Chronic Pelvic Pain Is A Nervous System Problem As Much As A Pelvic One

Pain that lingers for months doesn’t deserve a shrug or a “you’re still healing.” Chronic pelvic pain can be life-altering, and the hardest part for many people is not just the symptoms, but the confusion, the misdiagnoses, and the feeling of being bounced from office to office without anyone putting the full puzzle together.

Speaking of Women's Health Podcast host Dr. Holly Thacker sits down with Ashley Gubbels, MD, a board-certified OB-GYN and internationally recognized expert in minimally invasive gynecologic surgery and pelvic pain management, to define what chronic pelvic pain actually is and why it is so often overlooked. They talk through the most common drivers, including endometriosis and adenomyosis, and why even excellent surgery may not fully resolve symptoms when the nervous system has learned the pain pattern. You’ll hear how inflammation, scarring, and repeated monthly signaling can escalate into central sensitization, where pain pathways become easier to trigger over time.

If you’ve ever wondered why pelvic pain is so complicated or why it can persist after standard care, this conversation gives you language, context, and a clear next-step mindset.

Transcript

Welcome And Why This Matters

Dr. \ 0:11

Welcome to the Speaking of Women's Health podcast. I'm your host, Dr. Holly Thacker, and I am back in the Sunflower House for a podcast with a very special guest. I am talked about her several times on my previous podcast saying, oh, you have to listen to Dr. Goobel's and the one on chronic pelvic pain. And unfortunately, it was one of the podcasts that got eaten up in the interwebs. And so we are re-recording, but this is definitely worth your wait, listeners. So thanks for joining us. I'm your host, uh Dr. Holly Thacker, the executive director of speaking of women's health. And we're going to dive into a topic that unfortunately affects millions of women, but is so misunderstood that sometimes it's overlooked. Sometimes it's misdiagnosed. It's a chronic pelvic pain or CPP is what we use in the medical chart. Joining me today is Dr. Ashley Goobels. She is a leading expert in minimally invasive gynecologic surgery and pelvic pain management. In fact, she's internationally known and travels all around the world to discuss this and present research and interact with leading experts. So we're so fortunate to have her. She's a board-certified OBGYN, she's fellowship trained in gynecologic surgery. And her practice is very specialized and focused. She has a special interest and expertise in prudental neuralgia and other pelvic neuropathies. Before she joined us uh at the Cleveland Clinic, she served in the United States Air Force as a general OBGYN and the medical director of 99M DG Women's Health Clinic. Dr. Goobels is also the mother of a beautiful three and a half-year-old girl named Emerson. And as some of my listeners know, I have a son named Emerson. So a little bit of difference in this spelling. Welcome, Dr. Goobels. We're so happy to have you here.

SPEAKER_00 2:18

Thank you for having me. I appreciate it.

Dr. \ 2:22

And so um why don't we just start first with the basics?

What Counts As Chronic Pelvic Pain

Dr. \ 2:26

Um, tell us what chronic pelvic pain is in women and how it's different than the occasional discomfort that we all get with cramps and other pelvic symptoms.

SPEAKER_00 2:36

Yeah, so chronic pelvic pain has had varying definitions over time and is um now defined as pain in the pelvis that's not responsive to typical um therapies. So, you know, maybe that is excision of endometriosis, but continued pain that persists beyond um those typical treatments. Um it's usually, you know, at least something that's lasting six months in duration and has to have impact on someone's life. So causing functional, um, functional impacts.

Dr. \ 3:10

And I was like surprised when I started to delve into this uh topic uh because um I had a loved one that I thought had prudental neuralgia, but it's not, it's actually of a spine. And I was really delving into this field thinking, you know, I didn't seem to be very well trained in this area. I always knew that we had a special clinic that had lots of different subspecialists dealing with it. But reading about this condition in women, I was shocked to find out how many women post-delivery, postpartum, post-trauma, post-surgery have chronic pelvic pain.

