Sunday, May 29, 2011

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.

Thursday, May 26, 2011

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.)

Tuesday, May 24, 2011

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.

Monday, May 23, 2011

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.

Monday, May 16, 2011

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.

Postponed- third round of steroid injections

I saw my doctor today (Monday) for the third set of injections but we decided to wait a week because there was still bruising and soreness and she wants me to be able to use the dilators again before she does another set of injections. She also prescribed me some desipramine last week, which is probably the only TCA I haven't taken. She started out at a really low dose- 5mg so I don't feel the side effects. Therapeutic dose is 50-150mg. I don't remember if I mentioned this in my last post. I'm feeling hopeful about the injections. And at least I know that the next time I go in for injections that the office will have 30 gauge needles (they had them today, too).

It wasn't a completely useless visit though- I had my annual pap smear. I'm not worried about it because I've only ever had sex with 2 people and the last time was 2 years ago. I had the Gardasil (HPV) injections a few years ago. Those were the most painful shots I've ever had (I'm not counting the steroid injections). Maybe the only more painful shot I had was Bicillin (thick as paste) in my gluteus maximus a few years ago after a really bad strep throat infection (the only one I've ever had). I've been afraid of needles ever since the Gardasil shots.

Friday, May 13, 2011

Post-steroid side effects, part 2

It did turn out to be a blood clot, albeit a very big one. I feel dumb; I should have known better. I eventually was able to remove part of it with some Q-tips. The area where the clot was covering continues to bleed (though not a lot), and I had the injections 5 days ago. I think I may have caused more bruising my poking around with a Q tip and so this week has been especially painful on that side. I also wonder if the bruising in the first place was due to the size of the needle (26 gauge I think). I hope that the 30 gauge needles have come in by Monday when I go back for my third round of injections. I haven't done dilator therapy this week because of the bruising/pain on that one side so I don't really know how much the second set of injections helped. The first seemed to help a lot though.

Wednesday, May 11, 2011

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.

Tuesday, May 10, 2011

Romantic relationships

At divorce.com there is a list of Top 10 Reasons Marriages Fail. #4 is "Sex Problems:"
 Sex is an important part of marriage and the source of many marriage problems. Every marriage requires the act of consummation by sexual intercourse. Failure to consummate a marriage or problems with sexual frequency, quality, and infidelity are all common reasons for marriage failure and divorce.

That bothers me. Amongst the guys I date (young professionals) I always hear that what they want is someone who is brainy and smart, but the reality of it, in my (cynical?) experience, is that they want someone who will have sex with them A LOT and will listen to their favorite bands, including b-sides, and listen to them talk about whatever ad infinitum (the last part is true of all relationships, though). (But I love listening to the people I love, even about the minutia of their day.) So, for example, my last boyfriend, before we even started having sex, would talk about different positions (and the names thereof) and it just made me so scared because in my mind I kept thinking, "how do I tell him about my condition?" There's nothing wrong with him thinking about and voicing his enthusiasm for sex - but where does that leave ME with my vestibulitis / vulvodynia?

The one positive thing about living with vulvodynia is that if I ever get it cured, I will bring to my relationship the knowledge of how important sex is to a relationship. I think a lot of people start out in relationships having a lot of sex-- that initial lust period, etc-- but once they get into dealing with the more mundane relationship things, sex gets pushed aside more and you have it less and less. It will never be that way in my future relationship. Even "boring" sex is good sex. Sex is crucial to a good relationship and no one understands that more than I do. It can be comforting, exciting, kinky but most of all it is emotionally bonding you to your partner and helping to keep that bond going outside of the sexual part of the relationship. Once you stop having sex I think the relationship starts to fray a bit and little things become bigger things and then you have less sex and it's a downward spiral. Sex is so key and I think most people take it for granted because they've never really had to THINK about it the way I have. I will never let sex fall by the wayside in my relationship, even when there are other demands on my time like kids and elderly parents. It's so important to make time for sex. I hope that one day I am pain-free and able to bring this knowledge into my relationship, which will benefit both me and my partner.

Maybe that's the silver lining of all of this-- that when I finally find that special relationship, I'll be able to bring this extremely beneficial knowledge to it. I will be able to remain emotionally bonded with my partner even when other external things around us are tough. I will never give up on sex or "let myself go." It's not a superficial thing; it's a very deep connection that you are forging with your partner. I've not had a lot of sex in my life, but I'm basically a "sexpert" because of everything I've gone through with vulvodynia.

I wonder a lot about what pain-free sex must be like. I don't know if I'll ever get there, which makes me very sad, because I want to experience it, even just once, and because I feel like I have so much to offer in a relationship-- I'm attractive and sexy, I'm intellectual yet goofy and silly, I have a great career that I love, a sense of humor about myself and others, I'm ready to commit, I like being adventurous/being physically active, I like going out with friends/family and meeting new people, I like cuddling and watching movies-- but I know even with all of these things that a relationship cannot be without sex.  Sometimes the emotional effects of vulvodynia get to me and I have to use mental/emotional energy to keep myself from becoming too scared and fearful of a future with pain when I could be using that energy for something else. I think people who aren't familiar with this condition do not realize how much emotional and cognitive energy it saps from the sufferer or how truly lonely this condition is. It bothers me that this seems to be such a taboo subject to talk about, even with friends and family. It's so isolating.

I don't want to seem too down or hopeless but sometimes it can feel that way. The key is not to stay in that head space. Keep an open mindset. Get out and do something. I keep myself busy with meeting up with friends, organizing events and going on weekend trips. But, sometimes I do get sad and withdraw for a few days and that's okay, too-- it doesn't mean you have to be stuck in that place.  I'm pretty outgoing and have a whole life outside of vulvodynia, which is crucial, but which I also think would be true whether or not I had vulvodynia because I just love meeting new people and I am busy with social/networking events or hanging out with friends almost every night of the week.

It does get to me that there is this important part of me that I cannot share with the people closest to me without feeling ashamed and I'm not sure what to do about it. I try to talk about it, but I can tell people, even close girlfriends, are uncomfortable so I stop. My guy friends have actually been more understanding. Most people aren't ready to hear about vulvodynia because we still live in a kind of puritanical society, where everyone is having sex and we see it marketed in pop culture and movies and television but we're not supposed to talk about it. Repression. Suppression. These are not a good things-- for society or for individuals.

Monday, May 9, 2011

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.

Wednesday, May 4, 2011

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.

Tuesday, May 3, 2011

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.

Monday, May 2, 2011

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).