Vulvodynia Update: What am I Supposed to Do?

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Since my diagnosis of vulvodynia (which I wrote about in April) my situation has unfortunately continued to deteriorate. Each time it has felt like there has been some progress my positive feelings are swiftly shattered. The initial gratitude I felt for getting a diagnosis wore thin very quickly as I came to terms with the mammoth struggle I was up against, particularly at a time when the NHS is as under-resourced as it is.

After having seen the two consultants at the psycho-sexual unit, I started taking my daily 10mgs of amitriptyline. Even at this very low dosage, I immediately started feeling very tired. I decided to stop drinking for the first month or so of taking this medication having read about the extreme tiredness that alcohol brings on in many people who take amitriptyline – this left me feeling quite socially isolated and depressed at first but I thought it was best to allow my body to get used to the medication. Over the next few months the doctor gradually increased my daily dosage until I was taking 50mg per day. Once the dosage had hit 40mg, I noticed that the pain in my vulva had definitely dulled. I was no longer feeling pain when I sat down and the burning sensation was far less severe. The vaginal pain on penetration, however, was exactly the same – I still could not have sex. Despite the dulled vulval pain, I realised that this medication was really not working for me because every time I went on a night out it would get to the point where I physically could not keep my eyes open because I was so tired: I did not feel safe trying to get home at night by myself.

During these long months I slowly lost my sex drive almost completely. The fear of pain and the build up that I would have to go through mentally each time made any sexual interaction incredibly unappealing. What’s more, the vulval pain is unfortunately concentrated most around my clitoris and so I did not even want to touch myself, let alone let my partner. There obviously were some good days when I was able to have a sexual encounter but I generally found it easier to just avoid sex.

The effect that this has had on my mental state is difficult to describe, but I think the best I can do is to say that I feel like the vulvodynia has taken the old me hostage. I used to be sexually confident and happy where I now feel a deep sense of insecurity and anxiety. Even though I obviously have good days (because it would be too physically exhausting to feel how I do on my bad days everyday) I feel like most days I must numbly accept my unhappiness and pain, which I mostly do by filling my days with stuff – lots and lots of reading, talking (probably quite maniacally), doing work, writing, volunteering, going to meetings. I find small talk incredibly difficult in a way that I never used to. I often find myself sitting with people wishing I wasn’t there. I don’t want to make out that I have become some kind of social recluse, I haven’t, but I have become more socially anxious and find talking to certain people hard.

What really does not help is that lots of doctors like to tell me that being stressed can make the vulvodynia worse whilst they simultaneously do not offer me mental health support and say stuff like: “Ohhh poor you, it must be very frustrating. We’ll get there in the end”. After I burst into tears at my last appointment with the doctor at the sexual health unit (I am still confused as to why my doctor is here when vulvodynia is not a sexual health issue but a gynaecological one), he decided that I should start taking new medication, as the amitriptyline was not doing the trick. He prescribed me an anti-convulsant drug (Gabapentin) that is generally used to treat epilepsy.  He told me that some women find that this can help because vulvodynia can make your vaginal muscles spasm and therefore your vagina tightens making penetration difficult. The downside to this medication is I now have to take it three times a day, as opposed to once as I had done with the amitriptyline, and thus far I can report no improvements. On the plus side, I no longer experience extreme tiredness or in fact any other negative side effects. Because of my crying fit, this doctor confusingly told me that I should go back to my GP to be referred for pelvic floor physiotherapy.

I went to said GP appointment this morning and was told to stop reading up on vulvodynia online or in books because overthinking it will make the situation worse. She did not seem to really understand what vulvodynia is (no surprises there) and was making all of the worst assumptions about vulvodynia being a result of my mental health. This made me want to fly out of my chair and punch her in the face but instead I just cried again and tried to calmly explain that the vulval pain has nothing to do with my anxiety, my anxiety is there because of the vulval pain. I managed to get her to refer me for physiotherapy but really she seemed like she wanted to bundle me out of the room.

