This brave Queen Becca has been suffering from Vulvodynia and chronic nerve pain; a fairly complex condition and rarely understood by professionals (standard). Here is her story….
I’ve had numerous health issues since July 2018, such as migraines, severe and chronic IBS, cystic acne, recurrent UTIs, chronic pelvic nerve pain and vulvodynia My biggest issue to date is my chronic nerve pelvic pain and vulvodynia. It all began in November 2018 when I had a recurrent UTI for 3 months that they couldn’t treat. They then diagnosed me with interstitial cystitis and gave me lots of bladder installations to repair the bladder lining. My UTI was finally cured after 3 months of antibiotics and lots of tears, catheterisation and anxiety. July 2019 I started noticing the stinging sensation coming back when I peed (this was my only indicator of a UTI, I was very lucky with my symptoms). I got checked repeatedly for UTI’s, yet no infection. I went back to my urologist and he tried antihistamines, then another bladder installation which then gave rise to a whole new set of symptoms- frequency and urgency and pelvic pain. After several weeks of more tears, anxiety and catheterisation they took me into surgery, for a cystoscopy and distension. Thankfully, there was no signs of IC and my bladder held normal capacity. All of this went on for about a month/6 weeks. The urologist told me this would improve my symptoms and could possibly cure me (it works completely in 70% of patients). Unfortunately (as usual) it didn’t work for me. But throughout all of this another symptom had arisen, clitoris & labial pain. I saw two GPs who argued I had swollen/red/sore labia and clitoris due to catheterisation. One prescribed me dermovate- a steroid cream. I then saw a gynaecologist who said she saw two superficial tears at the top of the labia minora. These were due to trauma from rough nurses or doctors (horrifying btw). I returned to the urologist and he then referred me to a pain specialist with little to no advise as my bladder was organically fine, the only indicator of pain was that there was white blood cells present in my urine (indicating inflammation). I went and had a consultation with a pain specialist, explained my history and my two biggest issues. Firstly, he suggested that it was the s3 nerve which runs through the bladder that was causing the urinary symptoms such as pain when passing urine & frequency. Additionally, he suggested that the ‘vulvodynia’ I was experiencing; the pain around the labia and clitoris was due to referred pain from the S3 nerves. He prescribed me gabapentin cream & told me this would work and if not there were other options. So I went home and tried it. Gabapentin cream is unlicensed medicine- it has to be specifically made. My father owns a pharmaceutical company and has lots of friends in pharmaceuticals and managed to cut a deal for £350 for one small pot of gabapentin cream. It did not work. So I cried my eyes out. At this point it was around the end of September. I’d been dealing with agonising pain since July, stopping me from riding my horse, going to the gym & all sexual and normal social life activity. It was painful to sit, to walk, to do anything ! I either needed to pee or I had shooting pain in my labia or I just felt like I was being stabbed from wiping my vagina after peeing!! In the mean time, I had visited my GP to ask for a high vaginal swab to check for thrush. I had no discharge or itchiness but I’d been on antibiotics for three years (due to acne) and then again for UTI’s (I know!! It’s really bad). Additionally I was experiencing pain that could resemble with thrush. I had the swab which hurt (pathetic, but I’m that sore) and she sent it off to the lab. In the mean time I had been in contact with my dads gynaecologist friend (who is a top fertility specialist in Harley street; the one benefit of all of this is that my dad is a superstar, he’s super intelligent and has amazing contacts and is really supportive). The gynaecologist suggested some of this pain could be due to a disturbed microbiome and that the bacteria and yeast could be sending out signals indicating pain. Of course he was right, I took a thrush tablet immediately after speaking to him before getting the results. The results came back positive for a rare type of thrush, seen in patients who are regularly catheterised! I took another tablet of fluconazole- as my symptoms did not relieve immediately. I went back to the nerve specialist about a week ago now (Beginning/mid October) & told him about the thrush. This is when I began to have a big breakdown to him. He is a thoughtful man, who is clearly realllllyyyyy intelligent but his bed side manner isn’t the best in my opinion. He started scaring me, he asked me about my history and I explained again. He fixated on the labia- suggested I might have lichen sclerosis- as the ’tears’ were still causing my pain. Of course I had googled this and I didn’t think so but he was adamant. His story changed. He no longer thought it was nerve pain or referred pain because the gabapentin cream didn’t work. I began