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.

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.

Second set of steroid injections

I had my second set of Kenalog steroid injections yesterday. Ouch again! My doctor is going to order smaller needles (I think she used 26 gauge but I told her I want 30 gauge). The swelling and soreness isn't nearly as bad as it was last week. It's actually not bad at all. Also late last week I noticed a big improvement in my pain. I still had pain when she did the Q-tip test yesterday (Monday) but I think it is getting better. It's really only bad when she applies more pressure than the Q-tip touch to the area and only in some specific spots. She says I am one of the worst cases she has seen (and she sees a lot), but I am hopeful that I'm getting better. My doctor decided to put me on desipramine (a TCA) just to help my mood. She started me at a really low dose. I'm still taking 900mg of gabapentin each day.

When we are done with the series of steroid injections I'm going to try acupuncture. It's been shown that it can help with neuropathic pain.

What I'm really frustrated with is how this has interfered with my dating life and relationships. I think I would be married by now if not for this condition. Sometimes I think those who only discovered this condition after they were married are luckier in that they have in built support system. But I guess they also have a lot more to lose if their spouse isn't supportive, or gets frustrated and loses support. One of the main problems I've encountered in relationships is men thinking they are entitled to other sexual things because we can't have vaginal sex. It is the attitude of entitlement that makes me not want to give it to them-- if they were supportive and loving then my reaction to their reaction would be different. It's, of course, a really complicated dynamic and there is no way I can give it justice here so these are just surface thoughts. I've also found that they grow angry at you and blame you if they get aroused etc. It makes me not want to be part of any affection because a lot of guys have this mentality that affection ---> sex.

I wonder if it is normal to have pain (not burning/vestibulitis type pain, but soreness at the injection site) after having steroid injections. I had 3 injections yesterday- 1 by my clitoris between 12 and 1 oclock, one between 5 and 6 o'clock and 1 between 7 and 6 o'clock, approximately. Today (and yesterday) it is sore to touch even with light pressure and the area is visibly swollen. My doctor said that she had never experienced a patient having a pain flare after steroid shots, but this isn't a flare of my normal vestibulitis pain, it's just soreness and swelling around the injection sites.

Steroid Injections

I saw my doctor today for the steroid injections, specifically triamcinolone acetonide (Kenalog) mixed with lidocaine. If you read the literature you might see recommendations for methylprednilosone as the steroid but my doctor said that the reason she wanted to do Kenalog instead was because it's not as strong as the methylprednilosone and apparently the stronger the steroid, the more likely it is to cause vaginal tissue atrophy. So the injections hurt a lot but I was able to make it through it (I took a Vicoprofen t about half an hour prior to the injections). That was about 4 hours ago and now I am starting to have pain where the injections were. I actually just had a shooting pain down my leg. Jeez I hope I did not open Pandora's box of mysterious conditions with these injections. I just took a Vicoprofen about 5 minute ago. I don't even know how to rate my pain anymore. Sometimes I don't think it is that bad and then my doctor does the Q-tip test and I have pain all over.

We are going to do another set of steroid injections next Monday and then again on the Monday after that.

My doctor said if this series of injections doesn't help or doesn't help enough, then she will inject another steroid into the muscle in my buttocks. I forget which muscle specifically. She also said she could do the pudendal nerve block, but that I'd need to see an anesthesiologist for the caudal epidural or impar ganglion. It may be muscle pain, but it is also that the nerves have regenerated.

I asked my dr about a 6% gabapentin compounded cream but she said that it was unlikely it would work because it's not absorbed systemically. I also asked her about possible hormonal causes or links and she pretty much debunked that. I told her I had read of a lot of women who have this being prescribed testosterone creams, etc and she basically said there were no studies to support that theory.

I'm going to continue using the Estrace cream, taking 900mg of gabapentin everyday, and using the dilators. She also wants me to consider acupuncture and to seriously re-consider PT (physical therapy).

I only have a few stitches left and I can see that they are falling out. I saw my doctor last week for my one month post-op visit and that's when she said I could go ahead and start using the dilators. She said it was very important to use the dilators in the peri-operative period. (fyi- I had a "full" vestibulectomy).

Just a background note- I did not have pelvic floor/muscle issues beforehand-- I could use tampons and have sex (sex with horrible pain) and somehow I was able to keep my muscles relaxed. I will probably continue using the dilators at least once a week once I reach the maximum size just to keep my body used to the feeling (since I don't have a partner). My doctor said that there was no risk of vaginal stenosis (narrowing) if I quit using the dilators after I reached the maximum size. Once I do have a partner though, I think I will be afraid to have sex - I guess because that is the ultimate test of whether or not the surgery worked, right? My doctor said it would be okay for me to have intercourse now if there was someone "special" in my life, though there is not and I am not mentally ready to have intercourse.

