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."

Clitoral Adhesions

Start at the highlighted ORIGINAL POST and read the comments section. Then read the updates. 

Update: December 17, 2016
I spoke to surgeon Dr. Mark Conway. He says one can have clitoral adhesions due to lichen sclerosis without any visible signs of lichen sclerosis. To diagnose, a biopsy of the adhesion itself needs to be done. Clobestasol ointment is the treatment. My impression is that a doctor could choose to treat it with the ointment regardless of whether it is biopsied and confirmed. In my situation, he told me (like all previous doctors) that my husband is doing a good job using my technique described in the original post.

Update: November 16, 2015
I discovered an ointment about 2-months ago called "V-Magic." It lubricates and I am wearing it every day and night. Much more comfortable and likely helping my adhesions to stay away!

Update: September 23, 2015
In response to readers' desire to see what normal clitorises look like, I added two posts. Search for the articles: "Clitoral Hood Photos" and "Anatomy of the Clitoris."

Update: August 5, 2015
First, my day's discovery. I bought microfibre cloths from the Dollar Store to clean my face, but tried it in the shower to pull back the clitoral hood. This gives a much better grip than my fingers. I recommend it as a process-improvement. Especially if you are working on opening the adhesions without a partner.

I have adhesions again.

I flew to Brazil which takes 24 hours to get to. When I arrived in Sao Paolo, I had incredible pain that lasted and lasted. I couldn't figure out what was wrong for 4 days (Brazilians do not light their homes well). Finally, I saw that the smegma was back and took out the tweezers and the ointment, stopped wearing underwear, and sat in the ocean which helped the pain and the healing. My Brazilian friend witnessed all this ridiculousness and took me to see a homeopathic doctor which is the norm in Brazil. (More to report on that at another time).

But then, some good news. Return from trip sex resulted in a ripping feeling and my clitoris and hood separated "on its own"! First time ever!!! My clitoris looks sort of beat up and I am fretting over it a lot right now. No smegma, but some adhesions to work on...

The smegma returned slightly and she put me on a different steroid called Triamcinolone Acetonide ointment 0.1% and it cleared right up. Please read my 8/15/2010 post for how to use your hands and instruments to loosen up the hood from the clitoris.

I may have mentioned that I found a vulvar dermatologist at Stanford named Dr. Badger, a lovely woman who reminds me of a blond Mary Poppins, including the phrase, "Oh dear!"

She put me on Desonide 0.05% ointment for an unusually copious presence of smegma. Below is an image of what was extracted by my husband (yes, this is graphic, but I think it is helpful to see). The tweezers were used to lift the smegma off the clitoris once it was expelled (see the "Clitoral Adhesions" entry for my how-to)

Per her instructions, I used the Desonide twice a day, morning and night, for 3 weeks. Then I reduced it to once a day for another 3 weeks. It really worked. I healed up and the smegma hasn't returned in the last 5 months). Should it return, she says I can use it again without coming in to see her other than my usual every 3 month check-in.
She also said that the concern that steroids will "melt the skin of your labia" as some doctors have told me is "poppycock" and uninformed. I don't know enough about steroid use on the clitoris so get an opinion on this from your doctor.
I got good suggestions of other steroids to try on my other blog post. I thank you for those suggestions and it was with that knowledge that I was able to go back to my doctor and discuss steroid ointments. Some may ask what the "active ingredient" is in Desonide and the answer is desonide. It is in an ointment of petrolatum and mineral oil.

Update April 26, 2013:
See my post "Clitoral Adhesions Update" for an image of smegma and a topical steroid ointment I used call Desonide that resolved a flare. Thank you to the many commenters that suggested the right topical steroids and made my adhesions leave.

Clitoral adhesions are not given too much medical attention and will likely confound your gynecologist who may have never heard of this. I have gone in to appointments with a drawing of my adhesions (drawn by my not-so-artistic husband). Adhesions develop when your outer clitoral hood fuses (to a lesser or greater extent) with the clitoris. The cause is the continual irritation between to two surfaces. As the body tries to heal itself, the two raw areas begin to heal onto each other. The clitoral hood is supposed to slide back and forth over the clitoris, but in this case, it becomes stuck. Often you develop pockets of sebaceous fluid which normally lubricates the area and allows for slide between the two, but in this case it becomes trapped in inside of the adhesions and becomes a further irritant. When it can't be discharged, it dries out and goes from an oil-like lubricant to smegma. You can see this smegma trapped inside the adhesions. Smegma is white and hard.

The treatment, invented by me and my husband is this:
  • I spread my labia and clitoral hood apart so that he can see the area;
  • He uses a black head extractor with a soft point on the end shown here. If you wince, fine. If you cry, stop as you are just damaging yourself at this point;
  • He may use a little oil - baby, olive, whatever;
  • He slides from top to down along the seam prodding it open (again, I am holding the clitoral hood and the clitoris as open as possible so that he can see);
  • I then try to put my fingers on each side of the crevice and pull it apart gently (this alternates with the other approach);
  • It is importantly to work on this a bit and then leave it for a a few days before you come back to do some more loosening as this process inflames the skin and that is what you do not want to happen.
  • Yes, this hurts. We once had to work on one individual adhesion for 4 years (it had probably been there for a very long time) to get it open and it recently returned. This time it took only a few weeks to open. The important thing is to catch it before it starts to fuse again. 
  • Open the clitoral hood and clitoris in the shower and gently pull the two sides apart once every 2-4 weeks (daily will just irritate you and make the skin more raw). I gently, gently wash with Cetaphil. No scrubbing. It is more just like how women apply face wash in commercials with the light touch, moving in slow circles for a brief moment. (Update: August 5, 2015. Cetaphil has sodium lauryl sulfate in it which is a chemical that can irritate some people's skin. I only use water now. I discovered you can get a nice hold on the clitoral hood and clitoris by using a microfibre cloth that you can buy 3 for $1 at the Dollar Store in the beauty, car washing, or cleaning sections!)
  • After a session, slather on some ointment like Lidocaine 5% or Vaseline to give the skin a barrier protectant.
Doctors have said to just keep going at it like we have been. And that they don't have a better solution. And they compliment my husband on his fine work.