Hey hey… so here we are, living in these precarious Covid-19 times. I wonder if this is what it must have been like to live through a war – apart from the incessant circulation of fake news of course. To avoid overdosing on fizzy vitamin C tablets and keep myself sane, I thought it would be a great idea to chat about another wonderful health issue- vulvodynia.
Vulvodynia can be defined as ‘chronic pain or discomfort around the opening of your vagina (vulva) for which there’s no identifiable cause’. It is a terribly fun condition that is often misdiagnosed and experienced by approx. 16% of women aged 18-25 years globally. Medical texts first documented this painful, life-disrupting condition in 1880, however, millions of women continue to suffer from vulvodynia without receiving the proper treatment.
Symptoms and Causes
So could you have it? Here is a list of common symptoms: burning, stinging, irritation, and rawness, aching, soreness, throbbing, and swelling of the vulvar area. The entire vulva may be painful or pain may be centered in a specific area. Symptoms of vulvodynia may be constant or they may come and go. Symptoms can start and stop without warning, or they may occur only when the area is touched (provoked vulvodynia). The issue with vulvodynia is the fact that it can be caused by multiple factors including:
- Damage or irritation of the nerves of the vulva
- Inflammation of the vulva
- Long-term untreated infections
- Certain genetic disorders
- Sensitivity to certain acidic food/drinks such as coffee, tea, tomatoes and alcohol
- Dysfunction of the muscles of the pelvic floor
- Conditions that affect nearby muscles or bones
My pain started as a burning/ aching pain for 5 days in December 2018 whilst on holiday in South Africa. I assumed I was reacting to the hotel soap and the aching happened when I stood up for a prolonged period of time (30mins or more). At this point, I had been on the pill (Yazmin) for close to 4 years and had developed irregular spotting every month (yay!), which was super annoying and probably affected my mental health. The pain went away when I returned home, but resurfaced again temporarily in February for a week and then went away again. By March 2019, the pain was constant and I went to a gynaecologist, who, after a very painful internal examination, assumed I had an infection, put me on a course of antibiotics and advised me to change to a weaker combined pill since my FSH and LSH were practically non-existent at this point. *Side note: I was on the pill for hormonal acne, but that’s a story for another day. **Side side note: Internal examinations have always been extremely difficult and painful for me – after this one in particular, I had to lie down for 3 hours with a hot water bottle and painkillers (which do nothing btw)
The pain continued and in April, whilst on another holiday, the pain was so excruciating (aching, heaviness and burning sensation) that I had to lie down on the bed at different points during the day because standing up was too painful. I also went to an arcade in the hotel and played a motorbike riding game (a retro form of VR) and literally had to sit on the floor afterwards because it felt like someone had just whacked me with a hammer in my vagina. Enough was enough – I got off the pill came back to Nairobi and decided to see another gynaecologist for a second opinion- Dr Yamal Patel (literally my hero). He admitted that he did not know the exact cause of my pain but temporarily concluded that I might have an issue with vaginal pH since all my internal scans were clear. He then put me on a course of probiotics (first pills then Kefir) accompanied by NeuroCare Plus vitamin complex and a local anesthetic (2%) to use for intercourse (which I’ve only used 3 times as it wears off quite quickly but still takes the edge off). After around a month, I was feeling a lot better but the pain would come back in waves and linger for a week or so- particularly before and after my period. After another 3 months of minimal sex and constant Whatsapp consultations with 2 gynaes in the UK, I wen’t back to him for a second review, as the pain was still persisting albeit at a lower intensity. When conducting his internal examination, I jumped when he touched the outside of my vulva with his finger – that was his aha! moment – Vulvodynia it is…
I was hoping it would be anything else, because from what I had read on the internet, vulvodynia was not only incurable, but a life-long pain disorder that prevents sexual intercourse and consequently, destroys relationships/marriages and causes depression. He told me it is a very tricky disorder with no known cause and therefore, a more difficult, long-term treatment plan is required. After a very teary drive home, I started researching absolutely everything and anything there was to know about vulvodynia. Through this research, I realised that I had unknowingly been experiencing gynecological abnormalities such as issues inserting tampons (literally took me 2 years to use one properly), painful intercourse and internal examinations for years. Although the cause of my vulvodynia was unknown – there were loads of women out there going through the same thing as me and more importantly, had overcome it!
