By Diane
I suffered with pelvic pain for years. I want to share my story, so others won’t have to suffer needlessly.
It started in February 2009 when I tried having sex with my boyfriend. Intercourse was extremely painful, and each time, my perineum tore a bit. I’d be sore for days afterward. Eventually I’d heal, but it took a toll. I dreaded sex more each time.
My gynecologist said I was having sex wrong, and I lost all respect for her opinion. A friend recommended a new doctor; this physician thought I had Lichen Sclerosis. I didn’t think that was the problem, so she did a biopsy to prove it.
The biopsy ruled out cancer, but didn’t confirm that I had Lichen Sclerosis. Nevertheless, the doctor prescribed steroids and other drugs and suggested I join a sclerosis support group. In my heart, I knew this wasn’t the answer.
By then, my boyfriend and I were only having intercourse every couple of months. We moved, and in the spring of 2012, a friend recommended another doctor. I’d been having bouts of urinary tract and yeast infections, and I was a hot mess.
My new doctor suggested removing the offending tissue in hopes that it would grow back healthier. I thought, “The tissue she’s talking about is my freaking vulva,” and I said, “No thanks.” I’d never see her again.
The next doctor was compassionate and specialized in menopausal symptoms and hormonal imbalances. She agreed I most likely didn’t have Lichen Sclerosis but had no other answers. She did another biopsy — a horrific experience. She had to stick me seven times to numb me and didn’t give me anything for aftercare. But she did suggest some things that helped slightly. The tearing still occurred, but it wasn’t as intense.
The biopsy showed I didn’t have Lichen Sclerosis. I consulted a naturopath, who gave me some supplements. It helped slightly; I no longer had yeast infections and UTIs, but I was no closer to a fulfilling sex life.
By this time, my boyfriend and I were incredibly frustrated; our marriage plans were on hold. I was weary of going to doctors and spending money without satisfactory results.
I went to specialists in other states and joined support groups. I saw three different acupuncturists and a Reiki. I found a doctor specializing in Vulvodynia. On examining me, he said I was “very tight” and told me to relax, but I was relaxed. He compared my vulva to a stretched rubber band and explained that this was why I was tearing during intercourse. I was relieved, because I’d never heard this explanation before. He suggested biofeedback therapy.
I was also experiencing severe itching, redness and irritation around my vulva. In the fall of 2012, I went to a dermatologist who said I had vulvar eczema. After meeting both these doctors and hearing their recommendations, I felt such relief that I cried. I was so grateful to finally get some answers!
I found a physical therapist who specialized in pelvic pain. She showed me all sorts of exercises, but said that biofeedback therapy wouldn’t help me. I started seeing a psychologist because my emotions were everywhere. I began thinking I was the crazy one.
After eight months with the first physical therapist, I switched to someone else. I saw her for another four months before I grew tired of seeing only the slightest improvement.
I thought, “Wait, I never did any biofeedback!” Then, I discovered an urgent care facility for women with gynecological problems. I made an appointment and started doing biofeedback. I was thankful that my insurance covered the treatments, and finally I started getting some positive results.
The tearing had pretty much stopped by then, and the pain during sex decreased too. My boyfriend and I got engaged that fall. I was still seeing a psychologist, and my mental health began to improve.
I continued the biofeedback therapy into the spring of 2013. I married the love of my life, who stood beside me through it all. Despite the strain, he never gave up on me and us! Sex was no longer something that I dreaded every couple of months. Now, it was much better, and I could actually have orgasms and enjoy intercourse!
Through my gynecologist, I learned that the Pelvic Health and Rehabilitation Center had opened an office in LA. I visited the website and read a case study. There were many similarities with my situation, so I made an appointment with Stephanie. We talked about something I’d never discussed with anyone: how my sex drive was almost nonexistent. My husband and I would fool around and he’d do everything right, but I wouldn’t feel a thing. I had no real desire; I was just going through the motions. Stephanie suggested that I go off birth control pills and suggested an IUD. She said that sometimes birth control pills can dampen the sex drive and can cause vulvodynia. Looking back, my symptoms began after I started taking birth control pills many years ago. I had no idea there could be a connection to vulvodynia or a loss of libido. (You can read more about this connection here)
Beyond the birth control pill revelation, Stephanie identified connective tissue changes in my pelvic area. She said these changes were causing blood flow and sensation issues during sexual contact. She suggested that the biofeedback may have taught me to relax my pelvic floor muscles, which allowed me to have sex, but there was still pain at the vestibule which could be from hormonal changes from the pill and from connective tissue problems that were not resolved with biofeedback. The treatment for these issues involved a prescription for a topical estrogen/testosterone cream from my doctor and manual physical therapy with her.
Stephanie also recommended yoga and a ‘sugar buster’ diet because of my history of yeast infections. She treated the connective tissue issues with manual therapy; something that had not been done by any of the previous therapists. I truly felt like I was finally going to beat this problem once and for all, and about 8 weeks later, I did. The manual therapy and the topical hormone cream helped tremendously. I am also using a homeopathic probiotic serum that helps with the chronic infections. It also restores the pH level in my vagina. Now I have feeling in my vulva again and feel as if my body has awakened!
Dealing with vulvodynia is very isolating. It’s a deeply intimate issue. For anyone going through similar problems, I’d recommend immediately going to PHRC or another group specializing in vulvodynia. It is clear in hindsight that my problem came from several problems and until I treated all of them I was not going to get better. I had to treat my infections, my pelvic floor muscles, restore hormonal balance, and address external things like connective tissue that wasn’t helped with biofeedback. Diet changes, yoga, and a psychotherapist helped me cope as Stephanie helped figure out my treatment plan. If I can save anyone from wasting their time and money on ineffective treatments and dealing with the emotional stress I did, telling my personal story will be worth it.
