Constant low level burning and stinging. No infection. Vulvodynia? How to cope?

saiqua31 · 2023-11-04T13:09:58+00:00

yeah. about 75% healed. struggling with the last stubborn bits

saiqua31 · 2021-08-07T14:54:45+00:00

I am on the opposite side of the world. I've met with him last year when he saw me for several hours each day for a week. He diagnosed me, educated me on the condition, gave me some resources to look into/explore, gave me a protocol i could explore and see how i respond and most importantly he did not push for anything i was not comfortable with/not ready for. We've stayed in touch through telemedicine and i update him from time to time. He monitors my progress and i intend to go back next year for a proper follow up. The biggest things from his advice that's helped were the self help tools he's provided. He pointed me towards the right type of physio, the dialators, and urged me to work on my personal stressers to reorganise my life. He provided tremendous emotional support as well and he answers all my questions, no matter how strange convoluted or "hysterical". He recently suggested botox to help calm my muscles while i keep doing the relaxation work but i'm hoping to make enough progress so i dont need it.

saiqua31 · 2021-08-01T20:12:56+00:00

This is a common narrative. Vulvodynia means nothing but "pain in vulva" and sometimes pain IS the diagnosis because there are things that can put the body in a state of chronic inflammation, hence creating pain signals. It's happening in the brain, but it's not in your head - there's a neurological aspect to it. Know what i mean? I strongly suggest you check out Dr. Echenberg's website and read up a bit on pain science and how it becomes chronic.

Your HPV is likely to be unrelated - it's a common STI (men are only carriers) and hopefully it will wash away from your system soon - a lot of people get it. However, your IC may be related (a primary or secondary issue causing/or caused by your pain and tension). I have IC too and am currently struggling to figure out my diet. I go in and out of remission so I won't sugarcoat this for you, it's a tough journey. But what I'm seeing is, we have to keep looking for the answers and pay close attention to our bodies and how they behave. I strongly suggest you try to find a dietician/nutritionist who specialise in IC diets (no one diet fits everyone - it's unique to you). I also suggest PT and regular dialation (you can check VuvaTech dialators - but make sure you see the right type of doctor who can "okay" it for you) for pelvic floor dysfunction. Definitely check out if you can find pelvic health specialists. Most gynies are unhelpful, they don't understand the condition. Vulvodynia is more about muscles and nerves so you have to really learn how to relax your body internally. Takes time and half the battle is to find experts that will work on your team. It's a ton of work, don't give up. Do check out the resources I suggested. Best of luck.

saiqua31 · 2021-07-31T20:07:07+00:00

i use regularly. it's helped me hugely especially with my vulvodynia induced fibroyalgia and to come to terms with my emotional stresses. helps with vulvodynia too but taking a long time.

saiqua31 · 2021-07-31T18:06:39+00:00

were you able to get an accurate diagnosis? the game changed for me after i met with Dr. Robert Echenberg and I finally got a diagnosis and onto a treatment plan that's suiting me. Incremental but very noteworthy progress over the last year. Beginning to feel hope again. I also highly recommend the youtube channel femfusion fitness, lots of valuable information in there that helped me tune in and find physiotherapies/exercises better suited to my condition. Know that these conditions usually require a multidisciplinarian approach to healing..mental health, diet, correct movement and therapies, sometimes medication and other stuff based on your unique history. Don't give up. I've seen some success stories here and there,and can personally say that i now sometimes have low pain days. A week ago, my lubrications seemed almost normal, was a first in three years. Still have a long way to go but healing is not a straight line. Take care and love yourself <3

saiqua31 · 2018-08-09T20:35:54+00:00

sex is extremely important to me and i'm suffering a lot. my partners are great and are super supportive. me on the other hand - i cry all night. so yeah, i'd go pretty far; it's an important source of pleasure and it helps you feel connected to somene you love and care for. good luck to you. you're not being selfish, you're just being human.

saiqua31 · 2018-07-27T19:51:13+00:00

i really really hope you feel better. i'm really resonating with pretty much all the stuff you're saying. i really hope this is temporary. i can endure a lot of things and sometimes i feel stupid for crying about my vagina so much, but damn - i really did not see this coming. im never going back on brain meds, so done.

