Natalie

@natalie-pougher | contributor
I am a Vulvodynia sufferer and have been for a relatively short amount of time. I manage my condition and I want this under recognised condition to be talked about and treated with more efficiency and sensitivity.
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.

1 person is talking about this
Community Voices

To Take Or Not To Take? #meds

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. Have you ever been judged for taking the medication prescribed to you? #meds

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Natalie

The Importance of Speaking Openly About Vulvodynia

Eighteen months after I had first been diagnosed with vulvodynia, I was satwith my legs in stirrups while yet another gynecologist examined me. Sheconfirmed that my third diagnosis of dysesthetic vulvodynia was correct andthat I was on the right trajectory to manage the condition. The sensations thatI felt ranged from small electric shocks, to stinging and unbearable itching inmy vulval skin. She explained how “the nerves can misfire and make newpathways. As the pain travels down this pathway more each day, it becomesdeeper and more embedded: a well trodden path.” This remains the most useful description of chronic pain that I have heardof. It seemed from my many doctor appointments and fevered research that themedical fraternity could not accurately identify why this had happened, but themetaphor served as a simple way of explaining the unfortunate changes in mybody. I had been diagnosed with chronic vulval pain (or vulvodynia) after aprolonged thrush infection combined with a severe bladder infection. Thedelicate tissues of my vulva recovered but the nerves had been altered causingsymptoms that ranged from constant burning to intractable itching. The newpathways in my brain were winding and unpredictable. The jumping around of symptoms has thoroughly confused me, my doctors andthose around me who have witnessed this journey. My symptoms at first including vulval burning combined with bladder pain had been successfully treated at one point, only to transform and become a bed of stinging nettles in my knickers. I had received two further diagnoses followed by a re-diagnosis of dysesthetic vulvodynia. Dysesthetic vulvodynia is a form of vulval pain that creates dysesthesia: an unpleasant nerve sensation. It is certainly not life-threatening (for which I am extremely thankful) but it has impacted every aspect of my life. I have walked, with varying degrees of discomfort, many different routes to try and find an answer to this problem. These strange new pathways still exist in my brain but thankfully drug therapy keeps the trodden paths slightly overgrown, with fewer nasty flashes of pain and discomfort joining along for the journey. The greatest challenges have been unexpected and certainly less physical:the impact on my emotional and mental well-being was at worst life-altering andat best destablizing; my relationships were tested with an invisible illnessthat can be difficult to comprehend and my sex life was under threat. At first I did not cope with the news that I had vulvodynia well. Uncontrollable crying and a sense that my world was coming to an end seemed a fair representation of my feelings. The stories that I read on the internet were so negative and sadly only a small proportion of the doctors that I had seen were positive in their outlook. My mental health suffered as a result of the negativity and unhelpful attitude of some medical practitioners. My savior has been a good counselor. Therapy and being able to unpick how I feel about my new condition and how to manage it was invaluable. As my mood has changed with my physical symptoms and drug therapy, I have not always been able to be a good friend, a great colleague or a good girlfriend. Certainly at the beginning of my illness when I was contemplating how this would impact my life, there were continual waves of anger and bitterness. However, talking openly about vulvodynia, an illness that can affect 16 percent of women but that so few people speak openly about, and finding my voice enabled me to see a way forward: a way that would help me to explain my journey to those around me. Relationships can be tested as you change and struggle as a result of an invisible illness, especially one that affects you on so many levels. At times I have weighed too heavily on those closest to me and had to step away from some situations that were too stressful, stress being a large contributory factor in vulvodynia symptoms. However, talking and writing about vulvodynia has helped to explain what it feels like and what impact it has to the uninitiated. I hope it can bring a message of thanks to those closest to me for their understanding and patience. Finding your voice in the face of an invisible illness and being able tobring images like the “well trodden path” into an arena outside of the clinicaltreatment room can (I truly hope) bring a message to the newly diagnosed thatyou can overcome, you can cope and you can thrive.

