First time doing skin prick testing and off my antihistamines and mast cell stabilizers for 5 days before hand and I feel AWFUL. How r yall getting thru this ??🥲🥲 all I got is nasal rinse and Flonase and safe foods .. and my air purifier but still dy1ng🥲 any tips?
Wondering if anyone with pelvic congestion or vascular compressions like MTS or NCS struggles with gyno symptoms like vulvodynia , reoccurring UTIS or yeast infections, painful periods, etc and can provider any advice for me. It’s difficult becase my IR/vascular surgeon don’t know that much about gynecology stuff and my gynocologist doesn’t know much about vascular compressions, even though I feel like these things are connected. Mostly struggling with reoccurring infections which I think come from so much inflammation that disrupt the microbiome? Not sure. Any advice?
Hello, I have vulvodynia, clitorodynia, and PGAD and just got diagnosed with some pelvic venous disorders. MRV showed May Thurner, Nutcracker, and Pelvic Congestion Syndrome. I also have pots hEDs and mcas and have seen people who also have similar co occurring syndromes as me. Found an interventional radiologist who was talking about my veins, aortas, and getting sents. Honestly freaked me out the idea of metal objects in ur body and surgery. Let me know if anyone also has pelvic venous disorders and advice or guidance for me. I’ve also found a pelvic floor therapist familiar with all these disorders. Although I’m happy to find people to help and more answers I’m Feeling pretty scared tbh. Posted this over at the vulvodynia subreddit too but just seeking extra support. Thank you!!
Hello, I have vulvodynia and clitorodynia and just got diagnosed with some pelvic venous disorders. MRV showed May Thurner, Nutcracker, and Pelvic Congestion Syndrome. I also have pots hEDs and mcas and have seen people who also have similar co occurring syndromes as me. Found an interventional radiologist who was talking about my veins, aortas, and getting sents. Honestly freaked me out the idea of metal objects in ur body and surgery. Let me know if anyone also has pelvic venous disorders and advice or guidance for me. I’ve also found a pelvic floor therapist family with all these disorders. Although I’m happy to find people to help and more answers I’m Feeling pretty scared tbh.
Hi does anyone recommend good pelvic floor therapists in the LA/OC Southern California area that know about pgad? I’ve found some pelvic floor therapists to help with hypertonic pelvic floor, pain, etc but they don’t know much about pgad in particular. Lmk if u suggest anyone 🥲
Hello, I believe I have pgad as well as vulvodynia. I also have some skin thinning and atrophy after persistent yeast infections + Desquamative inflammatory vaginitis. My doctor has me on gabapentin and lidocaine and doing PT soon. I’m worried that the topical estrogen will make the pgad worse as I’ve heard it can worsen some people’s symptoms. Going to try it out but feeling conflicted let me know if anyone’s had experience with this!
My rheumatologist wanted me to get my retinas checked out because apparently with HEDS there is a chance for some Retina issues and they had to dilate my eyes and just a PSA. ..I don’t know if this is me just me or if it was my POTS or my MCAS or what it was, but that literally gave me the worst craziest flare up. I almost fainted like I got an instant adrenaline dump and thought I was gonna pass out in the ophthalmologist office 😭 I was reading and the active ingredients inside that eye drop solution are Phenylephrine and Tropicamide which can mess with your autonomic nervous system? Anyways, I wasn’t aware of this so just a PSA. If you need to get your eyes dilated and have POTS and are particularly med sensitive or severe I would try to avoid it unless necessary/ no other option ofc. I heard afterwards that there can be alternatives to the drops. If not , definitely bring someone along with u and tell the provider😆
My doctor suggested getting a skin biopsy to investigate DIV lichen planus and lichen sclerosis more. I’m super afraid to get the skin biopsy as I already have constant unprovoked pain in vulva especially clitoris hood. As anyone had experience with a skin biopsy? My doctor said they can even offer a twilight sedation too.
Hello looking for a provider in Southern California . The Lichen Sclerosus Support Network LSSN directory is down? Or maybe I’m using it wrong but it just keeps crashing or re rerouting me to the main menu:( I’ve been waiting for the 5 star woman only LS group to approve me because I heard they have a directory but I haven’t heard anything back. I’m specifically dealing with LS or LP in vulva area. Please give me any advice because I’m struggling with lots of pain!
has anyone had experience with a swollen and painful clitoris/ clitoral hood/clitoral body? It’s very very painful and uncomfortable I’ve been to many obgyns and vulvo specialists and they can’t figure out why it keeps swelling up. I do have a history of nerve misfiring yeast infections and div. Gabapentin and lidocaine help but don’t love the side effects of brain fog and tiredness but use them anyway cuz the pain is so bad. My doctors said the skin looks generally healthy besides some slight redness and swelling. They don’t think it’s any of the lichen diseases or a keratin pearl. I was negative on all my swabs for any infections or bacteria’s besides the occasional flare up of yeast infection. They advised I try PT and a nerve block but I’m afraid they are missing something? Let me know if anyone has experience with this or suggestions . I’m getting an MRV and MRI of my pelvis and lumbar spine and abdomen too to see if I have any nerve congestion or compression or spine injuries . I did fracture my L5 like 10 years ago so they think they could potentially be causing me issues? I’m not sure
Hello everyone I just wanted to share some resources / provider directories that have helped me find some doctors in my area. I’m sure these have already been shared but just sharing again.