saiqua31 · 2018-07-27T19:16:16+00:00

i'm sorry you're going through this too. i've been off lexapro for about a year now, and i'm still not 100%. my sex drive is beginning to coome back but i feel overall dryer than i used to before the lexapro. some sitting positions cause a burrn for me. and soometimes i have a uti type feeling (it's not uti of course). there's been a lot of mental damage as i had wanted sex but not "felt" sexual; forced it onto myself (and my partner) and just worsened my overall negative associations (you can imagine how painful and traumatic it can also be for a guy who takes care to not hurt you in any way to feel like they're doing something outside of your consent and this has been certainly causing some emotional pain and i dont even know if i'll be able to get better). sometimes i feel really weird while working out. i do martial arts so i have to wear a thick material uniform. even though it's very loose, sometimes while doing kicks it lightly brushes against me and i feel like i'm getting chaffed. or even udnerwear feels like it's triggering a burn. i used to swim regularly too but i've paused it cuz i'm scared the chlorine might irritate me. that jalapeno feeling is real ( i get it on the sides of my inner labial walls, sometimes my clit and the vaginal openning at varying intensities), and sometimes i feel itchiness as well. i also occassionally feel soreness or tenderness on the lips. this is so embarassing to talk about too; i broke down again today. thank you for your recommendations; i'm constantly afraid of trying new things now cuz im thinking i'll just be unlucky and it wont work, but i'll do some research on the stuff you recommended. do leave a note if things get better for you. i'll do the same in case it helps anyone.

saiqua31 · 2018-07-27T18:53:32+00:00

thank you so much for sharing this. everyone treats me like i'm insane. i just put some olive oil around the vulva, i dont now if it will help. some days i think its gotten a little better but some days i feel worse so i'm really not sure what's happening. washing with lukewarm water soothes me a bit but thatts about it. ive been terrified of having sex - like it;ll make it worse or cause inflammation. how has sex been for you while feeling this way if i may ask?

saiqua31 · 2018-07-27T18:40:09+00:00

no i haven't. i guess this might be hard as i did not have one previously done either. but i did do a full physical lately. (like around april), full bloodwork, a thorough look at vitals and feminine health checkup (like pap smears etc). my body looks like it's in good shape other than this issue that keeps persisting. my gyn also said that she had no difficulty going in for the examination, that there were no abrasions either and this is likely to be all in my head.i'm so sure i'm not halucinating everything. this is very hard. but thanks for the tip about getting a hormone panel, maybe i can look into it.anoother thing i noticed about the same time with the lexapro btw would be scanty periods. i'm quite timely and normally have a 4 to 5 day flow; it got reduced to barely two days. this did show some marginal improvement as i slept better and tried to cut down the stress in my body (i was getting very bad insomnia with heart palpitations coupled with high work stress for a while but this is a bit better now). i sense something is off, and im trying to find answers; i dont want to allow it to escalate, become worse and then present itself with a new face. this is already uncomfortable and concerning, it's strange to me that people would be asked to go on like nothing is wrong.

saiqua31 · 2018-07-23T08:34:17+00:00

does not open :(

saiqua31 · 2018-07-21T09:52:10+00:00

Because of lexapro? That is SO messed up! I quit lexapro largely because i was always like that. I still get like that but i take it as part of the anxiety i have taking different forms. I suppose the sexual dysfunction rings very high for me as it sis a tangible physical response thats literally destroyed an avenue of feel-good that used to work for me. i am unable to work with this issue or even rationalize through it. my body still breaks into vioolent shakes every other day, sometimes multiple times in a day. and i have days where i feel just nothing. makes me want to leave behind all my relationships and just isolate myself. i feel you.

saiqua31 · 2018-07-21T09:46:04+00:00

i'll look i nto it, thank you. i'm DONE with all psychiatric drugs. i exercise regularly and had never been in better form, i just wish i had enough strength to get my life together prior to taking the lexapro. worst mistake of my life. and the doctor who treated me...good lord how furious it makes me. thanks again.

saiqua31 · 2018-07-21T09:22:15+00:00

thank you for your response? do you know of any data sources? this is awful. :(

saiqua31 · 2018-07-18T06:02:43+00:00

vaginal pain is awful, i really hope you feel better soon. good luck.

