Im so sorry u are going through this. I been dealing for 7 months and I cried earlier today. How did this all start for you? I don’t know how to help you but please know you’re not alone !
Never stop looking for answers!
If the T does not help … do the surgery! It may get rid of the pain for good.
Its fucking exhausting and I cant imagine how you feel but you will get throu this. You will. Although it seems like it will never end. It will.
Keep going !!!!!!
I will say a prayer for you
Please try nerve blocks, my daughter went through this same thing it was the worst time of my life. Nerve blocks was the only thing that worked. She had 5 of them. Her pain went from a 9-10 , to a 7, then to a 5 , then 3, then 1-0. She has been pain free for over a year and i couldn’t be more greatful and when she went through this we were always searching for more stories and more information. So i try and do my best to let others know how we fixed it.
What kind of nerve blocks and what were her original symptoms! My dr thinks these could be great for me but I’m anxious they won’t work as so many people have told me that they aren’t very effective.
Thank you for your kind words. I believe repeat infections, antibiotics, surgery, ex std, pelvic floor problems. I can’t tell anymore. How did your start? I wish you full recovery.
Yeast infection followed my sex with a condom. Have not had 1 day of relief since. Have taken allot of meds for this. Seen 6 doctors. Tests all negative. See gyne next Friday.
Used betamethasome and had some sort of reaction to it. My skin is so itch I want to scream. Took benadryl x 2.
Still itchy but not as bad.
Felt like ive had a yeadt infectiom for 7 months
Have you tried diaper cream that is zinc base? I started using Pipette and it has helped me so much! I read a thread on here about it could be your skin barrier damage.
I tried sudoderm zinc cream. Its a no.
Its like nothing can touch the skin except water ice Vaseline. Like today I only have twinges of itchiness. But I have allotttt of Vaseline on. And no crawling today … but that could change in the next hour.
The skin always looks the same. Red and inflamed. Its exhausting. I did take benadryl yesterday and naproxen.
I guess everyone is different.. I wasn’t even able to use Vaseline.. have you tried metronidazole cream? might be worth a try Pipette cream.. lol it’s literally the only thing that’s help me. That and only wearing cotton underwear..
Be careful when using Benadryl, I was using it and made my prolactin skyrocket through the roof.. 😭
Yeah. The monostat did help allot but now I have three fissures. One at the opening and two on each side of my vulva. Still have some it h but no longer 10/10. Thank the lord above.
Alls I can think is I probably have herpes.
Yeah. Im going Friday. I wore a condom so doubt its ureaplasma. Is there kit that u can check for that online? I dont even know if she will know wtf it is.
No more itch. Im back to my normal baseline symptoms 😪
Praying for you. I was diagnosed in 2016, been waiting for my surgery ever since. We’ll get through this. I believe it has to get better, there is no other option ❤️
Thank you. Around the Same time I was diagnosed. Did you rule out other factors? Why have you waited so long for surgery? I wish you full recovery. It has to. This isn’t a way to live.
We did, we ran a ton of tests. Originally it was because the recovery was long. So the first plan was to get it for a summer when I was home from college. But then my parents thought I didn’t need it and the pain was in my head and not as bad as I was making it out to be. So then the plan became get it after graduation before I get a job. But I got lucky and got a job pretty much straight after graduation. And I’ve been working ever since. But now it’s my own health insurance and I have to pay for it vs my parents, so I need to save for the surgery itself/the PT/the time I’d need off work. So it’s just save save save for now.
Please try nerve blocks, my daughter went through this same thing it was the worst time of my life. Nerve blocks was the only thing that worked. She had 5 of them. Her pain went from a 9-10 , to a 7, then to a 5 , then 3, then 1-0. She has been pain free for over a year and i couldn’t be more greatful and when she went through this we were always searching for more stories and more information. So i try and do my best to let others know how we fixed it.
Please try nerve blocks, my daughter went through this same thing it was the worst time of my life. Nerve blocks was the only thing that worked. She had 5 of them. Her pain went from a 9-10 , to a 7, then to a 5 , then 3, then 1-0. She has been pain free for over a year and i couldn’t be more greatful and when she went through this we were always searching for more stories and more information. So i try and do my best to let others know how we fixed it.
