Vulvodynia

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    Pelvic floor physiotherapy changed my sex life

    I can sometimes have penetrative sex without pain now! I couldn’t ever before. It’s thanks to pelvic floor physiotherapy. The internal massage makes it possible. After sessions with the physio, I’ve bought a pelvic floor wand and can do release work myself. 60% improvement since when I was untreated. Find one you trust and who takes it very slowly.

    #sexlife #Vulvodynia #painduringsex #vaginismus #pelvicfloor #tightpelvicfloor #pelvicfloorphysio #pelvicfloorphysiotherapy #pelvicfloorwand

    Post

    Just joined the app

    Just joined the app to hear and share stories of endometriosis, chronic migraine, vulvodynia and hidradenitis suppurativa. Looking forward to it!

    #Endo #endometriosis #chronicmigraine #Vulvodynia #HS #HidradenitisSuppurativa #Migraine #Headache

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    #ic #Fibromyalgia #Vulvodynia

    Healing to all

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    Digging into the connection between POTS and Pelvic Venous Insufficiency

    I’ve had POTS for 3.0.0.5 years now… along with hEDS, Endometriosis, Narcolepsy, Factor V, and Homocystinuria. I had a full hysterectomy due to endometriosis/adenomyosis and thought the constant severe pelvic pain was a thing of the past. Unfortunately, my symptoms were exactly the same post hysterectomy. I researched for years for anything that could explain my POTS, other than just “lote of people with EDS have it”. Then a few months ago I stumbled upon Pelvic Congestion Syndrome, aka Pelvic Venous Insufficiency, and I broke down in tears reading the symptoms.
    Chronic/persistent, severe (5-8/10) abdominal/pelvic pain
    Pain after sex
    Pain that is worse after sitting/standing for a long time
    Migraines
    Dysautonomia/POTS symptoms
    Bladder pain
    IBS like symptoms
    Fibromyalgia
    Vulvodynia, varicose veins in the genital area and thighs
    The list goes on.

    No doctor from any specialty was able to tell me what this was or offer it as an explanation to the myriad of debilitating symptoms I had. I was so desperate for answers that I found the only vascular surgeon in my area, got a referral and got him to order me a CT scan of my veins. I had areas near my kidneys of expanded veins extremely suspicious for Pelvic Congestion. In 1-2 weeks I go see another Vein specialist to get a venogram done, then if needed, schedule embolization of whatever problem veins are causing this.

    What triggered this? For me, pregnancies. The more pregnancies, the more at risk you are. However it can and does happen in those who have not been pregnant along with Nutcracker Syndrome (NCS) and May Thurner Syndrome (MTS). It is believed that it is responsible for 40-60% of ALL chronic pelvic pain! It also exists in men as an issue with iliac veins (MTS). It can cause SEVERE abdominal pain that seemingly has no other cause. Doctors will not always advocate for you or give you answers as I am sure we all know by now, so please advocate for yourself! If any of this sounds familiar to you, I urge you to find a specialist that is knowledgeable on Pelvic Congestion/Pelvic Venous Insufficiency. There is a chance you can walk away from a minimally invasive procedure 80% better. And that’s something, to me, worth sharing with any person suffering from POTS.
    #PosturalOrthostaticTachycardiaSyndrome #PelvicCongestionSyndrome #pelvicvenousinsufficiency #Chronicpelvicpain

    Post

    #Vulvodynia

    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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    Chronic pain #

    I’m tired of crying... who would love me with all my limitations. I feel broken. #Vulvodynia #chronickneepain #ChronicJawPain #unloveable

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    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

    Post

    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.

    Post

    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.