Excellent😊

This guy scared the heck out of me. He mentioned Tarlov cysts as a possible cause of pudendal neuralgia. Two tarlov cysts were found on an MRI … then saw 2 NYC orthopedic pain experts from the Hospital for Special Surgery. They showed me pics of my 2 cysts and pointed out that they were not close enough to the pudendal area to cause my pain. ..tho I thought they looked near the sacrum . They also said that anyone who had Tarlov Cyst surgery with the one doctor, Dr Feigenbaum ,who does this dangerous surgery usually got much worse and came to see them for pain management .Most doctors won’t touch this dangerous area. I have had ups and downs for several years , but chose to listen to these NY experts and I let it go. But my pain remains and is relieved only by relaxation of my mindand the use of Valium Baclofen compounded suppositories . I just heard a podcast by some doctor named Corry Babb…. discussing ways to treat pudendal neuralgia and at the end of his talk he mentioned Tarlov Cysts ! It scared the heck out me as my pain has remained bad .TCs are rarely causal and are known as incidental findings. My husband cannot feel the pain and thinks I’m crazy to worry about TC. …ever since those NY orthopedic doctors had spoken to us. Has anyone ever had TCs treated and actually recovered? Thx!

My question is should I try to go against my sexual aversion and try to have sex even when i'm feeling an intense aversion to it? I know it might seem wrong, but my partner thinks i'm not trying if I don't physically try and maybe he is right???

Thanks -I've started on 13mg DHEA OTC Bezwecan (sp?) Vaginally for 1 week - really great effect on the tissues and sexual desire went from zero to normal. Shocking effect really - to be normal again. I also hesitate to use DHEA orally. I'd like to know more about what specifically rises with oral DHEA -as I understand it we don't really need more estrogen. Thanks again

What about just absence of desire while in the past there was hyper activity - no aversion ?

I had full reconstructive surgery on my vagina. Vaginoplasty, labiaplasty, perinoeplasty ans clitoral hoodectomy. Fillers in the labaial majora (lips w hair). All bc i had one freaking kid. One

Hi! Thanks for a great video! Is prominent and strong hormonal changes with many symptoms regular for EDS patients too? And strong menstrual pains? Irregular periods? I have hEDS and find that my hormonal swings is the greatest catalyst of ALL of my symptoms, and from the days before ovulation until post menstruation it is like my body stops working, all of my symtoms increase like 100% and I litterally get sick (an actual infection of some sort), with fever and a body and mind turned into jelly. Not many people talk about the hormonal effect on the tissue and how it can effect patients with EDS.

Thank you

More doctors like this please. Found out at 39 via social media (confirmed dx by a specialist). Started to lose all faith in the medical system. How can so many of us have gone our whole lives undiagnosed? Why do people on TikTok legit seem to know more about this than actual doctors? At least this one is informed. Thank you!

If he hasn't mentioned it, at the skin pull, bet this guy has EDS himself, hence all the extra knowledge and interest. 💚 The ignorance i run into in nearly every medical encounter gets so tiring. One of the hardest ones most recently was a physiatrist arguing with me about how rare it is to have Endo and PCOS, and PMDD with great disbelief, questioning my reliability...and then when I mentioned it actually seems to be pretty common in the EDS population to have more than one of these conditions co occurring, he literally said "i don't even think EDS exists" he then went on to completely screw me on my MVA insurance claim by saying I would definitely have healed by now, and he can assure me any issues I am currently having are from my preexisting condition, which he greatly downplayed, and answered direct questions the adjuster had asked VERY incorrectly. 🙄

With eds can endometriosis and adenomyosis??

My prudendal nerve was treated with steroid shots vaginally. I no longer lose control of my bladder my PGAD is gone (clitoral over stimulation) and ractal pain is gone. Mine issue is farther up causeing the Pudendal nerve entrapment. I have inflamed Si joints which is affecting the pudendal nerve. I am currently awaiting upcoming steroid shots to my SI joints. Im hoping that helps. Also getting an mri to see what else may be going on.

I had 9 months or pelvic rehab and the pain was unbearable and I only got worse.

Every month 10 days before my period my hypermobility is insane. Lets not forget hypermobility spectrum disorders. Connective tissue in the brain, so many of us have Asperger's or autism too. Collagen is just everywhere and I sufer so much and take three times longer to heal. I just need braces daily.

