Hi Everyone,
I recently wrote a post and now I wanted to know if anyone out there has clitorodynia? I'm wondering if that's what I have. If you do, could you please describe the kind of pain you have and where you feel it? Also, when I get upset or angry (which has happened recently with me) it feels like my clitoris is being pinched (like a tweezer is hanging on it) and I get painful spasms on it or near it. Yesterday, I was so angry with my mom and it became apparent to me that my vagina was starting to burn up and the clitoris pain was getting worse and worse. (tension) My right hip area gets really tense too during those angry times. Can anyone relate to what I'm describing? I do not normally have pain right on the clitoris (only when I'm angry or upset). My last post describes my situation in detail and the kind of pains I feel all the time. Thank you!
Jeanne
Pain near clitoris (and elsewhere)- Clitorodynia?
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Pain near clitoris (and elsewhere)- Clitorodynia?
Hi Jeanne,
I'm sorry I must have missed your previous post. . . .I have never heard of clitorodynia, I didn't realise that this could happen exclusively I suppose.
I would say that this medical term is something that doctors say to give a 'diagnosis' but that 'diagnosis' doesn't explain why the problem happens. They are just telling you that you have pain in the clitoris, and you already knew that!
The thing to try to work out is WHY this happens and your description of how the problem arises does give some significant clues. I don't know what therapies you have had so far but I would take a look at the home pages here, go to physiotherapists. .. .hopefully there will be someone close by, if not ring the closest and ask if they know anyone i n your area. From your description of how the pain manifests itself, I think you will find pelvic physiotherapy very worth while . I does sound as if you hold a lot of tension in your pelvic floor, you possibly don't have a clue that this is happening. .. . it's just your natural reaction to life stresses.( Mine is between my shoulder blades)
I would hope that you get significant improvements from pelvic physio but make sure that they are pudendal neuralgia aware, everyone on the list on the home pages will be of course.
This link is relevant to your problem Hi Jeanne,
I'm sorry I must have missed your previous post. . . .I have never heard of clitorodynia, I didn't realise that this could happen exclusively I suppose.
I would say that this medical term is something that doctors say to give a 'diagnosis' but that 'diagnosis' doesn't explain why the problem happens. They are just telling you that you have pain in the clitoris, and you already knew that!
The thing to try to work out is WHY this happens and your description of how the problem arises does give some significant clues. I don't know what therapies you have had so far but I would take a look at the home pages here, go to physiotherapists. .. .hopefully there will be someone close by, if not ring the closest and ask if they know anyone i n your area. From your description of how the pain manifests itself, I think you will find pelvic physiotherapy very worth while . I does sound as if you hold a lot of tension in your pelvic floor, you possibly don't have a clue that this is happening. .. . it's just your natural reaction to life stresses.( Mine is between my shoulder blades)
I would hope that you get significant improvements from pelvic physio but make sure that they are pudendal neuralgia aware, everyone on the list on the home pages will be of course.
This link is relevant http://www.psychologytoday.com/blog/ove ... -dichotomy
From what you have described I would hazard a none medical guess that the tension in your pelvic floor is something that happens generally?? and when things give you more grief, that is the trigger to cramp them up even more, so the dorsal branch of your pudendal nerve gets irritated and causes this pain.
I would say that you will need to work with the physiotherapist to get the muscles to relax and stay relaxed. Hopefully that is all the treatment you should need to fix the problem, although you may want to try some medication too. . . . I would think that pelvic physio is definitely your first step
Btw I have a form of clitorodynia too (who knew
!?!!) , although mine only happens with touch and pressure and I get a zinging nerve pain, across the top,back of my thigh! (very weird!)
Take care
Helen
I'm sorry I must have missed your previous post. . . .I have never heard of clitorodynia, I didn't realise that this could happen exclusively I suppose.
I would say that this medical term is something that doctors say to give a 'diagnosis' but that 'diagnosis' doesn't explain why the problem happens. They are just telling you that you have pain in the clitoris, and you already knew that!
The thing to try to work out is WHY this happens and your description of how the problem arises does give some significant clues. I don't know what therapies you have had so far but I would take a look at the home pages here, go to physiotherapists. .. .hopefully there will be someone close by, if not ring the closest and ask if they know anyone i n your area. From your description of how the pain manifests itself, I think you will find pelvic physiotherapy very worth while . I does sound as if you hold a lot of tension in your pelvic floor, you possibly don't have a clue that this is happening. .. . it's just your natural reaction to life stresses.( Mine is between my shoulder blades)
I would hope that you get significant improvements from pelvic physio but make sure that they are pudendal neuralgia aware, everyone on the list on the home pages will be of course.
