Steroid injections, 3rd round f/u and other things

I've been using the dilator and sometimes I think the pain has decreased and other times I feel I am having pain in new places - like the 12 o'clock position. It is so frustrating.

I talked to my doctor on Friday and she kind of said that she didn't think the steroids were working since the pain hadn't decreased with the dilator use and that with the steroid injections the effect would be pretty immediate, which is the impression I was under also. We decided to up my desipramine dose to 100mg/day and my gabapentin to 600mg tid. I have the best doctor.

We talked about Botox and my doctor impressed me with her knowledge of it after correcting an incomplete idea I had of its mechanism of action. The problem with Botox is that there are not enough vulvodynia pts in her clinic who would need it and so the cost is not justified. I have said that I will pay out of pocket the full price for a vial of Botox. I want this issue gone more than anything.

Steroid injections, efficacy? and side effects of round 3

Well, I had my steroid injections on Monday and my pain is definitely not as bad as it was after round 2 but it is still present. Last night I used the dilator and had significant pain (I would say 6/10 in terms of pain upon entry and pain with movement/pressure). I feel scared that these aren't going to work and I will soon exhaust all treatment options. Then what?

On a side note, right now I have generalized pain (I think I only get this unprovoked pain the day after I use dilators or one or two days at certain times in my cycle- I usually try and keep track of when the generalized pain occurs on my calendar). Anyway, I would like to take a Vicoprofen but I don't feel that I can or should.

(Also, another helpful pain reliever: ice/cold gel packs help with the generalized pain but I basically have to lie down and do nothing, which makes me feel pretty useless.)

Side effects, steroid injections round 3

Yesterday had lots of soreness but today not so much-- only when I sit totally upright. I'm not going to look for bruising unless I feel a different level of pain because it freaked me out so much last time I saw it. I have a pain  around the 12 o'clock area, which is weird because I don't think she injected any higher than 2 o'clock.

I don't want this blog to seem all doom and gloom-- I have a big part of my life that isn't focused on vestibulitis, but this blog is purely to shine a spotlight on my issues with vestibulitis/vestibulodynia/vulvodynia and this is where I am in my struggle with it right now. Some days are more hopeful than others. I've undertaken this endeavor (blogging) with an enthusiastic spirit, not a cynical one and I hope to reflect on my experience as candidly as possible.

Steroid injections, third round and some complaints

Today was my third round of steroid shots. I had 3 shots in total. We used the 30 gauge needles and I felt that they made a HUGE difference in the amount of pain I experienced during the actual needle-sticks. I think the previous needles were 26 gauge.  It also helped that she sprayed the area with "hurricane spray", which is benzocaine, but I am unsure of the concentration. It really burns for about 30 seconds and then the area feels numb. She also put 2% topical lidocaine on the area before injecting. We are going to do 2 more rounds of injections over the next month.

My doctor says I have pain basically down the left labia and into the right labia-- from 2 o'clock to 9 o'clock. I don't know how effective the last round of injections were because for the first week afterward I was too bruised and sore to use the dilator and by the second week I was so depressed and feeling like I wanted to quit treatment that I only tried the dilator once. When I did, I felt OK-- there was some pain, particularly at the 7 o'clock position. I think it is progressively hurting less, but I'm not sure. Even though I want to quit treatment I keep on because I realize the quitting part is just the depression that comes with the territory.

I know I previously wrote that my doctor never makes me feel rushed-- and that is true, she doesn't-- but I always feel rushed because I know I'm overbooked on her schedule (and it is only a 15-minute appointment, to boot) and because I can hear her in the hallway going from patient to patient. It's not her fault that they only book for 15-minute appointments or that I there are overbooked pts.

One thing that bothers me is that I find it difficult to have a substantive conversation about my concerns or questions when I am undressed. Being more assertive about this and asking the questions I want to ask would make me feel like I'm asking for too much.

The doctor-patient relationship is inherently delicate and perhaps even more in this case because it's not as if I could easily find another doctor, especially one who I like as much as my current one, who is knowledgeable and capable with regard to treating vestibulitis. There is a strong motivation to not risk rocking the boat here that puts the patient in a further position of weakness.

My history

I guess I should write about my medical history. It is pretty uneventful. Unlike a lot of other vestibulitis sufferers, my history is negative for chronic yeast infections (have only had 2-3 in my lifetime), UTIs, interstitial cystitis (IC), IBS, fibromyalgia, migraines, and allergies.

I'm currently taking gabapentin (oral) 900mg/day split into 3 doses and desipramine 5mg/day. When the pain is really bad I sometimes take a Vicoprofen.

Who knows what causes vestibulitis? I wish I knew, but the cause has not been definitively established. Some claim it is caused by out of check hormones, but I don't know about that. I haven't been on birth control for any period of more than a few months in my life and I rarely have painful or heavy periods. My cycles are so normal that I could tell you what day of the month I will start on in any given month and be within +/-1 day. Also, I had all my hormone levels checked by an endocrinologist back in 2004 and everything was normal.

As far as I know, I've always had vestibulitis, though I can use tampons without pain and that has also always been the case. I was originally diagnosed with this condition in 2004 by Susan Kellog-Spadt (or Spadt-Kellog, I always forget). She is a nurse practitioner in Philadelphia; she also has a PhD in sexual medicine. I think that is why in other blogs or forums people refer to her as Dr. NPs can be just as amazing, if not better than some doctors.

At the time I saw her she was really into using 0.025% capsaicin cream as a treatment because it supposedly depleted the area of substance P, a neurotransmitter associated with inflammation and pain. I don't know how effective this treatment was because I didn't try it for very long. She also had me applying estrogen and steroid creams once a day. She really pushed the capsaicin but she also mentioned to me that my other option would be steroid injections. At the time, that scared me so I chose capsaicin.

I basically gave up and ignored the problem as much as I could. I used lidocaine to deal with painful sex. My gynecologist down here didn't know anything about the condition-- I seemed to know more than she did, which was so so frustrating. She even made a comment one time when I asked for lidocaine that I thought was really inconsiderate- she said, "well that must make it difficult for spontaneous sex." I never saw her again after that.

Then in 2007 I went to see another doctor, one who specialized in this and was at one of the major academic medical establishments here. Before he even did the physical exam he told me that the only way to cure vestibulitis was through surgery and then proceeded to draw an illustration of how the surgery would go. That scared me to death and I never went back until, finally, last year I couldn't handle it anymore. This time I found the right doctor, though.