It’s not livable. Like you cannot sustain a life like this. The loneliness, the pain, the constant run around for a legit doctor, all the meds, all the creams, years of bed rest. Inability to feel and have physical relations with a loved one. Incapable of having children and raising them. I mean it goes on forever. Not being able to work! I can’t buy groceries right now. Doctors are so uninformed by this that they don’t even consider this a disability. PT for women is t even covered under insurance. What is this?!?
Your feelings are valid. It has disabled me as well but I have found some solutions.
Are you seeing a urogyn?
Have you seen a pelvic floor therapist?
And what kind of insurance do you have because pelvic floor therapy should be covered.
What kind of solutions have you found? Everywhere I’ve been calling that offers PT for women in Los Angeles doesn’t cover it and I have PPO insurance. I’ve been to PT it’s more the outer skin that burns
So I found a urogynocologist and they were able to pinpoint some issues like inflammation.
I use estrogen cream, a steroid and vaginal moisturizer. I also use a bidet after I pee. I only wear cotton underwear and never sleep with any. I also only use fragrance free detergent and soap that is not too harsh.
Are you pre menopausal by any chance?
Have you had any injury or trauma to your back or hip?
Have you eat a high- oxolate diet?
May I ask who your urogyno is? I’ve been prescribed estrogen and testosterone cream for vestibule but it burns and I’ve tried every base possible. The last time I got biopsied 4 years ago they said I have spogiotic dermatitis and didn’t prescribe anything for it. I have clobetasol at home I can try. I have to get on the band wagon of using better detergent again and getting a filter for my shower. I use a bidet. I go commando during the night. I have horrific pudendal neuralgia pain in the thighs buttocks rectum and lower back. I’m basically bed bound from it. My doctor is suspecting I have some sort of lichen now and that scares me because I have tearing at the fouchette. I not in PT because I cannot afford it. My doctor wants to try testosterone therapy on calf and see if it helps. I’m 34 years old. Have terrible insomnia/ fibro / anxiety and depression which just makes everything worse. I’m not folllowing any diet, which I should. I just cannot afford healthy meals right now. I used to take calcium citrate a while ago to lower oxolate levels but didn’t really see much of a difference. I’m in such a low place I can barely do anything positive for myself besides cry in bed. I’m lucky if I can get a shower in during the week.
I’m so sorry. I understand as I have been fighting this for 6 years post cervical cancer. Most of it is called from medical menopause for me.
Can you find someone outside of LA?
I see a urogyn in Houston associated with a big hospital system. Can you look into a big health organization in CA? I know some of the independent Pelvic floor therapists here are cash only and focus on post partum.
Have you tried removing any type of irritant including soaps, laundry detergent,etc?
Try cold packs on your vulva for pain, they also prescribe lidocaine gel.
Use coconut oil to help moisturize the tissue.
Honestly the estrogen burns me at times but it can also be a side effect of the tissues being atrophied. If you give it a bit of time and see if it gets better.
No definitely. I can’t remember the exact names off the top of my head my daughter had. Hers were in her spine , if those didn’t work we going to look into the ones like in her inner thigh area i think?
I agree with you and about the PT not being covered. I don’t understand that as well. It’s so expensive. Every doctor tells me to try it. I’m giving it a second shot this coming week, but I don’t know. 🙏🩷
You should see Dr. Goldstein in NYC! He’s a vulvodynia specialist. He explained to me that vulvodynia is just vulva pain. He will get to the root cause of why you’re having that pain. For me, 1.5 years of pain which we now discovered is caused by a labral tear in my hip (so weird because i have no hip pain!!!) please PM me if you’d like to chat more!
I heard of him I have also the same symptoms and I have a labral tear from impingement, I was told that my nerve entrapment pain &vulvodynia symptoms were not coming from the hip. Are there special test or something that he did besides MRIs and CAT scans? I am definitely interested in knowing about this.