I must stress here- please please do not read any posts of women who have not found cures – it will make you feel 100% worse and hopeless. You will probably need a lot of positivity and encouragement following your diagnosis, so please don’t make it harder for yourself!
Back to the future
Long story short, after 4 months of doing all of the below I started to feel wayyy better and only got the pain (provoked) if I reacted to something I consumed (caffeine or alcohol) or had rough intercourse. I would also like to note that my angel of a partner was super supportive and considerate throughout my difficult journey and never made me feel insecure or ashamed about what I was going through (ditch him if he isn’t.. fr). These are the things that have made a massive difference to my life:
- Avoiding triggers: mine being caffeine and alcohol, namely coffee, black tea and green tea. Hot chocolate and tumeric lattes are now my friends. I get a lot of irritation when I drink any caffeinated drink and the burning sensation comes back – better to steer clear. I rarely drink alcohol but when I do I try to limit it and drink the equivalent in water to dilute it. Other women noted tomatoes and certain exercises such as horse-back riding/ bike riding triggered their pain
- NeuroCare Plus – this vitamin complex of folic acid and other wonderful things made a huge difference to my pain intensity. It is used to treat nerve disorders and is available over the counter at most pharmacies. After the initial 30-day dose, I now take it for 5-7 days as and when the pain returns.
- Use unscented/hypoallergenic/ pH balanced/chemical free shower gel: I’m currently using Johnson’s Cotton Fresh Baby wash and it works a treat! I have zero reaction and my skin feels great. Also, when you wash your hair do not let the shampoo/conditioner trickle down your body as it could irritate the vulva. Alternatively, switch to natural shampoos/conditioners
- Using latex-free condoms and loads of water-based lube (and relax!): Vaginal dryness leads to burning, which leads to clenching, which leads to more friction and burning. It’s a vicious cycle! If you’ve got a lot of pain- better to avoid sex and do it when you’re feeling better. Also, if you do have pain after – ice or splash your lady bits with cold water- a lovely tip from my gynae to reduce pain the next day. I also find that taking warm showers/ baths help take the edge off the pain. P.S. despite popular web opinion, Sitz baths actually irritated my vulva so I personally would not recommend them – just stick to warm water!
- Get a donut pillow: I noticed I would always feel pain/ discomfort in my car because the seat tilts upwards and presses on my vulva. The pillow is a massive help as it eases tension off that area- use it as much as possible
- Apply Saginil gel (ordered from the UK) or raw unpressed organic coconut oil to soothe the burning sensation. Also try to rinse after peeing, as I found that exposing your vulva to urine (acidic) often worsened the burning sensation
- Wear loose 100% cotton underwear and baggy pants as much as possible: you do not want any additional discomfort around there trust me! Keep those dental-floss type undies for special occasions where they will be on for minimal amount of time
- Use 100% cotton unscented sanitary pads/ panty liners: I haven’t used a tampon since the pain started, as I try to avoid any unnecessary internal irritation.
- Wash your undies with chemical-free/scent free detergent: Bidco’s Pure & Natural Soap Flakes work well
- Relax your pelvic floor: get this book – 7 steps to Pain-free Sex by Claudia Amherd that takes you through a series of pelvic floor movements, as well as touch therapy to train your brain to have positive associations with physical contact (and eventually intercourse) instead of triggering pain signals. Alternatively, you could look the exercises up online
Fast forward to today – I’m still not 100% pain free but I’m in a much better place than I was before. I only experience the pain around the first days of my period and if I expose myself to a trigger. I have recently been on a 2 hour horse-back ride, have frequent intercourse (keeping it relatively gentle though) and had 2 internal scans without experiencing any pain whatsoever. My periods are much more comfortable since using the 100% cotton pads and I only get the aching pain/ heaviness on my first day, which is considered normal. I should probably do more pelvic floor exercises/ massage the area, but since I’m more or less pain-free, I don’t prioritize it as much as I should.. woopsie!
I hope this post will help any women/ girls out there who are suffering from vulvodynia. When I was experiencing acute and daily burning, pain and discomfort, I felt so hopeless and down, as if the pain would define the rest of my life. Keep trying everything there is out there and most importantly, stay positive and listen to your body for triggers. Stay tuned for my next post that will hopefully be when I’m living my best life 100% pain free!