provoked vestibulodynia

[growingweary]

Hi I am new to this forum so I wanted to introduce myself. I have been struggling with this condition for almost 5 years. First with a diagnosis of vestibulodynia, levator ani syndrome. Had a cystoscopy done and it did confirm IC but my primary issues occur when I sit. Of course the main issue is the vestibule pain- argh, does anyone know if vestibulodynia is a symptom of PN? I have burning urination too, no frequency, no urgency- barely pee during the day. But as I said was diagnosed with IC. I did just discover through mri that I have lipoma on my lumbar sacral area. I also did get the mri done with Hollis Potter and will try to post it to find out from you veterans if it appears anything is entrapped Here goes:
MRI of the Pelvis

MRI of the pelvis was performed utilizing coronal and oblique axial inversion recovery, followed by coronal, sagittal axial oblique axial fast spin echo techniques. Clinical concern is pudendal nerve entrapment and the patient reports right and left sided vulvar pain, left anal pain and suprapubic discomfort, but denies clitoral or vaginal pain.

There us anterior angulation of the coccyx, which is minimally deviated to the right. The anococcygeal ligament appear symmetric as is the coccygeous muscle. The sacrospinous and sacrotuberous ligaments appear symmetric and there is no scar entrapment of the pudendal nerves adjacent to the ligaments. Hamstring tendinosis is seen without ischial bursitis. The pudendal nerves in the posterior margin of Alcock’s canal appear unremarkable. There is scar on the left surrounding the superficial perineal muscles at the vestibule, extending to the lateral side wall of the Alcock’s canal and abutting some of the anterior inferior perineal branches of the pudendal nerves that extend to the anterior margin of the anus. This is noted on series 6, images 17 through 21. This is also present but to a much lesser extent on the right. The posterior inferior perineal branches appear unremarkable. The levator ani muscles appear symmetric. The obturator internus muscles also appear unremarkable. There is some resorption of the inferior margin of the pubic symphysis, with a projection of bone off the posterior margin of the right pubis, seen on series 6 images 38 and 39, abutting small branch vessels but not directly abutting the dorsal nerve to the clitoris. Dorsal nerves to the clitoris appear fairly symmetric. No pelvic adenopathy is seen. There is some prominence of the pericervical venous plexus but without features to suggest marked pelvic venous congestion syndrome. Varices do extend into the anteroinferior margin of Alcock’s canal, more prominent on the right than the left.

There is no occult fracture or osteonecrosis. There is thickening of the greater trochanteric bursae but no bulky bursitis. Images obtained anteriorly demonstrate no appreciable scarring around the genital branches of the genitofemoral or the ilioinguinal nerves.

No regional adenopathy is seen. Small foci of diminished signal intensity are seen in the uterus compatible with small degenerative leiomyomata.

Impression
MRI of the pelvis demonstrates scarring of the pelvic floor localized around the superficial perineal muscles, extending to the left lateral margin of Alcock's canal adjacent to the pudendal nerve, as well as around the anterior inferior perineal branches to the anus. There are slightly prominent veins in the Alcock's canal inferiorly without evidence of extensive pelvic venous congestion syndrome. The nerves more posteriorly adjacent to the sacrotuberous ligaments appear unremarkable.

Thank you for any advice/info you can offer me

Weary in PA

[carolynm]

Since you are in PA, how about making an appt with Dr. Conway (I think he is in NH).???? Sounds like you need a PN specialist to help you decipher what is going on. I'm still waiting for my Potter MRI in September....hope you can find some answers.

wishing you the best,
cari

[Violet M]

Hi Weary,

Vestibulodyina can be a symptom of PN/PNE since the pudendal nerve innervates the vulva. Burning urination is also a symptom of PN/PNE.

Looks like you have scarring in the area of some of the PN branches. You may want to discuss your report with a couple of the PN docs and see what they say. I'm not sure Dr. Conway puts much stock in the MRI -- unless he has changed his mind about it but since you live on the east coast it would certainly be worth asking him what he thinks.

Take care,

Violet