Health Organization for Pudendal Education

Hi, I was a member here years ago, I stopped posting because my symptoms improved. I've had clitoral pain since 2007. I was diagnosed with vulvodynia in 2019 after seeing various doctors. I was on antidepressants for a short time but stopped them a few years ago. I think I have clitorodynia, maybe affecting the dorsal nerve, but I’ve never been diagnosed.

I live in the UK and I've seen gynos and physios. By 2019, my pain was feeling quite a lot better, so I stopped going to doctors. The pain used to make me really depressed, and I think I just blocked it out and didn't want to deal with doctors etc. when I was feeling a lot better.

For the last five years, my pain has been minimal with occasional flare-ups, usually from too much exercise or sex. To begin with I didn't have sex much because it would hurt, but over the past couple of years, sex got better and I could have an orgasm around once a month, and the symptoms were manageable (just a day or two). That was my 'normal' and I was ok with it. I couldn’t do certain physical activities like running, but walking was fine, though too much would cause flare-ups. But I found a way to manage it and I felt happier in myself.

Recently, I noticed my clitoris felt different, loss of sensation, weak orgasm, and it looked smaller with some swelling around it. My vulva also got really itchy and my skin got really sensitive and tore easily during sex. It got harder to orgasm, taking longer, and I sometimes had no feeling at all.The last time I had one, a few weeks ago, my clitoris was really sensitive afterwards and my vulva was very itchy. I remember waking up scratching one night and I was very sore.

Two weeks ago, my clitoris got extremely sensitive and had turned a dark purple-red colour. I went to see my gp last week. She said it looked like it had been bleeding and was bruised. She prescribed me steroid cream and is referring me to a vulvar specialist because of the itching, irritation, and loss of sensation.

The next day, the pain came back really bad. I feel like it’s my fault for having sex/orgasms. Maybe it’s from scratching myself in my sleep and I managed to cut myself. I just don't really know how I managed to injured myself but I am very angry and upset with myself for this.

The pain is sharp, stabbing, hot, sometimes burning and aching, and goes down my legs and into my lower stomach. I’m also feeling fatigued, irritable, nauseous, and have headaches. I’m in a lot of pain and it feels like my nerves are going crazy. I’m struggling at work and even walking around the house is painful. I’m mostly in bed, taking over the counter painkillers that aren't really helping. My clitoris has become even smaller and the bruising is still there. I have to use this cream for another week.

I feel like I only have myself to blame. I just want to be normal and enjoy sex at least a little. I’m in my mid 30s now and even though I've had these problems for so long, it's still a big shock and upsetting when the pain returns. I hope the referral won't take long, I hope they can help or refer me to someone who can.

Hi, I like your username because it gives a positive sense of hope. I am sorry to hear you are going through this and that things have gotten significantly worse. It would be easy for me to say that you shouldn't blame yourself, that you are just a person who wants to be able to experience a normal sex life like most everyone else can, and that it's not your fault what happened to you. While all of that is true, it's not easy to just suddenly change your attitude and quit blaming yourself. I blamed myself a lot for my PNE problems. So I understand why you are feeling guilty about it.

Since you are having pain down into your legs you might want to ask about an MRI to make sure there isn't something going on in the spine. For some temporary local relief you could try some extra strength vagisil (benzocaine) topical ointment or maybe some lidocaine patches. A lot of people find gel ice packs helpful. You can get them in the shape of a pad so you can put them between two pairs of underwear. If the pain is seriously affecting your life, maybe your doctor would prescribe some nerve pain medication such as gabapentin or pregabalin (lyrica). If your symptoms don't improve with the prescribed current treatment, you could ask your doctors about a getting a nerve block - either a pudendal nerve block or a dorsal clitoral nerve block for diagnostic purposes. Dr. Greenslade and Dr. Vayawhare on this list can do nerve blocks. https://www.pudendalhope.info/european-physicians/#UK

Violet

Welcome back to the forum. I agree with Violet---that is a wonderful username. And, as Violet said, you should absolutely not blame yourself! You did not create this health problem. The only thing I could think to add to Violet's list of ideas is heat. You might be get some relief from a heating pad on high. As Violet said, ice is really helpful. I put water in condoms and froze them, wrapped them in a wet paper towel, and placed on my pelvic floor. You could also request a prescription for a strong version of lidocaine cream. I didn't find that helpful, but it's worth a try.

Take care,
April

It is difficult.....I know!

When I read your post, it immediately occurred to me that your problems sounded very much like PGDA or perhaps PSSD. The main evidence for this is that you had increased problems for one or two days after an orgasm. That is typical for PGAD, although often not as little as in your case. This fluctuation - you were better for years, now worse again - also fits with this type of problem.

Let me also say that I am convinced that PGAD is not just about sexual feelings, but also about pain, tingling, itching and all other unpleasant feelings. For me it is a pain disorder and the term PGAD is not correct as it overvalues ​​the sexual feeling. But that is my opinion. Itching is a very typical feeling with PGAD.

Feelings of guilt about having sex at all also arise psychologically, because what is supposed to lead to relaxation causes stress and at some point you no longer know how to deal with your own sexuality.

Please don't feel guilty that you have hurt yourself or that you are a sexual being. Let me explain that scratching is "normal". I know it too. I woke up often in the morning with long scratches on my body. When we sleep, we are in various altered states of consciousness. This is when the nervous system works extremely hard. Sometimes we wake up when the nervous system is so active, but you seem to continue sleeping and feel the itching in your subconscious, until you wake up. This is how scratching occurs. Please protect your genital area.

I have written here several times that I have studied yoga a bit, which knows a lot about the human body. Again and again I'm reading that people with problems in the genital area also have problems in their legs and feet. At the same time, doctors can't find anything and the nerves and spine are often fine. Yoga calls this entire area the 1st chakra. The 1st chakra is in the genital area and goes down the legs to the feet. The problem is that it doesn't always have to be concrete physical pain, but that there is also energetic pain. Trauma researchers are studying this pain, which we also call psychosomatic pain. This also includes tingling and vibrations. Of course, nerves also play a role, but not the damage, but rather the conduction of energy.

Maybe you can do stretching exercises VERY CAREFULLY, perhaps together with a physiotherapist. Here, especially the buttocks, back and inside of the thighs, back of the knees and feet. But please, slowly and carefully and see what feels good. The yoga exercises are not just gymnastics, they primarily serve to "clean" the energy channels. If you have time, go to a breathing therapist or a trained singer who knows a lot about breathing. Good breathing helps to manage the fatigue, nauseous and all problems in the head.

When you sit down, make sure that you always have both feet on the floor and feel your buttocks and the back of your tighs. don't chill, don't lie down if you don't want to sleep. It changes the brain waves and intensifies the symptoms (the same as when you sleep) in the head.

Aristocat