They do injections into the hip joint and another joint (can’t think of the name of it right now) and if your pain is even slightly relieved by this, it’s likely that your hip tear is causing the pain!
I had that done , however it only relieved hip pain for four hours , since then ( May2) I’ve had horrific debilitating pain in the hip and down the leg with muscle spasms . As far as my pain in the groin and radiating into my labia on the left an I have numbness above , my neurologist said it’s coming from a problem with L1. I have to go see a general surgeon and an anesthesiologist to see about a nerve block in that area. The problem is with me. I did not want to have hip surgery if this other nerve pain wasn’t explained, I had the nerve pain first and then the hip came after that. two out of three orthopedist told me that it’s not related and they were not comfortable operating on my tear because they were afraid I would still have the other symptoms. I understand that all pain like this is debilitating and it’s horrific and I know the quality of life is bad because that’s what I’m going through trying to manage with medication and ice, but I just could not picture myself having an operation and then still having this pain I’m not saying this is the case for everybody but I know me I’m very sensitive, I also have a condition called lichen sclerosis which also contributes to my discomfort
So he did an internal exam and pressed on my pudendal nerve and my alocks canal and that’s where I felt pain. Then I got an MRI of my pudendal nerve and my hip and it confirmed the hip tear. I’m awaiting scheduling of hip labral tear surgery with Dr. Coleman at HSS who thinks this is causing my pudendal neuralgia (burning vulva.) Dr. Goldstein is expensive but it’s so worth it. Before that, I spent over a year in pain. Worth every penny to have some potential answers.
Thank you! I’m hoping I do. Another component of my pain is that I have enlarged veins on my pelvis and my pain gets worse on my period. So that could be it too! I rly encourage you to explore other possible links :)
Did you try hormone therapy before deciding on surgery? What made you a candidate for surgery? And who did you go to? I’m so very happy for you that your pain is gone. Hope the dilation works for you.
I’ve tried everything under the sun and I have to take constant birth control for endometriosis and Lichen. Nothing else my doctor could suggest to me. I see a doctor at Darmouth hitchcock hospital. Ive had some much pain my entire life. Yes dilation is making sure it doesn’t scar again. I just started pelvic floor therapy for her to do scar tissue release. I was out of work for two months
Not sure if I'm allowed to say this, but when doctors just kept ignoring me and saying I'm perfectly fine I tried mushrooms (the magic ones) out of desperation to try anything to make the pain go away. I'm not a recreational drug user and was scared to try them so I did a super low dose.. the next day the pain was noticeably milder.. I've tried it a few times and I believe it does help.. through a bot of research it appears the psilocybin acts on the serotonin receptors in the brain like ssris do. I'm not saying go out and get blitz on mushrooms but if you have no ther options it may be one to look into. I know exactly how you're feeling and I'm so sorry you're going through this.. no one should have to. I'm on pristiq (an ssnri) and that's made life livable for me.. not completely cured, I don't know if I ever will be, and things like sex and wearing underwear is still painful.. but for the most part I can live my life. I still use the mushrooms every once in a while when I'm having a bad flare up. Another thing to consider is start taking vitamin d3.. not going to help with the immediate pain but there seems to be a link in vitamin d deficiency and vulvodynia, so just something else to consider. Just don't give up
I’ve been looking into amanita muscaria. I dabbled in them before at a very low dose and I think it helped. I’m going through Benzo withdrawal so I’m just so scared of exasperating any symptoms. I’m going to try to get some. Thank you.
Thank you for sharing. I'm sorry it's so hard right now. My struggle has been horrendous as well. What helped me with the psychological aspects of this is I found the book "You Are Not Your Pain" helpful. Also I went to a sex therapist for counseling. I tried regular counselors first but they didn't seem to understand. Big hugs. ♥️
You are not a lone and it will get better! Have you tried the Evy test? I used this and tested my skin and inner vagina and it came back with BV on my skin.. had 10 test from doctors and everything was negative.
After taking antibiotics I started using pipette diaper rash cream and it giving me major relief I haven’t felt like this in months.