This is an excellent video. It's very informative and clear. I recently received confirmation of hypermobility diagnosis by a rheumatology consultant. I have many of the symptoms you described and unexplained chronic pain all my life.

Such great information! Nearly 8 month post partum mum here still experiencing issues. Tried estrogen and it worked well for a couple weeks to relieve some pain but then it came back in full force recently around ovulation time. About to try intrarosa - how long should you give intrarosa to see a positive affect?

This video was wonderfully educational. I don’t have hyper mobile issues, so drs always say I can’t have EDS. But I have pelvic prolapse issues, retroverted uterus, dysautonoma, slow skin healing, easy scaring, jaw dislocation from tbj, and more. I’m going to speak to my doctor about genetic testing. Thank you for this!

Dr.'s hate it when you educate and advocate for yourself.

I just saw your video. I was born in 1963. I was not diagnosed till around 2011, when my twins were 4. One of my twins was diagnosed with it. I am due a hysterectomy end of October. I hope I can get my surgeon to watch this. Im so angry that I have suffered for years. No doctor told me EDS affects womb too. Now my daughters both have issues, PCOS and PMDD.

I have had PRP treatment it works

My sister died last month, she had EDS but we don’t know what type she had , she had bladder infections all de time, she also had hydronephrosis, she needed a catéter to pi, she was 50 years old at the time she died, it looked the she had some vascular type

My sister died last month, she had EDS but we don’t know what type she had , she had bladder infections all de time, she also had hydronephrosis, she needed a catéter to pi, she was 50 years old at the time she died, it looked the she had some vascular type

I have eds from my maternal side. I was born very early and suddenly. The doctor called it an "incompetent cervix" back then. My Nana had early sudden births for all of her children as well. Even 10 years ago doctors had very little awareness of eds and pelvic floor issues. I'm glad doctors like you are out there doing the work.

Great video! I have hEDS but suspected to have actually classic or classic-like … this pretty much sums up many of the issues I have experienced. I’ve been told to an inverted uterus and there’s pelvic congestive syndrome 😅

Have you done a video on thrush? Especially embedded? Because this seems to be a bit of an issue with estrogen - how to deal with GSM and thrush, and does systemic also exasperate it?

Hi Dr. Babb, thank you so much for this. I’m in the process of getting this medication. I haven’t spoken to my gyn yet though. Do you still feel the same way about this medication? I’m so worried about the dizziness and possible fainting. Of course I would take right before going to sleep. I’m healthy, I don’t drink. I am 60 and post menopausal. I always enjoyed an active and healthy sex life with my husband. Just lately I have no desire and I want that feeling back. What do you think please? Thank you for any additional info and comments you might have now 2 years later Dr. Babb :)

Ok so not sure if anyone else has this, kinda gross but the rectocele thing---I am loosing the muscle tone to even push out crap and for a long time I have noticed that I can feel the crap in my rectum... through my vagina. Sometimes it takes extra effort to even fart. Sorry, big time TMI for real, but can I get a witness? I also get weird random pains in my vagina sidewall as a consequence of leg exercises (abductions and adductions) or the bounce from jogging. Is that a thing? I have not been diagnosed but I have been hyper mobile with loud creaky joints since I was 12-13 and am 40 now. Most frustrating thing is that now I am starting to get inflammation or stiffness that doesn't let me pop things back in place like I used to be able to when I was younger 😂. If my knees felt bent the wrong way I could literally bend over and manually just push them and they would loudly pop "back in place." I have one side that feels off that has been stuck like that since spring time and it's fall now. And yes, have had super heavy periods and bad anemia since adolescence. Whenever I report this, I am just told to get on the pill, and take iron, but somehow I have always felt that "the pill" wasn't the answer, plus I don't want to be even more hormonal and gain weight if I am not even sexually active.

can you talk more about eds the vascular one more in depth

Also chronic interstitial cystitis.

Wow! This is me. I been experiencing this in my marriage for years. I just thought I would live in a sexless marriage forever.

