Molly’s Pelvic Pain Success Story

In Female Pelvic Pain by Stephanie Prendergast13 Comments

One month after my thirty-second birthday, I woke up in excruciating pain—it was as if someone had set me on fire while I was asleep—the focal point of my pain was the left side of my vulva but I also had extreme vaginal and urethral burning.

My first thought was that I had either a yeast or bladder infection; I had just moved to California three weeks before, so I had to find a doctor on the fly and hope for the best. Dr. Number One took several tests and sent me home with a goody bag full of creams, suppositories and other meds. None of the remedies worked and all of the tests came back clear; from there I began to see the doctor regularly in an effort to get to the bottom of my pain.

After about the third visit, he told me he didn’t know what was causing my pain, but that my pelvic floor muscles did seem to be in a spasm state; he diagnosed me with vulvodynia and recommended I see a vulvodynia specialist and also a physical therapist. At this point I was in a full-on state of panic—it felt like I had a pile of burning coals inside of me—it hurt to sit, it hurt to stand, it hurt to urinate, sex was out of the question, I wasn’t sleeping or eating—I was truly in agony.

In my state of anxiety I couldn’t figure out how on earth a physical therapist would be able to help me—wasn’t a physical therapist for someone who broke their leg or was in a car accident? I didn’t understand how a physical therapist could heal the kind of pain that I was in. So I put the physical therapist’s info away and concentrated on getting an appointment with Dr. Vulvodynia Specialist.

To my utter dismay, his solution was to give me Capsaicin treatments—evidently this was a pet treatment of his. I instantly got a bad feeling about his plan. Not only did he seem just a little too eager to try it on me, the thought of having someone apply cream made from the hottest, reddest peppers on the planet directly onto my burning vulva was a little too “horror movie” for me. I thanked Dr. V Specialist for his time and made my escape.

After this incident I sought out two more opinions—one doctor, we’ll call him Dr. Google, actually googled “vulvodynia” right in front of me. After scanning the info he came up with, he said I most likely had vulvodynia. He also added that there was no way that my pelvic floor muscles were in a spasm state and getting physical therapy for relief would be a waste of time.

The next doctor told me that nothing whatsoever was wrong with me—great news, except for the part where I remained in terrible pain. Not long after, there came a day when I decided if I had to live life in such horrible pain, I’d rather not—just a little aside here, no one is more against death than me–so for me to even be thinking this way was incredible.

That day I did what you do when you don’t know what to do, I called my Mom and she told me to go straight to the hospital. A trip the emergency room sounded like a wonderful idea to me. Truth be told, I had been harboring this fantasy of lying in a hospital bed surrounded by a team of doctors whose mission it was to figure out exactly what was wrong with me, and then cure me. But once again my hopes for getting to the bottom of my pain were dashed. It took a couple of doctors and an intern or two to tell me nothing showed up on any of the tests they ran on me and that they simply didn’t know what was causing my pain.

The day after the emergency room fiasco, I decided to call the physical therapist that Dr. Number One had told me about and make an appointment. I was burnt out on doctors, but I didn’t want to give up. At least seeing a PT would keep me in the game. And that’s when things began to turn around for me. The PT that I saw was Stephanie Prendergast.

After working on external connective tissue restrictions that I had, Stephanie began to work on me internally. After about five minutes into the session she found what she described as a “pea-sized lump” on the left side of my vaginal wall. She referred me to a pelvic surgeon who diagnosed me with a Bartholin’s abscess. I was overjoyed that someone had found “the reason” for my pain.

However, my happiness was short-lived as two months after the surgery to remove the cyst, I was still in pain. It was slightly changed in that it was less localized than before. Back to PT I went.

What Stephanie found was that many of my pelvic floor muscles were tight, including the muscles surrounding my urethra, and that the muscle that was adjacent to where the cyst had lived was riddled with trigger points. Apparently, the muscle guarding I had done for the past year to “protect” my painful tissue, had resulted in muscle tightening and trigger points. In addition to that, I had a great deal of connective tissue restriction on my inner thighs, buttocks, abdomen and bony pelvis. There was a lot of work to do.

After nearly two years of regular, weekly PT, I am thrilled to report that I am now about 95% pain-free. My two worst symptoms, urethral burning and sit bone pain (which evolved after my surgery) are both things of the past. I’m off all pain medication (I was on opiates, and an SSRI, Cymbalta), I have pain-free sex, I can wear jeans, do yoga, and anything else I want to do without pain. Every once in a while I’ll feel my muscles tighten, or I’ll have a bout of urinary urgency. When that happens, I go in for a “maintenance” PT appointment, and it clears up. It was a hard road, but with the right treatment, hard work, and persistence, you can get better.

