Edit: I WAS CURED AFTER 22 YEARS! I had a vestibulectomy Dec. 2016. The recovery was easier for me than having sex ever was. It took about 5 weeks. I have included my recovery photos. Look for the blogpost "I'm Cured!" and "My Vestibulectomy".

I’m a great woman with a pissed-off vulva. I have “primary vestibulitis." Most people are uncomfortable discussing their genital pain in public. My hope is that my obsession to find help for myself will make your experience shorter, easier, and less painful. P.S. Recently "vestibulitis" has been renamed to "vestibulodynia."

Vestibular Mast Cells

In patients with vestibulitis, there is an increase in neurons and mast cells. One area of research done in the past was to biopsy an area of the vestibule and look at nerve cell and mast cell counts. Both are much greater in people with vestibulitis

(as an aside, the concept of increased enervation and proliferation of mast cells is cited as the reason to have a vestibulectomy. I would advise you not to have surgery.)

My father-in-law (who is a pathologist and looks at mast cells under a microscope professionally) and I emailed back and forth on this topic. 

"Is there any way that you know of to reduce mast cells? What they do to the nerve cells right now in vain is to apply topical lidocaine to numb them or capascin to burn them into submission or cromolyn cream which is an asthma medication. I have done all except the capascin.

I think one component for me is an immunological over-reaction (like sinusitis). This is a component that no one has picked up on. Possibly because there isn't a treatment plan (that I have discovered) known to work. 

I don't know what they mean in the below articles when they talk about "degranulation". And I don't know much about this area in general. I welcome any thoughts or explanations you have. 

Here are a few overviews on the subject of vestibulitis and mast cells:

His reply email:
Re: degranulation. The potent chemical inflammatory agents released by mast cells are contained within numerous granules in the mast cell cytoplasm.  The granules are actually the way the mast cell protects itself against the chemicals.  Under the microscope these are tiny deep blue granules when the tissue is stained with the common stains a pathologist uses.  At the appropriate time during the normal inflammatory process one or more of these chemicals is released by the mast cells into the surrounding tissue.  When this occurs the granules disappear and become less numerous in the cytoplasm of the mast cell.  This process is called degranulation.

...The inflammatory process involving mast cells is very complex.  Apparently, under certain poorly understood conditions the chemicals released by the mast cells can have a negative effect rather than a desired effect.  Some of the negative effects seem be on nearby pain nerve fibers.  One of the articles you sent me says that the number of nerve fibers increases by a factor of ten.  Impressive.  Elsewhere, it is mentioned that some of the factors may act on brain tissue.  This does not surprise me since there is similar negative effect of inflammation at remote sites (teeth, abdomen) on the heart and the blood vessels.  As you probably know gingivitis can accelerate atherosclerosis.  The point is that inflammation can be harmful even at anatomic sites not related to the inflamed organ.

When I first start medical school, in 1964, one of my professors said "if one understands inflammation then one will know all there is to know about medicine".  How true.  But, we have so much to learn.  We have just begun to scrape the surface.

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