Kate's Story: (Long) Journey to Diagnosis with Vestibulodynia

Telling stories such as mine can be difficult for more than one reason; for one, women haven’t been gifted with the anatomical language to help us express our physical and mental pain. Secondly, when the pain is in such a private area, and has so much at stake, we aren’t given the chance to talk about it because of stigma. Most of the time we aren’t even listened to by doctors at all. I had never been aware of sexism in the healthcare system until I developed a disorder which was unequivocally female. I mean female in this instance in a strictly biological sense, not gendered. I had heard statistics stating that women were far less likely to be given pain relief in hospitals, were more likely to be misdiagnosed and ignored without a man in the room with them, to be labelled as ‘dramatic’ or ‘hysterical’, and to die of heart-related illnesses. This is just the tip of the iceberg. The symptoms of the female body aren’t taught, well-known or understood; it’s a body which data has silenced. With a gap in knowledge, it’s no surprise that female physical pain disorders are rarely heard about nor treated properly, and receive next to zero funding for research and clinical trials. In fact, erectile dysfunction receives more funding than pretty much every female pain disorder combined. Male pleasure trumps female pain, it would seem.

In Ireland, it’s no secret that our healthcare system and female anatomy don’t exactly go hand-in-hand. From the CervicalCheck scandal which saw botched results of smear tests, leading to late, sometimes terminal, diagnoses of cervical cancer to the bitter fight for reproductive healthcare and lack of resources in mental health, sexual assault and rape centres and women’s refuge centres; Ireland is no place for a woman. I discovered this for myself in 2016 at the age of 21, when I developed an agonising disorder which changed my life. I was getting strange symptoms for a few months while on a work visa to San Francisco during the summer. The feeling of a tugging sensation in my vagina, near my cervix. It caused me discomfort, but my bank balance wouldn’t allow me to attend a medical clinic, so I decided to try and ignore the feeling until I arrived back in Ireland that September. Six months previously, I was embroiled in a toxic relationship which escalated into abuse faster than I could have imagined. The distance which America brought was lucky, but my body was trying to recover from the pain it had endured when I was in this relationship. I had been with a few people before him and had noticed a level of discomfort during sex before, but nothing like this. As well as it often being nonconsensual, which presumably had an even worse effect on my body, he was rough and demanded too much of me. The discomfort I felt in the coming months was then blamed on the aggression which he constantly brought during our sexual relationship; I ignored it, just as I had ignored the red flags. In October, the relationship thankfully ended, but then came anxiety. I had struggled with Obsessive Compulsive Disorder as a teenager, but the stress of the relationship had resulted in waves of panic attacks which grated on me daily. I considered dropping out of college, and felt like a stranger inside my own body. One day, I woke up to feel the most horrible burning feeling in my vagina and all over the vulva. It was like someone was holding a lighter up to me, like an odd feeling of electrical twinging that I couldn’t shake off. I went to see a doctor straight away, but was shrugged off. “It will burn out by itself,” he said, barely looking at me in the eye. “It’s probably just stress, or an STI.”

Several STI checks later, and countless more doctor visits, my GP finally agreed to refer me to a gynaecologist. I was sent to the A&E to get an injection for Pelvic Inflammatory Disease, despite there being zero evidence for this condition aside from an ex-boyfriend who didn’t understand the meaning of fidelity and who flew into a rage if you asked him to wear a condom. STIs were eventually ruled out after three months, which meant that a gynaecologist might just pay attention this visit. After seeing General Practitioners roughly ten times and going to the Emergency Room twice in four months, only then was I allowed to be graced with the presence of a consultant gynaecologist. They’re like unicorns in Ireland.

My first experience with a gynaecologist in Ireland was, ironically, with the clinical director of the national cervical cancer screening programme who had to step down after the CervicalCheck scandal. She had advised a gynaecologist not to tell certain women about the botched test results, but to file them instead. So the standard of care isn’t exactly sky high. I was referred to her when I refused to leave the maternity hospital’s A&E without seeing a senior doctor, after they tried to send in a 21-year-old male medical student to examine me instead. The boy had probably never even seen a vagina, much less could diagnose a complex pain condition in a country which has never heard of them. Four months of chronic and debilitating pain later, I landed in her office. She read my file in front of me (which is not standard procedure, files should be read BEFORE the patient comes into the room), and asked me angrily why I was there. “I don’t understand why you’re here,” she grumbled. “This has nothing to do with me.” Before then I had assumed vaginal pain should be seen by a gynaecologist, but apparently she disagreed. I asked for a biopsy and said I wasn’t leaving, so she graciously obliged. The dye they used lit up like a Christmas tree, which basically means my whole genital area was incredibly inflamed. That shut her up nicely. She ended up doing the biopsy in the wrong location, and I had to get stitches. The care didn’t exactly improve after that. The biopsy simply said “VIN1”, which is vague medical speak for ‘abnormal cells’. VIN can range from nothing at all to precancerous cells,  and I simply got a letter with that word on it instead of a doctor’s call. You can imagine how scary that would be; Googling a term and seeing ‘cancer’ as a result.

