Vulvodynia

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    Community Voices

    Digging into the connection between POTS and Pelvic Venous Insufficiency

    <p>Digging into the connection between <a href="https://themighty.com/topic/postural-orthostatic-tachycardia-syndrome/?label=POTS" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceac00553f33fe99a8c8" data-name="POTS" title="POTS" target="_blank">POTS</a> and Pelvic Venous Insufficiency</p>
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    After many years of being misunderstood and misdiagnosed this girl recieved her second accurate diagnosis 🥳 I never heard of #Vulvodynia before. Now i have a name for this locolised chronic pain !

    I previously got diagnosed with #MastCellActivationSyndrome

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    Corey Hall

    Beekeeping Helped Me Heal From Sexual Assault, Trauma and Vulvodynia

    Vulvodynia is chronic pain or discomfort around the opening of your vagina (your vulva), for which there’s no identifiable cause and can last as short as weeks to even years. Pain may be constant or occasional, then vanish as sporadically as when it started. My vulvodynia came about after my sexual assault three years ago. Any time I would have sex or touch my vagina, even in a nonsexual way, immense pain would occur around the entrance of my vagina. My muscles would involuntarily constrict, yelling, “Don’t touch. Don’t come near.” If I was being intimate with a new partner, or in self-pleasure, the sharp pain from my vulvodynia would intrusively trigger the repressed memory from my assault. Despite how hard I attempted to suppress and forget, I felt hopeless as if I was fighting my own body. My attack was violent. There isn’t much that I remember, but I do recall my attacker giving me drugs and waking to this immense amount of pressure on my body with a sharp sting between my legs. Before I knew what was happening, I realized that he was in me. Someone I trusted was taking full advantage of me and the situation. I deliberately remember saying “no” and saying “stop,” but instead they placed a hand over my face and my neck, rendering me completely helpless. My body was being involuntarily penetrated, which shot my mind clean out of my own body. It projected me in order to protect me as a desperate act of survival, but afterward, I didn’t know how to come back. For years, I lived between being half-here and half-somewhere else. I lost autonomy over my body and was reconditioned to associate this place of pleasure as a war zone and region of pain. I felt shame, guilt and pain with this portion of my body that should feel strength, life, and pleasure. It felt as though my body was rotting from the inside out, which left me retreating deeper into my own internal isolation, fearing what more pain could do to me. However, as hard as I tried to escape inwards, I couldn’t feel safe there either. The one place that was mine and that should only be experienced when permitted was taken from me. Safety, ownership and strength felt as though it was robbed. Where could I go? I was just about to hoist my white flag, surrendering to my mind and body, when one day I found release within the lullaby of a bee’s buzz that helped me put these memories of trauma to rest. I received my first bee sting, which woke me up from my state of paralysis as I felt their venom enter my body. My mentor told me that each sting is like a sort of an initiation process. The bees became my teachers that taught me how to work through the pain, find medicine in the venom, and reclaim the sensation of a sting. In the wild, when a bee swarms, the first place they navigate toward are hollow trees. They are the home base as the bees fill their empty chambers with wax, pollen and honey. The bees were my aid in learning how to view the hollowness in my womb not as deficient emptiness that left me as a broken thing, but rather a habitat that attracted the bees to me. They came to me in my hour of need and helped me to see my body as a home; space as room to create. There is a fine line between fear and respect. As I began beekeeping, I was able to cross through that threshold and I saw how much more I could accomplish once I moved through the statute of limitations within my own mind. I saw what this body was capable of and felt not only physically strong but mentally as well. Yes, of course, I should feel fear as I enter into a hive and hear this collective vibration surround me, which should stop me from entering, but as I walked through with a veil I felt protected and welcomed. The veil became my protector, which diluted my experiences and allowed me to breathe. It became the superhero cape that permitted me the mobility and courage to find ownership in my body as I walked through my fear. I was able to see what I truly could do once I embraced my fear, witnessing just how sweet life could be through the aid of a honeybee. Bees have the opportunity to either leave you with a brutal sting or gift you with something as sweet as honey. Before, all I wanted was to feel power. I searched for anything to help take the edge off. I had become dependent on my anger because it reminded me that what happened to me was real. In a life gaslighted by my abusers, anger was my tool that reminded me I could indeed feel something when all I thought I was capable of was being numb. The anger was what helped me feel as though I was getting justice. My abusers were living life as if nothing happened and here I was, suffering as I relived trauma repeatedly. The pain inside of me was demanding recognition and I had convinced myself if I let it go, then it would be excusing their actions and truly letting them off scot-free. I became obsessed thinking about how I got to that exact moment, what events in my life led to that experience. I began to blame everyone around me; my society, my parents, ex-partners, lack of self-confidence, childhood trauma. Sometimes I think we feel, “If we hold onto this just a little bit longer, then that will show them! That will prove to them just how badly they hurt me and they will finally know what they did! That will punish them!” The delicate truth I have found is that if someone cannot provide health and prosperity while in a relationship with them, then they certainly cannot provide it once we are departed from them. The same people who break us, can’t be the same who heals us. My pain demanded for someone to be punished so I sought after vengeance, but little did I know that the only one paying the ultimate price was me. That ideology is like being bitten by a snake and expecting the snake to get sick when we are the ones with the venom. I began to yearn for my venom to be released and found it when