pregnant I am going in for Down Syndrome screening. A whole lot of reality is hitting me. I’m scared I won’t have the energy and strength to care for a healthy child, what if they ended up with special needs? What if I have a vasovagal response after the C-section like I did the vestibulectomy and do real damage to myself or the baby? (I thought I’d ruined the surgery from having seizures and pulled all the stitches in recovery from vestibulectomy).
On some deeper level, I feel like we just reached the end of one painful journey only to embark on another. I would love to feel carefree, focused on nursery room colors and sharing the news but I am full of fear and doubt. If I have a daughter, could she end up with vulvodynia too?
I don’t know. All I can do is take things one day at a time, just like I have for the past 19 months.
For now the pregnancy is a secret between me, my husband and you. Stay tuned!
Vulvodynia Siren 