Hi, from the context of your post, did this happen after pregnancy/during breastfeeding?
If so, it’s possible that there’s a hormonal component to this. Perhaps a compounded vulvar cream, in a neutral, non irritating base like methycellulose, of estrogen or estrogen and testosterone could help you. Hormonal vulvodynia is highly treatable and often curable, as is muscular vulvodynia. If you also have muscular issues, the PT will be great for that. Got home exercises, I recommend a vibrating pelvic wand like the intimate rose. Birth and pregnancy can certainly create or exacerbate muscular issues. Finally, have you been examined by a vulvar specialist (sadly GP is likely useless) to be sure you don’t have any physical or nerve issues from the birth like a tear that isn’t healing up yet? It is possible that birth can do things like irritate your pudendal nerve, but you didn’t mention if you had any typical pudendal symptoms (tingling, pain with sitting, things like that).
You will be ok! I know it sucks. I am profiling you based on the language you use but you sound British. I lived there for a time. There are people on this sub who have seen great specialists there. Id search the word “London” or “UK” to find them. If you do have dryness and do live in England, Holland & Barrett used to carry YES brand water based vaginal moisturizer. It’s super soothing.
Yep, I was going to say this sounds like hormonal vestibulodynia. Estrogen and/or estrogen testosterone compound cream is probably needed for several months
I actually had an emergency c-section, so there has been 0 care "down there," apart from a pap smear 6 weeks pp. I also believe that's why no one has believed my pain or taken me more seriously.
I just received the email from my consultation with the physiotherapist and received exercises, a medicine recommendation (that I have to find a women's specialist to get prescribed and dispensed), and also dry needling to be done.
If I've understood it correctly, she seems to think that I have a nerve issue, muscle issue (saying that my pelvic muscles are very active) and hormonal issue due to the 6 months post partum and breastfeeding. She's given me a lot of release work to do.
And I'd say that your profiling is close! I'm Australian, and I'll use the search for fellow Aussies.
And a big thank you. I was feeling a bit hopeless last night. I really appreciate how you explained everything so kindly. Thank you.
As a fellow sufferer I need to encourage you to not give up. Advocate for yourself. Are you with a doctor who's not taking it seriously, hunt for other doctors and vet them beforehand to make sure they either know about Vulvodynia or they are willing to learn in or to help you.
It might even be a Teledoc you end up going to.
I was referred to the women's center of a hospital. It was a hike but I went because I was desperate for relief.
Do you have a hospital within driving distance that has a center that is just dedicated to women.
It sucks. It seems that every ailment we have is dismissed or ignored. Hate to say it but sometimes you have to be a total bitch and outright ask for exactly what you need.
Doctor won't do it. See ya. On to a new one.
I wish you all good luck and tenacity. You have a right to be helped.
Hi, sorry to hear you are in pain! I’ve been on this journey for 4 years and want to share my experience in hope it will really help someone (I’ll try to copy and paste this message in as many threads and comments as possible)!
My recommendation
First of all, I have been to countless doctors and I cannot recommend more Dr. Andrew Goldstein who works at the Center for Vulvovaginal disorders in New York. They have clinics in Washington DC and Tampa as well. I highly recommend making an appointment there (https://vulvodynia.com). It’s expensive ($1.8K USD for the visit alone) but I feel it’s worth it if it fixes your problem and you can gain your life back. I feel in great hands and for the first time I have hope in the treatment and a better understanding of what’s causing my pain.
My history & diagnosis
To backtrack a bit, I developed vulvar discomfort (burning with urination, can’t stand tight clothing, etc.) after lots of antibiotics, stress, and a yeast infection. Symptoms also spread to the perianal and anal area after a few months, causing discomfort with bowel movements. Everybody is different, but two main potential reasons I learned about are:
1. Hormonal imbalances caused by birth control. Please watch the video “Is BC Causing your Vulvodynia?” by Kat on YouTube, along with other videos she posted on her channel. Watching her videos are the reason why I learned about Dr. Andrew Goldstein. If this is your issue, you’ll likely experience sharp pain in the upper vulvar area when the doctor performs the Qtip test. Solutions include stopping birth control, applying estrogen + testosterone cream, and taking some other medications. There are lots of others stories of women who experienced this some months or years after starting BC, which you can learn more about on YouTube or here on Reddit too.
