Mast cells found in vulvar tissue biopsies in a large number of Vulvadynia patients

[ihurttoo]

Okay, I am probobly the only one here that didnt know this, but just in case there is someone else out there who didnt know this either, I will pass this on.

I was organizing my med records, and came across my surgical report and findings for when I had my Vulvar Vestibulectomy. I knew the tissue they removed was biopsied, but I never realized it contained mast cells, until now! Obviously, I was intrigued due to the IC- mast cell connection. So, I did some poking around on the internet, and come to find out, there are several studies confirming that there are mast cells in a lot of vulvar biopsies taken during vulvar vestibulectomies. Here's one:

www.aafp.org/afp/20060401/1231.html

Since IC and Vulvadynia and/or Vulvar Vestibulitis are so frequently co-existing conditions, it makes sense to me now. I just never knew that the mast cells were part of the connection!

Well, in poking around, I also discovered an endometriosis and fibromyalgia connection to mast cells too! Sure enough, I have Fibro, Endo, VV, and IC....all conditions with mast cell components! Here is the endo article:

www.tufts.edu/sackler/pharmocology/faculty/theohairdes/documents.ajri-crh-endometriosis.pdf

This is the article linking Fibromyalgia to mast cells in some patients:

www.ncbi.nlm.nih.gov/entrez/query/fcgi?cmd=Retrieve&db=PubMed&list_uids=9310112&dopt=Abstract

Like I said though, I am probobly the last one here to figure this out! But, I thought it was pretty interesting since it links everything I have! One of the articles I read even points to the autoimmune connection and the mast cell link! It also makes sense why so many ICers who have multiple chemical sensitivites seem to have IC as well Endometriosis, Fibromyalgia, Vulvadynia, and Vulvar Vestibultitis! It also makes sense to me now why those of us with one of these, seem more likely to have the others than the general population.

I cant believe this part is just now hitting me! I feel like a big dummy for not realizing this already! I am sure everyone besides me already knew this, but although I knew IC bladders often contained the mast cells, I never knew all my other diseases did too!

Come to find out, Cyclosporine A inbhibits mast cell production. That must be why so many ICers are responding to that course of therapy. Here is the link showing this: www.ncbi.nlm.nih.gov.entrez/query/fcgi?cmd=Retrieve&db=PubMed&list_uids=1696892&dopt=Abstract

I am sure everyone else here has probobly already realized this, which is probobly why so many are trying Cyclosporine A right now. I just never made the connection. I am definately going to email the info to my Dr. and set up an appt to see if he will let me try it too. (Since I have already had a hysterectomy, being of "child bearing age" won't be an obstacle.)

Many thanks to ICLori and the others who have paved the CyA path! I am sure I will have lots of questions after I read all those threads again!

Hope someone else finds this interesting too! Hugs, Amy


P.S. I would have posted this on the OTHER CONDITIONS board, but when I first created this post, I didnt realize the endo and fibro connections too, so my post only contained the Vulvadynia/VV stuff. Then, when I realized the other too, I edited it to add the other. I would move it, but I dont know how to cut and paste yet. :confused: Sorry!

[mich2604]

Amy I did not know this, so thank you for posting it. Is that why my Dr prescribed and allergy med?

Oh, and i tried the first link and I could not open it, not sure if it is just my computer?

thanks again!

[ihurttoo]

Thanks for letting me know! I rechecked the site address, and cant figure out what is wrong with it, but it isnt your computer, it did the same to me when I checked it, so I put up a new site. There were lots of articles on all of them though...I just googled "vulvar biopsies mast cells", "endometriosis mast cells" and "Fibromyalgia biopsies mast cells", to find the articles. I kept checking the address and cant find my typo. (No sleep last night!) But, there are govt. sources for all of them, which made me feel good. It isnt just some random Dr. out there by himself saying it is there. I'll keep trying to figure out where I keep messing up trying to link it. Thank you! Hugs, Amy

[Briza]

No, Amy, I didn't know this!
Nor did I know enough at the time to ask to be checked for mast cells when I had my bladder and vulvar biopsies. Have read my bladder biopsy reports and didn't say anything about mast cells.
Only thing I was told about my vulvar biopsy was that I had excessive blood vessels in the vulvar tissues, which I guess means inflammation.
Definitely not submitting to either of those procedures again, but interesting to know, since I've never never tried atarax or any other antihistamine. But I'm doing pretty well right now and antihistamines give me the eeby jeebies,skin creepy crawling feeling, so will continue on the same meds for the time being.
Yes there are so many connections between IC and VV and vulvodynia. They are certainly related and have some common etiology (is that the right word????)

[Birdie]

I have fibro, maybe RA (jury still out), vulvodynia and IC. So it IS interesting... sounding very much the same as you.

What are mast cells? I have no idea what that means, exactly.

[sami4]

Yes mast cells are the culprit in most nerve pain problems, and many diseases (I am thinking of MS). Also a new study done in 2000 in the Journal of Urology by G. Chiang, P. Patra, et al. titled," Pentosanpolysulfate inhibits mast cell histamine secretion and intracellurlar calcium ion levels is an alternative explanation of the beneficial effect in IC."
Translation: Elmiron may not just coat the bladder it may inhibit mast cell secretion.
Sammi

[jorkale]

what did they do to you to take the biopsy? did it hurt? i don't know if i can take one more ounce of pain. I had mast cells in my bladder when i had a cystocopy. I'm crazy with pain.
thanks..shelley

[Briza]

what did they do to you to take the biopsy? did it hurt? i don't know if i can take one more ounce of pain. I had mast cells in my bladder when i had a cystocopy. I'm crazy with pain.
thanks..shelley

