15+ years in the making

I haven't updated in forever, but I receive and read your emails and hear your frustration and pain and I always try to respond. If I don't respond within a week or so please email me again. I've answered hundreds of your emails over the past few years and I promise not to stop. There is hope. Please don't give up. Please keep on trying. I had to try for 15 years but eventually I found a treatment that worked.

Here's my current update: I'm still pain free! I think the BOTOX really did it. Really cured it. The only medication or cream I take or use is gabapentin-- 300mg of gabapentin/day because I'm scared that if I quit it completely the pain will come back although there have been weeks at a time when I've gone off it and had no pain, so I am trying to taper off completely now.

I also finally, finally found the most amazing partner-- I think this is the light at the end of the tunnel that I'd been waiting, wishing, and hoping for. He's been the perfect man for me in this journey, which now includes this new life of sex without pain. I've discovered that sex with someone you love and without pain is so amazing. Besides just feeling good physically, it helps you feel so emotionally bonded and close to one another. It is a salve when there are other things going on that could cause tension in the relationship or even stressors that have nothing to do with the relationship. It can be so comforting or exciting or adventurous-- but it's all so good and the connection I feel is like no other I've felt, and sex is only one part of that. I'm really able to see and feel the emotional connection so much more than when I had pain with sex, but honestly a lot of it is related not just to pain-free sex, but to having the right partner to have pain-free sex with. I felt the deep connection before we had sex, and sex is what enhances it even more. I feel like my partner and I have an active, healthy sex life. 

I've been able to discuss my condition with him and I think he understands most of the trauma and background, but not quite all of how it has affected me mentally and emotionally, which is to be expected. I don't think anyone who hasn't been through this can understand how it pervades your entire being.

The part I still have trouble with is initiating affection because for so long I associated affection as something that led to sex, which was so painful... so I have to work on undoing those associations in my brain. A lot of the time I will be dying to jump up and give him a hug when he walks in the door or to put my hand on his back while he's standing at the sink or to reach over and grab his hand when he doesn't reach first, but I hold back and it's, like, I know what is happening and I want to overcome it, but I think it's going to take some time. I don't want to be reserved with regard to my affection toward my partner, because I have so much of it to give and I wish so much I could show it all to him. Luckily, we have talked about this and he is going to wait and help me while I work on this because I so badly wish I could show my affection without hesitation. 

Those pieces of my mindset/trauma where I was always afraid that affection would lead to sex have naturally carried over. There are times I want to initiate affection and I just can't and I get so frustrated with myself even though I know it's from the trauma; I want to blurt it out and tell him but then I tell myself that the time isn't right. I find some types of affection are easier for me than others-- it's really easy for me to go and cuddle on the couch with him-- I don't feel that irrational but totally ingrained fear in that situation, or if we are watching TV in bed it's also easier for me to show affection.

At night, even the nights when we don't have sex, if sometimes he falls asleep before I do I will tug on his shirt or gently grab his shoulder and he'll either automatically move toward me and know that I want him to hold me or sometimes before we fall asleep I even ask for him to hold me while we talk, even though him holding me is our default when we fall asleep at the same time. We sleep like spoons almost every night, usually the whole night, and I feel more comfortable asking for his affection in these moments when both of us are more vulnerable. I feel vulnerable and protected at the same time. In this space I know I can always say I'm not up for sex if I'm not and that the affection will still continue. I think this is helping to rewire the previous negative associations I have in my brain to positive associations.

Anyway, I never thought my life would be this good with regard to finding love and making such a deep, abiding connection due in part to being able to have pain-free sex. I dated a bunch of guys (but did not sleep with) before my partner and I didn't connect with any of them in the way I connected with my partner when I met him. The first time we had sex I was really scared because I did not know if it would hurt or not... the last time I had had sex was in 2009. It took me a couple months before I was mentally ready for sex, but my partner waited so patiently. He was so patient that sometimes I don't know why because I was so chaste and sometimes awkward and I think most men would leave if they knew it would take a couple months or more for sex to happen, but my partner waited for me and that's just one of the reasons why I know he's the right one for me. I would've waited for him, too, if the situation were reversed, so I guess that says something about our strong connection even before we had sex. 

I'm not on birth control because I'm so sensitive to the hormonal changes from it and there is evidence that birth control could cause vulvodynia. There's also risk of irritation from other chemical used in condoms so my doctor recommends the fertility awareness method if I'm exclusive with one partner and we are serious about one another, which I am and we are.

We broke up for a few weeks earlier this summer for reasons unrelated to sex but we only really broke up and didn't really talk for 2 weeks-- the other weeks we would mostly still sleep in the same bed and he would hold me, with sexual relations just sometimes. Being held without the expectation that there will be sex is such a warm, amazing feeling. It makes me feel so relaxed and loved. Being held after sex is also an amazing feeling. I don't have to run to get an ice pack anymore or apply lidocaine to stop the burning, searing pain. I can just relax into my partner's arms and fall asleep together. 

