Vulvodynia: Current Trends in Treatment & New Research | #UCLAMDChat Webinars



hi I'm dr. Andrea wrapkin from UCLA department of obstetrics and gynecology today I'm going to talk with you about a condition called vulvodynia we're going to discuss current trends treatment and some of my research that may be helpful for all of you that are interested if you'd like to ask questions you can use the Twitter hashtag noted here this is what we'll be talking about this morning I'm going to go into some detail about what actually is vulvodynia the symptoms of the disorder causes the treatments that are currently available our research and other current research and then we'll take questions so what is vulvodynia first of all what is the vulva the vulva is made up of the external female genital organs that you can see in this picture here and if the condition of Abedini is a chronic pain condition it affects the vulva and the opening of the vagina approximately seven to fourteen percent of women in the u.s. suffer from vulvar and vaginal pain and vulvodynia can affect women of all ages really there are two general types but as with any categorizing system there's often some flow between the two disorders so very often we'll have women who have both generalized vulvodynia as well as vestibular dinya or may have generalized at one time and then this may develop into a vestibular dania condition so generalized meaning that the pain is located in different areas of the vulva it may be the whole of all of our area it may be on the larger lips of the vulva in contrast with vestibular dinya and I'll show you the picture again shortly where the pain is localized to the vestibule now in generalized vulvodynia the pain may come and go or it may be constant it may be felt just with contact for example with sitting with clothing with touch or it may be also unprovoked and of course can be both now with the stimuli dannion the pain is localized to the vestibule the term vestibule is similar to the vestibule or entranceway of a house for example and I'll show you the vestibule in a moment the pain is usually a burning pain and it's usually felt with contact only but can also be unprovoked here's the vestibule and it is bordered by these small lips of the vagina and here's the urethral opening in this part this mucous membrane tissue is considered to be the best of you and as I said the most common symptom of all virginity and vestibular dénia is this burning pain what else can women feel itchy stinging aching rawness tenderness now the vulva generally appears normal although there may be some increase in redness in this area here of the vestibule what are the causes well I wish we could say we knew exactly what causes vulvodynia we'd be much further along in research and treatment but we don't exactly know what causes vulvodynia and likely there's more than one cause some possible contributing factors that have researched to support these concepts include an increased number of little nerve endings in the valve our tissue particularly in the vestibule where this has been studied changes in hormones or hormone receptors in the tissues and by hormones we're talking about estrogen and androgens like testosterone and yes women do make androgens just Ostin increased inflammatory secretions in the tissues so there could be our there have been found to be inflammation cells inflammatory cells increased in the tissue and some mediators of inflammation that are increased in the vestibular tissue now the pelvic floor these are the muscles that line the vagina that hold everything up there can be pelvic floor muscle weakness but more interestingly spasm so spasm or tenderness or inappropriate tightness and contraction is something that can be very problematic in this disorder and some of the work that we're doing now has to do with the brain and we there are many studies showing changes in brain processing of pain signals from the vaginal area I'm going to go into some of that shortly sadly women see an average of five doctors before being correctly diagnosed now how do we make a diagnosis of alpha Denia the doctor will take a thorough health history including all the symptoms and the aggravating alleviating factors and what led up to the problem that you're having we then look at the tissue because we want to rule out any other types of treatable conditions that are not specifically vulvodynia so we're looking for changes in the skin we're looking for inflammatory conditions that are not related to vulvodynia we're looking for infection vaginal infections all of our infections and we're looking then for other possible causes of pain such as when the nerve endings in the nerves to go down to the Evolve our tissues become activated so we're looking for you're off of these neuropathy is of a nerve called the pudendal there for example the doctor will then perform a q-tip test and the q-tip test is a situation where we take the q-tip which is very soft on the end and apply a light pressure to the areas around the vestibule and other areas of the vulva now when you touch the vestibule with a cotton swab with light pressure it is generally not significantly painful but if you have a significant or severe pain with touching the vestibule for example that would be consistent with vestibular Denia a pelvic exam and pelvic floor muscle exam then completes the assessment okay let's talk about some of the current treatment approaches that we have interestingly as with any chronic pain condition treatment is often what we call multimodal or multi-platform so it's not just one Avenue that's taken for the treatment removing potential irritants and I'll go into detail about all of these shortly topical medications that can be applied to the painful area physical therapy for those pelvic floor muscles we talked about there are also oral medications that are prescribed