(098) The Value to Patients of Immunohistochemical Staining of the Vestibule with CD117 and PGP9.5
Authors: Goldstein S , Yee A , Goldstein A S , Goldstein I 
Published: May 2023

Introduction

Neuroproliferative vestibulodynia (NPV), associated with severe entrance dyspareunia, is diagnosed by an abnormally high density of nerves and mast cells as established by Bornstein. This cellular pathology cannot be appreciated even on vulvoscopic examination, making diagnosis only clinically suspected after exclusion of all other forms of vestibulodynia. Once NPV is suspected, a recommended treatment is complete vestibulectomy. Surgical specimen are sent to pathology for routine staining with hematoxylin and eosin (H&E) which cannot confirm the suspected diagnosis of NPV.

Objective

We wished to assess value to the patient of being made aware of pathologic findings in excised vestibular specimen stained by CD117 and PGP9.5.

Methods

Since 2019, patients suspected of having NPV who underwent complete vestibulectomy had both routine H&E and specially ordered CD117 and PGP9.5 staining of their excised specimen. Patients were asked post-operatively the benefits of this information.

Results

56 specimens were studied. Tissue sizes varied from 5-11 cm long x 0.5 – 4 cm wide x 0.1 – 0.7 cm thick. Based on H&E staining, all patients were found to have benign squamous vestibular epithelium with chronic inflammatory infiltrate at the superficial sub-epithelial stroma (Fig 1). The inflammatory infiltrate was composed of mature appearing lymphocytes in 87%, and a mixture of lymphocytes and plasma cells in 13%. Eosinophils were noted in 25% of cases. No ulcers, dysplastic or malignant cells were noted in any specimen. The diagnosis of NPV was confirmed by CD117 and PGP9.5 staining (Figs 2, 3) with excess mast cells, (&gt; 8 cells per high power field x400) noted in all cases. Every patient in this cohort valued the pathologic information regarding the positive CD117 and PGP9.5 staining as final confirmation of their NPV diagnosis. This was particularly meaningful for those patients who had experienced medical gaslighting. Patients consistently used the term “validating”, saying the pathology report provided “tangible evidence” of a “physical problem wrong” when they had been told their “pain didn’t exist”. One woman said, “having that knowledge was priceless. It's one thing to have a belief that I had neuroproliferative vestibulodynia. It's another thing to KNOW. To have that indisputable proof is one of the most gratifying and emotional moments in my healing journey. It shows that there was something wrong. It wasn't all in my head. I didn't need to ‘just relax’.”

Conclusions

The clinical diagnosis of NPV is based on excluding other forms of vestibulodynia. The pathologic diagnosis of NPV is not based on routine pathology staining but on specialized IHC staining with CD117 and PGP9.5. If a patient is ignored, misdiagnosed, or invalidated by a provider, the patient loses self-confidence and faith in their own abilities. Clinicians need to be aware that not having visible signs when a patient complains of symptoms does not mean the dysfunction does not exist. Providing pathologic evidence of the root cause of entrance dyspareunia plays a significant role in the healing process.

Disclosure

No