For years no doctor would biopsy my vestibular skin saying it would only add to the trauma. Finally, I encountered a gynecologist who suggested it was appropriate. It is done in the doctor's office and consists of a lidocaine injection (the painful part) and then a 3mm "punch" that extracts a tiny amount of skin. One stitch that dissolves on its own. No pain afterwards. Easy peasy. The results came back as "minimally chronic inflammation." Unfortunately, inflammation is not well understood medically. I have added ibuprofen into the mix to see if that will help because it is an anti-inflammatory. I am also strictly following my allergy diet.
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."
Showing posts with label inflammation. Show all posts
Showing posts with label inflammation. Show all posts
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
Research: Treatment and Relationship to Autoimmunity
I found this on the web. I will be looking into the treatments. It is a small study, but immune modifying drugs were successful (how do they define success?) in 97% of the patients. The second drug mentioned, Hydroxychloroquine (Plaquenil is the brand name), I already take for arthritis. I will see my doctor about trying the with the intravaginal hydrocortisone acetate 10% foam.
J Reprod Med. 2005 Jul;50(7):513-23.
Chronic inflammation of the vagina: treatment and relationship to autoimmunity.
Source
National Women's Hospital, Auckland, New Zealand. jthomson@world-net.co.nz
Abstract
OBJECTIVE:
To investigate noninfective, symptomatic, chronic inflammation (CI) of the vaginal mucosa to determine its prevalence and immunologic basis and to initiate an immunologic approach to treatment and assess the response.
STUDY DESIGN:
A prospective, observational, clinical study of 55 women with dyspareunia and/or discharge of vaginal mucosal origin. Vaginal biopsies and immune investigations were carried out. Treatment was instituted utilizing immune-modifying agents.
RESULTS:
The prevalence of CI of the vagina in symptom-free women was 0-4.3% and in the symptomatic group, 89%. Systemic immune activation was demonstrated in 43 of the 55, with 21 suffering from an autoimmune disease or a condition in which immune activation plays a part, including endometriosis in 20. Thirty-one were treated; intravaginal hydrocortisone acetate 10% foam was given in 24, giving full relief in 14 and inadequate relief in 10. Hydroxychloroquine, an immune-modifying, antirheumatic drug, was added and largely gave relief in these 10. Hydroxychloroquine alone was given in 4 and was effective in 3. Overall, immune-modifying drugs were successful in 97%.
CONCLUSION:
CI of the vaginal mucosa stems from local immune activation and is generally associated with evidence of other immune abnormalities, including autoimmune diseases and disorders in which immune activation play a part, including endometriosis. It can be successfully treated by immune modification.
Inflammation and Allergies
So, I have lots of signs of general body inflammation: genital skin pain, bursitis in my hips, and arthritis in my hands. I also have allergies and it occurred to me that I should see an allergist and find out what I am allergic to right now (allergies can change). So I went to the allergist a.k.a. an immunologist. Usually when you see an allergist, you get your pinpricks of allergens on your back, get a list of things to avoid, and start doing diet or lifestyle work-arounds, meds, or injections. I decided to grill him whether there was a connection between allergies and other inflammatory diseases. He is up to date on the data and said that there is not enough research. For most people, there seems to be no connection, but for som people it seems their allergies and other autoimmune illnesses are connected.
I have taken my anti-allergy steps and feel so much better in the morning without being congested. Maybe it won't "cure" what else ails me, but it feels good anyway - a healing experience in itself.
Update: I have reduced my allergic load by cutting out the food and environmental factors that flare me. I have cut out the foods I respond to: cranberries, chocolate, apricots, tomatoes, sweet potatoes. I have added mite covers on my bedding (google this to learn more), moved my bed to a wall that I am confident doesn't have mold - my bed was up against a 64 year old shower and tub wall, and moved a plant out of my room. I can't believe the difference. No sore throat, no post nasal drip, less swollen eyes. I have to think it is helping my vulva
I have taken my anti-allergy steps and feel so much better in the morning without being congested. Maybe it won't "cure" what else ails me, but it feels good anyway - a healing experience in itself.
Update: I have reduced my allergic load by cutting out the food and environmental factors that flare me. I have cut out the foods I respond to: cranberries, chocolate, apricots, tomatoes, sweet potatoes. I have added mite covers on my bedding (google this to learn more), moved my bed to a wall that I am confident doesn't have mold - my bed was up against a 64 year old shower and tub wall, and moved a plant out of my room. I can't believe the difference. No sore throat, no post nasal drip, less swollen eyes. I have to think it is helping my vulva
Hyaluronic Acid and Omega 3 Supplements Were Suggested
Update February 23, 2012:
I heard from my rheumatologist that hyaluronic acid is not going to any good (or bad) for me. She strongly endorsed Omega 3s and suggested that I stick to flax based supplements because fish based ones aren't controlled for toxicity by the FDA). I have found that an even better way to get my Omegas is through ground flax seeds and chia seeds. I buy them at Whole Foods and throw them on or in anything. Tastes really good and are now "must haves" in my morning cereal.
I also talked to doctors and researched delayed response allergy testing and am not confident in its reliability and so I went down the typical allergy path. By avoiding my food allergies and containing my environmental allergies, I feel better overall.
Original Blog:
My insurance company has assigned me a "health coach" (are my bills too high for them?) and I happened to get a doctor who will work with me who specializes in chronic pain and dermatology. Doesn't that sound like vulvodynia? During our one hour conversation, she suggested that I really up my Omega-3s to 4000mg/day and also take hyaluronic acid orally (when I went to the store there are creams made of this and when I asked in pill form I almost got acidophilis (not sure why so watch out)to 4000mg/day. The hyaluronic acid can apparently strengthen ligaments. I bought Hydraplenish by Nature's Way at Whole Foods. She said to take the hyaluronic acid for 2 weeks to see if I got improvement. I am on day 4. She also suggested I consider delayed allergy response testing (different from regular allergy testing) and I might look into this. Her general take was that I have a lot of inflammation and that needs to be managed down. I will talk to her again on December 6th.