Here is what a bright young woman dematologist says re; LS. kzbin.info/www/bejne/qoXCg2tobtRrZ5Isi=yCyeetcNQzji78Um My thought is, if we can find the cause of this one painful complex, we might be able to help many other "Auto-imune" disorders. Bodies attacking themselves for no reason makes no sense to me. Back in the day, there were many words for coughing but causes were not understood. Asthma is not congestive heart failure or pneumonia. LS must be caused by something or a combination of somethings. If it really is genetic, where are the gene therapies?

Dr. Cory, LS pain is not psychosomatic. Women with extensive scar tissue like me, which won't stretch at all, get vaginal tears, similar to painful anal fissures from constipation. The entire perineum can be affected, white and ruched, causing stretching injury during BMs. This is a serious condition with a high risk of other opportunistic infections, like pseudomonas in swimming pools, not just possible cancer. My libido was fine! I desired my husband very much. I cannot perform without vulvar and vaginal injury. Talk about low self esteem and putting stress on an excellent marriage. I don't want young women going through 15 years of daily pain like me, then being told it is their own body attacking itself, with no proof of that assertion. I am frustrated and furious that I can find no research into the actual causes of LS. Mine is atropic now. Some scary shit that. Naming something and finding co-morbidities is not the same as understanding it and formulating effective treatments. "No Known Cause" is ignorance but after over four and a half a decades of hearing the same lame lines, it seems like wanton, willful stupidity to me. My PCP, Obgyns and Urologists refused to treat my LS. Think about that. What makes this hideous affliction happen? Herpes or other indwelling longterm viral infections? Is LS like shingles? The pain is similar. Are some ubiquitous Bacteria responsible? Is there a healthy vulvar biome, which could be re-established after antibiotic treatments destroys the natural balance? Environmental toxins? Before you blow that idea off remember Millions of women died of breast cancer because of artificial hormones given to dairy cows to increase milk production. People went crazy. Now most supermarket milk says; "No hormones." Could the cause be chlorine in the water supply? If it was, we could distill our water and take mineral supliments. I ask because I swim for exercise & when I do my ALS gets worse even if I change and shower immediately. Cotton underwear, aviod sweets and sleeping comando was the medical advice I got. AMA has to be able to do better for young women than this.

I've been fighting Lichen Sclerosus since 2009. It is now atrophic. "No Known Cause. No cure. Co-morbidity Thyroid disease." 15 years no serious research! Mine started as lichen lpannus of the tongue in 1978. Huge tongue biopsy, 16 stitches. Years of usless yeast medications. I can testify Betamethazone helps relieve vulvar itching, but only temporarily, then the skin thins, so I can't even pee and wipe with tissue without cracking and bleeding. If you told men they had to have their glans punch biopsied you would have an uproar for real research. Super Steriods absorbed through mucus membranes create havoc with Type Two Diabetes. Why are most women's issues auto immune? IMHO it is easier to label than find the true cause and cure. For over a hundred years ulsers were stress and diet related. Now there is a known infectious agent and a CURE! Just saying

I am gonna ask my primary at my next annual it’s coming up this month. There is a dr about an hour away that is supposed to work with this. It would be nice to finally have this named.

I really wished I had been diagnosed when I was a teen. Painful, heavy periods followed by 3 children born within 3 years really took its toll. I actually had to be induced with my second child (15 months after my first) because my hips were so painful and subluxation was causing me to fall. I had a uterine ablation when I was 40 (wish I’d had it 14 years earlier after my last pregnancy). Any type of gynaecological procedure that causes pain sends me into a vaso vagal reaction (low blood pressure is also an issue!). I even had both of my knees totally replaced at 46. It was the 6 knee surgeries and revisions that first put me on to possible EDS. And now I’ve just been diagnosed with hEDS at 51. The pain I could have avoided (not to mention being treated like a hypochondriac by doctors and family my whole life) if someone had taken all of my medical issues seriously. Instead you get labelled as anxious and depressed and fed a bunch of drugs that you probably don’t really need. And you spend every day in pain, but worrying that it’s all in your head. I’m disappointed, frustrated and just a little bit angry that I’ve had to live the last 50 years basically on “hard” mode. I wouldn’t wish this on anyone.