other survivors came together to create the #MeToo movement. For the first time, I didn’t feel so alone as others began to recognize and relate to my pain. Maybe I didn’t need to carry this burden on my own any longer. It was like bees clustering together to form a wild swarm, creating a collective voice that said, “No more.” Bees are a superorganism, meaning that alone they may not last long, but together they create a massive force that promotes the longevity of their hive’s survival. What’s one bee? What’s one woman? Together, both these forces are an indestructible and impenetrable mass to be reckoned with. The movement opened the stigma against sexual assault. Humans from all over were coming together. They showed me how to keep going in order to survive. They were my voice when I didn’t know how to use my own. They were my strength when I felt like I had none. This was exactly what the movement was created for. It was for us to band together, ready to fight and to show one another that we were not alone. Those in power like to isolate their victims to perpetuate division and make their victims feel powerless; however, when we mobilize, we reclaim the space and power within us by creating visibility. Once I began to acknowledge my trauma , I needed a way to become embodied. I needed to come back between the veil of my hiding. That was when I found bees. Their buzz enchanted me and from my first interaction with them, I fell under their spell. There was something I deeply resonated with. Here was this hive, compiled of mainly female workers who were equally being exploited and experiencing takings from our society. I had two choices after my attack. I couldn’t change what happened to me, nor could I control being changed by this experience. It was a part of me, but I can genuinely say that it’s no longer the only part of me. So what do I do with it? I could either continue to push it down deep within me, having it manifest backward through my health; or I could find a way to live with this rather than be lived by it. When I’m with the bees, my world becomes quiet. I begin to dance with the bees and practice the art of consent. I listen to their language and movement that instructs me how to interact with them. Just because I put on a suit that permits me the ability to move fearlessly through their hive, it does not give me the justification to treat them as disposable. Strength and power are a delicate balance, like fear and respect. Just as there are some days I wish to be left alone or not touched, the bees hold the same needs. What remains from my experience has made me stronger and more intuitive. I get to practice the act of consent with my bees because of the takings I have experienced in my own life. It has given me a deeper ability to empathize and protect my bees. I understand their exploitation, their wrongful takings, and their need for consent and desire to be respected. Whenever I do a honey extraction, I first ask the bees, “Do I have permission to enter? Do I have your consent to take? What can I give back?” Our relationship with nature has previously been one to “go out and subdue.” As I shift out of that mentality, I feel a moral obligation to steward the natural and to protect this species which needs our support. Just because I can take from the honeybee, doesn’t mean I should. I found strength and power within being able to put on a veil and walk through a hive. When I’m with my hives, I get to reclaim the sensation of disembodiment which brings me back into my body in a more restored place. I get to reclaim the sensation of a sting through a honeybee. Their venom is like medicine for my body where once before venom was like poison. The bees have taught me how to work through pain. When I’m with the hive and get stung, I cannot react or respond in fear; I have to feel all that the sting has to offer me. If I’m holding a frame full of honey or brood, bee larva, and drop it, I can cause more harm than good. Everything about beekeeping is engineered for human gratification. If I’m invading their sanctuary as a beekeeper, I have to ask myself: “What will entering do for the hive? Will this cause more harm or good? What type of keeper do I wish to be?” Yes, of course I should feel afraid as I enter into a hive and hear this massive vibration surround me as the bees buzz in my ears. I should be deathly afraid that something terrible will happen to me, but when I walk through a massive swarm and nothing happens, I see exactly how much more I’m capable of accomplishing once I move pass through the statutes of limitations within my own mind. I found strength within me, something that was never truly taken despite what I was made to believe. Sometimes, our society, parents or our partners fail us but it doesn’t mean we are failures. It means we keep going and we find ways to redistribute and purge the venom to reclaim a medicine that works in conjunction to our mind and body, rather than against it. We find community, ways to relate and an outlet for our pain so that it may escape us. We find a place for it, not one that shifts oppressions onto those more vulnerable than us, but space where in our hollowness we may reinvent creation. For me, my voids went from a deficient emptiness to an open space which provided bees the canvas for a swarm to build a hive in my life. I began to notice symptoms of my vulvodynia healing after each one of my stings, which brought me deeper into a place of self-awareness and body consciousness. I went from being a wounded woman to a wild woman as I connected with the hive and my womb. I found how to be brave once again and find respect for my body when previously all I thought I was capable of feeling was fear and pain towards it. I found how to feel strong, how to create and how to become embodied in this existence. Through the bees, I have been able to heal from my takings to create an agency that advocates on the bee’s behalf to show that we can have a different relationship with bees, one founded on consent and respect. My anger hasn’t left me, but it has alchemized like nectar converging into honey. It went from being a fiery flame to being like soft embers in ash. There are days when a swift wind will come and ignite those embers to burn brighter and other days when they lie dormant in the ash. In some cultures, honeybees have been worshiped as being reincarnated souls, symbolizing rebirth. Within my own life, from those ashes, I have found my own rebirth. From the hollowed depth of my womb has risen a massive force of bees oozing like honey from my legs, but if threatened will leave you with a brutal sting. I work to save the bees, not just because we need them but because they saved me. They have taught me how to become a queen.

