I am a women’s health specialist, one of only 200 Board Certified Clinical Specialist in Women’s Health Physical Therapy in the U.S. So I have a very personal connection to the healthcare. I have also been a chronic pelvic pain patient, so I also understand what is like to live with a condition that all too often is thought to “be in your head.”

 

My story

Dr. Jagroo working on a patient in her Staten Island office
Dr. Jagroo working on a patient in her Staten Island office

I have suffered from severe pelvic pain since the age of nine, spending almost two decades of my life with this chronic condition. Not too long ago, I got to the point where I honestly never thought the pain would go away. But, I am here to tell you that living with chronic pelvic pain does not have to be a way of life.

In my attempt to learn the cause of the pain and, therefore, find a treatment, I underwent a series of tests to rule in or rule out the most common causes of my type of chronic pelvic pain:

Was it an infection? 

The tests came back negative.

Was it an allergy?

The tests came back negative.

Was it an STD?

The tests came back negative.

What did my own GYN tell me?

“It’s all in your head, Denise”

 

I felt hopeless

At this point, I gave up. The pain had become debilitating. I was in my late 20s and already undergoing my third inguinal hernia repair surgery.

After the surgery, my doctor said I had endometriosis, something they had found by accident during the surgery. I was put on birth control pills to help manage my symptoms. It helped a little, but I still experienced burning and discomfort in my pelvis on a regular basis.

I continued to have pain for months and months, mostly burning and discomfort. I went to doctor after doctor, specialist after specialist, with no real answers. I felt hopeless. One doctor even suggested that I might be allergic to my boyfriend!

 

Was it all in my head?

I started to think it was, indeed, all in my head. Nevertheless, I continued to research the causes of vulvodynia. (“vulva” refers to the external female genitalia, “dynia” refers to pain), the particular type of pelvic pain that I was experiencing. Here’s what I found:

  • A woman can have a reaction to her detergent, lotions, or clothing.
  • She can be eating foods that produce irritants in the vulva area or be throwing off the pH in her vagina.
  • She can be taking antibiotics which can be causing a fungal (yeast) infection.
  • Or, she may indeed be allergic to her partner.

But, trying to figure out what my specific problem was, that was the hard part. I happened upon my answer in a very random way—at the dentist!

 

A diagnosis at last

Oral lichen planus (photo credit: Wikipedia
Oral lichen planus (photo credit: Wikipedia

During a visit with my dentist for a routine cleaning, he suddenly exclaimed, “You have Lichen planus!

My reply was, “Huh?”

Lichen planus is an inflammatory condition, thought by some to be auto-immune, of the skin and mucosal linings. Since the mouth has a mucosal lining and so does the female vulva, I wondered, could lichen planus be causing my pain?

 

Connecting the dots

I looked up everything I could on the condition and realized that I had experienced many of the symptoms of the disease. I started to connect the dots.

Ridged nails of lichen planus (photo credit: Gorouhi et al, The Scientific World Journal (open access)
Ridged nails of lichen planus (photo credit: Gorouhi et al, The Scientific World Journal (open access)

It turns out that 25%-50% of women with oral lichen planus also have involvement of the vulva or vagina. Lichen planus can also cause pitting and longitudinal ridging of the nails. I had had both of these.

Skin rashes are common usually appearing as little purple-red spots that appear on the skin in clusters or individually. The rash is not usually painful, but can be, but doesn’t have to be itchy (mine weren’t). I occasionally had rashes like these on the back of my hands when I was growing up, but none of my doctors could ever explain it.

The most important thing I discovered about this condition, while researching it, is that although the precise cause of the condition is not known, it can be triggered by STRESS.

 

De-stressing my life

I knew then that I had to de-stress my life. I started journaling, meditating, practicing yoga. I practiced deep breathing because it helps to calm the nervous system. I also broke up with my boyfriend—it turns out I was “allergic” to him after all—he stressed me out!

I did not use pills, ointments, creams, or injections, although medications, such as topical, oral, or intra-lesional corticosteroids are often prescribed. I chose to de-stress my life instead. My symptoms went away. I healed myself.

Because of my personal experience, I make sure to help all my patients manage their stress as well. If they are experiencing pain, I know that although I can do everything that I can treat them physically, but if they are stressed in their daily lives, their pain will persist. I incorporate visualizations and meditations into all of my pelvic pain patients sessions and, although anecdotal, I can attest to some great successes.

 

Chronic pelvic pain is not in your head

So, if you are experiencing chronic pain, don’t let anyone tell you “it’s all in your head”. Ask questions, do research, and do your best to de-stress your life—whether that means meditating, practicing yoga…or breaking up with your boyfriend!

24 COMMENTS

LEAVE A REPLY

Please enter your comment!
Please enter your name here

This site uses Akismet to reduce spam. Learn how your comment data is processed.