I'm so glad to be on this "side" of the surgery (post-op) and so satisfied with the care I have received from my doctor. She's definitely at the top of her game and I would recommend her to others.

Just as a general update, my doctor said that she could already see the difference from my using the Estrace cream (had been applying nightly since the surgery) and since I was having slight headaches during the day I could cut down on using it to only a couple times per week.

Also for those who are paying so much for their dilators-- when I went to be evaluated by a pelvic floor PT, they tried to sell me some expensive dilators but I declined. Then my doctor told me about vaginismus.com, which sells a set of 4 medical-grade dilators for $44.95.

Someone asked me about the breakdown of hospital and other fees for the surgery:
I have Blue Cross Blue Shield (of TX) and my bill was about $13,000 (then reduced to $3,000 that the insurer would actually pay the hospital) and I am responsible for about $900 total (in addition to the $3,000 that my insurer will pay the hospital), including my $350 deductible (I have really, really great insurance.) Most of the $13,000 were hospital use/equipment fees as well as the anesthesiologist fee. I'm not sure what my surgeon's fee was but this is the breakdown:

Pharmacy - 620.00
Med-Surg supplies - 42.00
Lab - 477.00
Lab-Path - 875.00
OR Services - 8,750.00 (this could include surgeon's fee as well as nurse and anesthesiologist)
Anesthesia - 787.00
Drugs requiring spec id - 10.00
Self-administerable drugs - 4.50
Recovery room - 1,764.00

Dilators, post-op

My doctor gave me the go-ahead to start using dilators. I ordered a set from vaginismus.com and I am currently on the second dilator. I don't have much pain except in the 11 o'clock area.... I think tomorrow I will try the #3 dilator.


I wonder how long I am supposed to continue the dilator use. If I am comfortable with the biggest dilator then can I stop? I will have to ask my doctor.

I am 5 weeks post-op. I still have some stitches but they should fall out soon. My doctor took some out in the office but it hurt so she said we'd just let them fall off.

Day 5 Post-op vestibulectomy

I just wanted to update everyone on my progress. I am currently Day 5 post-op (I had my vestibulectomy on 11/9/10). Days 1 and 2 post-op were the easiest and days 3 and 4 the most difficult. I think a lot of the anesthesia and the IV pain meds didn't really wear off until the end of day 2. Anyway, today is the first day (evening, actually earlier today I wasn't) that I've been able to sit at my desk and use my normal computer as opposed to my laptop. I am sitting on a very comfy chair, however. Besides that it has been difficult to walk far. Right now I am in the least amount of pain I have been so far.

My doctor did call me on 11/10 like she said she would- she just called later in the evening. She said she had done the procedure from basically the 2 o'clock position to the the 10 o'clock position. She said she did not want to risk going farther up because it was too close to my urethra. The ice has been a lifesaver but I finally don't need it all the time anymore. Now I have more of an intense itching sensation. It really helps to use the bottle of water to rinse the area with when I urinate. Sitz baths also help.

I had a bowel movement on the morning of Day 4 and it did not hurt (I had been taking colace for about a week) but it did cause some bleeding. The bleeding quickly stopped though. I had been worried about "popping" a suture/stitch but my doctor told me that this was not possible. She said she used a mix of some very deep stitches and then some superficial sutures. The area she cut was about 5mm deep and 1cm wide. I read the path report yesterday and it just stated that there was chronic edema (swelling) and inflammation in the sample.

I am a little bit concerned because one of my labia seems to be bigger than the other, but I'm not in any pain. Things do feel tight down there.

I think it is important to emphasize that everyone heals at their own rate and it is really difficult to predict how one will handle the procedure. I am lucky in that I didn't have any issues with the muscles down there, nor did I have more generalized pain down there. I think (I hope) for me that it was really just this localized pain that this procedure will take care of. My doctor is very hopeful too.

I don't know about going back to work about a week after- I don't think I'd feel comfortable sitting at my desk all day, but I can work from home at my leisure so I am fortunate in that regard.

I will be coming back and giving periodic updates on my progress.