that alter firing and get the nurse to go from the bad side back to the good side cognitive based therapies and including mindfulness approaches and surgery okay what do we mean by irritants why would a soap be irritating I've used the soap for years and suddenly it's irritating well that may be the case just because you've been using a particular product doesn't mean you can't now have developed what we would consider a contact dermatitis like situation or that if the tissue is becoming more sensitive that the product you're using isn't irritating the most defending agents are usually our soaps any colored or scented soap strong detergent fabric softeners even those fabric softener sheets that go in the dryer certain lubricants that are not scent free bubble baths of course and bath oils we suggest you wear comfortable underwear cotton panty liners very often of course for sanitary protection during menstruation this may be necessary but it is not a good idea to wear these panty liners every day they are very irritating and then we want to avoid potential mechanical trauma such as what's lift listed here under wear tight fitting jeans etc okay what types of topical medications are available we use anesthetic and anticonvulsant creams for this condition and I'll explain to you why the anesthetic is not just to relieve pain but these anesthetics such as lidocaine have certain chemical properties that block chemicals in the upregulated or hyperactive nerve so there again re-educating the nerve they're not just used to treat pain or mask pain so lidocaine is used topically and similarly gabapentin which is an anticonvulsant also alters the way nerves are firing when they're firing abnormally and this can be compounded to a cream so that you avoid some of the systemic effects there are other types of medications that we may also put in compounded creams but these are the two that have been studied for vulvodynia and vestibular Tinian now if we ascertain that there's a deficiency of hormones either related to long-term low-dose birth control pill usage which certainly doesn't affect everyone in this way or other hormone birth control approaches that could lower estrogen and testosterone or if we have someone who is in the pyramid apostle years or even in the postpartum time with lactation there can be a decrease in estrogen we may then provide a hormone based cream with tip estrogen and occasionally with testosterone to help supplement thin tissue the oral medications again I'm talking about medications that are going to re-educate the way nerves are firing so this is the goal of something like a tricyclic antidepressant you may not be depressed that's not the reason we're providing a try cyclic in this setting it's really to work on the nerve endings and these are some of the tricyclics that are available and by the way they're used for other types of nerve pain problems and pain problems in general and with vulvodynia very often there are other pain problems concurrently such as migraines or other types of headaches irritable bowel syndrome bladder pain syndrome fibromyalgia and using a systemic medication can approach all of these conditions now when would we choose a TCA over an SNRI or SSRI there's slightly different side effect profiles also if there is depression or anxiety we may be more likely to choose an SNRI or an SSRI so that we can treat that as well anticonvulsant I began to mention with the gabapentin but there are other anticonvulsants that can also be used again medications in the same grouping may have different effects and different side effects so we may try one or another of these physical therapy most of the patients that I see who do have all of edenian vestibular dunia either primarily or secondarily meaning it may be the cause of the symptoms initially or it may be a consequence of the symptoms develop pelvic floor muscle dysfunction and there are trained physical therapists and for women we have female physical therapists that manually teach how to relax the tight muscles and tissues and work with the abnormal tissue in the pelvic floor and then patients also learn breathing techniques and relaxation techniques so that they can do these stretches and exercises at home and sometimes partners are taught the techniques as well sometimes we use dilators in conjunction with the PT so that you can remember to learn how to relax while there's a structure inside the cognitive therapies are really to change our fearful and anxious thoughts about the pain that we're having and to improve self-efficacy that's a term that means that we really know we're going to get better and they're often doubts when we're in the midst of this pain about whether we will get better but because as a physician we know you will we have to try to teach you to teach your brain how to remind you of this and that's basically what cognitive behavioral therapy does mindfulness also helps to restructure the way the brain is conceptualizing pain and then of course sometimes we have sex and couples therapy if that's indicated managing anxiety and depression which may be subsequent to the pain or may have occurred prior to the pain is also important now when would we do surgery surgery seems like a quick quick fix why not operate all the time well first of all it has to be localized to the best of you love the pain but second of all the best to be like t'me may cause more pain in certain situations so the doctor has to be very sure that this is appropriate for you and in general whenever we're proposing surgery we want to make sure that you've tried other reasonable treatments and that they haven't worked and then we can remove the sensitive tissue the hypersensitive tissue I should say around the opening of the vagina to remove what may be excess nerve endings that contribute to the pain unfortunately in one individual we cannot take a