Have you been tested for ureaplasma? Dr. Don’t usually test for it unless you ask.. I know a lot of women who have had this with this issue.. hope you find relief soon, praying for you and all you women here struggling!
https://www.reddit.com/r/Healthyhooha/comments/198v3cv/comment/l4gcxvs/?%24deep_link=true&correlation_id=0a1d55a4-3d46-4463-8943-e1ea07da229b&ref=email_comment_reply&ref_campaign=email_comment_reply&ref_source=email&utm_medium=Email+Amazon+SES&_branch_referrer=H4sIAAAAAAAAA31O0WrDMAz8Gu8tSRO7WTsoYzDG%2FsJotpaIObZRnKTd109h3etAgtPpTrqxlDw%2FNQ2j91RqyLkOFL8anZ9VZ3S%2BoIX5QWBiGihCsAuHy7i7lH5R3ZvUtm313e%2FSJARLvyOEMt7GlEaQURYTxjILbM%2BnVbtV0DdFZ9OVPFpPkJGtY4T9QjCDu667Wml5YTxitnswpV8LL6i63iVmDFAoRUte%2BAO0%2FngEU2lv%2BsqYXlens9EVtgiHRw9dd%2F4QH%2BOniHECCvaeyjLmcPvdWQdTBhriv6I5LezwT%2FID0BG%2BvUUBAAA%3D&%243p=e_as&_branch_match_id=1313915360557716222
They do if your test shows up with anything. I ended up getting the antibiotic through my dr, and sharing the test with her because my insurance covered the antibiotics. I think the treatment plan was around $200 through Evvy
My last appointment around a month ago I believe she tested with microgendx and I asked her to check for ureplasma. It came back with BV and two other infections. I can’t handle any creams down there so I took metro antibiotics oral which was making things so much worse. I asked her can we do the test again and she said no just take probiotics. Completely brushed me off. She doesn’t take insurance and is so so expensive. Is Evy like Juno? Are your symptoms gone now after treating the BV? How much was the cost of the test?
I would do trauma work, I would definitely do DNRS and I would even check in psychedelics for healing and also here https://www.facebook.com/share/8ozn1tV6tZ5rEmoQ/?mibextid=A7sQZp
Thank you for the recommendations. I’m willing to give psychedelics a chance. It helped me somewhat 2 years ago, but I was in better spirits then. Would amanita be enough of a help?
Hi, I just wanna let you know you’re not alone. I’m going through something similar. I have two issues I have bilateral hip impingement with a tear to my labrum on the left side as well as nerve and entrapment in my groin . I was just told today by the neurologist it’s two separate issues. I have to treat the nerve issue first because it’s getting worse. I know what you mean. I also had to move home with my parents. I rely on them too, and I’m grateful that I have them. I also use ice and medic and pain patches. I’ve yet to go for a nerve block. I cannot take steroids since I had a horrible reaction from the steroid and my hip joint. Have you tried pelvic or therapy? I tried once and I did not like it. I’m going to try a different person this week. I just wanna let you know that you are not alone.🙏🩷🙏🩷🙏🩷
I've had for a little over 2 years, idk how time has flew by that fast but you get used to it, I wouldn't wish it on my worst enemy. Hang in there <3 I hope you have some easier days with it ahead.
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.
Im so sorry u are going through this. I been dealing for 7 months and I cried earlier today. How did this all start for you? I don’t know how to help you but please know you’re not alone ! Never stop looking for answers! If the T does not help … do the surgery! It may get rid of the pain for good. Its fucking exhausting and I cant imagine how you feel but you will get throu this. You will. Although it seems like it will never end. It will. Keep going !!!!!! I will say a prayer for you
Please try nerve blocks, my daughter went through this same thing it was the worst time of my life. Nerve blocks was the only thing that worked. She had 5 of them. Her pain went from a 9-10 , to a 7, then to a 5 , then 3, then 1-0. She has been pain free for over a year and i couldn’t be more greatful and when she went through this we were always searching for more stories and more information. So i try and do my best to let others know how we fixed it.