SPEAKER_00 3:49

Yeah, it's um quoted anywhere from 15 to 20 for 25% of women over the course of their lifetime. So, of course, depending on the specific condition that we're talking about, that's either more or less endometriosis kind of being the most common cause for chronic pelvic pain, um, affecting about one in 10, although that might be even an underestimate, versus pudendal neuralgia being more along the lines of uh one in a hundred thousand. Um, but again, that's also probably underestimated because, like you said, so many of us are really, as gynecologists and urologists, et cetera, not really trained in these um in these conditions. People definitely are learning more, you know, over time, um, but it's still very unrecognized. And I think often physicians don't really know what to do, and so sometimes it's just kind of a oh, you know, you're still you're still healing, uh, it'll be fine, it will go away, and it doesn't. Um, and so really making sure that we're getting people um trained and knowledgeable, at least so they've heard of the condition, so that they can, you know, research and and um help get patients either connected to someone or expand their own skill set.

Dr. \ 5:03

And I I I've just been fascinated um in several different realms in medicine where there's just overlap between different specialties and we all have our own approach. And I think that's one reason I connected with you because you're someone

How A Surgeon Specializes In Pain

Dr. \ 5:17

who took a lot of different interests and expertise in different areas to bring it together. And I think for some of these difficult conditions that patients can go from doctor to doctor, they kind of need that. Tell us your story about how you what you were interested in when you were in medical school and kind of how you came to this field, because it I think it's very reflective of a very interesting background.

SPEAKER_00 5:38

Yeah, so I I um when I wanted to go to med school, I always thought I was gonna be in OBGIN. I wanted to deliver babies and and all of that. And um through med school, sort of our initial classroom work, the first thing um that our school did was went through neurology, which I found fascinating and thought I, you know, you would always be on that cutting edge, and then arranged my schedule so that I did that as my first clinical rotation. And you know, it was at a rehab facility, and you know, not a lot changes from day to day, and you can tell people exactly where they stroked, but you you can't do a lot about it, at least 20 some years ago, although I think that's still kind of the case, unfortunately. And you know, I thought, okay, well, that's not quite a right fit. And then I did surgery, and I actually fell in love with that a lot more than I was expecting. And then I did OB, and I thought, okay, well, this is a nice mesh of surgery and the obstetric side, and so I went down that pathway. And then while I was a resident, um thought about again, delved into some of the other surgical subspecialties, minimally invasive GYN surgery, or now the term is complex benign gynacology, um wasn't didn't really exist much then. Um the fellowships were just starting, so it wasn't really something I was aware of. And um, you know, ultimately decided, okay, I'm gonna stay a generalist, go back and do my military payback time, because again, um, as you mentioned, that's how I paid for med school. And sort of, you know, again, finding patients with pelvic pain in that generalist practice, um, learned about physical therapy and some of these, you know, muscle agents from a physical therapist who just came to talk to our group, which was a group of six physicians on an active duty base, and then decided to go back to fellowship and matched at a program that really focused on chronic pelvic pain. So it was endometriosis, but it was also more than that. It was interstitial cystitis, pudendal neuralgia, myofascial pelvic pain, and really opened my eyes to sort of the breadth of what could be done for for women, um, particularly those that have surgery for endo and don't get better. Um, and my um my mentor, Michael Hibner, had trained in Nance, France with a neurosurgeon who was doing open transgluteal pedundal nerve decompression surgery. And it really within that first year sort of meshed that I was like, you know, this is neurology, it's surgery, it's obstetrics. I also really liked psychiatry. Of course, you know, when we've been suffering through pain for so long, that does a number on somebody's psyche, um, anxiety, depression. And so it was just like a natural fit for me, and it was not a path that I was aware existed or it didn't exist, honestly, um, then it's kind of made my my career a bit. And so it's it's challenging work, it's a lot of sifting through history and really trying to understand symptoms and how they came about to work your way back to what you think the original culprit is, and then figuring out how do you deconstruct everything that's going on, um, and then you know, deal with the underlying issue along with all of the overlay that has happened over time, right? Medical trauma from not being believed or from people trying to do things that you know have have made somebody worse. Um, all of that part is is really important. And so what we are you know growing here is really a multidisciplinary clinic. So I work with our core team is myself, a family medicine physician that has a women's health fellowship and a nurse practitioner. Um, I work very closely with our pain anesthesiologists, um our interventional radiologists for um nerve blocks that I'm not um trained to provide and more advanced, like neuromodulation impacting nerves. We have our minimally invasive GYN surgery team. Um, so there's going to be six of us total who are doing surgery for endometriosis and adenomiosis. I'm hoping to get, you know, down the road a even like a one-year fellowship in chronic pelvic pain to sort of add on to people who are doing gyne surgery to understand what other things that we can actually be doing for this patient population. So it's been really rewarding.

