About Positivity

Hi, Laura here. Things have been pretty silent over on the blog for a few months so I apologise for not sharing the usual thoughts, news and anecdotes that you may have come accustomed to from Faith. I have had in my mind that I want this site to stay very upbeat and positive, yet I hadn't been feeling so upbeat in myself lately and so I had distanced myself.

Despite this though, I have been very aware that only allowing ourselves to be upbeat and positive all the time is only allowing a part of ourselves to be present. We are humans and must allow ourselves to feel the full range of human emotions. If we don't then this can stagnate within us, causing tension and even lead to chronic pain. Our bodies will find ways to communicate with us and sometimes that is through pain.

While I am fully hopeful of a complete cure from long term vulva pain, I am not yet cured.

I posted a while ago listing all sorts of medical (both western and eastern) treatments and practitioners that I have seen. It is usually met with a sympathetic lack of understanding and various ideas, but I am still here today, in pain. After many years of searching for an answer outside of me, I have come to believe that the answer is actually not an external thing.

So I have been exploring mind-body tools, looking into my past and learning to listen to my body. Expect more posts on this to come.

Things I haven't tried so far (Laura)

Following my earlier post listing everything I've tried in order to heal, I am aware that while this is a very long list (!), it doesn't cover everything out there. I think the more you explore, the more you find to potentially try, which is a great thing and this has taken me on an inspiring journey along the way. However, there are some more obvious things for v pain which are distinctly missing from my earlier list and I'll explain below why they are not on there:

Low Oxalate Diet

This is a diet that eliminates, or vastly reduces, oxalates in the diet, with the thought that when we eliminate said oxalates through urination, they irritate the vulva area. I read a whole book on this then decided that it didn't resonate with me. I don't have pain on urination and most of the foods it tells you to eliminate are healthy foods and I didn't want to compromise the rest of my health.

Botox Injections to Numb the Nerves in the Area

I wondered about this but:

a) it only lasts a few months before you need the injections again

b) it is a cover up, not getting to the route of the problem 

c) I discussed it with my physio who was highly alarmed! She said it totally contradicted what she was doing with me and that I cannot work with the muscles to heal if I am consciously numbing them at the same time! Fair point 

Surgery to Remove the Painful Area(s)

Gulp.

Again, this will often be carried out without knowing what caused the pain in the first place, meaning that the cause could still be there.

I have read mixed reports on success rates but it looks to be in the region of ~20% chance of improvement (and even lower chance of a complete cure) and ~50% chance that it will get worse. Not great at all.

I did ask my gynaecologist about this years ago and he immediately advised against it as it is very disfiguring and doesn't have good success rates.

 

I'd be interested to know if any of you have had any success (or disappointments) with any of these treatments. If so, get in touch!

Things I've Tried So Far (Laura)

It hasn't been long since I started writing for this blog so I thought it would be worth just listing everything I've tried so far in efforts to eliminate my vulva pain to give a bit of a background and in case this is helpful to anyone.

So, here goes:

Steroids

  • Trimovate (steroid cream)
  • Dermovate (steroid cream)
  • Eumovate (steroid cream)
  • Steroid injections

Other Drugs

  • Benedryl
  • Vagisil
  • Course of ibuprofen for 2 weeks to reduce inflammation

Supplements

  • Probiotics
  • Vitamin D
  • Vitamin B12
  • Calcium
  • Chlorella
  • Spirulina
  • Multivitamin
  • Iron

Dietary Changes

  • Drinking cranberry juice
  • Went vegan (I didn’t do this for vulva pain but a change that is worth noting, and I feel healthier generally, but it hasn’t changed this pain)

Tri-cyclic Antidepressants

  • Amitriptyline 10mg/20mg
  • Gabapentin

Complementary Therapies

  • Acupuncture
  • Chinese herbs (various, inc Xiao Feng San)
  • Homeopathy
  • Taking CBD oil in water

Other Topical Treatments

  • Estriol cream
  • Lidocaine (anaesthetic gel)
  • Applying coconut oil
  • Applying aloe vera

Investigative Tests

  • 2X Biopsies (results both times were “chronic inflammation”)
  • Anaesthetic injections as part of biopsies

Exercises

  • Physiotherapy
  • Pelvic floor exercises
  • Yoga

Mind Therapies

  • Three months with a psychosexual counsellor
  • Somatic experiencing
  • A week long deep healing retreat
  • A 5 month sensual mastery course including 1:1 mind and bodywork sessions

People I've seen:

  • Vulvar dermatologist X2
  • Sexual health clinic
  • GP
  • Gynaecologists
  • Acupuncturists X4
  • Chinese herbal medicine practitioners
  • Energy healer
  • Somatic experiencing therapist
  • Homeopath
  • Psychosexual counsellor
  • Physiotherapist
  • Chiropractor

 

Probably others that I’ve forgotten as well. Phew, a lot!

From this list, I am lucky that none of the above made my symptoms worse. And along the way, even though I have spent a lot of time, effort and money, I have gainedhugely in other ways, even though my pain is still there.

Mostly the things above didn’t make any difference to my pain apart from:

  • The trimovate cream (steroid) that I used for about 4 months twice a day back in 2008which really brought the pain down a lot. My pain used to be much much worse. After a while, the benefits plateaued and I am still now at the lower levels of pain that this cream got me to but I haven't been able to get any further. I have tried this again after a break and other steroid creams since but none of them have made any difference again. I know that many women have had some awful side effects of using steroid creams vulvo-vaginally, so this is not a recommendation in any way, just my own experience – I will be forever grateful for this cream.

