PGAD: a patient's story

I am a 48 year old woman who developed PGAD in April 2014. I also have pudendal neuralgia and vulvodynia.

I woke up one morning having mini-orgasms with every step I took. The problem went on at this intensity for six weeks and then started to calm down. I also had burning in my vagina/bladder/rectum/vulva, pains down my leg, racing heart and feelings of anxiety (who wouldn't?). All of this was more than likely coming from my irritated pudendal nerve.

I am now 75% better and some days symptom-free.

I was pushed to the very edge of coping with all of these problems. For me, the PGAD was the worst, and is in most people's cases. Like many, I was met with sniggers from the odd medical professional. This condition takes everything about you and rips it and your mind into tiny pieces - and then to be given a blank look by most people you tell... We are desperate and there are hardly any specialists to turn to. I know for certain there is far more of this about than is ever reported, but the stigma keeps it very hush-hush.

So what has helped me? Getting a hidden bladder infection dealt with, local oestrogen (I am perimenopausal), antihistamines, a TENS machine, women's health physiotherapy, LOTS of walking... I take vitamins B12/6, zinc, vitamin D and a probiotic (this was from my own research). I sleep well, and avoid sitting too much to try to let the nerve heal. Ice to the area calms the nerve down, and I lie on a heat pad to relax my piriformis muscle, as this by the very nature of the pain we experience will also be aggravated. I take warm baths. You will also need to learn to do reverse Kegels as you will probably have PFD (pelvic floor dysfunction), which in layperson's terms is like having cramp in your calf muscle, but in your pelvic floor. When we have cramp in our leg we get up and walk around and massage and relax it - it's no different for our pelvic floor.

I tried amitriptyline for six months, and it helped me sleep, so that was very welcome, but you have to be careful with SSRI antidepressants, as withdrawal may cause PGAD, and the medication type of PGAD is harder to deal with than the nerve causing the problem.* So I have been very wary regarding what I take.

Google is a double-edged sword - very helpful, and absolutely terrifying in the same breath... But for me it has given me knowledge, found me the experts, got me my diagnosis and started putting my plan of action into place. This is like peeling an onion - there are many layers. Unless the problem followed surgery, for the vast majority of us, it's not what we did for one day that has caused it, it's what we have done day in, day out, year in, year out... and it won't heal overnight. It takes time and trying not to fight the condition, going with it, listening to your body and mind, and being kind to yourself.

As told to the VPS.

*VPS note: withdrawal from the SSRIs has been reported to cause PGAD, but the evidence for this is limited. Also, please note that amitriptyline is not an SSRI, but a tricyclic antidepressant.