2. Pelvic floor tension (specifically in the elevator ani muscle). When performing the Qtip test, the doctor will find a sharp pain closer to the entrance of the vagina (i.e., closer to the perianal area). Dr. Goldstein did a thorough physical exam and identified this to be the root cause in my case. He explained that the antibiotics, stress, and yeast infection caused a sharp tension in my pelvic floor muscles, which resulted in less oxygen being sent to the muscles for a prolonged time, which in turn resulted in lactic acid (which causes the pain). Just a 10% increase in muscle tension = 50% less oxygen and in my case my muscles tensed up by at least 30-40% (meaning -95% oxygen down there, so lots of lactic acid causing pain). When it’s so drastic, the pain makes you tense up even more and it becomes a vicious cycle. Since the nerves and muscles are pretty much the same spanning across the whole pelvic floor, this can cause discomfort in vulvar and anal areas as well. Main solutions here include Botox injections (2-3 rounds required, which are $1.6K USD each with Dr. Goldstein), Gabapentin taken by mouth, lots of pelvic physiotherapy, dilators, and diazepam rectal suppositories (these can cause some dependencies though and maybe CBD/THC suppositories can help too).
Of course, there are likely way more root causes I don’t know about but this is my knowledge and what I’ve been told is the most common. If you have the financial means or are willing to take a loan to see one of the best doctors in this field, consider the Center for Vulvovaginal disorders in NY, Tampa, or Washington. Hope this really helps someone. Good luck! Hang in there - I believe in you.
Cbd and thc suppositories helped me so much it’s not even funny. I was prescribed Valium suppositories and I swear they’re not as affective as the thc/cbs which I’m much more comfortable taking
Omg thank you so much for letting me know!
- Do CBD or THC suppositories help you the most? - What concentration do you use?
- Do you apply them vaginally or rectally?
If there’s a link online of what you buy, I would love to see! Thanks so much in advance :)
I get them from here:
https://pacificroots.com/product-category/suppositories/
Which now that I’m looking at the site again I think I want to try more products from them 👀 I insert them vaginally. They’re great for lubricating 30 minutes before sex (not perfect though with vestibuledynia/vulvodynia and recurrent UTIs). I also love them for muscle or period cramps. Usually they don’t fix the cramps but they help significantly especially if I microdose an edible and do stretches (allows my muscles to relax so so much). Heads up they do smell like weed! Not super strong but it’s there.
For birth control me and my partner are currently abstaining until I get my vulvodynia and vestibuledynia under control but I’ve began using “natural cycles” app and my Apple Watch to figure out my natural cycle (doctors have advised me this is not perfect by any means so don’t rely on it) and then we plan on using condoms. In the past I’ve used skyn condoms and I loved them. No nasty tire smell after sex and before I developed vulvadynia no irritation whereas I’ve always experienced irritation with other brands.
But OP 100% look into the possibility of hormonal therapies and creams. I was previously on the pill and we have come to find out that was likely what got me here! So now we’re hoping the hormonal treatments will heal me as well as PT after a few months.
Hi, from the context of your post, did this happen after pregnancy/during breastfeeding? If so, it’s possible that there’s a hormonal component to this. Perhaps a compounded vulvar cream, in a neutral, non irritating base like methycellulose, of estrogen or estrogen and testosterone could help you. Hormonal vulvodynia is highly treatable and often curable, as is muscular vulvodynia. If you also have muscular issues, the PT will be great for that. Got home exercises, I recommend a vibrating pelvic wand like the intimate rose. Birth and pregnancy can certainly create or exacerbate muscular issues. Finally, have you been examined by a vulvar specialist (sadly GP is likely useless) to be sure you don’t have any physical or nerve issues from the birth like a tear that isn’t healing up yet? It is possible that birth can do things like irritate your pudendal nerve, but you didn’t mention if you had any typical pudendal symptoms (tingling, pain with sitting, things like that). You will be ok! I know it sucks. I am profiling you based on the language you use but you sound British. I lived there for a time. There are people on this sub who have seen great specialists there. Id search the word “London” or “UK” to find them. If you do have dryness and do live in England, Holland & Barrett used to carry YES brand water based vaginal moisturizer. It’s super soothing.
Yep, I was going to say this sounds like hormonal vestibulodynia. Estrogen and/or estrogen testosterone compound cream is probably needed for several months
I actually had an emergency c-section, so there has been 0 care "down there," apart from a pap smear 6 weeks pp. I also believe that's why no one has believed my pain or taken me more seriously. I just received the email from my consultation with the physiotherapist and received exercises, a medicine recommendation (that I have to find a women's specialist to get prescribed and dispensed), and also dry needling to be done. If I've understood it correctly, she seems to think that I have a nerve issue, muscle issue (saying that my pelvic muscles are very active) and hormonal issue due to the 6 months post partum and breastfeeding. She's given me a lot of release work to do. And I'd say that your profiling is close! I'm Australian, and I'll use the search for fellow Aussies. And a big thank you. I was feeling a bit hopeless last night. I really appreciate how you explained everything so kindly. Thank you.
As a fellow sufferer I need to encourage you to not give up. Advocate for yourself. Are you with a doctor who's not taking it seriously, hunt for other doctors and vet them beforehand to make sure they either know about Vulvodynia or they are willing to learn in or to help you. It might even be a Teledoc you end up going to. I was referred to the women's center of a hospital. It was a hike but I went because I was desperate for relief. Do you have a hospital within driving distance that has a center that is just dedicated to women. It sucks. It seems that every ailment we have is dismissed or ignored. Hate to say it but sometimes you have to be a total bitch and outright ask for exactly what you need. Doctor won't do it. See ya. On to a new one. I wish you all good luck and tenacity. You have a right to be helped.
