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.
Clitoral pain flare up and injury
Re: Clitoral pain flare up and injury
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
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
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Clitoral pain flare up and injury
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
Take care,
April
Re: Clitoral pain flare up and injury
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
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
-
Finding-Strength
- Posts: 3
- Joined: Fri Jan 17, 2025 1:01 am
Re: Clitoral pain flare up and injury
Hi, thanks so much for your replies. I really appreciate your kind words and suggestions and I will definitely look into them. I find it hard discussing this with doctors and I feel a bit overwhelmed with the possibilities of what the cause of my problems might be.
I was referred to a specialist by my GP, who I saw very recently, and diagnosed me with lichen sclerosus. I've always had an itch down there, even as a kid. I remember being a bit itchy, but I just thought it was normal. It was mild for years but got worse over time, and my skin became very red, sore and patchy. The specialist said I have skin changes, damage and scarring. I have been prescribed cream and steroid ointment, which I will use for a few months and see if it helps. The creams are helping with the itching and sore skin, however, it's flaring up my clitoral pain which had settled down for a couple of weeks but is now really affecting me again. Applying it is difficult as even light touch hurts and I can't rub it in, and also just having the cream on that area is painful. The doctor said I have skin changes in the area and I guess scarring too, and she said I need to apply the cream to that area. I'm suppose to apply it daily but it's so painful. I'm going to try using it every other day to see if that reduces the symtpoms. If not, I might have to stop applying it to that area and go back to my doctor.
I wonder, since I've been itchy for so many years, if this has lead to nerve damage, vulvodynia or clitorodynia? I don't know much about persistent genital arousal disorder, or spinal issues. I feel quite clueless, even though I've dealt with this for years. I never had much confidence discussing this with my doctors and they don't seem to know much about this stuff either. Maybe physio would help. I do wonder if years of these issues have caused pelvic tightness too.
Thanks for the suggestions about using heating pads, ice and for the list of doctors. I once asked for a referral to the pain clinic in Manchester but they said it was too far away from where I live. So I know doctors can be reluctant. I can't afford to go private. I just feel lost with this sometimes. When I have pain free days, I try to enjoy myself and make the most of life. When I'm not in a flare up, I can get on with things and kind of forget about it. It's funny how sometimes I feel quite normal, and other times I feel so awful.
Something I've been a bit worried about is my use of hot water bottles. I've used a hot water bottle for many years and I have mottled and red skin patches on my thighs, which has got worse gradually. I'm trying to reduce using the bottle, but I find it such a comfort thing too and struggle without it.
I was referred to a specialist by my GP, who I saw very recently, and diagnosed me with lichen sclerosus. I've always had an itch down there, even as a kid. I remember being a bit itchy, but I just thought it was normal. It was mild for years but got worse over time, and my skin became very red, sore and patchy. The specialist said I have skin changes, damage and scarring. I have been prescribed cream and steroid ointment, which I will use for a few months and see if it helps. The creams are helping with the itching and sore skin, however, it's flaring up my clitoral pain which had settled down for a couple of weeks but is now really affecting me again. Applying it is difficult as even light touch hurts and I can't rub it in, and also just having the cream on that area is painful. The doctor said I have skin changes in the area and I guess scarring too, and she said I need to apply the cream to that area. I'm suppose to apply it daily but it's so painful. I'm going to try using it every other day to see if that reduces the symtpoms. If not, I might have to stop applying it to that area and go back to my doctor.
I wonder, since I've been itchy for so many years, if this has lead to nerve damage, vulvodynia or clitorodynia? I don't know much about persistent genital arousal disorder, or spinal issues. I feel quite clueless, even though I've dealt with this for years. I never had much confidence discussing this with my doctors and they don't seem to know much about this stuff either. Maybe physio would help. I do wonder if years of these issues have caused pelvic tightness too.
Thanks for the suggestions about using heating pads, ice and for the list of doctors. I once asked for a referral to the pain clinic in Manchester but they said it was too far away from where I live. So I know doctors can be reluctant. I can't afford to go private. I just feel lost with this sometimes. When I have pain free days, I try to enjoy myself and make the most of life. When I'm not in a flare up, I can get on with things and kind of forget about it. It's funny how sometimes I feel quite normal, and other times I feel so awful.
Something I've been a bit worried about is my use of hot water bottles. I've used a hot water bottle for many years and I have mottled and red skin patches on my thighs, which has got worse gradually. I'm trying to reduce using the bottle, but I find it such a comfort thing too and struggle without it.
