Best explanation I've ever heard. Thankd! An Interventional Radiologist is offering pudendal nerve cryoablation to treat my severe left scrotal pain. I've had two 100% successful nerve blocks done at the ischial spine. He wants to do a block at the Alcock's Canal, then treat there. But that's distal to my previous blocks AND to the most common entrapment location for that nerve - the spot where the sacrospinus and sacrotuberous ligaments cross. Apparently all ablation types for treating pudendal neuralgia get done this way. This doesn't make sense to me, and I can't talk to this doctor until the day I fly there for the block. What am I missing? I'm an Electrical Engineer who spent my career in Silicon Valley developing novel medical devices, including implantable defibrillators and RF generators for performing ablation procedures - which is what i was expecting to be offerred. BUT - if that block doesn't help, wouldn't that verify my nerve issue is proximal to the canal and is likely trapped between the ligaments? Pain started during a six month time period where I had to use a knee cart for a right leg injury. I tried the DRG stimulator, and have had my genitofemoral nerve and the perineal branch of my left pudendal nerve cut.
Very interesting, thank you for addressing this topic! I wonder if there could be a connection between vulvodynia/vestibulitis and (undiagnosed) neurodivergence? After years of chronic pain I received the diagnosis vestibulitis. 3 years later I was diagnosed with inattentive adhd (when I was 30 years old). I suspect that I'm autistic too (I'm currently in the autism assessment). I once heard that people with vulvodynia usually have typical characteristics. For example being very anxious, stressed (long lasting psychosocial stress) and being perfectionistic which can be a sign of unhealthy coping mechanisms for neurodivergence. In addition, I recently discovered that I had repressed several traumas (sexual violence / rape) for years. Maybe this played a role in developing this pain syndrome too.
I have hypermobility EDS. When I was in my early twenties, I worked as a waitress, and my joints hurt so bad that I would limp at work. My husband and I lost our very first child from an early miscarriage. About a year after having our fourth son, I went to a rheumatologist because the joint pain was unbearable. He diagnosed me with EDS. Another rheumatologist diagnosed me shortly after with fibromyalgia. Before, I was constantly in and out of the ER for excruciating pain and dismissed by several doctors 15:11 . I was on antidepressants which didn't do much. After having my first daughter about a year later, my GP prescribed Norco. It was the only time I felt "normal." But about a year after that, the opioid epidemic started, and no doctor would prescribe it anymore. I was back to square one. After the birth of our seventh child, I was put on gabapentin. It worked wonders for about 5 months, then it started causing depression for me (a rare side effect), and I had to get off of it. It took a couple of years to get into the pain clinic in Albuquerque, and they put me on low-dose Naltrexone after the birth of our eighth child. It has been a game changer. It increases your body's natural production of endorphins. It doesn't take away all the pain, but it makes everything much more manageable. I'm even able to take it while pregnant with our ninth. I do have to pay for it out of pocket, as it is not FDA approved yet. (So far, there's only been one study on it for chronic pain.) It costs me about $300-$400 a year as I have to have it shipped to me from a compounding pharmacy in Phoenix. I hope this helps you all. God bless you on all of your journeys and don’t give up.💖
67 yrs old. Three premature babies. Super severe rectocele that no doctor has ever done anything about "Wow! That's bad" I have EDS but nobody cares. Thank you for educating folks. I wish I'd known this stuff earlier.
I have been itchy for about 10 years now. Was constantly treated for yeast infection though yeast wasn't present. I eventually just suffered in silence. After your video on LS came up in an EDS group I'm in (I have hEDS), I started to bring up my itchiness again and the possibility of LS. So far, my GP and GYN both declined to do a punch biopsy, any further checks for anything else, and went with a prescription for clobetasol cream. Granted, I am very nervous of getting one, but I would like to have a confirmation of what's going on. The cream has indeed lessened the itching and inflammation my tissues had. Due to being diagnosed with uterine prolapse, I'm just waiting to get a call for my referral to urogynocology. I plan to bring it all up with them next. I want to know what exactly is going on so I can ensure it's being treated properly.
Should biopsy be done before or after starting steroids or protopic? If treatment has started, should it be paused for a while to aid in diagnosis with biopsy?
First baby came at 36 due to preeclampsia. Pitocin got me into labor and fully delivered in just over 1 hour. 2nd baby polyhydramnios, pots dx, spontaneous delivery at 31 weeks. 3rd baby delivered at 35w due to cholestasis. 4th baby pancreatitis in 2nd trimester, in the hospital for a month in labor, finally delivered due to severe polyhydramnios at 35 weeks. Currently dealing with unbearable pubic symphysis pain that gets worse by the day. Nobody believes me. I’m 1 1/2 years post partum and feel like there’s a flaming chainsaw to the pubic symphysis. Thank you so much for sharing this data. It’s too late for me, but I hope this reaches all the people that need it.