This link is relevant to your problem Hi Jeanne,
I'm sorry I must have missed your previous post. . . .I have never heard of clitorodynia, I didn't realise that this could happen exclusively I suppose.
I would say that this medical term is something that doctors say to give a 'diagnosis' but that 'diagnosis' doesn't explain why the problem happens. They are just telling you that you have pain in the clitoris, and you already knew that!
The thing to try to work out is WHY this happens and your description of how the problem arises does give some significant clues. I don't know what therapies you have had so far but I would take a look at the home pages here, go to physiotherapists. .. .hopefully there will be someone close by, if not ring the closest and ask if they know anyone i n your area. From your description of how the pain manifests itself, I think you will find pelvic physiotherapy very worth while . I does sound as if you hold a lot of tension in your pelvic floor, you possibly don't have a clue that this is happening. .. . it's just your natural reaction to life stresses.( Mine is between my shoulder blades)
I would hope that you get significant improvements from pelvic physio but make sure that they are pudendal neuralgia aware, everyone on the list on the home pages will be of course.
This link is relevant http://www.psychologytoday.com/blog/ove ... -dichotomy
From what you have described I would hazard a none medical guess that the tension in your pelvic floor is something that happens generally?? and when things give you more grief, that is the trigger to cramp them up even more, so the dorsal branch of your pudendal nerve gets irritated and causes this pain.
I would say that you will need to work with the physiotherapist to get the muscles to relax and stay relaxed. Hopefully that is all the treatment you should need to fix the problem, although you may want to try some medication too. . . . I would think that pelvic physio is definitely your first step
Btw I have a form of clitorodynia too (who knew
!?!!) , although mine only happens with touch and pressure and I get a zinging nerve pain, across the top,back of my thigh! (very weird!)Take care
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Pain near clitoris (and elsewhere)- Clitorodynia?
Thank you so much Helen for your note. I have seen countless doctors (I thought of clitorodynia on my own) and no one has any clue around here about vulvar pain. I have not gone to a physiotherapist yet (I'll have to read about what that means). I have tried many meds and they didn't help me at all. In my post, I talk about ways (including vibrators) I might have gotten this. My main symptom is usually only with touch and feels like needles all over the outside of my vulva. I have noticed recently though that behind my right thigh, in the mid-inner thigh I have a zinger nervy pain too. (is that pudendal related?) And the upper inner thigh is really tight. I have had vaginismus my whole life, so I have been holding in tension in my pelvic floor forever anyway. I am very tight throughout most of my body. I have neuralgia symptoms, but I don't have any problems with sitting. What exactly do you know about the zinger feeling in the back of your thigh?
Jeanne
Jeanne
Re: Pain near clitoris (and elsewhere)- Clitorodynia?
I just looked up what a physiotherapist is and it says it's the same as a physical therapist. I have seen many and one which was usually very good, but after she pressed down on my labia (which I then quickly asked her to stop doing because it will make it worse) she said just relax into it and breathe. I had extraordinary added pain there (when you have allodynia any kind of strong pressure will make it a lot worse) for about 6 weeks after that. The lightening storm in those areas fired loudly and very angrily back at me after that. But I have done PT exercises in a book which hopefully will help my tight pelvic floor.
Jeanne
Jeanne
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Pain near clitoris (and elsewhere)- Clitorodynia?
I associate my line of nerve pain at the top back of my thigh as the perineal branch of the post femoral cutaneous nerve. I'm having stupid internet problems at the moment so can't seem to post any links but I have explain my back of thigh pain very recently in another thread. I will try and find it when internet weirdness is resolved.
Here it is
http://www.pudendalhope.info/forum/view ... =17&t=4803 a few posts down.
I definitely do have post femoral cutaneous nerve entrapment PCFN (mine is at piriformis level) as the whole of the back of my thigh, which is innervated by that nerve is densely numb. I have other areas of numbness but this part is completely 'dead', whereas I can eventually feel a pin prick or heat say, in my bum, I can't at all there.
Maybe the PCFN is your or part of your problem too, definitely worth while checking out.
Take c are,
Helen
Here it is
http://www.pudendalhope.info/forum/view ... =17&t=4803 a few posts down.I definitely do have post femoral cutaneous nerve entrapment PCFN (mine is at piriformis level) as the whole of the back of my thigh, which is innervated by that nerve is densely numb. I have other areas of numbness but this part is completely 'dead', whereas I can eventually feel a pin prick or heat say, in my bum, I can't at all there.
