Even without inflammation, fatigue, low mood, and flare-ups, quality of life can still be difficult to sustain when you live with Fibromyalgia, Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME).
Vulvodynia, a chronic pain condition that affects the vulva (i.e. exterior of the female genitalia), and is a frequent complaint among women who live with Fibromyalgia, CFS, and ME.
In this article we will discuss:
- What is vulvodynia
- Vulvodynia symptoms and subsets
- Fibromyalgia & CFS/ME Connection
- Potential causes
- Other potential conditions that contribute to vulvodynia
- How to self-manage vulvodynia
What is Vulvodynia
Firstly, it is important to understand what the vulva is…
The vulva (plural vulvas or vulvae; derived from Latin for wrapper or covering) consists of the external female sex organs.
Painful Sex Without Trauma
With no discernible cause or source of complication, vulvodynia is classified in the Patient Information Leaflet by the British Association of Dermatologists as a “complex regional pain syndrome” that causes hypersensitivity and pain without identifiable trauma to the affected area.
This mystifying condition can be difficult to manage for many women and can be just as perplexing for healthcare practitioners to treat effectively.
This can be further complicated when you already live with Fibromyalgia or CFS/ME.
Below, we’ll be discussing the symptoms of vulvodynia and its connection to pre-existing Fibromyalgia and CFS/ME, as well as some practical self-care tips to help manage vulvodynia pain and help you start feeling better!
For more information on how to successfully manage female-specific pain conditions, check out Isa Herrera’s book Ending Female Pain, A Woman’s Manual, Expanded 2nd Edition: The Ultimate Self-Help Guide for Women Suffering From Chronic Pelvic and Sexual Pain
According to the International Society for the Study of Vulvovaginal Disease, vulvodynia is best defined as “chronic vulvar discomfort, most often described as burning pain, occurring in the absence of relevant findings or a specific, clinically identifiable, neurologic disorder”.
Without an obvious cause, vulvodynia can be difficult to diagnose. Many women will be put off by the lack of a diagnosis, with many will be dismissed when no obvious cause can be found.
However, this doesn’t make the pain any less real!
The severity, location, and sensation can vary from person to person.
The pain can be constant, occasional, general, or localized. 
Often, pain associated with vulvodynia is often characterized as:
- Dyspareunia (painful intercourse)
When pain is felt in one specific area, it is known as Localised Vulvodynia. The most common subset of this diagnosis is Localised Provoked Vestibulodynia (LPV), also known as Provoked Vestibulodynia (PVD) or Vulvar Vestibulitis Syndrome (VVS).
LPV occurs when pressure is applied to the vulvar vestibule, resulting in pain. This can happen during sexual intercourse, masturbation, or when using a tampon. Tight clothing and long periods of sitting can also aggravate LPV.
A less common form of Localised Vulvodynia is Clitorodynia, a condition that causes abnormal pain in the clitoris. Its symptoms are similar to LPV and are exaggerated also by touch, pressure, movement, and tight clothing.
Let’s just say leather trousers and super tight skinny jeans are probably not the best clothing options!
Unlike Localised Vulvodynia, Generalised Vulvodynia is recognized by the distribution of pain throughout the vulvar region without a visible source of pain.
The pain must last for 3 months or more to be considered Generalised Vulvodynia.
Pain can be gradual or occur spontaneously but is generally more consistent than Localised Vulvodynia.
The good news is that there can be periods of symptom relief, however!
Typically, activities that apply or increase pressure to the vulva exaggerate this condition, and so activities such as cycling, horse-riding, or driving may be painfully compromised.
Strangely, sexual intercourse, may (or may not) be relatively pain-free for some women.
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With women accounting for roughly 85% – 90% of people living with Fibromyalgia, it’s no stretch of the imagination to see its connection with gynecological comorbidities.
A 2013 study published in the Journal of Pain Research looked at 1,473 women diagnosed with vulvar pain. The study sought to analyze the pattern of comorbid pain clustering in a population-based sample of women who self-reported localized vulvodynia, generalized vulvodynia, or both.
The study found that Fibromyalgia, Irritable Bowel Syndrome, and Temporomandibular Muscle and Joint Disorder were the most common pain conditions comorbid with vulvodynia. This pain clustering was most prevalent in women who had self-reported both localized and generalized vulvic pain.
These findings are consistent with an earlier case-control study conducted by Arnold et.al., in which “[a]ge-adjusted odds ratios indicated that fibromyalgia and irritable bowel syndrome were significantly associated with vulvodynia”.
Similar interconnected pathologies have also been recognized in patients with CFS/ME (6).