First baby came at 36 due to preeclampsia. Pitocin got me into labor and fully delivered in just over 1 hour. 2nd baby polyhydramnios, pots dx, spontaneous delivery at 31 weeks. 3rd baby delivered at 35w due to cholestasis. 4th baby pancreatitis in 2nd trimester, in the hospital for a month in labor, finally delivered due to severe polyhydramnios at 35 weeks. Currently dealing with unbearable pubic symphysis pain that gets worse by the day. Nobody believes me. I’m 1 1/2 years post partum and feel like there’s a flaming chainsaw to the pubic symphysis. Thank you so much for sharing this data. It’s too late for me, but I hope this reaches all the people that need it.
I had an epidural that only worked on half of my body, and was told that this could be due to EDS. Is there any evidence to support abnormal reactions to anesthetics in general? I also seem to need a lot more Novocain when I have dental work.
Can’t even get an NHS hEDS (or as we call it Hypermobility spectrum disorder) specialist in our area. Had to pay private to get my daughter’s diagnosis - money ran out so not sure what to do now????
Hey Dr C.B 👋🏻 I'm a 32 yo f medical student & scientist with hEDS. I just wanted to confirm everything you have said matches exactly the experiences I have had to date including pregnancy & giving birth. You have it exactly right 👍🏻 One thing you don't mention that also may be interesting to consider is stretch marks in pregnancy. My mother has lots of them, but I don't have any. We both gave birth in our early 20s & I'm a slim caucasian woman. It interests me because I expected to get some or have a bit of a saggy belly (my pregnancy trophies 🏆) - but bizarrely, I never got any of that. You can't even tell from looking at my body that I have been pregnant and given birth at all. I'm ok with that now, but it surprised me & I am now wondering if it's because of my hEDS and whether the stretchy skin simply meant everything stretched then went back to normal without overstretching. Strange but fascinating!
You did an amazing job explaining Ehlers Danlos, aside from how it affects gynecology! I wish someone explained what being "double-jointed" really meant when I was younger, like you did here. How differently I would've lived my life! Such a gross deficit in the knowledge of the medical field for such a debilitating condition that can actually ruin your life! I'm now on disability after a life of trauma & working way too hard, with a plethora of issues that fall under the blanket of EDS. From the joints, to the digestive system, skin, sexual organs, and blood vessels. The countless sprains and bones breaking from turning my unstable ankles so often. It all makes sense now! End stage osteoarthritis diagnosed at only 45, 2 new hips now at 47, a wrecked spine in 3 areas, feet need bunion surgery, and arthritic hands that altogether prevent me from working or even doing the things I love, like gardening or playing guitar. Such a bummer! The first time any medical professional even mentioned it wasnt even the Dr. at my Rheumatologist's office. It was the physicians assistant. And I wonder if even SHE would've known or said anything if she herself didn't have EDS! But it was almost like in passing. Not even an official diagnosis of EDS for me. Just a note of Joint Hypermobility! Then they handed me a dictionary sized packet called "Living With Ehlers-Danlos Syndrome and Joint Hypermobility." Like, yup, this could explain ALL your debilitating health issues, but don't worry about it. Here's a packet you'll never get through. Thank you infinity for helping to fill that huge void in medical education and taking the time, brother! This video alone is priceless!
Great information, and well presented! You mentioned that there are various kinds of blocks, and I know that, in theory, only more distal parts of the nerve are numbed by a block. I also know that even the blocks at the ischial spine aren't easy to do. Ive had 4 and 2 missed. Knowing the various locations on the nerve where blocks can be done would REALLY help PN patients to isolate exactly where the nerve is being irritated. Knowing that would be of tremendous help in deciding on treatment options - especially for surgical approach selection for decompression surgery. Can you please list the different potential locations for blocks and what each block is called, so we know what to ask for?
What I’m not seeing that women don’t usually report to their primary and specialists are labial issues due to lack of collagen starting early on. Women get cosmetic surgery for this. Pudendal neuralgia makes it difficult to proceed with such surgeries as well. You mentioned lichen schlerosis as an upcoming topic. I notice this is often female centered and often doesn’t go in to treatment for men who have failed to respond to tacrolimus cream.steroids.
I have EDS and had c-sections w/both. After first child I had an ilues stomach opted not to work for three days and had NG tube. Second child I had my bladder stop working and went home with a catheter for three weeks. There was no child #3 😄. After other surgeries with bleeding issues such as a severe GI bleed, I ended up in the ICU, BP 54/36, rapid transfused 4 units of blood 2 at a time. It was finally after this I was diagnosed with EDS multiple types. Thank you for educating people on this condition!!! 🥰 Greatly appreciated!!!
