This is such an important post! I’m so glad you wrote it. I learned a lot, and I laughed out loud. Those things don’t often go together. I had an acquaintance many years ago who had this. Her marriage failed because of it! And she thought it was her fault. That is heartbreaking. Anyway, love your writing, I want to hear everything you think.
Oh, Julia! Devastating to hear someone lost their marriage over this! But I get it! It was at times my fear at the start of it. Thankfully my stallion husband is so understanding and patient. Thanks for reading! I’m humbled, as I am such a fan of you. Thanks for the encouragement! PS- you are the reason I started a substack! You did this! 😂😘❤️🌸
I’m really sorry you’re experiencing this. I’ve had pelvic floor issues for years. It stemmed from a fall I took in 2001. Ice storm. It entrapped the main motor and sensory nerve of the pelvis, the pudendal nerve
I highly suggest women’s health PT. I ended up at Mayo in Rochester and from there sent to France , the country. I had decompression/transposition surgery of the pudendal nerve in Nantes, France in 2002. It was torture. The recovery was awful. 2 plus years and I’m still, to this day, dealing with pelvic floor dysfunction. There was no one in the Twin Cities that could help. I ended up out in San Francisco with a PT. Her name is Stephanie Prendergas, she was working with a doctor, who at the time, was the President of the International Pelvic Pain Society. She now has several practices of her own.. She’s out in LA now. I can’t recommend her enough. If your insurance covers it , I would try to at least have a consultation with her. The name of the practice is Pelvic Health & Rehabilitation Center. My husband and I have been together for 37 years , married for 34. It was several years where it was impossible for us to have sex vaginally. Lucky for him, like you, I had always been a sexual human. Loved it. Still still love it. There are lots of things you can do, but there really isn’t anything that compares to the “real thing”. That’s closeness is what I missed. Hang in there. Hopefully, once treated properly, things will improve for you & your husband. I could relate to a lot of what you wrote. I too was made to believe it was all in my head , then given copious amounts of opioids. But that’s another story.
Good luck & I’ll be hoping for the best possible solution & outcome. ✌️❤️
Me too, Mo! Amazing you described so perfectly our situation. And why weren’t we warned?! Where’s our pill?! I did the $3,000 “Mona Lisa Touch” laser treatment. Excruciating and no help! Hubby and I haven’t given up. We’re both stubborn and determined problem solvers, god bless him. Oral to the rescue. But finally now, I just have him go super slow to get through. Yes pain at first but some natural water-based lubricant (I hate that word, never needed it before) and it’s worth it. One thing that my hubby actually noticed too is the Big O has gotten more intense, so there’s that. Thank you Joan for the referral to Pelvic Health & Rehabilitation Center. I’ll make an appointment 🙏🏻
My little sister was diagnosed with breast cancer just after the Covid Lockdown. She’s in San Francisco, so was still able to get on top of it. Every one of my fathers 4 sisters have had breast cancer and have survived it My father died of cancer at 75, 6 weeks after diagnosis. With both my parents coming from Ireland farms, no medical information shall be disclosed or discussed if it may pertain to sexual parts.
I stopped counting my biopsies after the 10th one. Love the little round ice packs they give you for popping inside a coozie though, so there’s that little bonus!!! 😂
BTW, about two months ago I began HRT and I swear by it. In just this short time so much improvement. And the one I'm doing is bio-identical yam based pellets (not soy or cow) plus some prescription supplements. It's done through Rejuve but the only clinic I know of is Sherman Oaks, CA, at the Galleria on Sepulveda and Ventura. My gal is Annette!
My 26y long orgasm with RAD, at 80, has been dealing with "floppy." I told him to talk to his doctor... that blood pressure medication causes the MALE PILL to not be as effective. Afraid to ask his regular doctor, but another doctor he doesn't know called to ask about another prescription and if he got it... he asks this one, not known to him. Is ecstatic that all he has to do is up the V from 25 to either 50 or 100.... it's so easy for men to deal with their problems and yet they do have trauma dealing with their walking stick. Again, if they had to give birth, our species would have died out long ago. ;{
OMG, the descriptives!!! definitely going to add several of these to my daily conversations.