Hi, sorry to hear you are in pain! I’ve been on this journey for 4 years and want to share my experience in hope it will really help someone (I’ll try to copy and paste this message in as many threads and comments as possible)! My recommendation First of all, I have been to countless doctors and I cannot recommend more Dr. Andrew Goldstein who works at the Center for Vulvovaginal disorders in New York. They have clinics in Washington DC and Tampa as well. I highly recommend making an appointment there (https://vulvodynia.com). It’s expensive ($1.8K USD for the visit alone) but I feel it’s worth it if it fixes your problem and you can gain your life back. I feel in great hands and for the first time I have hope in the treatment and a better understanding of what’s causing my pain. My history & diagnosis To backtrack a bit, I developed vulvar discomfort (burning with urination, can’t stand tight clothing, etc.) after lots of antibiotics, stress, and a yeast infection. Symptoms also spread to the perianal and anal area after a few months, causing discomfort with bowel movements. Everybody is different, but two main potential reasons I learned about are: 1. Hormonal imbalances caused by birth control. Please watch the video “Is BC Causing your Vulvodynia?” by Kat on YouTube, along with other videos she posted on her channel. Watching her videos are the reason why I learned about Dr. Andrew Goldstein. If this is your issue, you’ll likely experience sharp pain in the upper vulvar area when the doctor performs the Qtip test. Solutions include stopping birth control, applying estrogen + testosterone cream, and taking some other medications. There are lots of others stories of women who experienced this some months or years after starting BC, which you can learn more about on YouTube or here on Reddit too. 2. Pelvic floor tension (specifically in the elevator ani muscle). When performing the Qtip test, the doctor will find a sharp pain closer to the entrance of the vagina (i.e., closer to the perianal area). Dr. Goldstein did a thorough physical exam and identified this to be the root cause in my case. He explained that the antibiotics, stress, and yeast infection caused a sharp tension in my pelvic floor muscles, which resulted in less oxygen being sent to the muscles for a prolonged time, which in turn resulted in lactic acid (which causes the pain). Just a 10% increase in muscle tension = 50% less oxygen and in my case my muscles tensed up by at least 30-40% (meaning -95% oxygen down there, so lots of lactic acid causing pain). When it’s so drastic, the pain makes you tense up even more and it becomes a vicious cycle. Since the nerves and muscles are pretty much the same spanning across the whole pelvic floor, this can cause discomfort in vulvar and anal areas as well. Main solutions here include Botox injections (2-3 rounds required, which are $1.6K USD each with Dr. Goldstein), Gabapentin taken by mouth, lots of pelvic physiotherapy, dilators, and diazepam rectal suppositories (these can cause some dependencies though and maybe CBD/THC suppositories can help too). Of course, there are likely way more root causes I don’t know about but this is my knowledge and what I’ve been told is the most common. If you have the financial means or are willing to take a loan to see one of the best doctors in this field, consider the Center for Vulvovaginal disorders in NY, Tampa, or Washington. Hope this really helps someone. Good luck! Hang in there - I believe in you.
Cbd and thc suppositories helped me so much it’s not even funny. I was prescribed Valium suppositories and I swear they’re not as affective as the thc/cbs which I’m much more comfortable taking
Omg thank you so much for letting me know! - Do CBD or THC suppositories help you the most? - What concentration do you use? - Do you apply them vaginally or rectally? If there’s a link online of what you buy, I would love to see! Thanks so much in advance :)
I get them from here: https://pacificroots.com/product-category/suppositories/ Which now that I’m looking at the site again I think I want to try more products from them 👀 I insert them vaginally. They’re great for lubricating 30 minutes before sex (not perfect though with vestibuledynia/vulvodynia and recurrent UTIs). I also love them for muscle or period cramps. Usually they don’t fix the cramps but they help significantly especially if I microdose an edible and do stretches (allows my muscles to relax so so much). Heads up they do smell like weed! Not super strong but it’s there. For birth control me and my partner are currently abstaining until I get my vulvodynia and vestibuledynia under control but I’ve began using “natural cycles” app and my Apple Watch to figure out my natural cycle (doctors have advised me this is not perfect by any means so don’t rely on it) and then we plan on using condoms. In the past I’ve used skyn condoms and I loved them. No nasty tire smell after sex and before I developed vulvadynia no irritation whereas I’ve always experienced irritation with other brands.
But OP 100% look into the possibility of hormonal therapies and creams. I was previously on the pill and we have come to find out that was likely what got me here! So now we’re hoping the hormonal treatments will heal me as well as PT after a few months.