I haven’t been diagnosed but I suspect I may have a form of EDS. My parents were told when I was a baby that I had “weak ankles” when I was learning to walk and had to have special shoes. I have sprained my ankles and wrists numerous times over the years. I can stack my fingers I use to do that all the time. 😂 I use to be able to put my foot behind my head when I was younger, my weight prevents that now. During my first pregnancy I carried very low, my ObGyn mentioned several times that she had never seen someone carry their first baby that low. I had a lot of pelvic pain but actually went into labor a week passed my due date. I tore pretty badly and had to have a vacuum extraction. The 2nd pregnancy was easier but I carried very high so I hurt in my low ribs mostly. He was also late and I was induced, that labor was a little easier, with zero tears but I hemorrhaged afterwards which was scary but it was fine. Now I’m 42yrs old and have chronic back pain. I have a sway back and can’t seem to build up my core strength anymore and everything feels loose in my back and hips. Is it possible that I do have a type of EDS or am I just being a hypochondriac?
6:47 I didn't know I had hEDS, but with my 3rd pregnancy, I complained that my hip hurt really bad and felt like it was going to pop out of socket when I would walk. So the advice the OB gave me was literally to not walk. I was asking for a way to prevent the pain so I could continue walking. Ultimately, I saw a prenatal chiropractor and she was able to make it possible. It was 8 years later that I found out I have hEDS. And with that same pregnancy, but not my prior two, I went from 5cm to 10 cm in about 15 minutes...the nurses were in disbelief.
I get that doctors can’t know everything. Humans are complex and our bodies are amazing. But I wish the doc would say “I don’t know “ instead of labeling our issues as psychological. Or it’s because we don’t take care of ourselves.
My Dad died of Veds and I carry the gene for VEDS. I am so scared to death of it taking me soon. I am in Iowa and where are you? I would love to talk with you about this. Do you take virtual patients?
My older brother was our first family member diagnosed with EDS. Then our mom and then her mom. I’m not officially diagnosed. However I have a variety of issues that were mentioned in this video. My labors have been super fast, urine incontinence and hypermobility… etc. My cousin on my bio father’s side was diagnosed about two years ago with EDS.
Just recently got a HSD diagnosis. My fight for a diagnosis didn’t begin until 2018, two years after a double microdiscetomy, after my nephew was diagnosed with hEDS. Ultimately I will fight for a hEDS diagnosis, but I live in Belgium, where there is only one specialist hospital in the entire country, who basically ignore you unless you might have a rare type, where they can test genetically for! All throughout the revalidation for my back, when I could touch my toes again and contort somewhat, I was just faced with surprise at how flexible I was! No one suggested something else might be going on. I had to look into everything myself. Anyway, so many things in the video make sense, things I didn't even think of before like dryness; I have had skin splitting because of it. It seemed like a "small" issue at the time (and I didn't want to speak up), but all these "small" things add up. I might not have had kids, but I don't know if I want to risk it with unstable SIJs (and no doctor I've ever spoken to believes that they can dislocate). Just so many things to consider! I'm just a huge puzzle that doesn't fit together properly because I'm riddled with faulty collagen.
Really? All the issues I’ve had with my joints dislocating, all the issues after having my kids and not one doctor put together the pieces? I am ordering a mail in test.
I have the vascular type. Passing out nosebleeds joint dislocations pain inability to heal lack of energy intolerance to heat/cold and a million other pain in the ass problems since I was 7 years old. I'm 43 and only heard about EDS a year ago.
We need a team, just there's no chance to get one. Sour video was eye opening, thank you so much for that! In Austria there's hardly any doctor understanding EDS on more than "oh you're hypermobile" level. It's heartbreaking actually.
What are your thoughts on EDS ans ND? Especially ADHD? Could EDS affect the dopamine receptors or the secretion of dopamine (same as you said about lubrication glands)? As they tend to go hand in hand. To the point of youre ADHD and pregnant be prewarned of early and fast labour.
I have EDS. When I was 25, I had a c-section, after which I continued to bleed, and 3 months later, a complete uterine rupture with massive hemorrhage. I thank the doctor who saved my life that day, every day.
EDS here. Hypermobile type (genetic panel pending..) I’ve been married 27 years and have had two children and STILL have excruciating pain. Even after a hysterectomy at age 25 due to excessive bleeding and pelvic floor reconstruction at 37. Took four months of “trying” to actually have sex successfully, and it was still excruciating. Got pregnant almost immediately and had a severely traumatic birth (fourth degree tearing, long labour, almost four hours pushing…I have very unstretchy tissues). I’ve never had sex without pain. I’m so frustrated. Also, absolutely no specialists in my province who know about it in any amount that’s useful.
I have 3 Zebra diseases. EDS, Polycythemia Vera and Cholangiocarcinoma. And I have some other uncommon health issues. Being diagnosed with a rare disease doesn’t make the pain any better. But the validation decreases all the gaslighting. I can’t tell you how many times I’ve been told I’m a lazy faker. It’s important for patients to get diagnosed. And it’s important that doctors explain to family members that the limitations are real.
