Monday, November 3, 2014

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.

Monday, October 20, 2014

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... 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 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.

Sunday, April 20, 2014

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. 

Monday, August 29, 2011

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.

Wednesday, June 1, 2011

Steroid shots, symptoms, pain, BOTOX

Well I think I might be experiencing less pain now but I seem to have developed pain in other areas. For example, deeper in around the 9 o'clock position. It's definitely not muscle pain either-- it is nerve pain... like a straight line of pain emanating from that area. I've noticed less pain around 3-9 in general, but if I put pressure on the 12 o'clock area I have more pain.

I don't know if the decreased pain is from the steroid injections (would make most sense given where the pain has subsided and where it has not) or from the increased doses of desipramine and gabapentin that I'm taking.

My doctor finally gave in and agreed to do Botox injections. I am not going to even try dealing with insurance over the Botox so I will pay out of pocket for them. I think it's worth it if it provides a permanent or even semi-permanent resolution of my symptoms. I don't want to take meds for the rest of my life and I'd rather not go through painful pain blocks, which I would require several of, before trying the Botox.  It makes the most sense for me to do it in that order. I love my doctor. I sent her some information on impar ganglion blocks and she researched some pain specialists that could do them. She really goes out of her way to help me. Well, actually I think she is just being a good doctor and that all doctors should be like her, but since so few are, her behavior really stands out.