Side effects...

It is still sore and swollen some 2.5 days later but my doctor emailed to say that this is normal.

I asked my doctor again if I had any scar tissue and she said that I had none that she could discern. She said my healing has gone "beautifully." I know if I go to the PT the therapist will say that I have scar tissue, which is another reason why I am skeptical of the whole PT enterprise. Or maybe it's just this PT I saw (who specializes in vulvovaginal PT). I don't know what it is but I feel like they are just trying to justify taking money from me. I know some people are really helped by PT, but if there was no problem with my muscles before the surgery and the PT people still recommended I come in for 12+ treatments, that makes me wary. I guess I will have to get over this and just commit to doing PT for a certain number of weeks-- also another thing is that I travel a lot for work and for leisure so I am not in town every week, or sometimes not even every other week, for PT. It just happens that I'm here until mid-May and then I'm gone again off and on until July.

Of course, I can't start PT until I am finished with these next two weeks of steroid shots... I'm too swollen and sore to have anything inserted into my vagina.

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.

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).