After one entire year of getting ignored by the healthcare system in Ireland and numerous consultant doctor visits later, I decided to try the UK instead. The NHS system is renowned for being light-years ahead of Ireland’s HSE, so I had faith. I had begged for pain relief and annoyed one consultant so much that he gave me Amitriptyline, so a few months of that drug had helped a tiny bit with the pain. I had also been trying physiotherapy with little success. I decided to go to Harley Street in London, to see a professor of gynaecology. She was the first person who treated me with an inch of empathy in the whole year of searching for answers, and I will never forget the feeling of hearing her say, “I believe you, and see your pain.” See Ireland? I’m not crazy!

She treated me with kindness and respect, and was shocked at the way I had been treated in Ireland. As an Irish-born woman, she told me she has been seeing hundreds of Irish patients come over to London in the hopes of finding answers for decades. She asked me for the results of my Irish biopsy, and I said “VIN1”. She looked at me blankly, and said, “Where are the rest of the results?”. After informing her that, actually, that’s all the information we can receive in Ireland, she looked shocked. Straight away, she got me an appointment in the UK for a detailed vulvar biopsy, and got me a referral for the best pelvic pain physiotherapist in Ireland; Maeve Whelan. (AKA: The Queen of Pelvic Muscles). She saw how abnormal my genital skin looked as a result of the intense inflammation, and told me my pelvis had actually tilted from the level of pain I was experiencing every day. These were all vital snippets of info. For the first time, I came out of a doctor’s office with a shred of hope that my future mightn’t involve crippling pain. A few weeks later, I had done my second vulvar biopsy (done as a punch biopsy instead of stitches because England is not in stuck in the 1950s) but got an unfortunate skin infection as a result which blindsided me with even sharper pain. The results of the biopsy were confusing; the inflammation was so high and yet the conclusion was murky. I was told I had lichen sclerosus; a skin disorder which normally hits women after menopause. It essentially erodes the genital skin, and the only treatment is steroid creams which actually just thin the skin rather than cure the disorder. Steroid creams only made my pain significantly worse; they were too harsh. I had allergy tests and tried every level of steroid cream and ointment possible, but it only made it worse. Over a year later when I went to America for healthcare and asked my UK consultant for the hard copy of the biopsy results, the conclusion wasn’t lichen sclerosus, it was “possibly”  lichen sclerosus. I had been getting treatment for something I possibly didn’t even have, and wasn't getting better. I was never told this by the consultant herself, I had to ask. Once again, doctors weren’t listening to me or giving me the right information.

By this time, it was two years later and I was on Lyrica. The combination of Amitriptyline and Lyrica eased the pain slightly, but I was on a massively high dose and the side effects were far from easy. A year of intense physiotherapy with Maeve Whelan had allowed me to be able to stand and walk for a far longer time, and eased the discomfort, but I still couldn’t really sit down properly. It wasn’t good enough for me to live. I couldn’t have any sexual contact with my boyfriend, who had supported me since day one, I couldn’t exercise, I couldn’t sleep properly despite the meds and I couldn’t see a future where I would be happy. My boyfriend and I had began dating almost exactly as the pain began; our second date was the day I began Amitriptyline. It killed my libido, but I wanted to try and be ‘normal’, so to speak. We tried sex multiple times, but it nearly always ended with me bursting into tears. That definitely killed the mood, but he stayed by my side nevertheless, urging me to keep searching for answers.

After two years of pain, I had seen countless gynaecologists, dermatologists, a pain consultant and had tried nerve block injections, hormone treatments imported from a UK clinic, millions of blood tests, four contraceptive pills, an Implanon contraceptive, the Kyleena coil, two types of nerve pain medication, intense physiotherapy, steroid creams, numbing ointments, gels, a colonoscopy, smear tests, and a laparoscopy, I had only seen a relatively minor reduction in my day-to-day pain. My first ever smear test came back with an anomaly,  which normally means that it needs to be re-done six months later, but surprise, surprise; I never heard back from the hospital about another smear. I even had to fight to get my periods stopped, as my pain was always worse during menstruation. After finally convincing a gynaecologist to give me a low-hormone coil and a laparoscopy, it took two doctors to insert the Kyleena as my cervix was so blocked from muscle tension. I was luckily given general anaesthetic for this but the first time a doctor tried to insert it I had no pain relief and almost passed out. The doctor barely noticed. I was seeing a counsellor at the time to help me cope with the pain, and who also was helping me heal from my past relationship and sexual trauma. My UK consultant, hailed as a leader of her field, had officially run out of ideas. At least she tried; it was more than every other doctor. My Irish gynaecologist had written “I see no reason for her pain” on my report, so my GP practice had blocked me from getting my pain relief medication. I was at a loss, and was told to stop looking for solutions and to basically be happy with my lot. My counsellor was the only person who told me to keep looking.