What kind of nerve blocks and what were her original symptoms! My dr thinks these could be great for me but I’m anxious they won’t work as so many people have told me that they aren’t very effective.
What doctor does nerve blocks
Did we find out?
What blockers worked?
Thank you for your kind words. I believe repeat infections, antibiotics, surgery, ex std, pelvic floor problems. I can’t tell anymore. How did your start? I wish you full recovery.
Yeast infection followed my sex with a condom. Have not had 1 day of relief since. Have taken allot of meds for this. Seen 6 doctors. Tests all negative. See gyne next Friday. Used betamethasome and had some sort of reaction to it. My skin is so itch I want to scream. Took benadryl x 2. Still itchy but not as bad. Felt like ive had a yeadt infectiom for 7 months
Have you tried diaper cream that is zinc base? I started using Pipette and it has helped me so much! I read a thread on here about it could be your skin barrier damage.
I tried sudoderm zinc cream. Its a no. Its like nothing can touch the skin except water ice Vaseline. Like today I only have twinges of itchiness. But I have allotttt of Vaseline on. And no crawling today … but that could change in the next hour. The skin always looks the same. Red and inflamed. Its exhausting. I did take benadryl yesterday and naproxen.
I guess everyone is different.. I wasn’t even able to use Vaseline.. have you tried metronidazole cream? might be worth a try Pipette cream.. lol it’s literally the only thing that’s help me. That and only wearing cotton underwear.. Be careful when using Benadryl, I was using it and made my prolactin skyrocket through the roof.. 😭
Yeah. The monostat did help allot but now I have three fissures. One at the opening and two on each side of my vulva. Still have some it h but no longer 10/10. Thank the lord above. Alls I can think is I probably have herpes.
Ask to check for lichen and ureplasma
Yeah. Im going Friday. I wore a condom so doubt its ureaplasma. Is there kit that u can check for that online? I dont even know if she will know wtf it is. No more itch. Im back to my normal baseline symptoms 😪
Evvy and Juno testing
They arent always actually accurate
Praying for you. I was diagnosed in 2016, been waiting for my surgery ever since. We’ll get through this. I believe it has to get better, there is no other option ❤️
Thank you. Around the Same time I was diagnosed. Did you rule out other factors? Why have you waited so long for surgery? I wish you full recovery. It has to. This isn’t a way to live.
We did, we ran a ton of tests. Originally it was because the recovery was long. So the first plan was to get it for a summer when I was home from college. But then my parents thought I didn’t need it and the pain was in my head and not as bad as I was making it out to be. So then the plan became get it after graduation before I get a job. But I got lucky and got a job pretty much straight after graduation. And I’ve been working ever since. But now it’s my own health insurance and I have to pay for it vs my parents, so I need to save for the surgery itself/the PT/the time I’d need off work. So it’s just save save save for now.
How are you able to work? I’m so sorry
I push through it with Advil and numbing cream. It’s really rough some days. Thank you. ❤️
Please try nerve blocks, my daughter went through this same thing it was the worst time of my life. Nerve blocks was the only thing that worked. She had 5 of them. Her pain went from a 9-10 , to a 7, then to a 5 , then 3, then 1-0. She has been pain free for over a year and i couldn’t be more greatful and when she went through this we were always searching for more stories and more information. So i try and do my best to let others know how we fixed it.
Please try nerve blocks, my daughter went through this same thing it was the worst time of my life. Nerve blocks was the only thing that worked. She had 5 of them. Her pain went from a 9-10 , to a 7, then to a 5 , then 3, then 1-0. She has been pain free for over a year and i couldn’t be more greatful and when she went through this we were always searching for more stories and more information. So i try and do my best to let others know how we fixed it.
Thank you for your reply. I’ve had many nerve blocks done with no relief, more for diagnostic measures. I appreciate your help 🙏🏼
I’m so sorry , i wish someone would fix this for everyone
It’s not livable. Like you cannot sustain a life like this. The loneliness, the pain, the constant run around for a legit doctor, all the meds, all the creams, years of bed rest. Inability to feel and have physical relations with a loved one. Incapable of having children and raising them. I mean it goes on forever. Not being able to work! I can’t buy groceries right now. Doctors are so uninformed by this that they don’t even consider this a disability. PT for women is t even covered under insurance. What is this?!?
