WELCOME

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."


UPDATE: Valium Again, but Suppository Form

Update January 30, 2014
Between the original post and this post, my doctor had me use compounded valium suppositories instead of putting a pill meant for oral ingestion into my vagina. The idea of using a valium suppository is that it allows the valium to be more available for absorption by the pelvic floor. I didn't notice any improvement, but there is research to support this idea and it is an "easy-try".

Had it worked, I the compounding pharmacist said he could "trick it out" with gabapentin and other meds.

I believe the oral wafer clonazepam .125 is working. I take it orally four times a day.

She also had recommended use of aspirin to reduce overall body inflammation (this was my hypothesis, not hers). I took one per day (read the safety data but for most people it is fine). But this time when I went in, I mentioned an alternate to the overall inflammation hypothesis: mast cells. I haven't written about or researched intensely mast cells yet. The basic idea here is that people with vestibulitis have increased neurons and mast cells in their vestibular area. I lifted this from a research abstract, "Mast cells are found resident in tissues throughout the body, particularly in association with structures such as blood vessels and nerves, and in proximity to surfaces that interface the external environment...After activation, mast cells may immediately extrude granule-associated mediators and generate lipid-derived substances that induce immediate allergic inflammation. Mast cell activation may also be followed by the synthesis of chemokines and cytokines. Cytokine and chemokine secretion, which occurs hours later, may contribute to chronic inflammation. Biological functions of mast cells appear to include a role in innate immunity, involvement in host defense mechanisms against parasitic infestations, immunomodulation of the immune system, and tissue repair and angiogenesis." What this is saying is that mast cells emit irritant chemicals during degranulation. And degranulation is encouraged by aspirin. So out with the aspirin. In with the Benadryl. 

Original post
I did a follow-up with my Stanford vulvar dermatologist Dr. Joanna Badger. No improvement to the vulvar pain since the last visit when she prescribed Triamcinolone Acetonide ointment 0.1% topically. She came up with the Valium idea on her own and so I am back on inserting Valium 3 times per day to see if that helps.

I am also to take oral disintegrating clonazepam .125 four times a day. The benefit of clonazepam is that it is a muscle relaxant and an anti-anxiety medication.




My Biofeedback Machine

I wanted to show you the biofeedback machine that I rented. It is called U-Control Incontinence Trainer. It comes with either vaginal/anal or electrode sensors. I understand that using the vaginal/anal sensor gives a better EMG reading for the pelvic floor. I chose to get the electrode sensors, however, because I have other tight muscles and I figured I could multi-task on my rental. The three links attached will help fill you in on the details. The youtube video does a good job and gives you the information on how to use it and where to get the equipment. A youtube video shows the vaginal/anal sensor. If you use the electrode sensors, you place the yellow and blue connectors to the immediate right and left of your anus. The black connector goes on a bony part of your body like your iliac crest, aka hip bone, and is the ground. There are two sensitivity settings: x1 and x3. The x1 is more sensitive and probably what you want to eventually work with, but x3 also will read the electrical conductivity of your pelvic floor muscles. You may be able to get to the lowest reading (I rarely did), but feel good about just going lower into the A, B, and C range (you can see this on the photo below at the bottom of the unit). It means my nerves were pretty calm.

Overview

I used this for 3 months and now can get to a relaxed state in about 2 minutes. I also learned what sitting and lying positions help relax my pelvic floor.

You can buy or rent this equipment. I rented for 3 months from the company listed on the unit. I made sure my doctor's prescription had "incontinence" on it as one of the symptoms to treat as it is part of the name of the machine proper "U-Control Incontinence Trainer". I have a P.T.'s recommendation, a doctor's prescription, and a good PPO plan and the reimbursement went through. I can't remember how much I paid out of pocket. The company offered to put my rental cost towards a purchase of the machine. I declined, but hope that was the right choice...

Update Nov. 26, 2015
I'm thinking of doing this again, this time as a purchase. To that end, the best price I found online for purchasing this is at http://www.lifematters.com/u_control.asp 

U-Control™ Home Continence Trainer
1 Channel of sEMG
Price $334

Then you add: T3425: UniGel Pre-Gelled Single Electrodes. Package of 100 for $35 (each electrode lasts a while); or the T6050: vaginal sensor for $50, and the cable.




Sacrum: the Sacro Wedgy

If your hips are wonked (one side is rotated or higher), try out the Sacro Wedgy - sacrowedgy.com. I do this before P.T. daily.

The woman you will call to order it from is Cynthia, the founder's daughter. She is passionate and wants to "make it work" for you. I ordered the pink woman's wedgy only to return it for free and get the man's blue wedgy because I am tall. I use two foam lifts under the wedgy to raise me up. 

Boric Acid Journal Article


On my youtube video on "How to Make Boric Acid Suppositories", I received a message saying that boric acid is rat poison. This is true. The commenter wrote, "Boric acid is used to poison rats. If you have cuts or chafes in your vagina, using boric acid suppositories could lead to various side effects ranging from nausea to death." She said to read a specific article about it on livingwell.com. I found the article I believe she referred to at livestrong.com and then pulled up the three references to read with more depth. Two were useless. The third was from a scientific journal "Infectious Diseases in Obstetrics and Gynecology" and seems to be good research. I have linked to it below as it is worth reading.

My take-away as to the journal article's conclusions are: 1. anti-fungals in the -azole category (fluconazole, difluconazole, etc.) are quite effective for treating most yeast infections, 2. boric acid is an alternate treatment to try should a chronic yeast infection be resistant to the -azoles, 3. both should be prescribed and supervised under a doctor's care. The link is below.

(As I side note, I believe the writer to be irresponsible, having written her piece based on an incorrect or superficial reading (web writers get paid to put something on a page) and what she wrote was unsupported journalism.)

https://docs.google.com/viewer?a=v&q=cache:Kg97Y03CvX0J:downloads.hindawi.com/journals/idog/1998/704527.pdf+boric+acid+suppositories&hl=en&gl=us&pid=bl&srcid=ADGEESgs_YuRvVrnW-87ycbSEC7SJw-oQ0lDKfxo90XNa5NUe9vm-d_qG438FA0kwt0ddGvZzhc3MRm4A1x97hZaeCNUxBuFjDN-fevDRiSC-Ix-Eom5bxt4HFWXsR-PbVBd3rT9aPkd&sig=AHIEtbTnZDFjkyEGYihslVWKmnOmqgzvhQ

How to Kegel

After many, many years of not "getting it", I think I may understand how to Kegel.

First, if your Kegel muscles are very weak, you may not feel like you are doing it at all.

Second, if your pelvis is messed up, it is the release of the Kegel that is more significant that the contraction.

Third, for me I have figured out that a Kegel is 1. tightening my anus, 2. have my clitoris "nod down", and 3. closing up the vaginal entrance. Don't flex your butt and don't use your transverse abdominus.

If you are trying to release your pelvic floor, don't strain to hold it. Just initiate the Kegel for 1-3 seconds and then release and try for "non-doing" relaxation (i.e. don't try to consciously "enlarge" your anus). This may take a lot longer than the Kegel - 30 seconds? 1 1/2 minutes? 4 minutes?

If you are trying to strengthen your pelvic floor, then hold the Kegel just until you start to lose control and your Kegel gets shaky.

Here is where the biofeedback machine really helps as it measures your muscle contraction and relaxation through electric impulses.