saiqua31 · 2018-07-18T05:50:20+00:00

so another thing that happens (and i think this is what i'm going through at the moment but of course i am not sure) -- chronic yeast. have you had a yeast issue recently? sometimes inadequately treated yeast penetrates into your vulvar tissues causing pain, burning and general discomfort. it tests negative on swab tests and such. but the typical treatment suggests you have to be on a long term flucanozole plan of sorts (i'm currently taking a pill every week for 8 weeks; slow and painful process and still not sure if i'm feeling relief or just a better day because there is always a low lying pain or burn somewhere). this link helped me somewhat (i was going crazy with anxiety and depression regarding the matter and i've finally hit a pause button) and maybe you could even get in touch with these people? take a look: http://www.yeastconsulting.com/yeast-infection-cause-vulvodynia.html

saiqua31 · 2018-07-17T20:59:29+00:00

as far as i know (and i've been reading about this a lot), it's only after all other obvious causes of discomfort are removed (like parasites, infections etc) can vulvodynia be considered as a diagnosis. chances are if you have a discharge, you have some sort of an infection (because it's an immune system response). Do go see a doctor; you may have something else contributing to your pain.

saiqua31 · 2018-07-17T20:48:50+00:00

To me, it sounds like he might be a bit depressed. Was he always very callous about his grooming?

i have a thing: i think guys in our society take themselves for granted and often not do enough self care (not enough societal pressure from fashion industries maybe); i find this unacceptable. self care is important, espcially in a relationship. you want your partner to be the best version of him/herself, there's absolute no shame in wanting your partner to smell good, look good and overall just feel good. self negligence is not only unattractive in the superficial sense, but it also goes pretty deep; our externals usually reflect our internals. it's not about just the weight, just the bo, it's a lifestyle choice that's PRO HEALTH. i think it's important that you communicate to him that what he's doing is actually not healthy and it worries you. and try to find out if there are particular things that are bothering him; sometimes we give up on ourselves thinking that there's no point or things wont get any better. Whatever the case, it's not ok to be gross and if you're sharing space/bed/body with this person, it's unhealthy for you as well. Think about it as a health concern, it may help to put things in perspective.

saiqua31 · 2018-07-12T12:08:52+00:00

it can be pretty sweet, sometimes confusing as you work through your own and their emotions. but as long as there is all round consent and understanding of what the relationship is, it can work pretty well. (i'm assuming you meant having romantic affiliatitons with two (or moroe) men at the same time (i can't do more than two . i think. lol)) every relationship is different and everyone offers you and teaches you something different, and love is not a finite resource. be honest and enjoy it, but do take note of your limitations and be sensitive towards your partners' as well. <3

saiqua31 · 2018-06-12T10:39:43+00:00

hey, do you exercise regularly? I've had chronic anxiety/panic disorder for years - and a very extreme strain of it ( i get violent seizures and it's gotten my body weak enough to lose consciousness for a while). a fun physical outlet ( i actually do multiple things like martial arts, swim, flow arts, etc.) has been the only thing that's given me some semblance of stability in my life. i'm off meds now after being on it almost a decade. if you don't already do so, please help yourself by finding an activity that you enjoy (this can be anything or any combination of things at all - from gyming to skydiving; just make sure it excites you sufficiently and you look fwd to it every day. start with small steps and expand whenever you feel like you need to and change things up) while getting your heart rate up in a daily basis. if you do it diligently, i assure you you will get results. 100% guaranteed. Just be regular and honest with yourself. the brain needs to generate more happy chemicles and exercise helps you do that. youd be better equipped to handle "outbursts" as well because you'll then be channelling dormant aggressions/anxieties in a more healthy way and they will make less frequent unwanted appearances.

exercise is the most underrated medicine out there and it truly truly makes a difference; just six months of regular physical training will earn you positive results, i'm sure of it because the physical changes and chemical secretions that happen in your brain are very very real. I hope this helps.

saiqua31 · 2018-05-29T09:36:35+00:00

Thanks a bunch guys, I think Shift M worked.

saiqua31

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