Dr. \ 9:53

That is just so superb. I've heard this phrase and it's really resonated with me that uh pain is universal, but suffering is optional. And so that's why I really, you know, commend

Multidisciplinary Care And Medical Trauma

Dr. \ 10:06

you for bringing all these resources together. And I think that, you know, it's impossible for one person to know everything. And there's so many other fields. Like I've had physical therapists on our podcast, and it's amazing, you know, they say, well, if it wasn't for surgeons and scarring and fascial problems, we wouldn't be in business, and we're really in business and we know how to deal with this. And it's something that I don't think I don't remember in my general surgery and OB rotations, you know, ever, ever learning about. Certainly you learned about wound care, but it it was very kind of specific and superficial. And so I think that the more that you involve people, uh just for our listeners, I want to just go over some basic concepts. So talk tell us a little bit about what endometriosis is and adenomiosis and these common pelvic diseases in women's uh pelvis.

SPEAKER_00 10:54

Yeah, so endometriosis is um where tissue and cells that are what should be lining inside of the uterus are out into the abdomen. They're growing on lots of different structures and they don't know that they're in the wrong spot. Now we don't know exactly, is it identical to what's the the uterine lining? We don't know how it gets there. Um we know it's it has some hormonal response to it, but it can also create its own hormones, and so it's a particularly challenging disease. Like I mentioned, it grows most often in the pelvis, it can grow into the bowel, the appendix, it can also grow up into the diaphragm, there's cases in the lung, brain, lots of other weird random places that we really don't understand how it's how it's getting there. Um, but the vast majority being in the pelvis, and it activates nerve endings, which is how our body senses pain. Pain is an electrical signal that travels through a nerve up into the brain where it's perceived. And so you can get inflammation around the nerves, you can get fibrosis or scar tissue around the nerves, you get the hormonal fluctuations that are over time essentially, you know, every, you know, if you have a menstrual cycle every month, you're getting this repeating every single month. And our body, unfortunately, gets, you know, better at things, right? We get better at writing as we do more of that as children, we get better at surgery the longer you do it. And our body gets better at pain signals the longer and the more often it's exposed to them. And so it's sort of this idea of the nerves that wire together fire together, and so you can have the whole system, nervous system really ramping up. Um, and even with you know adequate excision of disease, some people do not get relief. I would say the most do, but it's not just surgery that they need to really manage that. Um, adenomiosis on the flip side is the similar cells, but they're inside the wall of the uterus, they're in the muscle of the uterus. And so, again, if they kind of respond to the hormones and there's you know microscopic bleeding, there's nowhere for that blood to go. That creates inflammation, that creates

Endometriosis And Adenomyosis Basics

SPEAKER_00 12:56

um uterine irritability, creates more cramping, contributes to heavy menstrual cycles, and these things really end up to be quite debilitating for women. Um, and you know, as you mentioned, pain is is um universal, suffering is not. It's also an impact on everyone's individual nervous system. So are you somebody who, you know, your nervous system is a little bit more sensitive? What's the, you know, your past exposures in terms of, you know, how depressed might you get from pain? All of those things really layer on and create a very different, you know, you can take almost the same pelvis and have people experience that very differently, which is what makes the challenge in in treating these patients, because you do have to very much individualize care.

Dr. \ 13:41

That's excellent. Um and certainly from a basic woman's health perspective, I mean, menstrual cramps can be primary or secondary. And I think the average uh OBGYN uh or primary care doctor can can address that. Certainly stopping ovulation and cycling if someone's not trying to become pregnant can be helpful and also maybe preserve fertility. Um do you see fibroids, which are muscle overgrowth of the uterus, which up to it seems like 80% of women have. Do you see that involved in pain, or is it mainly the endo, adeno central and peripheral nervous system?