I heard from my rheumatologist that hyaluronic acid is not going to any good (or bad) for me. She strongly endorsed Omega 3s and suggested that I stick to flax based supplements because fish based ones aren't controlled for toxicity by the FDA). I have found that an even better way to get my Omegas is through ground flax seeds and chia seeds. I buy them at Whole Foods and throw them on or in anything. Tastes really good and are now "must haves" in my morning cereal.
I also talked to doctors and researched delayed response allergy testing and am not confident in its reliability and so I went down the typical allergy path. By avoiding my food allergies and containing my environmental allergies, I feel better overall.
Original Blog:
My insurance company has assigned me a "health coach" (are my bills too high for them?) and I happened to get a doctor who will work with me who specializes in chronic pain and dermatology. Doesn't that sound like vulvodynia? During our one hour conversation, she suggested that I really up my Omega-3s to 4000mg/day and also take hyaluronic acid orally (when I went to the store there are creams made of this and when I asked in pill form I almost got acidophilis (not sure why so watch out)to 4000mg/day. The hyaluronic acid can apparently strengthen ligaments. I bought Hydraplenish by Nature's Way at Whole Foods. She said to take the hyaluronic acid for 2 weeks to see if I got improvement. I am on day 4. She also suggested I consider delayed allergy response testing (different from regular allergy testing) and I might look into this. Her general take was that I have a lot of inflammation and that needs to be managed down. I will talk to her again on December 6th.
Bursitis - A Cause of Pain? What to Do?
Thinking that the source of the pain is bursitis is a lot less scary than thinking it is pudendal nerve entrapment. So, perhaps bursitis in my hip and in a number of other places in my pelvis is contributing to the pain. My doctor sticking her finger into a bursa HURT! Here's what I am doing to get relief and overall improvement:
1. Avoid "unwise action". I worked in my yard two weeks ago and had a major flare thereafter. Totally not worth it although I enjoyed myself at the time;
2. Use Biofreeze, a menthol based roller-stick rub on whereever you have skin burning, except the vulva!;
3. Use lidocaine and rub it on your vestibule and wherever you have skin burning;
4. Don't massage yourself thinking it will improve things. All it does is inflame the bursa;
5. Take ibuprofen during a flare;
6. Take physical breaks - nap;
7. Wear your sacral belt unless it is pressing on the bursa. And, in general, don't wear the belt too tightly. The instructions say to only have it as tight as you tie on a pair of running shoes.
8. Do your P.T.
Tips 1 through 5 are the most important for me.
1. Avoid "unwise action". I worked in my yard two weeks ago and had a major flare thereafter. Totally not worth it although I enjoyed myself at the time;
2. Use Biofreeze, a menthol based roller-stick rub on whereever you have skin burning, except the vulva!;
3. Use lidocaine and rub it on your vestibule and wherever you have skin burning;
4. Don't massage yourself thinking it will improve things. All it does is inflame the bursa;
5. Take ibuprofen during a flare;
6. Take physical breaks - nap;
7. Wear your sacral belt unless it is pressing on the bursa. And, in general, don't wear the belt too tightly. The instructions say to only have it as tight as you tie on a pair of running shoes.
8. Do your P.T.
Tips 1 through 5 are the most important for me.
Lidocaine Ointment
Updated Post 11/6/2011:
The lidocaine "pooped out" (the clinical term, I believe). My gynecologist Dr. Lannin suggested that taking a 3-5 day break is needed and then to start using it again. All is well, but no cure. Maybe some improvement, however. Look at my post on Desonide.
Original Post:
I have a new specialist in pelvic pain, N.P. Abercrombie at UCSF. I am now using 5% lidocaine ointment that is made specifically for mucous membranes. It smells like spearmint for all those using it on canker sores..! She believes that my vulvar pain will be gone after 3 months of usage. That's a big statement, but so far it is going well. It hasn't burned like the other lidocaines have, possibly because it has a different base. Of course, lidocaine does burn somewhat, but this works fast and numbs you out. She said to put it on a cotton ball and place that in the vestibule. I am finding good luck just with applying it directly which avoids the cotton ball.
As a side note, she suggested trying to 1. get off some of my prescription drugs and 2. try the Andrew Weil anti-inflammatory diet. Her take as to "why" I have pain is that I have too much systemic inflation (this fits with my autonomic arousal theory).
The lidocaine "pooped out" (the clinical term, I believe). My gynecologist Dr. Lannin suggested that taking a 3-5 day break is needed and then to start using it again. All is well, but no cure. Maybe some improvement, however. Look at my post on Desonide.
Original Post:
I have a new specialist in pelvic pain, N.P. Abercrombie at UCSF. I am now using 5% lidocaine ointment that is made specifically for mucous membranes. It smells like spearmint for all those using it on canker sores..! She believes that my vulvar pain will be gone after 3 months of usage. That's a big statement, but so far it is going well. It hasn't burned like the other lidocaines have, possibly because it has a different base. Of course, lidocaine does burn somewhat, but this works fast and numbs you out. She said to put it on a cotton ball and place that in the vestibule. I am finding good luck just with applying it directly which avoids the cotton ball.
As a side note, she suggested trying to 1. get off some of my prescription drugs and 2. try the Andrew Weil anti-inflammatory diet. Her take as to "why" I have pain is that I have too much systemic inflation (this fits with my autonomic arousal theory).
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