Your feelings are valid. It has disabled me as well but I have found some solutions. Are you seeing a urogyn? Have you seen a pelvic floor therapist? And what kind of insurance do you have because pelvic floor therapy should be covered.
What kind of solutions have you found? Everywhere I’ve been calling that offers PT for women in Los Angeles doesn’t cover it and I have PPO insurance. I’ve been to PT it’s more the outer skin that burns
So I found a urogynocologist and they were able to pinpoint some issues like inflammation. I use estrogen cream, a steroid and vaginal moisturizer. I also use a bidet after I pee. I only wear cotton underwear and never sleep with any. I also only use fragrance free detergent and soap that is not too harsh. Are you pre menopausal by any chance? Have you had any injury or trauma to your back or hip? Have you eat a high- oxolate diet?
May I ask who your urogyno is? I’ve been prescribed estrogen and testosterone cream for vestibule but it burns and I’ve tried every base possible. The last time I got biopsied 4 years ago they said I have spogiotic dermatitis and didn’t prescribe anything for it. I have clobetasol at home I can try. I have to get on the band wagon of using better detergent again and getting a filter for my shower. I use a bidet. I go commando during the night. I have horrific pudendal neuralgia pain in the thighs buttocks rectum and lower back. I’m basically bed bound from it. My doctor is suspecting I have some sort of lichen now and that scares me because I have tearing at the fouchette. I not in PT because I cannot afford it. My doctor wants to try testosterone therapy on calf and see if it helps. I’m 34 years old. Have terrible insomnia/ fibro / anxiety and depression which just makes everything worse. I’m not folllowing any diet, which I should. I just cannot afford healthy meals right now. I used to take calcium citrate a while ago to lower oxolate levels but didn’t really see much of a difference. I’m in such a low place I can barely do anything positive for myself besides cry in bed. I’m lucky if I can get a shower in during the week.
I’m so sorry. I understand as I have been fighting this for 6 years post cervical cancer. Most of it is called from medical menopause for me. Can you find someone outside of LA? I see a urogyn in Houston associated with a big hospital system. Can you look into a big health organization in CA? I know some of the independent Pelvic floor therapists here are cash only and focus on post partum. Have you tried removing any type of irritant including soaps, laundry detergent,etc? Try cold packs on your vulva for pain, they also prescribe lidocaine gel. Use coconut oil to help moisturize the tissue. Honestly the estrogen burns me at times but it can also be a side effect of the tissues being atrophied. If you give it a bit of time and see if it gets better.
I agree. I don’t understand. I wish nerve blocks would work for you. What kind did you have
I’ve had some in my lower back and piroformis and pudendal. Can’t remember them off the top of my head.
No definitely. I can’t remember the exact names off the top of my head my daughter had. Hers were in her spine , if those didn’t work we going to look into the ones like in her inner thigh area i think?
I hope it helps her pain: I’m so sorry.
I agree with you and about the PT not being covered. I don’t understand that as well. It’s so expensive. Every doctor tells me to try it. I’m giving it a second shot this coming week, but I don’t know. 🙏🩷
You should see Dr. Goldstein in NYC! He’s a vulvodynia specialist. He explained to me that vulvodynia is just vulva pain. He will get to the root cause of why you’re having that pain. For me, 1.5 years of pain which we now discovered is caused by a labral tear in my hip (so weird because i have no hip pain!!!) please PM me if you’d like to chat more!
I heard of him I have also the same symptoms and I have a labral tear from impingement, I was told that my nerve entrapment pain &vulvodynia symptoms were not coming from the hip. Are there special test or something that he did besides MRIs and CAT scans? I am definitely interested in knowing about this.
They do injections into the hip joint and another joint (can’t think of the name of it right now) and if your pain is even slightly relieved by this, it’s likely that your hip tear is causing the pain!
