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.)

Post-steroid side effects

I have what looks like normal bruising (black and blue and flat) on my vestibule but I also have what looks like a round black mass that is just beyond my vestibule. At first I thought it was clotted blood from the injections that I had on Monday (it's Wednesday today), but as I tried to move it/remove it I found that it was actually tissue. It is black and I have pain- burning stinging and just general ouch pain when I touch that area and generalized burning pain around my vestibule today. I emailed my doctor photos asking her if it was a normal side effect but I doubt she'll have a chance to look at the email until later tonight.

Second set of steroid injections

I had my second set of Kenalog steroid injections yesterday. Ouch again! My doctor is going to order smaller needles (I think she used 26 gauge but I told her I want 30 gauge). The swelling and soreness isn't nearly as bad as it was last week. It's actually not bad at all. Also late last week I noticed a big improvement in my pain. I still had pain when she did the Q-tip test yesterday (Monday) but I think it is getting better. It's really only bad when she applies more pressure than the Q-tip touch to the area and only in some specific spots. She says I am one of the worst cases she has seen (and she sees a lot), but I am hopeful that I'm getting better. My doctor decided to put me on desipramine (a TCA) just to help my mood. She started me at a really low dose. I'm still taking 900mg of gabapentin each day.

When we are done with the series of steroid injections I'm going to try acupuncture. It's been shown that it can help with neuropathic pain.

What I'm really frustrated with is how this has interfered with my dating life and relationships. I think I would be married by now if not for this condition. Sometimes I think those who only discovered this condition after they were married are luckier in that they have in built support system. But I guess they also have a lot more to lose if their spouse isn't supportive, or gets frustrated and loses support. One of the main problems I've encountered in relationships is men thinking they are entitled to other sexual things because we can't have vaginal sex. It is the attitude of entitlement that makes me not want to give it to them-- if they were supportive and loving then my reaction to their reaction would be different. It's, of course, a really complicated dynamic and there is no way I can give it justice here so these are just surface thoughts. I've also found that they grow angry at you and blame you if they get aroused etc. It makes me not want to be part of any affection because a lot of guys have this mentality that affection ---> sex.

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.

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).