What am I supposed to do? Wait the 3 months in between my appointments twiddling my thumbs, taking medication that does not help me? Of course I seek out help online because talking to other sufferers of vulvodynia has enabled me to find some respite and some useful information and advice. I feel like I am being passed around between medical professionals in the NHS who are too overworked to care about what I have been going through because I am not dying. It is getting to the point where I feel like I should seek out a specialist privately because this year and a half long process is dragging me further and further from the happy person I want to be.

Something surely has got to change – how can so many women be suffering in the same way with so little support? Waiting lists are at least 3 months long for most services and in between, I am left flailing around unable to speak to most people I know and crying intermittently to my mum or boyfriend. The sad truth though is that without serious funding for the health service, vulvodynia is going to be so far down the list of priorities that all health professionals can possibly do is chuck some medication at you and hope for the best.

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One Woman’s Battle to Get a Diagnosis of…Vulvodynia

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Anonymous 

Some time last year, I went to the sexual health clinic with the usual symptoms of vaginal thrush – a change in discharge, itching and discomfort. I was seen by a doctor, examined and given the suitable medication for what was, indeed, thrush. My vulva soon returned to its normal state, and I continued my life as usual.

A few months later, I again started to experience what I believed to be the symptoms of vaginal thrush. I had a quick google and reluctantly decided that I should probably go to the sexual health clinic, again (admittedly mainly because they give you the medication and cream for free). I waited the usual hour at the drop-in and was examined by a nurse. When she inserted the speculum I cried out because it hurt and held back the tears that pricked my eyes. She said that she couldn’t see any symptoms of thrush and that, this time round, it was actually my cervix that looked red and inflamed. The nurse told me that I shouldn’t have sex until the pain had reduced, and that the discharge was probably something to do with my inflamed cervix. I left the clinic feeling confused and still experiencing pain and discomfort.

My symptoms of discomfort and burning did not go away, despite abstaining from sex. After a while, I decided that I would, again, return to the sexual health clinic. I waited the hour once more, and this time was seen by a doctor. I explained my symptoms and told her that I still thought it could be thrush and that I was worried about the pain I had been in for the last few months. The doctor was very understanding and decided she needed to examine me. I endured the pain of the speculum once more and was again told that my cervix was inflamed. When I told her that I only really experienced pain internally during sex, and that what I was concerned about was the pain around the entrance to my vagina, she said there was no obvious inflammation of my labia. I was reassured by her that the redness of my cervix was not a serious issue and sent away.

I performed this dance at my local sexual health clinic three more times over the next four to five months, one of the (male) nurses I saw during this time even had the audacity to say, “You know sometimes sex can hurt when you are not in love.” I even went to the sexual health clinic attached to my local hospital, where I was examined by a consultant, with no result.

I eventually broke down in hysterical tears to a nurse about the pain I was in. He looked at me, wide-eyed and unsure of what to do as I wailed “Nobody will help me,” and sobbed uncontrollably. He eventually went to get another woman nurse, who seemed irritated at his lack of resourcefulness, and offered to examine me. She said that I had been rubbing the painful area of my labia so much that it was red and raw and gave me some soothing cream and aqueous cream to wash with. It was only at this point that they finally referred me to the specialist psychosexual unit at the local hospital. Living with pain everyday had become normalised during all the months it took for me to finally get this referral.

After more than six months of sexual health drop-in clinics and GP appointments, I arrived at the hospital for my appointment with both a consultant and a psychologist. I was quizzed about every part of my sex life, my mental health and lifestyle. Deep down, I was uncomfortable at detailing intimate elements of my sex life to two strange middle-aged men, mentally flinching when they asked me how often I masturbate, but I performed my role as practical, open and relaxed patient, eager to get my appointment over and done with. Both doctors were very nice, but I was never given the option of seeing a woman consultant or being examined by a woman – the best they can offer you is a woman chaperone.