I laughed when I liked this video. I’ve been having chronic pudendal neuralgia for 10 years. This is a great description. I had mild issues after giving birth, but 10 years ago I had a vulvar tumor removed and have been in pain since. Sigh. Had a nerve block and trigger point injections a few weeks ago with mild results. I have in last had better results. Just tried low dose naltrexone. Was taking at the same time as amatryptaline and one was making me crazy so I stopped both. I definitely need a good muscle relaxer. Currently taking metaxalone. I have tried vaginal Valium but will try again. I’d like to try your suggestions. Makes a lot of sense. Now to get a dr to agree. 😁 maybe I’ll send them this video. I’m sure they’d love that. 😊

Misdiagnosed with classical eds in 2011, diagnosed with kEDS after loosing eyesight in one eye in 2016 with blood test I paid heavily for. 41 never pregnant before but trying and scared as it's now or never for a family. No information or doctor in my country. Would love to hear from others with kEDS and even better if you can give me info on pregnancy and labour to learn from. Best wishes to all, live and let live, life's too short and tough sometimes ❤

I am 62 years old and never really enjoyed sex most of my life. There was desire, but not usually pleasure. When I was a teenager a therapist stated that she thought I had a problem with intimacy. Now that I know what that means, I believe she may be correct. I had a neglectful childhood when I was young and my parents divorced when I was7 yrs old. My dad left the state and I didn't see him again until I was 30 yrs old. He was never really around much so I never really knew him well. I remember every detail about the day he left so it affected me a great deal. Currently, I live with a bf whose wife passed away after 32 years of marriage. He's been a widower for 3 or 4 years now. He tells me he loves me so much, wants to marry me but wants me to give him my all. I have no idea what that even looks like! I don't want to be alone in my old age, but idk what he expects here. We were high school sweethearts and reconnected after his wife passed hoping to rekindle that relationship, only to find that we don't have much in common, which makes it more difficult to communicate effectively. I am lost wondering if there is a chance for us or if we should just move on. 8 am pretty headstrong & wet in my ways and I know it would be hard for me to change, but it could be the best thing in my life! 🤷

Also if you are at all familiar with EHK, will a biopsy be able to distinguish between EHK and these other two skin diseases?

Can high doses of Vit D help this. I have Epidermolytic Hyperkeratosis and suspect i may have this as well and maybe even this AND Morphea but it's been hard to find a doctor who can Dx me.

Hi. Can prp work for pudendal neuralgia and/or cauda equina? If so, what location would you recommend the injections? Ive seen several doctors and no one is really helping me. I had a fall and aggravation during PT which led to feet/ankle numbness and urine retention. It progressed to levator ani spasms. Pudendal neuralgia...so a year later and it still hurts to sit (hamstrings & glute pain & tightness and anal/vaginal pain) . I still get deep pelvic floor spasms. Im in daily pain. Im trying to go back to work so i wanna get away from sedative medications (they dont fully help anyway)....any advice please

Thanks so much! I really appreciate hearing about the full lifecycle. So often post-menopausal people are left out. The information you shared is empowering and will help people prepare. Thank you!

Would you consider doing a follow up to this video discussing relapsing polychondritis and Wegner’s granulomatosis? Wegner’s is vascular, if I remember correctly. Are there similarities between Wegner’s and vascular EDS, as far as complications for the patient?

I have been suffering from pain between my scrotum and anus for a year and a half. cumming and sex are impossible. whole day feeling of urination!! my life is hell!! Some days I can't sleep because of the pain, but sleep is only possible with a sleeping pill such as zolpidem. I have had all the tests PCR, MRI, cystoscopy, blood. everything is negative. the pain clinic said my muscles are too tense. physio done but helps minimally!! I use pegrabalin but it helps a little bit, I had to do this combine with amitrifiline but got too much side effects !! Now I'm getting duloxotine, would this help? ? I need to combine this with physio!! please help me! my life has become hell!! I can no longer sit on a chair for long, some days I can't sit at all!! it's a stabbing burning pain some days my penis hurts all day!! please help me which medicine should I use??

“Seven yeast infections in six months” -> this perfectly resonates. With early diagnoses, does clobetasol maintenance tend to prevent progression to scarring?

Thank you for all the info in this video! Really appreciate it!

God BLESS! Please post where it is and what it looks like.

The thing that ties the types of EDS together is collagen, or genes that impact things that impact collagen, and hypermobile joints, skin manifestations, and connective tissue manifestations.

Is early menopause associated with hEDS or another type of EDS?

What about hip cramping associated with orgasm?? Is that a part of the pelvic spasms you’re talking about?