First is National vulvodynia association - https://www.nva.org/providers/
Sexual Medicine Society of North America- https://www.smsna.org/spma-find-a-provider
International Society for the Study of Woman’s Sexual Health https://members.isswsh.org/spma-login
If the links are glitching you can just go to the websites’ provider directory tabs
Hello everyone, I 21(F) am experiencing vulvodynia, clitorodynia, and vestibuldynia from reoccurring yeast infections and DIV ( Desquamative inflammatory vaginitis). I currently use hydrocortisone suppository twice a week for DIV but it’s caused some reoccurring yeast infections + slight skin thinning. My doctor suggesting maybe trying vaginal estrogen pills 3x times a week but said it was up to me. I have normal periods ( for the most part I do have PCOS) so he doesn’t think I lack estrogen but does think it would help helpful anyway. I got a doctor for a second opinion but he said he didn’t think I needed it since I’m so young? I’m pretty conflicted on what to do. Im willing to try it because that’s basically the only thing I’ve been offered so far besides gabapentin and some other pain meds and PT. Please let me know if anyone else has tried vaginal estrogen before menopause and what they thought about it. Thank you.
Hello I’ve been using gaba topical 2% on vulva and vestibule area for about 2 months now. It helped a lot with the excruciating nerve pain I had but it’s been causing worsening headaches. I have dysautonomia so my nervous system is very sensitive to meds even at this low a dose and I’ve noticed ever since I’ve started it, I’ve been getting worsening headaches to where they have become migraines. I’ve tried baclofen+amitritipyline mix but it sedated me too much. My doctor talked about switching to vaginal estrogen cream but I’m worried it won’t help as much as my gaba does. Any other alternatives or ideas for me?
Hello everyone I just wanted to share good news that I got a lot of help at the UCLA children’s pots clinic with Doctor Meeryo Choe (neurology)and Alice Hoftman (rheumatology). They really took all my symptoms into account and believed all the symptoms I was experiencing including fatigue, pain, dizziness, and a million other things. They prescribed LDN, ivabradine, mestinon, qulipta, Zyrtec, methylene blue, and physical therapy. They also made a bunch of referrals and ordered so many labs for me to help with my chronic pain and fatigue that all stems from Dysautonomia. I would highly recommend this clinic to others if ur 21 or below! They accept insurance and even medi-cal through LA care. They do require a referral from a doctor to get in. They told me they were also working on an adult pots clinic so I will update on that but in the meantime they also have an adult me/cfs clinic that treats pots symptoms with similar meds like LDN+. I’m so happy to have finally met doctors that know more about my condition than I do as it’s usually the other way around. I’m hoping these meds help me! Let me know if anyone has experience with any of the meds I mentioned above and what to watch out for!
Hi, I’ve struggled with reoccurring yeast infections for the last 2 years. I’ve had 7 in 2026 already and 8 in 2025. They’ve absolutely destroyed my skin and kept the area inflamed to where is created major problems for me including neuroproliferative pain and DIV. I can’t take diflucan because of a heart med I’m on called corlanor. I’ve only used miconzale suppositories 100 mg for 7 days because I had DIV and my skin is sensitive to a lot of the azole creams. I’m seeing a vuvlovaginal specialist / urogyno soon, hoping they help me. Let me know if anyone has suggestions on what to ask my new specialist. Or any suggestions for me directly to help with the yeast. I also have severe clitorodynia where it’s hard to clean the buildup under the hood so I suspect yeast gets trapped under but cleaning it is impossibly painful and sends me into a flare. I can’t tolerate boric acid because the skin there is very fragile and sensitive it feels like fire. Vaginal probiotics helped but my old doctor told me to stop them because there’s too many products being used in that area already? Any advice appreciated!
Hi everyone wondering if anyone has suggestions for moisturizer for vulva area. I have neuroproliferative nerve pain in the vulva and clit area and have been using zinc oxide to create a barrier over the area. The zinc oxide is super soothing and seems to be the only thing that works but it’s been causing too much buildup and sebaceous cysts/acne that I want to try something else. Jojoba oil burns me a bit and so does plain petroleum jelly. Mineral oil is okay. Zinc seems to be the only thing that works for me but the offsides have been out weighting the plus sides sadly. I also am prone to yeast infections so I have to watch out for which moisturizers/barrier creams I use. Let me know if anyone suggests anything as I’m really struggling:(
Hi I’ve been dealing with excruciating unprovoked pain in clitoris area and above the clit hood- also provoked vulva and vaginal area. Gyno perscribed me gabapentin cream 2% and physical therapy, also said I could use zinc oxide to help with burning sensation of skin. Only thing is I think the zinc oxide might have created some build up under clit hood and each time I clean it, it causes massive nerve flareup pain and even accidently gave myself a small 2mm cut on the area cleaning. Usually I soak in the time and use a q tip or cotton towel. I suspect I might have a keratin pearl or adhesion but my gyno doesn’t seem familiar with that and brushes it off. Super super frustrated and feeling hopeless. Let me know if anyone suggests gynecologists in the Southern California area that could help me/take my seriously. Also been dealing with reoccurring yeast infections and DIV that probably triggered all these nerve pain issues. I’m 21 and I had to take medical leave from school and work because the pain had made it difficult to stand or sit for long periods of time + other health issues. I know Dr. Goldstein in San Diego is an option but his office doesn’t accept insurance and the costs are very high! Thank you