“It’s still very taboo”: How medical cannabis helps relieve the pain of vulvodynia

Freya was diagnosed with the debilitating gynecological condition, vulvodynia, aged 20, she explains how cannabis has helped relieve some of the symptoms and why she felt let down by conventional medicine.

Vulvodynia is persistent, unexplained pain in the vulva – the female genital area including the skin surrounding the opening of the vagina.

This condition can affect women of all ages and is often a long-term problem that’s very distressing to live with.

What are the symptoms?

The main symptom is persistent pain in and around the vulva and vagina. The vulva usually looks normal and the pain can arise in a variety of forms:

• burning, stinging, throbbing or sore genital area
• it can be triggered by touch, such as during sex or when inserting a tampon
• it can be constantly in the background
• it can get worse when sitting down
• it can be limited to part of the vulva, such as the opening of the vagina
• it can be more widespread – sometimes it can spread over the whole genital area and the anus.

Having persistent vulval pain can affect relationships, reduce sex drive, and cause low mood and depression. It can be emotionally extremely distressing and have profound effects upon the patient’s sex life. There is also a huge stigma around this type of condition with women being frequently embarrassed to talk about it or seek help. 

What treatment options are available?

Vulvodynia is unlikely to get better on its own and some of the treatments are only available on prescription and may not have the desired effect long term.

Lifestyle changes may help reduce symptoms such as only wearing cotton underwear, using lubricants before attempting sex, cool packs to sooth the pain of the vulva and sitting on a donut shaped cushion. 

A combination of treatments can often help relieve the symptoms and reduce its impact on your life.

Conventional painkillers, such as paracetamol, will not usually relieve the pain. Doctors may prescribe antidepressants such as amitriptyline and nortriptyline, which can have unpleasant side effects including drowsiness, weight gain and dry mouth.

Sometimes anti-epilepsy medicines such as gabapentin and pregabalin are prescribed but again these can cause horrible side effects including dizziness, drowsiness and weight gain. If you have pain in a specific area of your vulva, injections of local anaesthetic and steroids into a nearby nerve may provide temporary pain relief. Physiotherapy and counselling can also both be useful in a patient’s overall treatment plan.

But even with all of the above intervention, sometimes the condition continues to devastate the patient’s life.

Can medical cannabis help?

There is an increasing body of evidence which suggests that cannabis-based medicines can be helpful for certain women in the treatment of vulvodynia and other gynaecological pain-related conditions such as endometriosis, if patients feel that standard pain medicines are no longer working or providing relief. 

Sophie Hayes, specialist practise nurse at Integro Clinics, says: “Cannabis medicines can be helpful in the management of vulvodynia, particularly in relaxing the muscles of the vagina during intercourse and if used before and after. They can also be helpful in relieving vulva pain as the THC is an effective neuropathic pain killer.”

The patient’s story

Freya is a dynamic and politically active woman, who has a complex range of interacting conditions including fibromyalgia and vulvodynia.

Here, she describes the physical and mental aspects of this condition, the stigma that still exists around seeking help, and the difficulties and prejudices with diagnosis.

Freya was diagnosed with vulvodynia aged 20.

At what age did vulvodynia first become an issue for you? How does it impact on your life and relationships?

I was diagnosed at 20 and at the time I was in a very violent relationship. In fact, it’s only within the last year that I was told by a specialist that this is often the trigger for a condition like mine.

Back then they didn’t know why I had it, just that I did. I was told to try a lidocaine lubricant which just numbs everything so removes the pleasure from sex – for me at least – and that was that.

Did you find medical professionals sympathetic and helpful?

No one has ever taken the time to try and help me from a medical standpoint. I did see a specialist last year who recommended dilators, but they just hurt, and I hated them. I know I should go back to trying them again, but I think the mental trauma has become so much now that I just don’t want to. Which of course is not great for my relationship. I’m stuck feeling awful and guilty and wanting it to change, but with no idea how to change it.

When you tried medical cannabis, can you describe how it was helpful for the pain you were experiencing? What conventional drugs have you tried and were there any unpleasant side effects? 

“I tried cannabis for my back pain. I had been on a cocktail of Tramadol, diazepam and codeine which had left me with terrible IBS, an addiction, and just feeling dazed and confused a lot of the time. Nothing got rid of the pain either , they just helped you not care and to relax. 

Cannabis medicines manage to help me relax when I am in pain, which in turn helps the pain reduce as you are less tense and worried. It means I can sit and chat to people without being too ‘stoned’ on something like tramadol and doesn’t cause any of the negative side effects like IBS.

When I have tried tinctures and topicals they have given me pain relief without any of the ‘stoned’ effects, so I can focus and work without issue. That’s probably the most important thing – to be able to focus and get my work done without making mistakes.  It also helps with sleep. I get terrible nightmares and sleep paralysis when I am on Tramadol which I just never get with cannabis medicines.

Why do you think talking openly and publicly about women’s pain is so important? 

Just knowing that you are not alone is so important. Women’s pain is still tied up with the old stereotype of ‘hysteria’ and women are often left to languish in pain without a diagnosis for years, which has a huge effect on your mental health, so you’re stuck in a catch-22 of being depressed because you are in pain and don’t know why, and then your depression is blamed as the cause of your pain. 

There is also a fundamental lack of joined up thinking when it comes to gynaecological symptoms with all your other symptoms, so co-morbidities are missed. I don’t know if this is just because of the spectacular lack of sex specific training that doctors go through, with the male medical body being the default body, or down to some belief that the two cannot ever be related? Or more simply – the patriarchy. 

I think we are also still shamed for talking openly about sex and our bodies as women. We don’t talk openly about periods, contraception, menopause, vulva’s. It’s still very taboo. Who sits around the table and says, ‘actually I rarely have sex as it feels like I’m being stabbed every time I do’? I remember seeing Vulvodynia represented on Sex Education on Netflix and just cheering – I had never seen that before. 

I also remember each time I had to tell a new partner about this before having sex , each time I would be so scared they would think it was a sexually transmitted infection (STI) or something. I thought they would think badly of me for having this ‘thing’ that ‘normal’ women didn’t have. And I think that goes directly back to the slut-shaming we all faced in our teenage years for daring to have sex and enjoy our bodies.”

Integro Medical Clinics Ltd always recommend remaining under the care and treatment of your GP and specialist for your condition, while using cannabis-based medicines, and the Integro clinical team would always prefer to work in collaboration with them.

If this article has been of interest, you are invited to join a free webinar on Wednesday 12 May at 7pm, exploring the role of cannabis medicines in women’s health.

Expert speakers Dr Sally Ghazaleh, Sarah Higgins CNS, women’s health lead for Cannabis Patients Advocacy and Support Services (CPASS) and endometriosis patient’s Abby Hughes and Jessica* of The Endomonologues will candidly discuss this new field of medicine.

The event is hosted by Cannabis Health, Integro Medical Clinics and CPASS, sign up for free here