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.

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.