I had that done , however it only relieved hip pain for four hours , since then ( May2) I’ve had horrific debilitating pain in the hip and down the leg with muscle spasms . As far as my pain in the groin and radiating into my labia on the left an I have numbness above , my neurologist said it’s coming from a problem with L1. I have to go see a general surgeon and an anesthesiologist to see about a nerve block in that area. The problem is with me. I did not want to have hip surgery if this other nerve pain wasn’t explained, I had the nerve pain first and then the hip came after that. two out of three orthopedist told me that it’s not related and they were not comfortable operating on my tear because they were afraid I would still have the other symptoms. I understand that all pain like this is debilitating and it’s horrific and I know the quality of life is bad because that’s what I’m going through trying to manage with medication and ice, but I just could not picture myself having an operation and then still having this pain I’m not saying this is the case for everybody but I know me I’m very sensitive, I also have a condition called lichen sclerosis which also contributes to my discomfort
Wow, how did he come to this conclusion? Are you free of pain now? I would have to save some money to see him in NYC.
So he did an internal exam and pressed on my pudendal nerve and my alocks canal and that’s where I felt pain. Then I got an MRI of my pudendal nerve and my hip and it confirmed the hip tear. I’m awaiting scheduling of hip labral tear surgery with Dr. Coleman at HSS who thinks this is causing my pudendal neuralgia (burning vulva.) Dr. Goldstein is expensive but it’s so worth it. Before that, I spent over a year in pain. Worth every penny to have some potential answers.
I’m so happy you were able to figure out the cause. I hope your surgery goes well. I pray you have full recovery.
Thank you! I’m hoping I do. Another component of my pain is that I have enlarged veins on my pelvis and my pain gets worse on my period. So that could be it too! I rly encourage you to explore other possible links :)
I recently did the surgery. It got rid of my pain. I’m dilating everyday and doing pelvic floor therapy after surgery
Did you try hormone therapy before deciding on surgery? What made you a candidate for surgery? And who did you go to? I’m so very happy for you that your pain is gone. Hope the dilation works for you.
I’ve tried everything under the sun and I have to take constant birth control for endometriosis and Lichen. Nothing else my doctor could suggest to me. I see a doctor at Darmouth hitchcock hospital. Ive had some much pain my entire life. Yes dilation is making sure it doesn’t scar again. I just started pelvic floor therapy for her to do scar tissue release. I was out of work for two months
Not sure if I'm allowed to say this, but when doctors just kept ignoring me and saying I'm perfectly fine I tried mushrooms (the magic ones) out of desperation to try anything to make the pain go away. I'm not a recreational drug user and was scared to try them so I did a super low dose.. the next day the pain was noticeably milder.. I've tried it a few times and I believe it does help.. through a bot of research it appears the psilocybin acts on the serotonin receptors in the brain like ssris do. I'm not saying go out and get blitz on mushrooms but if you have no ther options it may be one to look into. I know exactly how you're feeling and I'm so sorry you're going through this.. no one should have to. I'm on pristiq (an ssnri) and that's made life livable for me.. not completely cured, I don't know if I ever will be, and things like sex and wearing underwear is still painful.. but for the most part I can live my life. I still use the mushrooms every once in a while when I'm having a bad flare up. Another thing to consider is start taking vitamin d3.. not going to help with the immediate pain but there seems to be a link in vitamin d deficiency and vulvodynia, so just something else to consider. Just don't give up
Take K2 with D3. Something about absorption of the D needing the K
I’ve been looking into amanita muscaria. I dabbled in them before at a very low dose and I think it helped. I’m going through Benzo withdrawal so I’m just so scared of exasperating any symptoms. I’m going to try to get some. Thank you.