Before we officially reconciled he said he didn't want to get back together with me until he knew for sure that it was forever. So, I'm feeling lucky in love right now and have so much hope for our future. I held out hope for so many years that I would feel this kind of love, that I would find someone who is kind and could understand my background, understand me, someone who I feel deeply connected to and who feels deeply connected to me, someone who wants to make a family with me, somebody who loves me more than anything... so, so many years I spent hoping... and to be fair there were times when I lost that hope and Dr Vyas always reminded me of what I wanted in life and promised I would get there. I'm glad I never gave it up because I found this man who nurtures my soul, my mind, my heart, my body and I, too, nurture his soul, his mind, his heart, his body and more. He is my home and I am his. Sometimes I look at him when he isn't watching and I smile to myself at how fortunate I am to have found this love. Sometimes he catches me smiling and asks what I'm smiling about, but I don't tell him, even though I wish I could. That's the trauma component. On the other hand, I don't mean to be mushy, but I think our love is going to keep growing and growing beyond what either of us knows is possible. He's just that special (and so am I). 

I just want everyone reading this, everyone searching for hope, to know that I thought this would never happen for me, but it did! And it will happen for you. I'm going to get to have children and marriage and Dr Vyas will be there just like she said, even if I have to FaceTime her in for the birth of my and my partner's children.

In a way my vulvodynia past has opened up new ways for us both to be open with one another about sexual things related to each other or us together-- I think this openness and comfortableness in sharing things makes us closer, connects us, and helps bond us. 

We have gone on so many amazing trips and even one trip that was a trip of a lifetime and more like a honeymoon trip but even in some of the most mundane life moments I will find my heart skipping a beat and having to catch my breath or feeling butterflies in my stomach when I make eye contact with him. Or getting goosebumps when he smiles at me. It's such a sweet love and being able to have pain-free sex makes it all that much sweeter. I feel so lucky. Finally. 

My story finally got a happy ending and so will yours. Don't ever give up hope. I had to wait 15+ years for my ending and now a new, pain-free beginning, but it was worth it because I found the man who is most connected to me and I to him, and who I trust above all not to hurt me because he is kind, first and foremost. If you're in a relationship already, then I think kindness to one another while you go through this painful experience is paramount. Move closer to each other instead of distancing yourselves. Talk it through.

I know you're here reading this because you have hope, or you want to have hope-- hold onto that. I know it's hard sometimes but you must never let go of it. You will find a treatment that works even if it takes years. There's always something new coming around the bend. Just keep trying. And keep the hope close to your heart. (And go see Dr Vyas if you can get to the Houston area.) 

It only took 15 years, but there is HOPE for everyone!

I had a follow-up appointment with my amazing doctor last week. She did the Q-tip test and I am completely pain free except for one tiny spot between 6 and 7 o'clock and only when she applies a lot of pressure. It's not a pain I was able to recognize using my own fingers and applying pressure so I'm not too worried about it. I also had no pain on the other tests/simulations she did. This is the first time I've ever been able to say I am pain free for all intents and purposes.

I'm still on medications and creams:

• oral gabapentin 900mg three times per day
• specially compounded cream: estradiol 0.5mg/ml and estriol 1mg/mg in water washable base hypoallergenic 

She tested my estradiol level and it was 295pg/ml (I might be wrong on the units- will edit later). I was on day 10 of my cycle on the day she tested so it's a little bit high but she said it was okay. We are going to talk later this week via telephone and I'll ask her more about it.

I also should have mentioned in my previous post that I've been taking classical Pilates instruction (one-on-one) three times a week since June. We've been focusing on my posture, which necessarily includes hip alignment. I went to actual vulvodynia PT back in 2010 before my surgery and was told my internal muscles were basically OK - maybe my hips/legs/posture being misaligned has been causing referred pain to my vulva. I know not everyone can afford Pilates, but maybe regular PT might be something you could get. Or even group yoga classes.

Off-topic: I've been Googling and reading as many vulvodynia blogs as I can recently to get a feel what is out there (not much) and I noticed that almost none of the bloggers name their doctor. I think they should. I know they might be worried about being identified, but the probability of that is so low that I think the benefits to other women looking for vulvodynia help outweigh the risks of being identified. So, if you're reading this and you have a blog, please say who is treating your vulvodynia.

My doctor is Anuja Vyas - I've said this many times about her - she is incredible. She is compassionate, attentive, and most importantly, her clinical instincts and knowledge are some of the best I've ever seen. I think some people truly are meant for their professions and she is one of them.

