Vulvodynia

[PWhite]

Any insight and information that you can provide would be greatly appreciated.
I have a very funny feeling that my daughter has self diagnosed her problem. She has recently undergone a cystocscopy and a laparoscopy (that removed endometrial tissue from her bladder) but symptoms persist. She is in chronic pain with a responsible job and these things are just not lining up.

[Edson!]

I am assuming that she received histologic confirmation of the presence of both ectopic endometrial glands and stroma. This seems like a real bugger to get control over--and so many with it are miserable from the pain of endometriosis--this tissue can just keep popping up and expanding just about everywhere it seems. I think she may need to go back to her GYN or see a subspecialist-- perhaps someone that can help her dial down the hormonal feed for the growth--if that is indeed the issue. God bless her and help get this straightened out soon.

[PWhite]

As I mentioned, Edson, on the 25th she had her second laparoscopy, two weeks after a cystoscopy. Endometrial tissue was removed from her bladder wall and elsewhere as well as scarring from her uterine ligaments....and she still has vulvar pain.
She has recently been involved with fertility treatments and I swear that the screwing around with her hormonal status has contributed to this situation.
But what the heck do I know...She is a forty year old accountant and I am only sixty five year old Nurse.
...but I AM her MOTHER and I am flummoxed by the run around she has endured.
I post this tonight because she verbalized a suicidal ideation today and I am desperate to help her.

[Edson!]

Please try to get her back into see someone ASAP. I have heard too many times from others, the pain can become unbearable. I want to cry when I thrink about it; b/c what some people may not consider is that constant intense pain can cause you to become so utterly incompacitated...you begin to feel like you don't have a life and you might never have one again. I am a big believer in the fact that chronic intense pain can definitely lead to acute depression.
There's hope, but it's getting the particulars of her situation worked out that's essential. She may be a high achiever...a Type A or something close to that. It's hard to be like this and be incompacitated by dominating pain. And these women aren't being pansies either.
Lord, from some of the migraines I can experience alone, I just can see how people would just like to go to sleep and not wake up. But I am very sensitive in the quarters in which she is struggling with pain--a lot of nerve endings in all that viceral tissue. Of course I am far from advocating ending it all so to speak. It's just that I know what it is like to be so dominated by pain at times that it stops everything in your life. In fact, it makes me downright angry, which only ups my diastolic BP and makes things worse. Then as many know, depression is anger turned inward many times. Then when you finally do get some control over it, you have all this catch up to play.--very overwhelming.
God's grace and help to her ASAP. You are a mama, and mama's always worry and care about their daughters (all their kids really, but as women, we can tend to relate well in our struggles.) I pray she finds some relief soon--and that she keeps in sight that relief is out there and there is hope for her to return to a high functioning life. I just have to give you hugs over this one mama Paula. No mama wants her children, grown or not, to suffer endlessly. Please talk with her and help her to see that there is hope. It's just a matter of getting down to her specifics--and in the meantime--getting some decent pain control so that she can function.
Hugs again.

[PWhite]

Edson...thank you for your sensitive and understanding reply and I can't tell you how much I appreciated it.....You do have her "pegged".
She is a Type A, overachiever with resources strained from constant pain without resolution after undergoing every diagnostic workup you would like to mention.
She sounded better today and has an 8am appt on Monday with a practice that deals with this type of stuff. I told her to call me after her appt while she is on her way to work. I had never heard of vulvodynia before and I can't believe what this does to people.

[Edson!]

I'm glad she is seeing a specialist.
If a person is a Type A personality---or at least something close to it--it really bites to have a chronic problem.

The good news for me is that I haven't had to see my rheumatologist for SLE nearly as much since I started seeing this alternative health practitioner. It's not vodoo. It's just sensible stuff w/ oversight, consistency, self-education, wellness practice.

But recently I've had to take my daughter to a few different docs, and it really gets on my nerves sometimes--all the running around--for the reason that it cuts so much into getting other things accomplished. My other responsibilities get pushed back. What are ya going do? Sometimes it's like everyone and everything wants a piece of you, and it's just too darn true about the 24hour time limitation for each day.

I'm to the point now that I actually prefer email to phone calls most of the time. I let students have my cell number for special problems, etc, but I far prefer to deal by email.

I really do hope she gets the help she needs, so that she can enjoy an optimal quality of life.

Take care,