I know a couple posts ago I wrote that I feared that my doctor would dump me onto a pain management physician/clinic, but I think I was just projecting my fear of what I've seen a lot of other doctors do when they hit a wall or have to deal with a recalcitrant condition. I've seen the "best" doctors at "top" hospitals/institutions dump patients onto another service just so they wouldn't have to deal with their complicated conditions. But my doctor's manner today was 180 degrees opposite of that. I can't find one negative thing to say about her. Throughout this she has been so supportive, encouraging, and committed to my care.

She says I don't have scar tissue, but she did recommend PT (physical therapy). There is a pelvic floor PT here Houston called the Pelvic Health and Physical Therapy Center and they have a specialist in vulvodynia/vestibulitis etc and I saw her once before I had my surgery. My doctor talked to her afterward and I guess the therapist expressed to my doctor that I was pretty "mentally resistant" to the idea of PT, which was true.

The reason I was mentally resistant was multi-factorial. First, they told me at PT that 80% of pts with my condition can achieve full resolution of their symptoms through PT and I thought that was bs. Second, I had to wait nearly 2 hours for my SCHEDULED appointment (which they told me to arrive EARLY for) so I was in a terrible mood. Third, THEN they made me pay $55 for the vaginal sensor on top of my $35 co-pay. I probably wouldn't have been as irritated about that if not for the waiting. In fact, I probably would have not been mentally resistant at all if they hadn't made me wait for 2 hours. It's not like there was a PT emergency. And then afterward I had to wait MORE to go see the useless M.D. in charge just for insurance purposes. I was so agitated because I was going to be late for the rest of my day that I almost walked away.

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).

Several month post-op update

I had my vestibulectomy in November 2010 and wrote about the experience (pre- and post-op) on here and wanted to come back an update you all.

I initially had great success and progressed through the dilators with burning only in one specific spot (instead of the whole thing). I got up to the biggest size in the set and could take that comfortably. It felt like an 80% improvement from pre-surgery.

Just recently I started using the dilator again (because I have an appt with my dr coming up) and OMG it hurt so much. It felt just like old times except that I have trouble discerning whether what I'm feeling is a burning pain or a stretching pain. It seems to hurt the most in the 6 o'clock position. I even tried it while taking TWO of my left over Vicodin and it hurt a lot. I know last time I saw my dr I asked her if excising more tissue would be a possible solution and she said no. She said I could go for a second opinion but honestly if she doesn't feel comfortable operating and I go to another surgeon and they say they think I should have more surgery, I will be really dubious.

We are going to try steroid shots at my next appt (next week). I hadn't tried those prior to my sx. I also read a study about having multiple nerve blocks injected to the site over 3-6 months and how those had proved efficacious in one group of women but I think those would need to be done by a pain specialist under the guidance of radiology. I will ask her about those.

I'm not sure what's going to happen but I'm very skeptical now about any new treatment for this awful condition. I wonder if I will ever know what it is like to have pain free sex. I am scared because I feel like my dr is ready to hand me off to someone else if/when these steroid shots fail... last time she mentioned having me see a pain specialist. I really don't want to go to one though-- I feel like they will just prescribe me some opiates and that's not what I want. I don't want to be so out of it that I don't feel pain when I have sex...

I've already tried the tricyclic antidepressants... also before the surgery I wanted to try capsacin again (I had tried it in 2004 to some mild success) but holy hell it hurt like nothing I had experienced before (even my previous capsacin trial). It was the same concentration but probably in a different base, but I can't imagine the base making THAT much of a difference. I even put 5% lidocaine on to the site beforehand (as my dr had instructed me). I really like the theory behind capsacin but basically I would need to be on some really strong painkillers before trying that again.

I think my vestibulectomy was not completely successful. It seems that the nerves have re-grown (something that is not predictable).

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.