62 here and I have Vaginismus. Mine started after chemo treatment when I was 58. It wasn't a full stop vag hotel closed, it was a gradual atrophying that has gotten worse as time goes along. Luckily for me I'm a masochist so in the beginning I kinda liked the pain, but my masochism only goes so far and now its blowjobs for him and Mr. Hitachi for me. We still occasionally have random PIV sex - using lots of extra time and energy with foreplay and very slow penetration. But even that doesn't always open the pearly gates.
I was prescribed estradiol cream and that did help some but was wildly annoying to use with lots of smelly discharge. I needed to use it almost daily to get the benefit. It wasn't worth it. There is a suppository that might be better but no insurance covers it and it is outrageously expensive.
What I want is something I can use the day of sex, not something I have to use every day so I can have sex next week. Get on it medical science!
That must be agony. I wonder about your hormone levels. You indicate you are postmenopausal. Have you given any thought about taking bio-identical hormone therapy? Something to consider.
I agree that women's health issues are discounted too easily by doctors. I was recently poo-pooed because of my wanting treatment for a more common issue, stress incontinence. After trying and failing conservative measures, I am wanting a TVT sling procedure. The urologist I consulted with thought I didn't try hard enough on the conservative measures and did not want to do the procedure. I told him that if men leaked when they jumped up and down, sneezed or ran, I'm pretty sure we'd have better treatment options for stress incontinence. He was a little taken aback by my comment. I requested to be referred to a urogynecologist who would do the procedure. The urologist told me just to see my health care provider for the referral, which I did. That is coming up in September and will require a trip to our nation's capital, Ottawa. It's not just the wheels of justice that turn slowly. The wheels of health care do too, if they turn at all, for women.
A little update, now July 16, 2024, and I am now almost 3 weeks postop TVT-O procedure for stress incontinence with great results. I am very happy to have insisted to get this procedure done. It was worth the wait. You must be your own healthcare advocate or have a close friend or relative willing to help you. Otherwise, I feel sorry for you. Doctors can be very dismissive. My advice? Don't let 'em!
I too have vaginismus. Mine comes from a religious upbringing, and as such, the dilators and therapy have been helpful. But I will echo what has been said above that pelvic floor physical therapy has been amazingly helpful, especially if you can find a practitioner who really listens. My partner and I actually just successfully had penetrative sex together for the first time this weekend!
Ohhhh man! I am so sorry to hear all you are going through. Y'all are great at overcoming obstacles! I'm almost 39, tons of health issues on top of perimenopause, so I have no desire at all currently. Not when my whole body feels like shit most of the time. Just compiled all my old med records to show my doc all the weird stuff I have dealt with for over 10 years now!! So hard to get anyone to listen. It's always "in your head! Anxiety! Depression!" etc. I have a decent doc now who gives referrals and orders tests when needed and follows up, but I still don't know for sure what my body is doing. ME/CFS is the diagnosis they gave me in 2019, but everything got worse after I was hospitalized in 2020. I even developed allergies to meds that had helped me for years! Thank god for the marijuana. My husband and I will be married 18 yrs this year! We are super close, very affectionate and spend a lot of time together, so we have intimacy in other ways at least.
What a nightmare. I'm so glad you have your stallion husband. I have been asking doctors including OBGYN's since I was 37 years old [now 50] questions such as "what can I expect about menopause?" & "How will I know what is normal and what is pathological when I experience it?" The answers have been things like "it's still very mysterious," "it varies from woman to woman," "talk to your mother about her experiences," & "let me know if you start to think you need a prescription for hormones."
It really sucks that things that only happen to the biologically XX people are never truly studied or addressed by healthcare systems and research hospitals. While at the same time, things that only happen to those with penises [E.D.] are not just examined but SOLVED. It is crazymaking in that way which makes us the kind of crazy that gets labeled hysterical. Like fricking of COURSE we are hysterical, this is a rage only WE can feel because this is only happening to US!
I had this for years—right after an abortion. I tried to have sex afterward w same partner, but it was too soon. Painful does not give it due. And then: internal chastity belt. For YEARS. I never shared it with medical pros bc I was too poor for health insurance at the time. Your critical, sunlight-enhancing discussion of it is an utter revelation and I am astonished, but also not at all, to learn that once again we’re left to muddle thru. My god. (Thank you! Jesus christ! Why are we such afterthoughts?!)