I'm actually moving 1,500 miles away soon but I will fly back to see her as needed to follow-up with my vulvodynia. I think this is something that will always need monitoring at least once a year or so even if I continue to be pain-free. I can't imagine having another doctor-- I've been through everything with Dr. Vyas. I think I was her [very willing] guinea pig for some treatments, like the BOTOX, which she had never done and I had to push her to try and now she uses on other patients.

I feel so much gratitude toward my doctor for all she has done for me, the risks she has taken, her emotional courage and the grit it must take to deal with patients with pain. I am forever thankful that she now sees me on her non-clinic days and sits and talks with me for as long as I need or calls/emails just to see how I'm doing. Dr Vyas has the grace and the grit. That is why she is a good doctor. I think I was the first patient who she went through literally everything with from beginning to (hopefully) end and that naturally bonded us and made the doctor-patient relationship productive. It's comforting to know she's just a text away. It's funny, but even though it was mostly me who would lose hope about this, I think sometimes she was the one losing hope and I was pushing her, like with the botox. See, a collaboration, truly.

Vestibulitis / Vulvodynia / BOTOX - I AM PAIN FREE

In my last post, back in April 2014, I wasn't 100% pain free. The BOTOX injections I received in 2011 seemed to help significantly but I was still considering having another round of BOTOX injections. However, my doctor, Anuja Vyas, M.D., recommended I try a compounded estradiol cream in the meantime while I considered doing more injections. I started using the cream in July 2014. She also put me back on gabapentin 600mg three times per day.  To my surprise, I am now 100% pain free. It is gone. Finally. 

I will continue to use the cream and get the exact ingredients from my doctor so I can post them here. The prescription as it it is written on the compounded bottle is: 

•  30.0 MI E2 0.5 MG/E3 1MG/ML 

• Apply 1/2 ML to  entry of the vagina every day

I started this journey with Dr Vyas in 2010 with surgery. Prior to the surgery we tried tricyclic antidepressants, gabapentin, and creams. In 2011 I received steroid injections, pudendal nerve blocks, gabapentin, and creams which did not work. Finally, after begging my doctor I received BOTOX injections in late 2011. My pain seemed to decrease by about 90% in 24 hours. In the next couple years it seemed like the pain was creeping back up - I thought maybe the BOTOX was wearing off. 

In 2014 I tried the specially compounded estradiol cream (which I had also tried to no effect in its commercial form, Estrace, before the BOTOX in 2011) and oral gabapentin; now I am completely pain free. 

I hope this is the end of my journey with vulvodynia. I am so grateful to have found such a great doctor who was willing to work with me and try novel approaches in treating the pain. It was truly a collaboration of hearts and minds. There were some really difficult moments when I lost hope and even my doctor cried along with me, but look where I am now... She told me that I would get married and that I would have children-- and that she would be there for both these life events. I am so thankful that I didn't give up-- I am so thankful that I had Dr Vyas to remind me of all that I want in life with regard to marriage and a family and to carry some of my emotional pain when I was unable to carry it by myself. If you are reading this it is because you do not want to give up. And you should not give up-- there is always hope-- always a new treatment to try. Keep on, keep on.
 
Here is more information about how to contact my doctor at Texas Children's Hospital in Houston.

Vulvodynia and botox -- yes, it did work... but not forever.

Wow! I'm so sorry I haven't updated this blog in a long time. I see the traffic reports every week and am continually amazed at how many of you there are searching for answers, searching for hope. Vulvodynia sucks.There are very few people who understand how severely it can affect one's emotional, physical and mental life unless they're are also sufferers.

Nothing has changed. I still have localized, provoked vulvodynia (vestibulitis), but the BOTOX was effective in masking it. The botox injections worked in relieving me of 99% of the pain, but the effects wore off some time after 6 months. I haven't gotten more injections yet because I am not in a relationship and haven't been since I had the original BOTOX injections.

I think the intervention came too late for me in that my mind had already made deep associations between pain and sex-- to the point that when I finally was without pain and could have pain-free sex, I no longer desired sex or desired to be in a relationship. It seemed easy not to think about it and to focus on work and other things in my life, but recently I saw my gynecologist again and she reminded me that I actually do want to be in a meaningful relationship, do want to have sex, do want to have children.

So, I'm going to have another set of botox injections in a couple months. I think having the injections even though I'm not dating will help me begin the process of entering the dating world again. I'm a very analytical thinker, and I spend a lot of time in my head-- some of that time I spend thinking, 'well I don't want to go on a date or put myself in that position because then I will have to make an appointment with Dr. Vyas, get botox injections, etc etc and then the date or relationship might not even work out so why even bother?' That's kind of how I think. But I'm going to make a run-around my own way of thinking and get the botox preemptively so that line of worrying/thinking will no longer be open to me.