SPEAKER_00 14:16

Yeah, it's more, it's more so that. I mean, you definitely can have fibroids in terms of you know, large causing just pressure symptoms. Um, you can have people who have degenerating fibroids where it's sort of outgrown its blood supply and it's almost like the fibroids having a heart attack. Um pain related from that standpoint that that can be contributors. Um, I'd say, you know, in general, um, most fibroids are probably not necessarily causing chronic pelvic pain in the in the sense that we think about, but they can be certainly mixed in. So we have people that have fibroids and they have endometriosis, and um and those cases are always a challenge because for whatever reason they tend to bleed more and things from that standpoint, something that the interplay between those two conditions um creates.

Dr. \ 14:59

And you have been listening to the Speaking a Women's Health podcast. I'm your host, Dr. Holly Thacker in the Sunflower House with minimally invasive surgeon and chronic pelvic pain expert, Dr. Ashley Goobels. And we're talking about uh the causes of pelvic pain. Probably in the next podcast, we'll get into some of the treatment options. But as we're still exploring this issue, um there's other things, of course, in the pelvis besides the uh female pelvic organs that we've talked about. Do you want to talk about the bladder and the bowel and interstitial secitis and irritable bowel syndrome, vulvadinia, that whole perspective and how you tease that out?

SPEAKER_00 15:38

Yeah, yeah. I think that before we move into those, actually, one of the things I really want to highlight is pelvic floor. So this is really the thing that can I think connects a lot of these things is our pelvic floor muscles, which are like a bowl of muscles sort of supporting everything internally. So things have to pass out of them, things have to pass into them. And if they're tight and contracted, because right, if you've been in pain, you're naturally tensing and guarding. And um then, you know, that begets more pain if you attempt to have sex. And it's that's really the biggest challenge, I think, in terms of what we have to treat. Um, we can definitely make impact a lot on a lot of these other conditions, but in terms of what we have available for really pelvic floor, that's where our amazing pelvic floor physical therapists come in and do amazing work with manual release, teaching how to breathe and get those muscles to actually move again, how they're supposed to. Um, and that is one of my goals is to be the person that figures out like how do we actually find an adequate treatment for this condition. Um, so then circling back, you know, right, exactly. There's a lot of other organs in the pelvis. Um, so the bladder can cause pain. It used to be called interstitial cystitis, now it's um bladder pain syndrome, where it's just the sensation that the pain is coming from the bladder. It's a clinical diagnosis, so we don't have specific testing. We of course make sure that we rule out UTI. Sometimes that condition can develop, you know, after someone's had a UTI. Um bladder infection. Bladder infection, exactly. Sorry, and um and kind of have this again, nervous system heightens and continues that sending that same pain sensation. Um sometimes it's related to uh sort of allergens and these different cells that exist near nerve endings in the bladder. Again, we're not really sure exactly what caused a lot of these conditions because they're you know historically quite underfunded from a research standpoint. Um, the bowel, um again, irritable bowel syndrome, very, very common, um, high prevalence in our patients with endometriosis, um, whether or not there's actually disease growing on the bowel. So constipation being really the more significant impactor of the two between diarrhea. You have some people that have mixed IBS, so they kind of fluctuate between diarrhea and constipation on their own. Um, and and that's really problematic. And so the I think where the modern medical system does a disservice to these patients is they go to the gynecologist for their menstrual pain and their period, and they think about their uterus, and they go to the urologist to talk about their bladder, and they go to the GI and maybe colorectal to talk about the bowel. And no one's necessarily looking at how are these things all functioning together, how are we optimizing. Of course, each physician is trying to kind of optimize its own structure, but you can't really do that in isolation because, again, there's so much nervous system overlap in the pelvis with how these organs talk to one another that you know they can very much play off of one another and play off the pelvic floor through a nervous system component as well as just to being next to one another physically. Um, and so I think it's that piece that really is what our program and many of the other professionals

Pelvic Floor, Bladder, And Bowel Overlap

SPEAKER_00 18:57

throughout the US are are looking at pelvic pain in that way, um, as we need to have somebody who owns the house who owns the pelvis. And then of course we dip into our colleagues for their expertise. Like I don't manage, you know, meds for IBS necessarily, um, but um because it that would be a large part of my practice, but it's um, you know, again, getting somebody looking at how all of these things are working and making sure that we're getting adequate treatment to each of those structures.