biopsy and say you have excess nerve endings so that's why we need to make that this is the right surgery for you I'm going to tell you a little bit now about some current research that we're doing at UCLA in conjunction with the Center for the neurobiology of stress we're collaborating in what's called an MRI endo phenotype clinical study and I'm going to tell you what that means shortly with this study we are hoping to learn a number of things number one we'd like to be able to use brain imaging to find effective treatments that target specific pain findings so what I've mentioned you are a number of treatments and the the exam is somewhat nonspecific so how do I know when I examine one individual which treatment to start with and do we really have to go through all those treatments before we actually find something that's really going to work very effectively this is the goal of the of this study is to be able to hone our treatments so that we know what is specific for you so brain imaging that's one approach and when you can see that there are certain abnormalities that we may find in this study this may lead us to future treatments for evolved edenia so if we understand the mechanism behind the different presentations and centers then we can have what we call mechanism based treatment or mechanistic treatment so what kinds of mechanisms are we looking at besides the brain we're looking at genetics because certain individuals may have changes slight changes in their genes that mean that certain proteins are a little different and maybe they predispose you to inflammation or to alterations in the way that nerve endings are functioning are we also looking at the microbiome you've heard that quite a bit in the news the bacteria that live in the vagina and evolve our area and metabolomic of the products of these microbiome microbiota I should say and these products can get into the bloodstream and can certainly affect the brain and we're looking to see what is unique to the vulva so what is an endo phenotype actually you can see the the definition here we're looking at the behaviors and characteristics of a condition that have a clear genetic connect and they more often found in individuals with a particular syndrome than in the gym than in the general population many of these endo phenotypes maybe even present before symptoms appear so they're helping us not only to search for the cause but also to help with treatment I mentioned that metabolomics are these products from the bacteria and they basically are chemical fingerprints of cellular processes and then the MRI means magnetic resonance imaging this is not an x-ray this is just a magnetic imaging and it is not something that is has the same side of our harm effect as an x-ray for example but it does give us a clearer picture of organs and structures in the body and right now what we're talking about is the brain so what is our study involved it does mean coming to UCLA we do not unfortunately have funds to provide transportation to UCLA however from across the country for example to visits to UCLA one week apart and we do a pelvic examination and we do some very specific sensory testing of the vulva area and the muscles to see the threshold for sensation and for abnormal sensation we'll also look at the blood and we're looking for these metabolomic changes and also the genetic mentioned changes I mentioned there are a number of questionnaires because we at this point this is our way of getting at mood anxiety the way you process information and then a short diet diary and then the MRI scan of the brain for this we do compensate you and pay for parking and you actually get a picture of your brain we are studying women between 18 and 55 the reason we had the cutoff is because the brain does change over 55 and we are also comparing two women who do not have vulvodynia and sometimes two other pain conditions and the repository that we have includes individuals under 50 generally healthy we do take a health history and no medal in your body but dental work is generally okay the metal aspect has to do at the MRI machine okay here's some examples this is from some of the preliminary studies that we've been done we've been doing of what we call highways in the brain so what are we looking at here wide look at the quote highways looking at the connections between brain structures is one way to measure the brain involve edenia and these connections are what we call the highways and they actually signify the direction and the speed of flow of information between brain regions here's an example of some resting state brain images what is resting state that's where you're basically just lying in the MRI scanner you're not sleeping but you're also not doing a task and there's no stimulation for example we're not stimulating pain and involve our area at this time what we found in our preliminary studies is that women with vulvodynia compared with those who do not have vulvodynia show greater connectivity in an area called the sensory motor cortex the sensory motor Network and what exactly is the sensory motor network it receives sensory information or sensation from the periphery meaning from the nerves in the vulva area and the vagina and perhaps other areas in the in the periphery that's outside of the central nervous system and it plays an important role in body sensation awareness and also in the generation of appropriate motor responses motor is movements so remember I talked about the pelvic floor muscles and the interesting connection here then we do something called structural brain imaging and again we find in our preliminary studies that these sensory motor regions were found to be significantly different invalid any a compared to unaffected women so the studies are ongoing we have many more what we call information points to collect at this point and if you're interested