Another thing I'm going to do is see a therapist who focuses in sex issues, including vulvodynia and painful sex. I probably have a lot of mental trauma built up from the time I became sexually active until the time I found a doctor (Anuja Vyas at Texas Children's / Baylor College of Medicine) to truly intervene and begin helping me emotionally and physically process this huge burden of having vulvodynia.  So the length of time that I was dealing with it to no avail, often with no treatment at all, was about 7 years. I was in different relationships during those years and they always ended disastrously because of my vulvodynia. And I'm traumatized from that. Not from the relationships ending (dodged a few bullets) but from what went on in the relationships. Even though I knew sex was painful, I let myself say OK to having sex to my partners in those relationships, even though deep down I did not want to say OK because it fucking hurt. I feel weak for having consented to that and I also feel somewhat resentful of men in general for knowing that sex was painful for me and still wanting and going ahead (with my consent) with having sex with me. I need to sort out these feelings before I can date again so I'm going to see a therapist to help me with that.

A lot of people write to ask if insurance covers the Botox. The answer: I do not know. Last time (in 2011) I just paid out of pocket (around $800 total) because I wanted to see if it would work and didn't feel like bothering with the insurance company. This time I will probably pay out of pocket and then submit a claim for them to cover it. I don't know much about how that works so I'll write updates here on my blog. I promise to update this more often than once every 3 years. I want everyone to have as much information as I have. Last night I Googled "vulvodynia and botox" and "vulvodynia" and started reading women's blogs and posts on various forums about their experiences with vulvodynia and I had to stop because I realized it was making me depressed and angry. Angry that some gynecologists are still attributing it to psychological problems or angry that some gynecologists offer virtually no help to their patients -- at the very least all gynecologists should know the names of other doctors in the area who are more familiar with this condition.

This was my general update post so I don't want to make it much longer. I'm going to write 2  additional entries in the days to come-- about my recent visit with my gynecologist who is pulling me out of this funk and about the need for a greater emphasis on simultaneously addressing the mental and emotional effects of living with vulvodynia when the patient initially presents to the diagnosing physician. 

BOTOX success / botox and vestibulitis, vulvar vestibulitis syndrome, vestibulodynia, vestibulectomy

Well... I am finally pain free and can have 100% pain-free intercourse thanks to BOTOX!

First, I should note that I do not have any pelvic floor dysfunction-- I've been to physical therapy with an experienced pelvic floor PT and had my muscles tested via electromyography. I had no hypertonicity in the muscles and no pelvic alignment issues.

Botox can be ordered in 50 Unit vials as well as 100 and 200 Unit vials. My gyn ordered a 50 Unit vial and injected 25U (about 0.7ml) into my lower vestibule at 6 o'clock. She pointed the needle toward the 5 o'clock position since I had most of my burning pain in my left vestibular area. She injected the other 25U (0.7ml) in the perineal body, which is the point midway between the vagina and the anus. It is where the bulbospongiosus and external anal sphincter muscles, and the levator ani and transverse perineal muscles attach. As far as I know, at least according to published literature, this is a novel approach for the treatment of localized, provoked vestibulodynia. I noticed a response by 48 hours after the injection. I was totally pain free after 48 hours and have remained so. It may be that this should be a first line treatment for localized, provoked vestibulodynia but more research is needed in order to conclude that.

After the success of the first 50Unit injection in the lower vestibule, we injected the upper vestibular area with another 50Units... she injected right below the clitoris in the 12 o'clock position and then around the 3 o'clock position.

A 50 Unit vial of botox costs approximately $350 and can only be ordered through your doctor (i.e., it cannot be called into the pharmacy).

If you are going to have BOTOX injections I would make sure to go to a provider who has done it before. I was my doctor's guinea pig but she has incredible clinical instincts and I trusted her implicitly from the beginning. We both did a lot of research (only 7 other published studies have tested botox for vestibulitis and related conditions and 3 of those were individual case studies. The ones with multiple subjects all had mixed results). I think it is important to distinguish general vulvodynia from localized, provoked vulvodynia/vestibulitis. That may be the key in determining who will benefit from BOTOX injections. Maybe botox will become first-line treatment in the future. We can only hope.

A lot of people have the mis-perception that botox is only for muscle issues but that is not true-- the botulinum toxin actually paralyzes the nerves so that they cannot send pain signals. It is also hypothesized that botox depletes the area of Substance P, a protein that acts as a neurotransmitter and is responsible for inflammation and pain.

Given the cost of the surgery, and the recovery, I think it might be worth trying BOTOX before surgery. It might even be worth traveling to a provider who has done the BOTOX with success before, like my doctor has with me.