A very disheartening diagnosis.
When I walked into my gynechologist's office this morning, I expected one of two possible diagnostic outcomes:
- You have problem X and we treat X with procedure/drug Y.
- We can't find anything obvious wrong. We know you're in pain, but we can't determine what is causing the pain.
However, I received two (!) absolutely unexpected diagnoses:
- You have vulvovestibulitis - a swelling of the minor vestibular glands in the mouth of the vulva. It has inflamed your entire genital area.
- You have hyperkeratotic dystrophy - a skin disease that is treatable. But it has to be biopsied to confirm the diagnosis. The biopsy is in two weeks.
My initial reaction was "Great! What do we need to do to fix the vulvovestibulitis?" That's when things quickly got grim.
Dr. Whitefield stated that the cause of vulvovestibulitis is unknown. A number of theories have been postulated and then dismissed. I started to get a little concerned when he told me this. Things are never good when the cause is unknown. But then the hammer dropped: there is no procedure Y or drug Y that treats the condition. Treatments are partially successful at best.
He then went on to describe the treatment options. I just sat there, with the little paper sheet over my legs, stunned. And then I broke down crying. It never dawned on me that I could have yet another significant disorder with an unknown cause and limited treatment options. I thought I paid my dues with Chronic Fatigue Syndrome.
I'm already a member of one chronic disorder community. I absolutely do not want to join another community of people desperately searching for reasons and treatments.
I usually don't get all hung up on fair vs. unfair. But this time, right now, this feels so unfair. I am a good sport. I do everything I'm supposed to do to get better. I have a pretty good attitude about the whole thing. And as a result, I function at a fairly high level for someone with CFS/FMS. But to get slammed by yet another disorder, well, that just sucks.
Let's see: what are some adjectives that describe how I feel: stunned, crushed, mortified, slammed, etc.
While crying, I thought maybe I was overreacting, so I apololgized to Dr. Whitefield for being a wimp. He said, that no, I wasn't a wimp, that this was one of the most difficult diagnoses he gives. It's a very big deal. Which on a minor level made me feel a little better - I'm not a wimp. But on the grand scale it was just crushing. No one ever wants to receive "one of the most difficult diagnoses" your gynecologist gives.
Plus, the impact this has on Peter. The poor guy. He's never sick and yet his girlfriend has Chronic Fatigue Syndrome and now Vulvovestibulitis. He has been a real sport and he was super supportive today. But it's still not fair to him.
So there are some treatment options - Dr. Whitefield stated that this is now the number issue in my life and I have to get on top of it immediately. So here's what I'm going to do:
- Back on a tri-cyclic antidepressant. This time instead of amitriptyline, I'm going to try imipramine. Supposedly the side effects are not quite as bad.
- Get my Interstim fixed ASAP. Dr. Whitefield was adamant about this. And, now, I am too. However, this may mean I may never be able to skate ski again. And that's just too crushing to even think about right now.
- Research. Research. Research. I have to say that I'm so disheartened right now that I'm just not up to Googling my way through this. I will in a few days.
- Sitz baths - they help my butt which is the dystrophy thing. And I think they help the vulvo a little bit.
- Ice packs at night. Isn't that a sad statement. gads.
So I am sure I'll get past the stunned, depressed stage and become an expert on vulvovestibulitis - which may actually be very difficult. There is basically no vulvo info (but lots of volvo info - why couldn't I have a Volvo instead of Vulvo?) on the internet. Great...sigh...
However, I am actually pretty confident that I'll work my way back to a highly functional level. But I am just sort of squashed flat this evening. sigh...
7:44:47 PM 
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