Check out the book Vulvodynia: A Survivor’s Guide which offers non-invasive, self-help solutions that have been proven clinically effective.
Around 6 million women suffer from vulvodynia in the U.S, making it a distressing condition for many women, however, there isn’t a lot of research on this condition.
But what do we actually know about it?
One study suggests that there is a linked between yeast infections and chronic pain.
Vulvar allodynia (feeling pain from something that shouldn’t feel painful), can be provoked by touch or without it. Allodynia is also a common co-existing condition of fibromyalgia and CFS/ME, too.
Vulvodynia – a Neuropathic Disorder?
Although not much is known about vulvodynia, according to the Vulvar Pain Society, specialists believe it to be a neuropathic disorder that derives from hypersensitive nerve fibers in the vulvar region. This can give off abnormal fiber pain signals that produce pain.
Think of shingles and phantom limb syndrome – different though they may be, they’re both neuropathic disorders!
Vulvodynia may be idiopathic (without a known cause), but there are some other conditions out there that increase your risk of developing it, such as:
- Chronic yeast/thrush infections (Aka candida) – Many women with fibromyalgia and CFS/ME have an underlying candida infection. A 2013 study has correlated vulvar inflammation promoting yeast infections.
- Sexual trauma – It is thought that psychological stress may directly impact vulvar inflammatory response mechanisms, as this study suggests.
- Vaginal dryness – sex without lubrication can lead to tears. It is more likely to affect menopausal or post-menopausal women. Water-based lubricants can reduce injury and maximize personal pleasure, too!
- Childbirth – Vaginal injuries can significantly increase injury to the vulvar region with tears and episiotomies, which can lead to potential chronic and neuropathic vulvic pain.
Other potential conditions that contribute to vulvodynia include:
- A genetic predisposition to chronic pain
- Having a higher number of pain-sensing nerve fibres in the vulva
- Spinal nerve compression
- Pelvic weakness or instability.
Perineal thermal packs are specifically designed to care for the most delicate part of your body. The Newgo Perineal Pack (2 in package), can be warmed up or put in the freezer and have 4 sleeves to help reduce pain and inflamation.
Although there is no easy solution for resolving vulvodynia, there are some things you can do yourself to help lessen symptoms and prevent further irritation.
- Always use unscented toilet roll
- Pee before your bladder needs to burst
- Rise your vulva when urinating to help relieve burning
- Avoid bubble baths and feminine hygiene products
- Ditch the perfumed creams and soap
- Try not to get soap or shampoo down there
- Don’t use hot water on your vulva – only cool or lukewarm!
- Try a cool sitz bath
- Replace regular sanitary products with 100% cotton menstrual pads or tampons, use an eco-friendly menstrual cup or soft, washable and reusable bamboo pads with charcoal liners
- Avoid chlorinated pools and hot tubs
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- Wear lose fitting clothing
- Go for cotton underwear instead of polyester or nylon
- Avoid pantyhose and tight clothes like the plague!
- Promptly remove wet or saturated clothing
- Change out of gym gear as soon as possible
- Do not use fabric softener on underwear
- Always use unscented and hypoallergenic detergent
We love (and have been using for 5 years) the EcoEgg Laundry Egg it lasts for 720 washes, is hypoallergenic, eco-friendly, and it works! Plus fantastic cost-savings, too!
- Always use water-based lubricant (as discussed above)
- Avoid contraception cream at all costs
- Choose spermicide free condoms
- Apply an icepack or thermal pad if you’re sore after intercourse
- Don’t forget to pee after sex to wash away residual substances!
Speaking of sex, check out our article on the Top 8 Tips for Sex with Fibromyalgia, CFS/ME.
Everyday Physical Activity
- Avoid exercises which increase pressure on the vulvar region – cycling and horse-riding especially!
- Mitigate long periods of sitting with standing or light movement
Unlike other sources of vulvar pain, vulvodynia is not sexually transmitted. This means you can’t receive it from or transmit it to your sexual partners.
However, it’s always a good idea to get screened for STIs to rule them out as potential causes of pain.
Women’s health issues are exactly that: health issues. It’s important to go to your doctor if you see or experience any vulvar abnormalities.
Check out our article on the 6 Top Tips to Improve Your Body Positivity with Fibromyalgia, CFS/ME.
You wouldn’t avoid going to the optometrist if you had issues with your eyes, would you!? So please don’t be ashamed or embarrassed about seeking help from a medical professional
Vulvodynia is a common concern for women’s health, and another added health issue for women with Fibromyalgia, CFS, or ME where there is a connection between the two conditions.
The main thing to take away from this article is to know that you are far from being alone if you have vulvodynia and that you should talk about this condition without shame.