Trying to Figure out my Vulvar Chronic Pain for 6 Years now : Age 35

I have chronic daily vulvar pain with severe inflammation episodes for the past 6 years along with chronic nerve pain on the left side of my body since I was 29. I have invested nearly $30,000.00 in the top specialist doctors from Vulvar and OBGYN specialists to spine surgeons, top physiatrists, osteopaths, neurosurgeons, natural yoga/ meditation, Physical therapy specializing in pelvic floor, body, mind, 6 X-Rays, 3 CT scans, 3 MRI's, 19 Pap smears, and over 10 hospital visits to the ER. The doctors have tested me and ruled out all sexually transmitted diseases more than 10 times tested as well as any other type of infectious disease. They say my vagina looks completely normal and healthy.

I am on Amitriptylin 20 mg every night, 3,000 mg Tylenol daily, Diclofenac Sodium 75 mg 2x daily, and now most recently a muscle relaxer called Tizanidine HCL 2 mg tablet. I do not like taking any medicine at all. I consider myself one of the most healthy eaters in this world; eating all organic Whole Foods with no added sugars and low sodium diet as well as gluten free following for the past 14 years. I am a healthy weight At 138 pounds and 5'6". I was always an athlete growing up from age 6 to age 29 when my pain started. I played basketball, softball, volleyball, soccer, swimming and skiing year round. At age 29 I was diagnosed with Isthmic Spondylolisthesis which is a spine slippage with a grade level 1 at L4&5, S1. The problem was that the spinal doctors; physiatrists and neurosurgeon did not think that my spine problem did not relate to my vulvar and pelvic floor pain. I had about 8 opinions from top spine specialists and OBGYNs. All they Told me was to take Tylenol and Ibuprofen for my pain.

After a few years , I was 32 and found an vulvar specialist that performed several tests over a period of 6 months and 5 doctor visits; she believed I had vulvodynia, possible nerve pain and interstitial cystitas. She believed that this could possibly be linked to my spine problem which is the Spondelo so she referred me to a top rated physiatrist that specialed in spine and pelvic floor therapy. To be continued tomorrow.........

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  • Hey there. This is a really long and a hard battle for you. And $30,000.00 is so abnormal amonut of money spent to find out nothing about your pain. Stories like this really frustrate me a lot. I'm a 22 years old guy from Croatia and my chronic pelvic and genital pains started 4 months ago. Have you ever tried Trigger Point Injections or ever heard about Ganglion of Impar block? This is something that might help in situation like this, and I am considering doing it myself too. Hold on there, and don't let doctors always tell you to take painkillers and live with this. Sometimes, you need to keep your voice up and be agressive so they should take this problem more serious. If you want to chat and need somebody to share your problems, feel free to contact me by viber or whatsapp. My number is +385989870386.

  • I have found A LOT of relief from Vulvar pain following a low oxalate diet. Check out website for Vulvar Pain Institute. I had pain for years and have had relief for years too on this diet.

  • Thanks, I will try this low oxalate diet.

  • uhmmm.....similar problem but the different i am a man

  • Good luck! Let us know how you are making out with the appointment!

  • Hi,

    I'm so sorry you are suffering.

    I began my, as yet undiagnosed, illness with inflammation and irritation of the labia. After more than a year, my GYN decided I was having vaginal/anal spasms. I did not "feel" the spasms, until I had done some repetitive lifting. We tried oral muscle relaxers, ointments, with no relief.

    I was just beginning sessions with a Physical Therapist specializing in Gynecology pain. The P.T. said, "Yes women often do not feel the vaginal/anal spasms. Those patients come in with pain, though."

    I too, had most of pain, weakness on my left side. Including buttock.Now, the spasms are including scalp, face, right side of my body, balance issues. One very spastic day, I could feel the buttock, labia, and hood being pulled with an occurrence of on going spasms.

    Too get to my point, the only thing that gave me any bit of relief was Compounded Valium Vaginal Suppositories. Inserted 4 times daily, dose .50 gm. I have taken them for over a year now. Taking a break to see if Botox Injections into Pelvic floor muscles help. It was just injected 3 days ago. Too soon to know. Prescription 5% Lidocaine Ointment applied to the external area helps, as well.

    I know the added pain the inflammation causes. I'm like you, looking for answers. I'm not anything more than a patient myself.

    I wish you well.

    MaisyDae

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