  • The estriol cream (a mild hormone cream) applied locally once a day for a few weeks brought my pain down very slightly I think.

  • Physiotherapy and pelvic floor exercises have released tight muscles and made me stronger, although the pain is still the same.

  • The retreat and sensual mastery course have educated me so much, given me an inner strength and opened my eyes to a lot and I will always carry this with me.

So that’s where I’m at.

'Til next time...

Healing from shame

At the age of 33, I have never had sex without being in pain. Through a very long and drawn out course of well over a decade of seeking answers and a cure, I have been diagnosed with vulvar vestibulodynia (a subset of vulvodynia, also known as vestibulitis) and vulvar dermatitis. The latter is linked closely to my overall tendency towards dry skin and eczema although on examination, I look healthy.

Naturally this has greatly affected my relationships and led to me generally staying single so as not to be in pain. I was so embarrassed at the thought of telling a boyfriend or anyone for that matter, that I largely suffered in silence, ashamed of this mystery illness that I appeared to have developed for no obvious reason. Doctors were telling me there's nothing wrong with me and that it's "just psychological" yet my body was screaming out in pain. For a really long time, I couldn't talk about it without crying and I spent so much energy on hiding it from anyone and everyone, even those closest to me. My absolute worst nightmare was someone finding out. I have spent many years trying different healing modalities from west to east which, while teaching me a lot along the way, have, for the most part, not made a difference to my vulva pain.

It was mid-2014 when I decided that if I can't cure the physical pain, I can at least work towards losing the shame I feel surrounding it all. Which had arguably been the worst part for me. If I had the same pain but in my arm say, my life so far would have been a lot easier!

So I have embarked on a journey. I spent 3 months with a psychotherapist. At that point I was working 12-15 hour days in a very stressful job which I was not sad to leave on having saved up just enough money to take two months out to travel and essentially, rejuvenate. This gave me a lot of time to think and in November 2014, I wound up in Bali where I stumbled across Sacred Wellness Institute, the most amazing, life changing retreat week of healing that I joined alongside four other women facing other life challenges. No one else there had vulva pain but I was given the space and understanding to share which I found so hard but knew it was what I was there for. I finally told my family who were very supportive. I was nurtured and told by various practitioners there that I was holding a lot of pent up tension in my lower chakras.

Bali was a mind blowing experience and I was floating on air for months! Since then I have got a new job with more respectable hours, spent a lot of time watching TED talks and documentaries, reading books and articles, all on vulnerability and wellness in general. 

Don't get me wrong, I still have a lot to work on but I now don't get upset when I talk about my vulva pain. Rather, I can just be quite matter of fact. I have a wider support group of people closest to me that I can talk to. These parts of our bodies embody the power of recreation. They are the essence of our femininity which is a beautiful thing. None of us have anything to be ashamed of. 

What I really realise now from all my deep delving is that the shame I've felt around that area of my body and my sexuality has actually been a big cause of all my pain. A huge breakthrough! Every time I used to wince at the thought of my pain or thinking about trying to have a relationship right from early teen years, I was unknowingly tensing even tighter. I am now seeing a brilliant physiotherapist who is working internally to release this tension and retrain the muscles. It is very slowly working. Meanwhile, I now realise that as a stubborn and chronic condition, I cannot only try to heal with external things. It must come from within.

In the words of Dr Lissa Rankin:

"When we focus only on strictly physical and biochemical diagnoses and treatments, we miss a potent opportunity to allow illness to serve as a vehicle for personal growth and spiritual awakening".

I am now feeling more positive than ever that I am on the road to recovery. And I feel stronger and better than ever within myself. If you are in the same boat as me, what uncomfortable emotions do you have that could be stopping you from feeling as well as you deserve to feel? It's not easy but maybe this could be your answer.

Introducing New Writer Laura!

Hi there everyone! How is it halfway through the year already?? 

Way back in January I realized that it was time for me to move onto other projects, but I didn't want to let this site become a ghost site. I crossed my fingers and asked if any of you would like to step up and take over for a year. Miraculously, my shot in the dark worked!

Over the past few months the new writer and I have been corresponding back and forth across a continent and an ocean and eight time zones, figuring out the details of this transition (and completely neglecting you I'm afraid. Ha ha.)

I am so pleased to welcome LAURA as the new writer on this site! Since I live in the US and she in the UK, her presence will make this site international, which makes me really excited. I thinks it's important to note that v pain is a global issue, though as far as I know we have no statistics on whether rates vary or are similar in different regions around the world. (Research project anyone?)

In addition to writing here, Laura will be playing around with our Facebook page and our new Twitter handle, @myVmatters. If you fill out the website contact form, it will go to her.

As for me, I will still be here, writing posts occasionally. I am by no means leaving my passion for women's and holistic health behind, only exploring new avenues for them. If you are still interested in reaching me, you can do so here.

Although Laura and I have chatted about what we are doing with this site, our plans are not set in stone. We are learning (ahem, making things up) as we go.

I am so excited to read Laura's posts and see what the next year brings for My V Matters!

As always, thank you so much for coming along on this crazy ride with us...

Here's to new adventures!