to cry; I told him I was depressed & that I didn’t want to live like this anymore. There was little emotion in his eyes (I’ve seen around 10 specialists in the past year for different issues and he was probably one of the most emotionless specialists I’ve seen). He then began to explain that he wanted to do a nerve block but he wanted to get me checked for lichen sclerosis- I obliged because I already had a dermatologist because I was on roaccutane for 6 months and I was a depressed, anxious, self conscious mess and she was & is my fav consultant to this day. He then explained that there were about 8 different type of nerves contributing to all my symptoms and he couldn’t turn it all off without risking nerve damage . He then suggested he tried a pudendal nerve block- this is responsible for the skin, so the opening of the vagina to the clitoris. This would allow me to ride my horse. However, this wouldn’t really allow me to ride because the symptoms of needing to pee get so strong whilst riding it would be too uncomfortable. He told me when he could do it and where and what it would require. Local anaesthetic and for me to be awake. He would be going in blind as he can’t cut me open, he has to relatively guess. He then suggested my pain was psychological or that it was adding to it- something I had thought off. I’d been doing mindfulness and have extensive knowledge in anxiety due to studying psychology and having CBT for 9 months. So, we went off to the dermatologist, a good emergency appointment straight after the weekend. I dropped my pants and she took a look. Thankfully & as predicted and suggested by 2 GPs, 1 gynaecologist and a good google search, I don’t have LS. She did say that the skin had eroded on my labia- BRILLIANT! And she’s not sure why: it could be due to trauma, an infection (yeast???) or another reason. She told me she didn’t want to do a biopsy yet as this would require cutting my labia, local anaesthetic and stitches (but hey, I was going to have a needle in my bum/vagina anyway so who cares???). So she sent me home with datakort, a fungal and steroid cream and a vaginal moisturiser. During this time, my symptoms had massively improved after I saw the nerve pain doctor- I believed it was the second thrush tablet. However I ended up having to take an antibiotic or too to reduce the chance of an STI (I’m so worried about it). And unfortunately about 3 days after seeing the dermatologist my symptoms have massively flared again. I’m sat on a bag of peas writing this right now. I have to attend another high vagina swab to check for thrush tomorrow, but I’ve given in and taken another thrush tablet tonight. I use the creams she prescribed for a week and then I go back and see her in two weeks (unfortunately it’s the school holidays so, that will be 3) if there’s no improvement I have a biopsy and the lab tells us what cells are causing the eroded skin. In the mean time I guess I just cry and eat a lot of ice cream. My father is looking into nerve specialists in London for a second opinion before I have a block, because ideally if I block one I need to have the other blocked because they’re both intertwined and you cannot separate the hell I experience from either one. I’m praying my symptoms are back because of thrush again. I’m praying it’s nothing serious. I’m praying a block can be done - it doesn’t last more than a week in someone & only works at all in 70% of patients. So even if I do have it done - I don’t feel confident about my odds. Over the past year I’ve spent more times in hospital waiting rooms than at university, I’ve become closer with my consultants, neurology, dermatology, gastroenterology, urology gynaecology and anaesthesiology than I have with my friends. I’ve had severe health anxiety to the point where I’d beg my parents to take me to A&e due to a stomach cramp and depression. The positives of all of this (if there are any) is that it’s taught me who my real friends are. Who actually has helped me and who really cares. I feel bad for my family who have had to deal with me through all of this; on Christmas Day I didn’t leave my room because of severe cystic acne and depression, due to roaccutane (it did work in the end, so far anyway!!). I’ve also become a lot more grateful, I don’t have a life threatening illness like lupus or cancer, I’ve been fortunate enough that my dad has great contacts and that he’s paid to get me through all of this and to this day, as soon as I shed a tear he’s incredibly supportive. He never tells me ‘it’s all in your head’ ‘it could be worse’ ‘you’re not that ill’. He’s just brilliant and I’m grateful! Although sometimes I just want it to be over & I feel like I’m not living (because I’m not) I still feel okay at the moment! I still complain and whine and cry a lot, but I limit a big breakdown to once or twice a week and when I do cry it’s for like 20 seconds then I tell myself to get it together (progress right??). I miss riding and I feel like I’m neglecting my horse. But it could be worst (perspective is everything, or at least I say so).
You can follow Becca at @b3ccaclark