    Community Voices

    Book suggestions

    Any good books on. being young and chronically ill? I’m 24 and I find I’m in a constant grieving loop for the person I was and wanted to be. That may sound dramatic, but it’s the truth. I’d like a book with suggestions to help me cope with the loss of my health and give practical advice for surviving the everyday struggles we deal with. For reference I’ve been diagnosed with vulvodynia, Pcos, and hemiplegic migraines. Unofficially, I believe strongly that I have fibromyalgia or something similar based on my symptoms

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    Do I have Fibro? Does is matter?

    Lately I’ve been going down the rabbit hole of disease research. I have been diagnosed with PCOS, Vulvodynia, and hemiplegic migraines. Since forever I have had flare ups of muscle burn that come on even if I’m doing nothing at all. My joints are all very tender compared to the rest of my body and I get hit by waves of fatigue on a daily basis. None of these symptoms are debilitating to me and I’m able to push through. Still, it makes me wonder. All of my symptoms of all my diseases seem to flare around the time of my period every month. Fibromyalgia seems to make sense in this regard and would provide me with a long sought for answer if true. On the other hand, having yet another incurable disease to add to my growing repitiour seems like poor comfort.

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    Community Voices

    To Take Or Not Take? My Journey with Prescription Drugs.

    Before I begin this story I should label any of

    my comments about named prescription drugs as purely subjective and reflective

    of my own personal experience. They are not a substitute for qualified medical

    advice. Always seek the advice of your medical practioner.

    I stood outside the pharmacy on a hot summer’s

    day in London. Traffic passing noisily on the street behind me. I had in my

    hand an anti- depressant drug, a small white pill that I hoped would be the

    answer to my prayers.

    Two days before I had been diagnosed with

    #Vulvodynia; a #ChronicPain condition that meant the nerves of the vulva were

    damaged and perceiving constant pain signals. The treatment options available

    for this condition revolve around a number of therapies including tricyclic anti

    depressants. As with most chronic neuropathic pain conditions the focus was to

    alter the signals coming from the brain. I was desperate for some relief, so I

    swallowed the little white pill in haste. I prayed to every god I could think

    of that it would take my pain away.

    This was the beginning of a love hate

    relationship with prescription medication. At the beginning of this journey the

    strongest prescription medication I had taken was codeine. I had never believed

    I would be in a position where I would need to take strong psycho active

    drugs. I was in fact quite sceptical of their effectiveness and completely

    unaware of how they would affect my body.

    I am now over two years into my diagnosis with a

    managed condition that has been both helped and hindered through medication.

    The journey has been long and somewhat of a roller coaster.

    The first prescribed pill I took after my

    diagnosis was Amitriptyline; a tricyclic anti depressant often used for

    neuropathic pain such as Vulvodynia. It alters how serotonin is reabsorbed and

    therefore affects how pain messages are sent from the brain. It does not work

    overnight and took over a month to have a significant affect on my body. A

    month into this drug as the burning pain started to subside; I also started to

    feel some interesting side effects. The usual Amtriptyline side effects range

    from a dry mouth and constipation to extreme tiredness. At a relatively low

    dose I was virtually (not literally) comatosed a couple of hours after taking

    the drug. As I was advised to increase my dosage to gain more therapeutic

    effects, I found that once I had taken the drug I would pass out. This would

    happen on sofas, on my boyfriend’s shoulder (drooling appropriately) and even

    in a nightclub. However, the most dramatic side effect was the psychological

    feeling of being depressed and bleaker than I had ever felt before. It was at

    this point that I questioned whether I could continue to take this drug.