Best,

Molly

Comments

  1. I would LOVE to be doing PT twice a week or
    Even once a week but my insurance won’t pay anymore
    Any ideas on HOW to get them to pay? I have Pudendal neuralgia

    1. Author

      Dear Kathy,

      I’m sorry you’re having problems getting your insurance company to cover your PT, but I’m sorry, I don’t have an answer for your question. Best, Molly

  2. Great Story!I have dealt with similar issues for six years but have recently found that I have an CRPS of the pelvis that started with a broken coccyx.This started me on a trail of tarlov cyst surgery,months of PT with pelvic floor specialists,an interstim,and of course thinking I had an entrapped pudendal nerve.I have been in intractable pain.I wonder how many people with these type symptoms might have a CRPS syndrome.Have you encountered this in your practice?As faithfully as I stayed with PT it flare my pain always-as did the surgical procedures I had. Thank you for all your great information

  3. O my god, Molly, my wife has the same pain for 17 years!!!!!!
    Unfortunately, in the Netherlands they can do nothing for her. Life is terribly difficult, but I keep hoping for a miracle. In England, is a climiek, but we get no answer. It is unfortunately no longer possible for her to be transported, so that’s a big problem. Fantastic to read your succes story a miracle. Good luck, Love from the Netherlands

  4. So good to hear you have relief from your pain now. PT is definitely a huge part of the healing process for pelvic pain. I can relate to your story (as I’m sure many of us reading this can) of going from doctor to doctor and not getting the help I needed to explain my pain and to significantly reduce the pain. It truly can be a process of trial and error until one finds the right combination of approaches that really work.

  5. I live in So California. What physical therapist did you go to? I am desperate.

    1. Author

      Dear Teresa,

      One of our PTs, Stephanie Prendergast, is opening a PHRC location in Los Angeles on May 5th. Call 415-440-7600 for more info.

      All my best,
      Liz

  6. I am not sure where I should write my story, but I will start here. I hope that this gets read by patients suffering from pudendal neuralgia. I have had PN for over 3 years- I had botox, nerve blocks, pain meds and PT 1-2 per week for almost the entire time. Pt definitely helped, but the pain persisted. I also had an MRI by Hollis Potter which showed a lesion on the dorsal nerve (branch of the pudendal nerve) I spent the majority of my time in bed with ice packs.
    Being a physician, I had seen the usual pelvic pain specialists- Dr. Andrew Goldstein who initially diagnosed me. I also saw Dr. Hibner for botox and nerve blocks under anesthesia.
    I was adamant about not having a decompression surgery. The statistics did not look good and I think that cutting the sacrospinus and or the sacrotuberous ligaments would result in pelvic instability. In addition, every healthcare provider warned me not to do the surgery.
    In March of this year, I consulted with Dr. Lee Dellon , a peripheral nerve surgeon. I only did this at my husband’s insistence. He found a neuroma in my episiotomy scar in the area of the perineal branch of the pudendal nerve. He told me he developed a technique using instruments that are used in nasal surgery and described how delicate an operation like this was.
    I had the surgery 3 days ago -April 23 2015- it is a miracle- my pain is totally gone! Any post op pain is nothing compared to the pain of pudendal neuralgia.

    I want people to know that decompression surgery is not the only option. I now believe, if someone is not improving, and they have a history of scar tissue, that they should get an evaluation by Dr. Dellon. He is a genius. People should look at his website and read the chapter on pelvic pain.
    Pts play an invaluable role. Once I am healed I will be returning to my PT Lila Abbatte- who is phenomenal- i need to make sure my pelvic floor stays relaxed and have to build up my core. In addition, due to lying in bed for so long i have to rebuild my muscle mass.
    I hope this is helpful to patients with any scar tissue.

  7. Hey there!
    This sounds a lot like my story. I have been diagnosed with IC multiple times but I only have frequency and urgency when my muscles are spasming! (and that’s only with flare ups–which have only been happening the last couple months. before I only had perineum pain.) Were you ever diagnosed with IC? And if so do you believe it was a misdiagnosis?

  8. If they ever had done a MRI, your problem should have had been resolved. Glad that things are finally be back to normal for you.

  9. Know any good pelvic floor specialist
    In the Dallas Fort Worth area.

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