I sent you a message on IG. I have this issue and it’s startling scary and feels like a theft of happy years. . I recently started seeing a pelvic floor PT in Brentwood. Only one visit so far but went home with the same kit you described. Gyno appt are horrifying. Just sucks
Y'all have covered everything I'd have to say but I want to compliment Mo Collins — and everyone who's responded. Her and your clarity, humor and we're-in-this-together-ness are delightful.
Oh Mo! I’ve such a long story to tell, but I’ll try to cut to the chase. After trying Estrace cream, an estrogen ring, testosterone cream, clobetosol (not sure how to spell that), I finally landed on Vagifem inserts 2x a week and a compound cream of testosterone and estrogen 2x a week. But that’s just to keep me juicy.
Get thee to a Pelvic floor PT stat! That’s when I made some progress. Learned how to use my vaginal dilators, how to breathe to relax my vagina, and to stop doing freaking Kegels because they’re the opposite of what my tensed up vagina needs. I also learned that if my husband points himself slightly towards my right, that’s better.
I’ve been to three PTs — each taught me something new or different. One of them explained the “in your head” part like this: the pain receptors in our brains remember past experiences of pain and will tense up muscles in anticipation of it happening again. You have to teach those pain receptors that everything is okay! Thankfully no doctor told me it was all in my head, but they mostly thought all I needed was a cream and lubricants to fix it. Way more complicated than that!
Lastly, I found the Bodies podcast and cried when I listened to it. A young woman, with NPR credentials I think produced it. For a time I was all over their Facebook group. There’s Dr. Bri’s Lady Bits podcast that frankly, I haven’t gotten into because maybe I’m not much of a podcast person! Also, there’s @carolinepackarddpt on Instagram, a pelvic floor therapist with some interesting videos, though she’s more about post pregnancy than painful sex.
I have to applaud Julie for her comment. Pelvic floor therapy opened my eyes. My therapist did shit talk kegels, and taught me the proper breathing and relaxing, and how to feel the muscles relax.
One other resource Mo! I just listened to episode 137 from Huberman Lab with Dr. Rena Malik. It's 3 hours long, but it goes into everything about sex, painful sex, everything! For men and women. Everything. All the different parts. I just started following her on Instagram too. I know, I know, I said I'm not a podcast person, but this was fascinating.
Mo, as a gay man, I have very little knowledge of this whole arena. Some experience back in college - but that was a LONG time ago!
BUT, as a fellow human being, I applaud your guts in sharing this, applaud your skill at describing what you're going through, applaud your humor, your sensitivity and your sheer desire to create a collective conversation about something most of us may have heard of, but know very little about. I read this with such a sense of intimacy, as though we were longtime friends talking, laughing, tearing up together over our favorite wine. (Maybe even overlooking the sea in Italy.)
THANK YOU! Reading this made me proud of you (even though I don't know you that well!) Good luck resolving it; I'm glad you're not going through this alone.
And that time when my Mayo doc said I had “globus hystericus” was the beginning of the dethroning of the Doctor cult. Thank god for the internet, (and EJC) for this thread.
This is such an important post! I’m so glad you wrote it. I learned a lot, and I laughed out loud. Those things don’t often go together. I had an acquaintance many years ago who had this. Her marriage failed because of it! And she thought it was her fault. That is heartbreaking. Anyway, love your writing, I want to hear everything you think.