FAQ
What are pelvic floor muscles?
The pelvic floor muscles are a group of muscles that run from the coccyx to the pubic bone. They are part of the core, helping to support our entire body as well as providing support for the bowel, bladder and uterus. These muscles help us maintain bowel and bladder control and are involved in sexual pleasure and orgasm. The technical name of the pelvic floor muscles is the Levator Ani muscle group. The pudendal nerve, the levator ani nerve, and branches from the S2 – S4 nerve roots innervate the pelvic floor muscles. They are under voluntary and autonomic control, which is a unique feature only they possess compared to other muscle groups.
What is pelvic floor physical therapy?
Pelvic floor physical therapy is a specialized area of physical therapy. Currently, physical therapists need advanced post-graduate education to be able to help people with pelvic floor dysfunction because pelvic floor disorders are not yet being taught in standard physical therapy curricula. The Pelvic Health and Rehabilitation Center provides extensive training for our staff because we recognize the limitations of physical therapy education in this unique area.
What happens at pelvic floor therapy?
During an evaluation for pelvic floor dysfunction the physical therapist will take a detailed history. Following the history the physical therapist will leave the room to allow the patient to change and drape themselves. The physical therapist will return to the room and using gloved hands will perform an external and internal manual assessment of the pelvic floor and girdle muscles. The physical therapist will once again leave the room and allow the patient to dress. Following the manual examination there may also be an examination of strength, motor control, and overall biomechanics and neuromuscular control. The physical therapist will then communicate the findings to the patient and together with their patient they establish an assessment, short term and long term goals and a treatment plan. Typically people with pelvic floor dysfunction are seen one time per week for one hour for varying amounts of time based on the severity and chronicity of the disease. A home exercise program will be established and the physical therapist will help coordinate other providers on the treatment team. Typically patients are seen for 3 months to a year.
What is pudendal neuralgia and how is it treated?
Pudendal Neuralgia is a clinical diagnosis that means pain in the sensory distribution of the pudendal nerve. The pudendal nerve is a mixed nerve that exits the S2 – S4 sacral nerve roots, we have a right and left pudendal nerve and each side has three main trunks: the dorsal branch, the perineal branch, and the inferior rectal branch. The branches supply sensation to the clitoris/penis, labia/scrotum, perineum, anus, the distal ⅓ of the urethra and rectum, and the vulva and vestibule. The nerve branches also control the pelvic floor muscles. The pudendal nerve follows a tortuous path through the pelvic floor and girdle, leaving it vulnerable to compression and tension injuries at various points along its path.
Pudendal Neuralgia occurs when the nerve is unable to slide, glide and move normally and as a result, people experience pain in some or all of the above-mentioned areas. Pelvic floor physical therapy plays a crucial role in identifying the mechanical impairments that are affecting the nerve. The physical therapy treatment plan is designed to restore normal neural function. Patients with pudendal neuralgia require pelvic floor physical therapy and may also benefit from medical management that includes pharmaceuticals and procedures such as pudendal nerve blocks or botox injections.
What is interstitial cystitis and how is it treated?
Interstitial Cystitis is a clinical diagnosis characterized by irritative bladder symptoms such as urinary urgency, frequency, and hesitancy in the absence of infection. Research has shown the majority of patients who meet the clinical definition have pelvic floor dysfunction and myalgia. Therefore, the American Urologic Association recommends pelvic floor physical therapy as first-line treatment for Interstitial Cystitis. Patients will benefit from pelvic floor physical therapy and may also benefit from pharmacologic management or medical procedures such as bladder instillations.
Who is the Pelvic Health and Rehabilitation Team?
The Pelvic Health and Rehabilitation Center was founded by Elizabeth Akincilar and Stephanie Prendergast in 2006, they have been treating people with pelvic floor disorders since 2001. They were trained and mentored by a medical doctor and quickly became experts in treating pelvic floor disorders. They began creating courses and sharing their knowledge around the world. They expanded to 11 locations in the United States and developed a residency style training program for their employees with ongoing weekly mentoring. The physical therapists who work at PHRC have undergone more training than the majority of pelvic floor physical therapists and as a result offer efficient and high quality care.
How many years of experience do we have?
Stephanie and Liz have 24 years of experience and help each and every team member become an expert in the field through their training and mentoring program.
Why PHRC versus anyone else?
PHRC is unique because of the specific focus on pelvic floor disorders and the leadership at our company. We are constantly lecturing, teaching, and staying ahead of the curve with our connections to medical experts and emerging experts. As a result, we are able to efficiently and effectively help our patients restore their pelvic health.
Do we treat men for pelvic floor therapy?
The Pelvic Health and Rehabilitation Center is unique in that the Cofounders have always treated people of all genders and therefore have trained the team members and staff the same way. Many pelvic floor physical therapists focus solely on people with vulvas, this is not the case here.
Do I need pelvic floor therapy forever?
The majority of people with pelvic floor dysfunction will undergo pelvic floor physical therapy for a set amount of time based on their goals. Every 6 -8 weeks goals will be re-established based on the physical improvements and remaining physical impairments. Most patients will achieve their goals in 3 – 6 months. If there are complicating medical or untreated comorbidities some patients will be in therapy longer.
Comments
Very thoughtful and informative story. Thank you so much for sharing it
Thanks so much for sharing your story!
I have battled with IC and vulvodynia for almost 30 years. It took years to diagnose the IC and I just recently (last 10 years) figured out I had vulvodynia. I take several drugs at bedtime and had recently added estrogen cream. I had an appointment last week with my specialist and told her of my issues with being uncomfortable with sex. She prescribed the Estradiol and Testosterone cream for me. Your story makes me hopeful as I miss having regular organisms.