After miraculously graduating from college, I came across a name online; Dr. Andrew Goldstein. I had heard of him before through my research in lichen sclerosus; he was American and really knew what he was talking about. I bought his book online; “When Sex Hurts” with Dr. Irwin Goldstein (not related) and Caroline Pukall, and couldn’t believe how much it resonated. The book lists countless female pain disorders, and has various treatments. It even goes into the emotional and mental toll which this type of private pain takes on women, and how to approach dealing with this. It touches on relationships, how to voice your pain to doctors, how to live your life; and it’s ten years old. What was seen as old in American medicine is state-of-the-art in Ireland, who are about 50 years behind. I knew I would do whatever it takes to go to America and see Dr. Goldstein. I read everything possible about him online, his patient reviews, his cutting edge vestibulectomy  surgeries and the centre for vulvo-vaginal disorders in Washington, DC. I contacted them to ask about pricing (a consultation is 1500 dollars, not covered by insurance) and saved up for months to go. If he couldn’t help me, nobody could, so the money was worth it if I could find out more about my condition. He gives you two hours of his time, and a thorough pelvic examination and survey featuring your entire life medical history and mental health/sexual history. Not a single doctor had asked about my sexual history in Ireland, never asking if I wanted a chaperone in the room for safety and never wondered why I would cry during smear exams.

I booked flights to Washington with my mum and went to see him. He had two research assistants in the room with him, and even gave me a hug. I felt at ease immediately. He went through my whole history, his assistants noting everything I said down on a laptop, and listened intently. He never doubted that I was making it up, and never suggested that stress was the reason. Psychosomatic wasn’t in his dictionary, and I had never appreciated a doctor more at that moment. He performed the ‘Q-tip test’ on me, which is basically using a cotton swab to touch every part of the genital area for pain and asking exactly the sensation felt. It took a long time and energy, but I got through it. He touched the area within Hart’s Line and I almost flew off the table; he had touched the vestibule, and the vestibule was inflamed as fuck. He put a numbing agent called BLT on the area, and left it to work for 30 minutes. When I came back into his office, I felt great. I couldn’t feel a thing in the vestibule, and that was how I liked it. The area is just at the entrance of the vagina, but spans a large amount of space. Dr. Goldstein told me that he suspects that I have Congenital Neuroproliferative Vestibulodynia; medical speak for a lifelong condition where I was born with too many nerve endings in the vestibule, which become inflamed and basically try to ruin your life. I was never able to use tampons, riding bikes as a kid was uncomfortable and I never had a pleasurable penetrative sex life; all signs of the condition. I had it all along and had never known. It fitted exactly with my symptoms, and I knew straight away that I was a candidate for his surgery. The only treatment option I hadn’t tried was capsaicin, which is using the ingredient from chili peppers to burn off the nerve endings. It’s as painful as it sounds, and I flat out refused and said the only thing I wanted from him was the surgery. He discovered that the surgery is not even available in Ireland, as nobody is qualified to perform it and the system has no idea what it is. In the UK, they only  perform it in “extreme” cases, whatever that means, and their success rate is 80% compared to Goldstein’s 97%. He’s performed over 800 of them, the second most in the world only to an Israeli doctor. After a few weeks of thinking, I decided he was the only person I trusted to perform it on me, but it was going to cost me a lot.

Four weeks ago, I travelled to New York to have the surgery with him, after three years of pain, and he discovered endometriosis underneath the vestibular skin. He said that in 800 surgeries, he’d never seen it before  and I was lucky that I had chosen him as most other doctors wouldn’t have had a clue what to do once they discovered it. His confidence, which some took as arrogance, paid off. He removed most of it, but now I had to figure out what to do to prevent regrowth. I’m waiting for my six week check at the moment, and  have a relatively long recovery road ahead, but I know I’ll never regret getting the surgery. I have yet to discover how successful it will be in reducing my pain, so that’s a story that has yet to be told down the line. I still have more to do in my pain journey.

There are hundreds of disorders in the female body; ranging from PMS, polycystic ovarian syndrome and endometriosis to clitorodynia, lichen planus, lichen sclerosus, interstitial cystitis, vaginal atrophy, hypertonic pelvic floor muscle dysfunction, bacterial vaginosis, vulvar vestibulitis syndrome, chronic candidiasis, pudendal neuralgia, post-herpetic neuralgia, HPV and more. If a doctor looks at female pelvic pain, and simply says ‘vulvodynia’; they’re quitting before the race. Odyne is the Greek goddess for pain, so vulvodynia literally means pain in the vulva. It then became the generalised term for all female genital pain, and has no doubt lead to many a misdiagnosis. Push for more answers, more detail, because you’ll get lumped in with other people who actually all have different symptoms and disorders. There are dozens of types of pain; stinging, burning, aching, scratching, stabbing, cramping, pulling, poking etc. There are different types of pain for different disorders, different reasons and origins of pain and therefore there should be different treatments for pelvic pain. Putting a woman on nerve pain medication just puts a plaster over the issue, instead of properly diagnosing her. Female pelvic pain can put lives on hold, and is once of the most important parts of a woman’s body. Most of us crave pleasurable sex lives, many of us want to conceive and have children, and ALL of us want to be free from chronic pain in an area which remains private. I hope my story shows that a private area needs to be public so we can get answers to all of our important questions. Listen to women who tell you they’re in pain; we can endure pretty much anything but we shouldn’t have to.

Thank you Kate for sharing your story! I wish you all the best in your recovery!