Oh, Julia! Devastating to hear someone lost their marriage over this! But I get it! It was at times my fear at the start of it. Thankfully my stallion husband is so understanding and patient. Thanks for reading! I’m humbled, as I am such a fan of you. Thanks for the encouragement! PS- you are the reason I started a substack! You did this! 😂😘❤️🌸
I’m really sorry you’re experiencing this. I’ve had pelvic floor issues for years. It stemmed from a fall I took in 2001. Ice storm. It entrapped the main motor and sensory nerve of the pelvis, the pudendal nerve
I highly suggest women’s health PT. I ended up at Mayo in Rochester and from there sent to France , the country. I had decompression/transposition surgery of the pudendal nerve in Nantes, France in 2002. It was torture. The recovery was awful. 2 plus years and I’m still, to this day, dealing with pelvic floor dysfunction. There was no one in the Twin Cities that could help. I ended up out in San Francisco with a PT. Her name is Stephanie Prendergas, she was working with a doctor, who at the time, was the President of the International Pelvic Pain Society. She now has several practices of her own.. She’s out in LA now. I can’t recommend her enough. If your insurance covers it , I would try to at least have a consultation with her. The name of the practice is Pelvic Health & Rehabilitation Center. My husband and I have been together for 37 years , married for 34. It was several years where it was impossible for us to have sex vaginally. Lucky for him, like you, I had always been a sexual human. Loved it. Still still love it. There are lots of things you can do, but there really isn’t anything that compares to the “real thing”. That’s closeness is what I missed. Hang in there. Hopefully, once treated properly, things will improve for you & your husband. I could relate to a lot of what you wrote. I too was made to believe it was all in my head , then given copious amounts of opioids. But that’s another story.
Good luck & I’ll be hoping for the best possible solution & outcome. ✌️❤️
Omgosh. Thank you for this!! Will seek this person out in LA. I live here. Also... I’m from Twin Cities! ❤️
Me too, Mo! Amazing you described so perfectly our situation. And why weren’t we warned?! Where’s our pill?! I did the $3,000 “Mona Lisa Touch” laser treatment. Excruciating and no help! Hubby and I haven’t given up. We’re both stubborn and determined problem solvers, god bless him. Oral to the rescue. But finally now, I just have him go super slow to get through. Yes pain at first but some natural water-based lubricant (I hate that word, never needed it before) and it’s worth it. One thing that my hubby actually noticed too is the Big O has gotten more intense, so there’s that. Thank you Joan for the referral to Pelvic Health & Rehabilitation Center. I’ll make an appointment 🙏🏻
I think some smarter women than myself should investigate and develop a Lube that women would actually want to interplay with.
Lube isn't enough in this case. At least not in my experience. We tried them all.
😞💔. My heart hurts for you having to experience this.
Thanks. But all better now! My HRT has changed my life!
My little sister was diagnosed with breast cancer just after the Covid Lockdown. She’s in San Francisco, so was still able to get on top of it. Every one of my fathers 4 sisters have had breast cancer and have survived it My father died of cancer at 75, 6 weeks after diagnosis. With both my parents coming from Ireland farms, no medical information shall be disclosed or discussed if it may pertain to sexual parts.
I stopped counting my biopsies after the 10th one. Love the little round ice packs they give you for popping inside a coozie though, so there’s that little bonus!!! 😂
A family of fighters. Bless you🙏🏻💙
Yes, the complications do bring through much more intense Big O's!
Right?
BTW, about two months ago I began HRT and I swear by it. In just this short time so much improvement. And the one I'm doing is bio-identical yam based pellets (not soy or cow) plus some prescription supplements. It's done through Rejuve but the only clinic I know of is Sherman Oaks, CA, at the Galleria on Sepulveda and Ventura. My gal is Annette!
My 26y long orgasm with RAD, at 80, has been dealing with "floppy." I told him to talk to his doctor... that blood pressure medication causes the MALE PILL to not be as effective. Afraid to ask his regular doctor, but another doctor he doesn't know called to ask about another prescription and if he got it... he asks this one, not known to him. Is ecstatic that all he has to do is up the V from 25 to either 50 or 100.... it's so easy for men to deal with their problems and yet they do have trauma dealing with their walking stick. Again, if they had to give birth, our species would have died out long ago. ;{
Exactly. BTW, Rejuve works on men too.💕
OMG, the descriptives!!! definitely going to add several of these to my daily conversations.
62 here and I have Vaginismus. Mine started after chemo treatment when I was 58. It wasn't a full stop vag hotel closed, it was a gradual atrophying that has gotten worse as time goes along. Luckily for me I'm a masochist so in the beginning I kinda liked the pain, but my masochism only goes so far and now its blowjobs for him and Mr. Hitachi for me. We still occasionally have random PIV sex - using lots of extra time and energy with foreplay and very slow penetration. But even that doesn't always open the pearly gates.