The day of my vestibulectomy

I had my surgery today. My doctor did answer all my questions. The resident arrived to my pre-op about an hour before my doctor did and so I chatted with her for a while and that helped me feel better. Then when my doctor arrived and asked how I felt, I told her that I felt "really scared" and her response, was "ok, tell me what I can do to help you feel better?" Really great bedside manner. Her demeanor was very laid back and I didn't feel rushed at all. She actually walked with the stretcher as we were going back to the OR and she did the q-tip test one more time to map out where she would cut before I was given ANY sedation. She wanted me to be fully alert for that part. I got to see the stirrups that they use in the OR -- they look like torture devices but they are not painful, just awkward. We did the Q-tip test a few times just to make sure and then the anesthesiologist put me under. (Just another note about anesthesiology- you can ask for them to put an EEG strip on your head so that they know you are truly asleep. I only knew about this because last year I had my appendix out at another hospital and they did that and I asked them what it was for.)

I did ask my doctor for Percocet but in Texas you need a special prescription pad to write for Percocet since it is a CII (triplicate rx pad) and my doctor did not have one. I asked her if the resident could go get it (I thought she meant it that she left it in her clinic or office) and she said that she just didn't have one- that she didn't know of any of the attendings in her department who did since they don't usually write for those drugs. That struck me as odd but I am used to working with cancer patients. Anyway, I asked her if she could give Tylenol 3 and so she did. She also gave me 800mg ibuprofen and some Estrace cream. I haven't used the Estrace cream yet.

We went into the OR at around 9:45 and I was woken up at around 12:45. I was in A LOT of pain 9/10 overall- it felt like stabbing and throbbing. The nurses gave me IV fentanyl up to 80mcg over the course of the next 3 hours and also 10mg Norco and IV diluadid and also IV something that is like motrin, but stronger. After the first few fentanyl and diluadid doses, my pain came down to an 8/10. With the ice on for about an hour and that ibuprofen like IV medication, it came down to 7/10. Finally about an hour before I left they gave me a final fentanyl dose and I felt like my pain was at 6/10. I felt like my bladder was full (probably from the IV fluids) so I went to urinate. It was not painful to urinate, but difficult. I just couldn't get it going. It took me about 10 minutes and I did feel like my bladder was empty at all, however there was what seemed to be a lot of blood in the toilet and that freaked me out a bit. The nurse said it was normal and that it was just kind of built up. After that they thought I was ready to go home so I dressed and got a wheelchair ride downstairs (I put a pillow in the wheelchair and tried to lean back as much as possible-- at that point it was not comfortable to sit).

When I got home I put an already waiting ice gel pack on and took a Vicodin while my friend went to the pharmacy to fill my scrips. My doctor wrote the tylenol 3 to take every 4-6 hours as needed but the anesthesiologist told me to take it every three hours for the first couple days. I just took my first dose about an hour ago (because I had taken Vicodin earlier) so I'll see if it makes me feel better than the Vicodin. The ice is SO SO SO important and I am glad you guys told me about it or I feel like my nurse would not have thought of it (and my doctor did not write it in the orders). When I asked the nurse for ice she had to page my doctor for the ok.

My doctor is going to call me tomorrow because she thought I would be too out of it to talk today after the surgery. She did say that she only expected me to be on bedrest for the first couple days. She said after that I should feel free to do stuff in the kitchen and take short walks, or walk as much as I feel comfortable. She said I could start sitz baths tomorrow afternoon. Also, at the hospital they gave me a squirt bottle that I am supposed to use to rinse the area when I urinate. This is really helpful- I put warm water and he helps me urinate. Also, the urinating is not painful and there is not as much blood AND I can feel like I've emptied my bladder.

Another pain thing that my doctor told me (and nurse and anesthesiologist said same thing)-- if I get my pain to a tolerable point at the hospital and then just keep taking the pain medications as prescribed (instead of waiting for pain to increase) then pain will stay tolerable. Otherwise I could have breakthrough pain.

Of note, I went to one session of PT and that was what finally made me decide to do the surgery. I had virtually no hypertonicity or hypotonicity-- essentially normal. I had been trying oral gabapentin at increasing doses for months, had tried various compounding creams, tried capsacin (painful, just ouch), and things just seemed to be getting worse over the past 10 years or so. Sex used to be manageable with lidocaine but in the past year it was not at all. That and my doctor said she had just been to a conference session on vestibulitis and there seems to be a consensus that this is primarily a disease of neuron over-proliferation, which currently is only solvable by surgery.

I won't know if this worked for some time, but I am hopeful. I am feeling emotionally ok tonight, too, but that may be a lot because I was so well supported by the medical staff (and by my friend who sat with me in post-op and helped me fill scrips, etc) today. I won't have a follow-up visit unless I experience more pain or some other problem for 4 weeks. That seems a long time but it is just as well-- I wouldn't want anyone to be feeling around the wound until it has healed. I'm afraid to look down there. I don't think I will - at least not until the pain subsides a lot more.

Now I need to make a list of questions to ask my doctor tomorrow! I always forget on the spot.