Re: Clitoral pain flare up and injury
That's good that they can treat the lichen sclerosis but it seems like you have more going on than just that.
You said the clitoris is getting smaller. Sometimes hormonal changes can cause genital atrophy but you're pretty young for that. Maybe something to consider though if your doctor thinks it could be a possibility. That's really sad that they won't refer you out to the Manchester clinic. If there's nobody local who treats PN then it makes no sense that they can't refer. I wonder if the staff at the Manchester clinic could give you any help with getting your doctor to refer you. Maybe they would have some suggestions on how to make that happen.
I had a lot of itching with PN and I used capsaicin to help me get to sleep. It can burn a little when you first put it on though so I don't know if it would be helpful for you. But then it calms down the itching long enough to get to sleep. You can get it in patches. Or you could try lidocaine patches. For heat maybe you could try an electric heating pad that you could control the temperature on better than a hot water bottle. Just brainstorming.
If you've never tried physio, it might be worth at least having an evaluation to see if they find anything important that could be contributing to your pain. I couldn't tolerate the internal manual work but it was worth getting evaluated because they discovered things that helped lead me to the diagnosis of pudendal nerve entrapment.
You said the clitoris is getting smaller. Sometimes hormonal changes can cause genital atrophy but you're pretty young for that. Maybe something to consider though if your doctor thinks it could be a possibility. That's really sad that they won't refer you out to the Manchester clinic. If there's nobody local who treats PN then it makes no sense that they can't refer. I wonder if the staff at the Manchester clinic could give you any help with getting your doctor to refer you. Maybe they would have some suggestions on how to make that happen.
I had a lot of itching with PN and I used capsaicin to help me get to sleep. It can burn a little when you first put it on though so I don't know if it would be helpful for you. But then it calms down the itching long enough to get to sleep. You can get it in patches. Or you could try lidocaine patches. For heat maybe you could try an electric heating pad that you could control the temperature on better than a hot water bottle. Just brainstorming.
If you've never tried physio, it might be worth at least having an evaluation to see if they find anything important that could be contributing to your pain. I couldn't tolerate the internal manual work but it was worth getting evaluated because they discovered things that helped lead me to the diagnosis of pudendal nerve entrapment.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Clitoral pain flare up and injury
Hi Finding Strength,
I have just a couple of small points to add to what others have said. You mentioned getting patchy red skin on your thighs from the hot water bottle. I have that too from the heating pad. It is not as bad as it used to be because I use heat less but also because I now wear thick biking shorts with the fabric in the pelvic floor area cut out. That way the heating pad could get directly on my pelvic floor but not directly touch my skin. So you could try something like that to prevent the skin discoloration. But, I wanted to say that I've had this for years and it has not caused me any problems (other than making me reluctant to wear a swimming suit in public). But, you could see a dermatologist about it if you're worried.
You mentioned that your skin changed from the scratching. That seems like it might be more significant. Was the doctor who saw you a dermatologist? I think it could be useful for a derm doctor to look at it. I developed very significant panniculitis from my 24 icing, and it damaged my skin. It went away after I was able to stop icing after my surgery, but I think I may still have a minor residual effects from it (i.e., I frequently get an uptick in pain when even mild soap (Dove for sensitive skin) touches the skin in the shower, and I've started to think that it's due to hypersensitivity in the the nerves of skin tissue not the pn). So, it might be worth seeing a dermatologist about it to see if they have information or suggestions beyond what a pcp could give you.
April
I have just a couple of small points to add to what others have said. You mentioned getting patchy red skin on your thighs from the hot water bottle. I have that too from the heating pad. It is not as bad as it used to be because I use heat less but also because I now wear thick biking shorts with the fabric in the pelvic floor area cut out. That way the heating pad could get directly on my pelvic floor but not directly touch my skin. So you could try something like that to prevent the skin discoloration. But, I wanted to say that I've had this for years and it has not caused me any problems (other than making me reluctant to wear a swimming suit in public). But, you could see a dermatologist about it if you're worried.
You mentioned that your skin changed from the scratching. That seems like it might be more significant. Was the doctor who saw you a dermatologist? I think it could be useful for a derm doctor to look at it. I developed very significant panniculitis from my 24 icing, and it damaged my skin. It went away after I was able to stop icing after my surgery, but I think I may still have a minor residual effects from it (i.e., I frequently get an uptick in pain when even mild soap (Dove for sensitive skin) touches the skin in the shower, and I've started to think that it's due to hypersensitivity in the the nerves of skin tissue not the pn). So, it might be worth seeing a dermatologist about it to see if they have information or suggestions beyond what a pcp could give you.
April