I was prescribed estradiol cream and that did help some but was wildly annoying to use with lots of smelly discharge. I needed to use it almost daily to get the benefit. It wasn't worth it. There is a suppository that might be better but no insurance covers it and it is outrageously expensive.
What I want is something I can use the day of sex, not something I have to use every day so I can have sex next week. Get on it medical science!
Hormone creams didn’t work for me either. I love everything you just responded with here. Thank you!! 🙏🏻❤️
That must be agony. I wonder about your hormone levels. You indicate you are postmenopausal. Have you given any thought about taking bio-identical hormone therapy? Something to consider.
I agree that women's health issues are discounted too easily by doctors. I was recently poo-pooed because of my wanting treatment for a more common issue, stress incontinence. After trying and failing conservative measures, I am wanting a TVT sling procedure. The urologist I consulted with thought I didn't try hard enough on the conservative measures and did not want to do the procedure. I told him that if men leaked when they jumped up and down, sneezed or ran, I'm pretty sure we'd have better treatment options for stress incontinence. He was a little taken aback by my comment. I requested to be referred to a urogynecologist who would do the procedure. The urologist told me just to see my health care provider for the referral, which I did. That is coming up in September and will require a trip to our nation's capital, Ottawa. It's not just the wheels of justice that turn slowly. The wheels of health care do too, if they turn at all, for women.
Thank you for this response. Spot on. Good luck in September! Oh, the lengths (miles!!) we will go...
A little update, now July 16, 2024, and I am now almost 3 weeks postop TVT-O procedure for stress incontinence with great results. I am very happy to have insisted to get this procedure done. It was worth the wait. You must be your own healthcare advocate or have a close friend or relative willing to help you. Otherwise, I feel sorry for you. Doctors can be very dismissive. My advice? Don't let 'em!
I too have vaginismus. Mine comes from a religious upbringing, and as such, the dilators and therapy have been helpful. But I will echo what has been said above that pelvic floor physical therapy has been amazingly helpful, especially if you can find a practitioner who really listens. My partner and I actually just successfully had penetrative sex together for the first time this weekend!
Omgosh!! Congratulations on a successful weekend!!! That’s huge!! That’s hope!! 🙏🏻❤️
Thanks!
Ohhhh man! I am so sorry to hear all you are going through. Y'all are great at overcoming obstacles! I'm almost 39, tons of health issues on top of perimenopause, so I have no desire at all currently. Not when my whole body feels like shit most of the time. Just compiled all my old med records to show my doc all the weird stuff I have dealt with for over 10 years now!! So hard to get anyone to listen. It's always "in your head! Anxiety! Depression!" etc. I have a decent doc now who gives referrals and orders tests when needed and follows up, but I still don't know for sure what my body is doing. ME/CFS is the diagnosis they gave me in 2019, but everything got worse after I was hospitalized in 2020. I even developed allergies to meds that had helped me for years! Thank god for the marijuana. My husband and I will be married 18 yrs this year! We are super close, very affectionate and spend a lot of time together, so we have intimacy in other ways at least.
What a nightmare. I'm so glad you have your stallion husband. I have been asking doctors including OBGYN's since I was 37 years old [now 50] questions such as "what can I expect about menopause?" & "How will I know what is normal and what is pathological when I experience it?" The answers have been things like "it's still very mysterious," "it varies from woman to woman," "talk to your mother about her experiences," & "let me know if you start to think you need a prescription for hormones."
It really sucks that things that only happen to the biologically XX people are never truly studied or addressed by healthcare systems and research hospitals. While at the same time, things that only happen to those with penises [E.D.] are not just examined but SOLVED. It is crazymaking in that way which makes us the kind of crazy that gets labeled hysterical. Like fricking of COURSE we are hysterical, this is a rage only WE can feel because this is only happening to US!
Bang that DRUM!! YES!! Thank you for this response! 🙏🏻❤️
!!!!
I had this for years—right after an abortion. I tried to have sex afterward w same partner, but it was too soon. Painful does not give it due. And then: internal chastity belt. For YEARS. I never shared it with medical pros bc I was too poor for health insurance at the time. Your critical, sunlight-enhancing discussion of it is an utter revelation and I am astonished, but also not at all, to learn that once again we’re left to muddle thru. My god. (Thank you! Jesus christ! Why are we such afterthoughts?!)