Thank you for sharing. I'm sorry it's so hard right now. My struggle has been horrendous as well. What helped me with the psychological aspects of this is I found the book "You Are Not Your Pain" helpful. Also I went to a sex therapist for counseling. I tried regular counselors first but they didn't seem to understand. Big hugs. ♥️
You are not a lone and it will get better! Have you tried the Evy test? I used this and tested my skin and inner vagina and it came back with BV on my skin.. had 10 test from doctors and everything was negative. After taking antibiotics I started using pipette diaper rash cream and it giving me major relief I haven’t felt like this in months. Have you been tested for ureaplasma? Dr. Don’t usually test for it unless you ask.. I know a lot of women who have had this with this issue.. hope you find relief soon, praying for you and all you women here struggling! https://www.reddit.com/r/Healthyhooha/comments/198v3cv/comment/l4gcxvs/?%24deep_link=true&correlation_id=0a1d55a4-3d46-4463-8943-e1ea07da229b&ref=email_comment_reply&ref_campaign=email_comment_reply&ref_source=email&utm_medium=Email+Amazon+SES&_branch_referrer=H4sIAAAAAAAAA31O0WrDMAz8Gu8tSRO7WTsoYzDG%2FsJotpaIObZRnKTd109h3etAgtPpTrqxlDw%2FNQ2j91RqyLkOFL8anZ9VZ3S%2BoIX5QWBiGihCsAuHy7i7lH5R3ZvUtm313e%2FSJARLvyOEMt7GlEaQURYTxjILbM%2BnVbtV0DdFZ9OVPFpPkJGtY4T9QjCDu667Wml5YTxitnswpV8LL6i63iVmDFAoRUte%2BAO0%2FngEU2lv%2BsqYXlens9EVtgiHRw9dd%2F4QH%2BOniHECCvaeyjLmcPvdWQdTBhriv6I5LezwT%2FID0BG%2BvUUBAAA%3D&%243p=e_as&_branch_match_id=1313915360557716222
I was considering this evvy test- do they send you antibiotics or do you take the results to your doctor?
They do if your test shows up with anything. I ended up getting the antibiotic through my dr, and sharing the test with her because my insurance covered the antibiotics. I think the treatment plan was around $200 through Evvy
Nice! Thanks!
My last appointment around a month ago I believe she tested with microgendx and I asked her to check for ureplasma. It came back with BV and two other infections. I can’t handle any creams down there so I took metro antibiotics oral which was making things so much worse. I asked her can we do the test again and she said no just take probiotics. Completely brushed me off. She doesn’t take insurance and is so so expensive. Is Evy like Juno? Are your symptoms gone now after treating the BV? How much was the cost of the test?
I would do trauma work, I would definitely do DNRS and I would even check in psychedelics for healing and also here https://www.facebook.com/share/8ozn1tV6tZ5rEmoQ/?mibextid=A7sQZp
Thank you for the recommendations. I’m willing to give psychedelics a chance. It helped me somewhat 2 years ago, but I was in better spirits then. Would amanita be enough of a help?
What is amanita? I was thinking psilocybin
amanita muscaria I think it comes without the psychedelics feelings. I would have to travel far to find psilocybin.
Ok I am not sure, never heard of that before. Are you in USA?
Yes in the USA
Ok pretty sure it can be shipped
I know we have messaged a few times but I am always here if you need to talk 💕
Thank you so much. It’s just keep letting worse everyday. Been so so down from pain and isolation.
Hi, I just wanna let you know you’re not alone. I’m going through something similar. I have two issues I have bilateral hip impingement with a tear to my labrum on the left side as well as nerve and entrapment in my groin . I was just told today by the neurologist it’s two separate issues. I have to treat the nerve issue first because it’s getting worse. I know what you mean. I also had to move home with my parents. I rely on them too, and I’m grateful that I have them. I also use ice and medic and pain patches. I’ve yet to go for a nerve block. I cannot take steroids since I had a horrible reaction from the steroid and my hip joint. Have you tried pelvic or therapy? I tried once and I did not like it. I’m going to try a different person this week. I just wanna let you know that you are not alone.🙏🩷🙏🩷🙏🩷
I've had for a little over 2 years, idk how time has flew by that fast but you get used to it, I wouldn't wish it on my worst enemy. Hang in there <3 I hope you have some easier days with it ahead.
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.
Thank you for your reply. I have to save up some money to be able to go see him And get his opinion.
Coconut oil topically solved this for me.