    However, thanks to helpful advice and support

    from my family and some friends, I continued with this treatment. Amtriptyline

    did begin to offer me a degree of comfort with the side effects lessening, but

    after an infection and subsequent pain flare, I was advised to increase my

    dosage and to begin combining Amtriptyline with Gabapentin. Gabapentin is an

    anti- convulsant and used to treat both #Epilepsy and neuropathic pain. Drug

    therapy often combines two different agents in order to target the different

    pain messages that may be sent from the brain. Gabapentin is an effective agent

    but does come with a wide list of side effects; tiredness, blurry vision,

    trouble speaking and dizziness. For me a lack of coordination was a difficult

    side effect. I am a relatively clumsy and uncoordinated person but whilst on

    Gabapentin and Amtriptyline, I fell over quite spectacularly on two occasions

    on opposite knees leaving two matching scars (not in anyway alcohol

    related).

    Despite the side effects, this combination of

    drugs worked for almost six months. Sadly I started to develop new symptoms

    that didn’t fit the typical diagnostic definition of Vulvodynia. I started to

    come off my drugs believing they may have contributed to this new set of

    symptoms. I was then treated to the withdrawal effects from Amitrityline and

    Gabapentin. Tremors, tiredness to the point where I fell asleep in a work

    meeting, nausea and again a #Depression that was worsened by an increase of my

    symptoms.

    I was now off drugs, trying to pretend I was

    feeling better and actually feeling worse than I had been at the beginning of

    my diagnosis. Thanks to a new more specific diagnosis of Dysesthetic

    Vulvodynia, that explained my new symptoms (with a similar etiology as my

    previous condition), I was prescribed another type of tricyclic anti

    depressant; Doxepin. Unfortunately Doxepin had little therapeutic effect but an

    even stronger effect on my mental well being than Amtriptyline. Uncontrollable

    crying, a severe depression and the feeling I could travel this road no longer,

    led me to seek the help of a previous Doctor and pain specialist. He had

    offered frank and measured advice on medication previously. In this instance,

    he advised me to stop taking Doxepin (in his opinion useless) and begin on a

    combination of Pregablin (another anti convulsant) and Duloxetine (another anti

    – depressant).

    Sitting outside the pharmacy after fulfilling my

    prescription and looking at my large and pricey bag of pharmaceuticals, I

    questioned quite seriously whether I should take on his suggestions.

    I decided

    to take them.

    Prescription drugs, particularly psycho active

    drugs like Amitriptyline, Doxepin and Duloxetine are used very commonly. At

    this point in my journey, I had to weigh up the pros and cons and research how

    I may react to the drugs. Having had life affecting side effects on previous

    occasions, I was very reticent. It was, however, the perception of those around

    me regarding anti depressants and what are soon to become controlled substances

    (gabapentinoids) that felt like an additional blow.  It had become more and more apparent that

    strong pain medication and psycho active drugs were viewed with great

    suspicion and even derision.

    A stigma surrounds their use that seems to be

    born from hearsay, ignorance and inflammatory press coverage. On mentioning my

    use of anti depressants there often followed a quietening, as if it was an

    action that I should be ashamed of. When at my most depressed, well meaning

    questions as to why I continued to take the drugs that caused such dark days,

    were at best unhelpful and at worst hurtful. There was often surprise that

    Gabapentin could of caused such a dramatic change in my body shape (it creates

    a substance called prolactin which increases your breast size and helpfully

    makes you put on weight). And more often there was (somewhat understandably) a

    confusion as to why an anti depressant would cause depression (it creates an

    imbalance in the brain when going on and coming off the drug that has dramatic

    effects on your mood for some individuals).

    I felt and still do, that I needed to defend my

    decision. It was not an easy one.

    My condition is managed through drug therapy and

    a combination of an anti convulsant and a serotonin and norepinephrine reuptake

    inhibitor (SNRI class of anti depressant). I mostly have good days but there

    are a number of side effects that must be lived with: I have hyper hydrosis; so

    sweat rather consistently, I have put on more weight than I would like and

    struggle with anorgasmia (I shall leave you to look that up in the dictionary).

