In this podcast episode, Leilani, The Pelvic Health Guru, joins us to talk about her experience with pelvic pain, ways you can manage your pelvic pain, and how to find a supportive provider.
What is pelvic pain?
According to the Mayo Clinic, chronic pelvic pain is any pain that can occur below your belly button or between your hips. It’s considered chronic when it lasts over three to six months or longer depending on the diagnosis. It’s important to look at pelvic pain because it can signal conditions like vulvodynia, vestibulodynia, vaginismus, pudendal neuralgia, endometriosis, pelvic floor dysfunction, persitus, and more.
Is it normal to have pelvic pain?
It’s never normal to have pelvic pain. Always see a doctor if you’re experiencing any sort of pelvic pain, especially during sexual activity, during menstruation, or at any point in time when you’re having abnormal pelvic pain. Pelvic pain is a great warning sign for some sexually transmitted infections.
How common is pelvic pain?
From the pelvic pain resource guide that my friend Michelle and I created, we came up with a statistic that over 25 million women, or vulva owners, suffer from chronic pelvic pain worldwide. One in 10 women, or vulva owners, have endometriosis. It’s much more common than people are aware of. Unfortunately, due to lack of research, and lack of people seeking medical attention, I don’t think we’ll ever truly know the number due to the stigma related to pelvic pain and sexually painful disorders like vulvodynia. It’s a lot more common than we think.
What led you to helping other women with pelvic pain?
My journey started four years ago. I’m going to say that I’m currently healing from vestibulodynia, pelvic floor dysfunction, pudendal neuralgia, and I also suffer from Crohn’s disease and central sensitization. When I dealt with this, I was not taken seriously by doctors. Fortunately, I have a research background, so when this happened to me I started by creating a list of potential issues I might have, and I did a lot of research into these issues. Every time I brought up these issues with doctors, I was dismissed. I was told to drink wine during sex. I’ve heard that a lot from other clients I’ve talked to when I was volunteering for the National Vulvodynia Association. I was told that I was depressed or neurotic. I was told that I’m hyper fixating. I was a hypochondriac. I got dismissed by so many doctors. So I started making a Word document with my own research and I looked at every form of treatment, every potential condition that could be, and it actually turned into a huge 10 page Word document. Then, I found Michelle on Instagram. When I found her on Instagram, I was just blown away by how many followers she had for such a niche area, pelvic pain. So I messaged her, and I wanted to give her my resources to help other people. But she wouldn’t let me just give them to her. She wanted to collaborate with us. She helped create graphics, and we mixed together some of the work she already had done into a Pelvic Pain Resource Guide.
How can women get your Pelvic Pain Resource Guide? What is the intention behind it, and how do you use it?
You can get the guide on our websites. You can also find it through our Instagram pages. Originally we created it as part of a career path in sexual wellness and pelvic pain. But it really was created to help people not struggle. I had thought I was the only person in the world that had this. I used to cry and cry and cry. I felt so alone. So, when I realized there were other people out there, I just wanted them to have these resources. So, number one, it is available by donation. Part of the proceeds or profits go to companies or organizations like the National Vulvodynia Association, who I donated to last time. Michelle donated to an endometriosis foundation, but we switch it up and we donate to different organizations each volume we do. We’re on volume two, now. It is available by donation/for sale. However, if anyone cannot afford to donate or cannot donate at this time, as long as they send us an email address, we are more than happy to send a free copy because that’s what it’s here for. It’s not to make a profit. It’s to help people and eventually we’d love to grow it into something bigger. But we always want to have either a sliding scale or free resources for people who need them, because I know how expensive it is to get help for these conditions.
What is small fiber neuropathy and central sensitization?
Central sensitization is when you have chronic pain and the pain compounds on top of each other; and it can create hypersensitivity. For example, when I developed my vestibulodynia and pudendal neuralgia, I started developing something called allodynia, which is a hypersensitivity to touch, heat, coldness, or clothing. I wasn’t able to wear underwear comfortably for several years, but I can happily say I can do that now.
I watched a YouTube video that was released a few years ago, called Small Fiber Polyneuropathy and Central Sensitization: How Do These Concepts Apply to UCPP. And in this video the doctors explained that roughly 50% of patients with fibromyalgia also demonstrated consistency with small fiber polyneuropathy when they did these biopsies. This is very important because this kind of links into central sensitization disorders, which can be TMJ, pelvic floor dysfunction, migraine headaches, the list goes on and on. But in his retrospective study, which had the objective to demonstrate the prevalence of small fiber neuropathy in patients with chronic pelvic pain, 64% of them actually also had small fiber neuropathy in their biopsies. This is huge and important because this can show how, over time, we might find better treatments because all these people are having fibromyalgia, central sensitization, pelvic floor dysfunction, and it’s related to small fiber neuropathy. Some other examples are migraine headache, IBS, endometriosis, interstitial cystitis, vulvodynia and other chronic pain syndromes. It’s an interesting avenue to look at, although there’s limited research at this point.
With central sensitization and small fiber neuropathy, what are some types of treatments and are they treated similar to fibromyalgia?
I found that the treatments I used for my pudendal neuralgia and vulvodynia or vestibulodyniapretty were very similar to treatments for my TMJ and chronic headaches.
I did things such as pelvic floor physiotherapy, which I think is one of the best things anyone can do because your nervous system can learn how to down regulate and relax when you learn mindfulness and different physiotherapy movements. If someone has tried physiotherapy before and feels like it didn’t work, I encourage them to find a physiotherapist that really understands them. I’ve tried several beore I found a great one that really truly helped me.
Botox injections can relax the muscle. Trigger point injections can also relax the muscle and over time, I’ve heard that the breakdown of the fascia and muscles can help release the tension specifically for pudendal neuralgia. I did CT guided nerve blocks, where essentially I couldn’t feel my whole vagina for about 20 hours roughly, which was a good thing and a bad thing that also feels extremely weird. But over time, nerve blocks can calm the nervous system.
Gabapentin also really really helped me. Rectal diazepam helped me. I do caution people that they can be addictive. I tried a really weird treatment, which was ketamine infusions, which most people haven’t had the opportunity to try. And I won’t lie, there’s a lot of side effects and it doesn’t work for everybody. But it really, really helped me overall with a lot of my chronic pain.
What recommendations can you give somebody who has pelvic pain?
One great resource that I’ll highly recommend is the National Vulvodynia Association. They have a list of support providers as well as a list of doctors around the world who might be able to assist with specialized pelvic pain, like vulvodynia. I always recommend starting with your family doctor. Get a referral to a gynecologist or pelvic floor physiotherapist. However, if they’re not helping, please change family doctors. Please don’t settle for bad health care. Continue fighting for yourself.
Also, just don’t give up. Find people online like the vulvodynia support group on Facebook, or Tight Lipped podcast, which is another great community of people with pelvic pain to help you and support you. It’s so important to have someone to talk to whether that’s a therapist, a counselor, your family doctor, a best friend, someone who you feel really safe with. The more we talk about it, the more we realize we’re not alone. So don’t be afraid to share that with someone whether that’s a medical professional, or a friend, or even an online friend, like my friend Michelle from the Happy Pelvis.
To hear Leilani talk more about ways to manage your pelvic plane and for resources, listen to episode 157: Managing Pelivc Pain, on the Vaginas, Vulvas, and Vibrators podcast.
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