Dr. \ 19:30

Now, tell us a little bit about the nervous system in terms of and some of the peripheral neuropathies and like vulvadinia. The one thing I've certainly seen in my practice is that when women have vulvidinia, they certainly just seem to be more sensitive in general. And it seems like their nervous system requires a much higher dose of estrogen if they're post-menopausally, locally, you know, to the vagina and vulva area, as well as systemically compared to the average woman. And so I always tell my patients with vulvadinia, if I try to reduce your hormone dose, remind me we already tried that and you got worse. So we won't do it again.

SPEAKER_00 20:08

Yeah, yeah. Yeah, these are are challenging as well, again, underfunded. Um, and so there's the question of is it, you know, there's hormonally mediated, so those that are related to hormones, so sometimes develop when somebody's on long-standing birth control pills because of the estrogen and hypoestrogen, like low estrogen that sort of comes relative in the vaginal tissue. Um, there is thought that there may be some sort of, we call it neuroproliferative disorder where there's a lot of increased nerve endings in that tissue where it transitions from external vulva to internal vagina. Um, and then the other kind of hat is is there something like putendal neuralgia where it's really a nerve injury or nerve signaling issue? Um, the pudendal nerve carries all those signals for any of those conditions, but it's trying to figure out is it the generator for why they're feeling it, feeling pain in the vulva, or is the the skin tissue, et cetera, of the vulva firing the nerve?

Dr. \ 21:06

Um so the chicken or the egg?

SPEAKER_00 21:09

Always the chicken or the egg.

Dr. \ 21:11

And then what about just the brain and the spinal cord? Because of course that is what's all connected to the pelvis. Um, and and how do you help differentiate? Uh I remember you were talking to me, there was like some, I don't know if it was an AI program or something that you were putting in to say it's more likely to be local pelvis or more likely to be spine.

SPEAKER_00 21:32

Yeah. Um again, a lot of it becomes down into history. We know that there are absolutely, you know, changes that are happening in the spinal cord and in the brain. Um, kind of that again, nerves that fire together, wire together and and um become like a well-worn path. So anytime anything triggers, it triggers that pathway very easy. It's like a well-worn path in the grass. Um, so it takes a lot to sort start trying to undo that, and that's where. You know, we're using medications like gabapentin or pregabolin or ametryptaline, some like antidepressants and those types of things that work in that central nervous system to try to dampen the signal, dampen how easily that signal can get transmitted to the brain. Of course, impacts with that is that drugs often have side effects, and that can be challenging to kind of balance around how am I managing your pain, but not causing too much side effect. And so, you know, I honestly think far in the future, there's there are already teams that are looking at functional brain MRIs and mapping where pain sensations are felt. I think way, way in the future, we're gonna mostly be dealing with um non-structural pain, so meaning things that you know I can't cut out as a surgeon, um, non-structural pain by stimulating the areas in the brain that are sensing that, because as long as we can interrupt those signal pathways, then we should be able to moderate the pain some.

Dr. \ 23:02

And is that in part how like tens units, these external electrical stimulators work? I mean, does that help rewire the pain at a local level?

SPEAKER_00 23:11

It it it may. We don't fully understand, you know, exactly what those are doing, other than I

Nerves, Vulvodynia, And Pain Rewiring

SPEAKER_00 23:16

kind of tell people it's it's the idea of like a gate method. So I'm stimulating the skin that comes into the nervous system at the same area, and that basically, you know, if that is overwhelming the gate, then the other pain signal can't get through. So that's how that's doing that. There is actually, um, I have an amazing research fellow who's actually hanging out behind me here, who um is a urogynecologist and has studied the use of um tens on the posterior tibial nerve, which is something that is done more so with a needle for like overactive bladder, but is less fat for dysmenorrhea, so painful cramping. And there are a few studies out there that have shown some promise in terms of helping modulate that nervous system by again firing the same nerves and interrupting pain signals. And so we're hoping to evaluate that for like our pudendal neuralgia patients in terms of whether that may be a like a non-invasive um way to manage pain.

Dr. \ 24:13

Fascinating, fascinating. Um and going back to bladder pain syndrome, which used to be called interstitial cystitis, in terms of the diagnostic workup, do you usually do cystoscopy or potassium infusions to trigger?