in the studies or any further information about vulvodynia please cut it please contact our study coordinator here's the phone number we also have an email address and now I'd like to open this up to any questions that you might have using this hashtag noted here you you okay the first question that we have is how long is too long on estrogen so I'm not sure whether this is coming from an individual who's using estrogen in the menopause or someone who is pre menopausal so estrogen has different effects at different stages in your life and again it depends on whether if you're in the menopausal years if you have to take progesterone with it because there's the difference between just estrogen alone or taking estrogen with progesterone so there's no simple answer here but if you happen to be in the menopause taking estrogen alone it's thought that about 10 years is reasonable having said that we can apply topical estrogen to the vaginal involve our area indefinitely and as long as you don't have an estrogen dependent cancer for example we can use topical approaches throughout the entire lifespan and certainly in reproductive age women there's no limit on on the duration of use of what we call additional estrogen or exogenous estrogen well we have some individuals who have asked when will I have this condition for my entire life and the answer is generally no we do have effective treatments is this going to be possibly a sensitive area for you a slightly vulnerable area that may be the case and this is why we're engaging in this kind of research is basically so that we can find complete cures so we do have ways of treating I would say at least 90% of individuals who can get to the point of not experiencing pain having satisfactory sexual lives and that's the basic goal of the treatment it may be multidisciplinary it may involve a number of approaches but in the long run we can manage this problem and we can get to the point of having no pain and comfortable enjoyable sexual life one other question we've been asked before of relate two types of birth control that may increase the risk of vulvodynia so again not everyone is susceptible millions of women worldwide use low-dose hormonal contraceptives and they do not have problems with vulvodynia but the contraceptives that could slightly I would say if you already have vulvodynia particularly vestibular dinya we aim to have you discontinue the combined hormonal birth control pills and use something like an intrauterine device for example even the intrauterine device that has hormone in it the progestin containing one does not block your ovulation does not block your estrogen and testosterone production from your ovaries so that's an effective contraceptive that can be used you need not just rely on condoms for example but we would discontinue the hormonal medications that do suppress your own estrogen and androgen production if we determine that this is playing a role in your specific case so not in not in all individuals there's also been a question where can I find out more about vulvodynia there is an organization called the National vulvodynia Association in VA org and this organization has a wonderful website you can join in VA org and you can see where you where there local providers you can get a newsletter updating you about all the current research and you can also get information on how to help yourself if you have this problem I have one more question for estrogen treatment what are the long-term side effects for cancer patients well it depends on what type of camps are most cancers do not have estrogen receptors that are not bothered by aspirin in fact estrogen can be very good to take if you for example had chemotherapy and you're on estrogen function is no longer with you however I think that the main situation we're talking about is breast cancer even in situations where there isn't a hormone positive breast cancer oncologists are very reluctant for women to use estrogen and in the first few years up to the first five years after a diagnosis usually estrogen cannot be used however that doesn't mean we can't supplement the tissue with other types of agents some of these include oil based coconut oil is very good for moisture lidocaine is very good still for any discomfort related to the tissues and continuing dilator use so the tissues continue to have blood flow to that area there are some other quasi hormones that can be used for example DHEA but that would depend on your cancer in your particular situation in terms of endometrial or uterine cancer this also may be a situation where for the first five years estrogen cannot be used but other than that there are really very few cancers where estrogen cannot be supplemented if not systemically locally which is highly effective I'd like to thank you for joining us today for this webinar and if you have any further questions please feel free to join our to come to the ob/gyn website at UCLA health thank you

9 Comments

  1. Not liking this new direction Vulvodynia is going with. Why do bands always go soft as soon as they’re popular?

  2. Can women with vulvodynia get pregnent??

  3. Penn State has free program!!!!

  4. Am glad I come across this ur message, now I can take some the medical to the doctor to see if he can make pelvic exam

  5. I was just trying to listen to some brutal Vulvodynia slams but I somehow ended up here…where’s the slams and mosh pits

  6. I suffer this for 8months until now my vulvodynia IT,s not ok

  7. where are the dank slams

  8. Vulvodynia is a band

  9. Thank you for this video. I was feeling very alone in this and don't feel like I will get better because there is limited information and limited specialists in my city in Australia. I would like to take your messages here to my doctor and see if it helps. Thank you again

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