After the grilling and a further vaginal examination, the consultant diagnosed me with unprovoked vulvodynia. He assured me that I had done well to seek out medical support as quickly as I had, as many women endure the pain of vulvodynia for years before going to see their GP. He also informed me that lots of women report symptoms of vulvodynia after experiencing a couple of serious bouts of thrush, which I had never heard anyone talk about before. They gently started to explain the various treatments available, from medication to therapy, and I tried hard to conceal the fact that they had just smacked me in the face with a bag of bricks.

Vulvodynia is persistent, unexplained pain in the vulva which can be long-term and chronic, but the doctors assured me that much can be done to relieve the pain. It is not an STI, it is not infectious, it is not related to cancer and you cannot pass it on to a partner. In my case, unprovoked vulvodynia means that my pain is burning, sore and spontaneous in nature – it is not touching that causes the pain, it is there all the time.

I told them I was grateful that I had a diagnosis, but really, I felt worse being diagnosed with a long-term chronic pain issue than I had when I assumed the doctors were just missing some kind of skin condition. The doctor prescribed me medication that, in higher doses, is prescribed for depression. The reason for this being that the medication alters the way in which nerve fibres send their impulses to the spinal cord and give the sensation of pain. I remembered that there was once an episode of Sex & the City where Charlotte is diagnosed with vulvodynia and told she is going to be prescribed a “Light anti-depressant…for [her] vagina.”  I want to smack whoever wrote this episode of Sex & the City into oblivion.

I left the consultant’s office, feeling numb, to go and pick up my medication from the hospital pharmacy. I cried quietly on a squeaky plastic chair in the waiting room and then got on the bus home. I felt stupid for crying and pulled myself together for the phone call to my partner. I explained that I had been prescribed this medication and that, hopefully, in a few weeks time, it would start to work and the pain I was in would be reduced.

Obviously when I got home the first thing I did was to google both Vulvodynia and the medication I had been prescribed. I found the encouraging news that the drug I am now on (amitriptyline) is effective for pain relief in 1/4 people, which is apparently very high…let’s hope I’m in that 25%. I also scrolled through various websites about amitriptyline where the warning DO NOT DRINK ALCOHOL as dangerous side effects or death can occur, was a consistent piece of advice. Amitriptyline also makes you drowsy, and I’ve been waking up in the mornings with a feeling similar to a hangover.

I am only in the first week of taking this medication and I know that it will take some time for doctors and/or psychologists to help me deal with the pain, but I cannot get over the amount of doctors visits it took for me to get the referral in the first place and that this actually only came after I sobbed hysterically to a bewildered nurse. GUM clinics are so stretched and understaffed that there was rarely a doctor there who was able to see me. This resulted in a cycle of being seen and made to leave with no diagnosis and no pain relief (ibuprofen and paracetamol do not work to relieve the pain of vulvodynia).

There is also the effect that this ordeal of almost a year has had on my mental health and sexual confidence. I have developed a level of anxiety around penetrative sex that I never had before, and sometimes it is too uncomfortable to have myself or another person even touching my vulva. I also never imagined that I would have had so many strange men examining and peering at my vulva, and how unpleasant I would find that experience.

I am hopeful that I will be able to take steps to relieve the pain that I’m experiencing over the next few months, but if I had been fully aware of what vulvodynia actually was, perhaps I would have been able to go to doctor with the vocabulary to explain my symptoms and have the confidence to ask for the help I needed. From my experience, there can be a distinct silence when it comes to the treatment of women’s sexual health. The difficulty, though, was that my inflamed cervix (which doctors did notice) had nothing to do with the vulvodynia. I believe this issue may have confused how I described my symptoms to doctors, but even so, it should have been picked up on that I was in physical pain with no external symptoms, given that I sought out medical help roughly ten times for the same issue.

I am ultimately thankful that I now know what is going on with my vulva and hope that my experience may help the up to 15% of women who have vulvodynia, and that it could also be a useful tool for those who will most probably never have heard of vulvodynia before.  I found this website useful and have also discovered that there are vulvodynia groups on Facebook, including one for partners of women with vulvodynia.

My vulvodynia journey stretches on…hopefully it won’t continue to be this painful.