Natalie

What I’ve Learned Since My Diagnosis of Vulvodynia

After being diagnosed with vulvodynia I discovered that there were limited stories that were positive or helpful on the internet. The advice for women with the condition was scant and did not address the true nature of the condition – both it’s variability and the impact on those dealing with this on a daily basis. I decided to write a letter to those that were newly diagnosed that would hopefully address, with some humor and positivity, the reality of treatment and how determined you will need to be. 1. It is more common than you think. “Vulvodynia is persistent, unexplained pain in the vulva (the skin surrounding the entrance to the vagina).” The symptoms vary from itching, burning to rawness and irritation in the vulval region. There are different subsets and every woman experiences different degrees of pain and discomfort. The origin and cause of this condition is multifactorial and hugely misunderstood. A lack of research funding has left vulvodynia as an underrepresented and underreported illness. However, it is much more common than you think. It is estimated that approximately 15 percent of women will struggle with chronic vulvar pain at some point in their lives. Statistics are probably much higher as it is so often misdiagnosed and women can go many years without a diagnosis. Once I was diagnosed I began to realize that it was the condition that was always a few degrees of separation from the woman I spoke to; it was a condition that the friend of friend or an aunt or grandmother had experienced and struggled with – but their struggle had largely remained silent. 2. Vulvas are not a topic of polite conversation. My diagnosis, like many woman with this condition, has not been lineal and the symptoms have changed throughout my year and half into this journey. Like it is for many Mighty contributors, the curse of an invisible illness is that it can be difficult to explain and hard to persuade (on some occasions) that you are actually ill or struggling. This is especially difficult when your condition affects your genitals. Vulvas do not seem to be a topic of polite conversation. It has been difficult to express that my pain and discomfort affects a deeply private part of myself. However, this should not affect your ability to share in your experience and voice your distress. Sadly there have been times when my condition has been looked on with derision, great misunderstanding and flippancy. However, I would urge any newly diagnosed woman to speak out and not to be afraid or embarrassed to speak to friends, colleagues and importantly to speak openly to your partner and your doctors. Just because this condition affects your vulva, there is no reason you should not seek the same support that other people with chronic illnesses do. 3. Persistence is essential in finding treatment. Though out my vulvodynia journey I have seen four gynecologists, a vulvologist, a specialist physiotherapist, a clinical psychologist, a pain specialist, a vulval dermatologist, and two standard dermatologists, an acupuncturist, a Chinese herbalist, a nutritionist and numerous general practitioners. In the early stages of diagnosis there were some moments of sheer hilarity and intense cruelty. I have learnt that vulvodynia is not always studied by health practitioners and that its impact on everyday life is often misunderstood. It has helped to be well informed prior to appointments and it is important to be persistent in finding a team of people who are willing to help on what can be a complicated and long journey back to health. I am so grateful to the sensitivity and care shown by my physical therapist when discussing great intimate issues whilst sitting on a table with my legs spread ready for another examination. I am grateful for my male acupuncturist allowing me to discuss intimate issues prior to each session and listening with great aplomb; never fazed by discussing a very female problem. Lastly, I am grateful to the pain specialist for underlining that with each failed treatment we would try something new. Keep fighting to find people who will help, they are out there. 4. Chronic illness can be a lonely place. The symptoms of vulvodynia, in my case, have changed and fluctuated. This has greatly confused me and those looking into my medical care. Vulvodynia covers such a wide range of symptoms with differing causes (in my case neuropathic) that can range from irritating on a daily basis to completely debilitating. I’ve struggled with burning to intractable itching, while I try to retain a sense of normality each day. However, it is not the vulvodynia that has been the greatest challenge. As the fear of pain and discomfort becomes mixed and diluted with the side effects from drug therapy, you begin to step back from your life. Spending time with friends becomes harder as you grasp at the version of yourself that existed before this condition. It becomes a lonely place. Your mind has been hijacked by the experience and fear of pain. It can be difficult to remain present in moments in your life and I have felt myself slowly slip into depression. However, seeking support from family, some empathetic friends and a good counsellor has been essential. Knowing there are positive stories (there are some) and focusing on the words of advice from some caring health practitioners has made a difference. It is possible to see a way forward and you do not have to take that journey alone. The internet can be a great friend and your greatest foe. Whilst at my lowest and loneliness I have stumbled across unhelpful advice from many medical advisors and health websites that publish depressing statistics and scant treatment advice. These are made emphatically worse by the stories from woman online that seem to speak of decades of pain. At this point vulvodynia has seemed like an insurmountable challenge that would take over my life. However, it has been possible to find indispensable advice and a multitude of treatment options that have allowed me to be better informed and able to seek out possible alternative treatment options. It is possible to use the internet as a tool in the fight against vulvodynia and to find the knowledge you need to be your own advocate in your healthcare. Not every story is negative and this can be strengthened in the advice from some specialist experts that vulvodynia will not be lifelong. 5. Wearing pants is overrated. After my second diagnosis of dysesthetic vulvodynia and having used powerful steroid ointment for a nonexistent skin condition that was misdiagnosed, my nerves were so irritated it was too uncomfortable to bear underwear. I spent a whole summer in loose trousers and long skirts without pants. I felt embarrassed at first but I have come to realize that in order to do this dance with vulvodynia, you have to make adjustments that will seem unnatural at first. However, adjustments may be temporary and your pain and discomfort will wax and wane. If something as simple as not wearing underwear will save you a degree of discomfort, then so be it. Wearing pants is overrated anyway and allowing yourself to smile about the ridiculous nature of vulvodynia will sustain you in the darkest of moments. I am lucky that I have partner who makes me laugh and allows me to cry and smile whilst on this journey. I am still learning how to deal with this condition, which for me involves being a human gum ball machine and trying out a multitude of drug therapies to try and correct the nerve damage. I am ever hopeful that eventually I can be comfortable every day and overcome this condition, but I can see that this journey will be winding and long. I won’t give up, and that is the greatest piece of advice I can give to any struggling with this condition: Do not give up. We want to hear your story. Become a Mighty contributor here . Gettyimage by: Dreya Novak