SPEAKER_00 24:30

Not anymore. So it used to be when I was a resident, we would backfill people's bladder with potassium chloride, which would cause a significant increase in pain. And if it was a big enough increase, we labeled it that. Um that has sort of fallen away as a little bit of an old torture thing, I think. But um, it's really, I mean, again, now a diagnosis of exclusion. So we make sure that there's not a UTI, recurrent UTI. We probably should be looking at things and making sure there's not mycoplasma or ureaplasma, which are kind of these atypical bacteria that can be easily overlooked. Um and then it's again um working through um pelvic floor, nervous system, avoiding potential dietary triggers. So we know that like certain foods, even very healthy foods that get turned to more acidic in the bladder or in the urine, can irritate the bladder more. And so that's one of our first steps is physical therapy and dietary modifications to figure out are there certain triggers in your diet that are really exacerbating this for you and kind of a stepwise approach. I don't necessarily do cystoscopy right off the bat, um, but I am sort of opportunistic about it in terms of if okay, if we're also looking for endometriosis, I may, you know, look in the bladder while we're there. Um, or I, you know, if we continue to have a lot of symptoms once we are, I feel like we're fairly down the pathway, we'll look. Um, there's a subtype of interstitial cystitis, and really it's probably its own condition, truthfully, is um where there are ulcers in the bladder. Um, and that's relatively rare. I've only seen that honestly once uh in my career. So not common, but those patients respond often pretty well to actually like burning those lesions and ablating the scar. Um, so but I think you know, those patients probably end up often more so going down the urology pathway first.

Dr. \ 26:24

So and what about that old-fashioned treatment? You used to see all those ads in the 1970s about DMSO, you know, it's a solvent, it's certainly used in the lab.

Bladder Pain Workup And Treatments

Dr. \ 26:33

Is there DMSO uh installations being done?

SPEAKER_00 26:36

We don't do DMSO anymore. Um, we usually will use a combination of um lidocaine or a long-acting like local anesthetic and then heparin. Um and there are lots of different concoctions out there, so that the anesthetic, of course, gives just acute um potential improvement in pain. The heparin actually is working as an anti-inflammatory in that bladder lining. Um, and some people do well with those, and some people find they really are triggering to them. Um, so it's a it's kind of a trial and error. Um, there are, you know, definitely people have dick different concoctions out there. Um, some people add toridol into the um into the infusion, etc. But there hasn't really been any head-to-head studies looking at is one of these superior or not to another.

Dr. \ 27:21

Yeah. And and what about the oral drug L myron? I've seen some people get some pretty significant relief with that, but then I think there's some warnings regarding retinal problems.

SPEAKER_00 27:31

Yeah, so that has yes, um has been limiting. Uh you know, I historically have not used a lot of that in that we think it's 50% of people respond to it. It may, you may have to take it for six months before you see any symptom relief. Um it can cause hair loss, it can cause weird tastes in the mouth, and then of course, yes, the um the eye changes that they've noticed. And so uh I usually leave that for much further down the algorithm for that reason, um, because it's it's an expensive drug and it for maybe maybe 50% of people improve. Although I would say really when it comes to any of our drugs, it's um everybody's genetics are different, and so what one person will respond to, another person won't. And we don't really have testing for that yet to figure out okay, are you somebody that this is a better drug for? Or, you know, should I start you on this one? It's still kind of in a little bit of that trial and error um process.

Dr. \ 28:30

And then, of course, we have to remember that placebo is one of the most effective drugs we have, yeah, meaning the brain is so powerful, and that's why these randomized controlled placebo control to know what the response is. And and I tell patients, if you have that attitude that you're going to get better, you're more likely to get better just in general. And I I was fascinated by a research trial where they broke people into three categories. One person they measured the strength and exercise and their strength at the end. One, they didn't do any exercise in the middle. One, they said just think about exercising. And of course, the strongest person is the one who does the exercise, but the intermediate was just thinking about exercising. So when I can't make it to the gym, I just think about

Placebo, Mindset, And Closing

Dr. \ 29:12

the gym. Put my abs into existence. So, anyway, this has been so fascinating, and we're gonna bring you back, and we'll have a second edition um talking more uh in-depth about surgery and therapies um and other exciting innovations. So thank you for joining us in the Sunflower House. If you enjoyed this podcast, please give us a five star rating, share it with friends and family, and uh we look forward to seeing you back in the Sunflower House. Remember, be strong, be healthy, and be in charge.