Not fun. It's done in office by gyn, I was given local anesthesia shots in the vulvar area and I had to be held down by two nurses. Extremely painful, I was not prepared, just desparate, and didn't know about ICN at the time, nor vulvodynia in any form, and really didn't do any research or ask too many questions. They cut a chunk out the vulva at the entrance to the vagina, in the real soft area, took a long time to heal and was a painful healing process. That was about 3 yrs ago, and I still have a little knob of scar tissue that is sensitive at times. This procedure does not dx vulvodynia or vv, just rules out other more serious conditions. I wish I would have been told that it was going to be so painful and stressful, I would have made sure I had someone with me to drive me home and wish I had made arrangements to take a few days off from work. Unless you and your dr suspect that you might have something more serious going on, I personally, would avoid the procedure like the plague. Have talked to some of the ladies here and they had similar experience like mine, a few apparently had a higher tolerance for pain and it wasn't so bad for them. Anyway, all I got was a dx for inflammation, duh, I arleady knew that, and that is was many of the ladies told me their dx was, too. I too, was crazy with pain and raw burning feeling for quite a while, but I am much better due to my meds..see list below, and sometimes just time makes things better.
Best wishes

[ihurttoo]

WOW, Bri-, I mean, WOW!!! I had no idea ANYONE endured such a barbaric biopsy! Mine was taken while I was knocked out during another procedure. It would have taken more than 2 of them to hold me down to cut off a sample down there with ME awake! I cannot even imagine that kind of pain!!! Thank God I was knocked out during mine! Whew! I winced just READING that!!

[mich2604]

OMG, i couldnt even imagine that!!!! Ouch! Thanks for sharing this by posting, hopefully it will help others prepare.

I had a colposcopy and i guess my dr did not see anything abnormal, no biopsy was taken. She just said very very bad case of VV.



:grouphug:

[Briza]

Yep, that's the way it went. Like I said, I posted about it quite a while back, and other ladies had similar in office experience. And drs always wonder why I start shaking and sometimes am disagreeable at my appts. ??!! No, I don't see THAT gyn anymore, I have another, thank goodness, he's never hurt me, but understands because of my past experiences with painful procedures (the biopsy and the hydro disaster) why I get very nervous at my appts. I do better now, but I used to have to take an ativan before any appt, otherwise, I'd be crying before I even saw the dr.
Anyway, if that wasn't enough, the biopsy started bleeding so badly they had to stitch it up...I don't know if that's standard procedure but they were definitely getting concerned about the bleeding. :toilet:

I've guess I've probably scared the heck out of you guys regarding the vulvar biopsy. I apologize. Obviously this procedure has it's purpose, but unfortunately both the gyn and I were ignorant. Based on my symtpoms, HE should have been the one to bring up vulvodynia & VV and try some treatment options 1st, before digging into to me. I was ignorant because I didn't do my research and ask enough questions. Had I KNOWN about vulvodynia and vv, I would have avoided this procedure and discussed VV & vulvodynia with him, to see if he new anything about it, and when I found he didn't, I should have found another gyn.
Anyway, should any of you find yourself in the position that you have to have an in office vulvar biopsy, let me know, I can give you some tips on what I think would have made it and the healing process easier.

[jorkale]

yeah..well, that just about scared the livin' bejeezus out of me...well, to get you all up to date...the University of Iowa called me today...i think they heard my desperation in the message i left...instead of march 12th because i told them i would be dead by then...i am going this friday at 8:00 am. it's a 2 hour drive for me to the Vulvodinia Clinic..but that's nothing. I really need help fast and cannot do this any longer. the pain is insane and honestly work helps me because it takes my mind off of it. i have bacterial vaginosis...and i really feel, if i can get rid of that..a lot of my symptoms will stop. they seem to go hand in hand. i am pulling my hair out at answers..and probably like a lot of you..you grasp at just about anything. i have tried a lot..so i am ready for another opinion. well, thanks for the biopsy info. i had a biopsy when i had my cysto...i guess i should take my pictures..of everything. including the 11 fibroids that i just had removed. the largest one was the size of a large lemon pressing into my bladder. anyone want to see what that looks like..email me...serious stuff. well...it so sick to even think that it makes me feel better to know i am not alone. thanks everyone...very much...shelley

[mich2604]

Shelly,

that is great news!!!!!!!!!!!!!!!!!!!!!! Im so glad that you are getting in this week......someone was listening to our prayers. I hope that you get some answers ..and help to ease your suffering. I will be thinking of you and sending you healing thoughts on Friday.

I dont know how you can work.........you are super strong!!!

[jorkale]

thank you so much for your prayers. i don't know how i go to work really. i have to though. both of my kids are in college. it seems to take my mind off of things. i am the director of a drug testing program. yeah go figure and then ask me if i think i can pass my own test! i wouldn't know where to start to even file for disability. it seems like such a long road. and what kind of money do you get for that? not much right? my job is pretty good and our kids are both in colleges outside of illinois. i would feel so bad if i crushed their dreams..even though i know we would figure out a way to do it. i'm insane today. i woke up 3 times last night...that's not too bad but i swear i think my urine smells like garlic...isn't that wierd. my stomach hurt last night...sore to touch like my muscles were contracting. this is the most bizarre illness ever. i just want it to go away. oh yeah..here's the clicker.
i was just promoted to a manager, got a raise, and need to hire someone within the first quarter of the year. anyone want to work??!!! so the pressure is on. it's really not that bad. it gives me something to think about and not focus on me. it helps. well,it's really early here..our son is packing to go back to school today. i better run. thanks again and i promise to keep you posted. shelley