    There is also the baby question as the drugs I am on make children an

    impossibility unless I wish to come off them. However, I can live my life with

    symptoms and side effects that are minimal. This is a small miracle for me and

    I know so much easier than most.

    Prescription drugs are often the only choice for

    treatment for so many conditions. The decision to take to a psycho active

    prescription drug can be agonizing but the alternative can be even more

    painful. It is a juggling act that deserves to be made without judgement. The

    decision is hard enough.

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    When Chronic Pain Wreaks Havoc on Your Mental Health, and Ho

    According to the Centers for Disease Control and Prevention reports, almost 21% of Americans suffer from #ChronicPain, with 8% suffering from high-impact chronic pain (Dahlhamer et al., 2018). Higher prevalence rates are reported among women, older adults, adults currently unemployed or living in poverty, rural residents, and adults who receive public health insurance (Dahlhamer et al., 2018). These statistics are the results of an analysis of the 2016 National Health Interview Survey performed by the CDC, and it is safe to assume these percentages have only increased over the past two years.

    I am one of the 20% of Americans who suffer from chronic pain and illness. My journey with chronic pain began almost one year ago, when I was diagnosed with both pelvic floor dysfunction and #Vulvodynia, which together cause pain, burning, and irritation in my pelvic region and vagina and can make me feel like I need to pee every two seconds. Not fun. They are also both considered to be chronic and incurable. I have been fortunate to find an amazing specialist who has helped me get to the point where my symptoms no longer dictate my life, but getting to this point has been a struggle, to say the least, and living with chronic illnesses and pain have completely changed how I view myself and my life.

    After my symptoms abruptly started in the fall of 2017, I experienced the worst two months of my life. Not only was I in so much pain and discomfort that I could not even get out of bed some days, but I was mentally out of control. I spent those two months going from doctor to doctor, being told there was nothing wrong with me and that I was essentially making up my symptoms. I was constantly anxious, terrified, and depressed, to the point where I began to question if my life was worth living anymore. After doing my own research and finding a specialist, I was finally diagnosed and my symptoms slowly began to improve with treatment. Although receiving validation that there was something legitimately wrong and my symptoms were not all in my head was helpful, I noticed I still struggled with severe #Anxiety surrounding my diagnosis. I was still constantly on edge and highly emotional. I continuously worried my symptoms would return, possibly worse than before, and any slight flare (which is extremely common in chronic illnesses) sent me spiraling. Even though I found a doctor who was helping me, I still felt completely alone and isolated by my anxiety surrounding my illnesses. It took me months to finally take action and speak up about my anxiety, and I wish I would have done so sooner. I was able to talk to my specialist, who assured me many of her patients dealing with chronic pain and illness also deal with and #Depression as a result, and found a therapist who helped me to accept that it was ok for me to feel anxious, but that I should not let that cloud my progress.

    A year into my journey, I am still blown away by how little both chronic pain and illness and the #MentalHealth issues that commonly accompany them are discussed. These are real issues that millions of people struggle through every day, with very little support and resources. Although I hope for these issues to become a larger national discussion in the years to come, here are some things that have helped me navigate life with chronic pain and illness:

    1) Ask for help: This is something I wish I would have done earlier than I did. Speak up if doctors are not taking your symptoms seriously, and don’t be afraid to do your own research to find a specialist who can help you. Become your own advocate.

    2) Let yourself cry if you need to: Living with chronic pain is not easy, and you don’t have to keep it together all the time. There are times to be strong, but other times you may want to cry and be angry, and that’s ok.

    3) Be patient: As with most chronic illnesses, symptom flares will happen. You may be feeling great for a stretch, and seemingly out of nowhere have your symptoms flare up. It can also take some time to be diagnosed and find treatment options that help to reduce symptoms.

    4) Get creative with healthcare: Helpful treatment options can come in a variety of different forms, such as prescription medications, physical therapy, medical marijuana or CBD oil, stretches and exercises, etc. One size does not fit all when it comes to chronic pain management.

    5) Practice self-care: This can be a struggle, but it proves so important when dealing with chronic pain! Self-care looks different for everyone, so whether taking five minutes of your day to stretch or scheduling a massage helps you to feel better, strive to incorporate your version of self-care into your routine as much as you can.

    Community Voices

    I have had localized vulvular pain around my vaginal opening for as long as I can remember. I am starting physical therapy for it soon, but of course I have anxiety about it. I can insert a tampon and my finger with pain, but I can’t imagine anything more than that. Anyone have experience with pelvic floor pt?

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