“Internal chastity belt” is SO ACCURATE! Thank you!! 🙏🏻❤️
I sent you a message on IG. I have this issue and it’s startling scary and feels like a theft of happy years. . I recently started seeing a pelvic floor PT in Brentwood. Only one visit so far but went home with the same kit you described. Gyno appt are horrifying. Just sucks
Y'all have covered everything I'd have to say but I want to compliment Mo Collins — and everyone who's responded. Her and your clarity, humor and we're-in-this-together-ness are delightful.
Thank you for putting it into words. I thought I was alone in this. 🥹
You are NOT alone. 🌸❤️
Oh my gosh, you’re not alone! Go to the Bodies podcast Facebook group. You won’t feel alone anymore! I’m so sorry you’ve felt that way.
Oh Mo! I’ve such a long story to tell, but I’ll try to cut to the chase. After trying Estrace cream, an estrogen ring, testosterone cream, clobetosol (not sure how to spell that), I finally landed on Vagifem inserts 2x a week and a compound cream of testosterone and estrogen 2x a week. But that’s just to keep me juicy.
Get thee to a Pelvic floor PT stat! That’s when I made some progress. Learned how to use my vaginal dilators, how to breathe to relax my vagina, and to stop doing freaking Kegels because they’re the opposite of what my tensed up vagina needs. I also learned that if my husband points himself slightly towards my right, that’s better.
I’ve been to three PTs — each taught me something new or different. One of them explained the “in your head” part like this: the pain receptors in our brains remember past experiences of pain and will tense up muscles in anticipation of it happening again. You have to teach those pain receptors that everything is okay! Thankfully no doctor told me it was all in my head, but they mostly thought all I needed was a cream and lubricants to fix it. Way more complicated than that!
Lastly, I found the Bodies podcast and cried when I listened to it. A young woman, with NPR credentials I think produced it. For a time I was all over their Facebook group. There’s Dr. Bri’s Lady Bits podcast that frankly, I haven’t gotten into because maybe I’m not much of a podcast person! Also, there’s @carolinepackarddpt on Instagram, a pelvic floor therapist with some interesting videos, though she’s more about post pregnancy than painful sex.
Best wishes to you! x Julie
Uhoh!! I’ve been kageling regularly!! Unclenching now!!! PT seems to be the best option I am seeing!! And it really is complicated, isn’t it?? Wowza.
I have to applaud Julie for her comment. Pelvic floor therapy opened my eyes. My therapist did shit talk kegels, and taught me the proper breathing and relaxing, and how to feel the muscles relax.
One other resource Mo! I just listened to episode 137 from Huberman Lab with Dr. Rena Malik. It's 3 hours long, but it goes into everything about sex, painful sex, everything! For men and women. Everything. All the different parts. I just started following her on Instagram too. I know, I know, I said I'm not a podcast person, but this was fascinating.
E. Jean thank you for sharing this! Omg we’re not alone! My comment on Mo’s reply to Joan Baron’s comment below🙏🏻
Mo, as a gay man, I have very little knowledge of this whole arena. Some experience back in college - but that was a LONG time ago!
BUT, as a fellow human being, I applaud your guts in sharing this, applaud your skill at describing what you're going through, applaud your humor, your sensitivity and your sheer desire to create a collective conversation about something most of us may have heard of, but know very little about. I read this with such a sense of intimacy, as though we were longtime friends talking, laughing, tearing up together over our favorite wine. (Maybe even overlooking the sea in Italy.)
THANK YOU! Reading this made me proud of you (even though I don't know you that well!) Good luck resolving it; I'm glad you're not going through this alone.
Honey, making you laugh is a favorite. You’ve got one of the best in the world. Miss you and the wine ❤️
Mo! Salute!
😘🙏🏻
And that time when my Mayo doc said I had “globus hystericus” was the beginning of the dethroning of the Doctor cult. Thank god for the internet, (and EJC) for this thread.
Had to look that one up!!
I don’t think they use it as much any more.
Ok that pisses me off.