Maybe the PCFN is your or part of your problem too, definitely worth while checking out.
Take c are,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Pain near clitoris (and elsewhere)- Clitorodynia?
Thank you Helen.
Re: Pain near clitoris (and elsewhere)- Clitorodynia?
Hi Jeanne, so sorry that you are still in such pain, it must be very difficult for you. I remember your first post. And no I've never heard of clitorodynia either. When you posted before you had a list of symptoms -
nerve pain in the mons pubis and the upper outer part of the labia majora
vulvar/vestibular papillomatosis - inflamed and painful to the touch - where is this, by the way? is it in/on the labia minora?
and clitoral pain together with a stuck clitoral hood
If I recall correctly you've tried physiotherapy (sorry, physical therapy on your side of the Atlantic, means the same thing of course) with a PN-aware PT, which caused you a lot of pain for weeks afterwards. And you'd also tried gabapentin, pregabalin/Lyrica, amitriptyline, and duloxetine/Cymbalta, none of which had any effect at all. And you were wondering about trying nortriptyline.
You were also waiting to see a vulvovaginal dermatologist to see if they could suggest anything helpful - if I recall correctly, you hadn't had a test to confirm papillomatosis? or have I got that wrong (I am always getting things wrong
so if I've got this wrong I apologise in advance! ) And hopefully he'd be able to see about why the hood is stuck, too.
And you also mention right hip tightness.
Anyway!
Pain in the mons pubis and the upper outer part of the labia majora is from the ilioinguinal nerve. I'd normally suggest starting by seeing a good PT but you've already tried that so I'm at a bit of a loss.
Vulvar/vestibular papillomatosis and the stuck clitoral hood should be addressed by the vulvovaginal dermatologist - did you get your appointment yet? I do hope they don't have you waiting too long.
Now, pain relief. To be honest if you've given all these meds a good trial at appropriate doses, and for an appropriate time - then if this is nerve pain then it is a bit of a mystery why you've had no help at all.
(Nortriptyline has much the same effect as amitriptyline to be honest, it has less side effects, that's the main difference. If amitriptyline had no effect, it is unlikely that nortriptyline would be any different.)
Do you feel that your pain doctor has been managing all this appropriately? I really hope that someone has been looking after you properly through all this, because you've had a difficult journey and it sounds as if you don't have effective pain relief running at the moment.
I remember you were asking (just before I temporarily dropped out due to work-related deadline insanity) - if a nerve had a physical irritation or constriction which was causing the pain, how could a medication relieve that pain? - even though the physical constriction/irritation was sitll there?
This is a situation that we all deal with, we've all got something wrong with the nerve, but most of us don't know exactly what the problem is. But yes, the meds do still relieve pain. After all if someone has a broken leg, if they are given appropriate amounts of morphine then they are no longer in pain - they still need their leg fixing though. Meds which are used for nerve pain are different of course. And it can be hard to find a combination that works well.
And at this point I will stop, as this post is quite long enough already!
nerve pain in the mons pubis and the upper outer part of the labia majora
vulvar/vestibular papillomatosis - inflamed and painful to the touch - where is this, by the way? is it in/on the labia minora?
and clitoral pain together with a stuck clitoral hood
If I recall correctly you've tried physiotherapy (sorry, physical therapy on your side of the Atlantic, means the same thing of course) with a PN-aware PT, which caused you a lot of pain for weeks afterwards. And you'd also tried gabapentin, pregabalin/Lyrica, amitriptyline, and duloxetine/Cymbalta, none of which had any effect at all. And you were wondering about trying nortriptyline.
You were also waiting to see a vulvovaginal dermatologist to see if they could suggest anything helpful - if I recall correctly, you hadn't had a test to confirm papillomatosis? or have I got that wrong (I am always getting things wrong
so if I've got this wrong I apologise in advance! ) And hopefully he'd be able to see about why the hood is stuck, too.And you also mention right hip tightness.
Anyway!
Pain in the mons pubis and the upper outer part of the labia majora is from the ilioinguinal nerve. I'd normally suggest starting by seeing a good PT but you've already tried that so I'm at a bit of a loss.
Vulvar/vestibular papillomatosis and the stuck clitoral hood should be addressed by the vulvovaginal dermatologist - did you get your appointment yet? I do hope they don't have you waiting too long.
Now, pain relief. To be honest if you've given all these meds a good trial at appropriate doses, and for an appropriate time - then if this is nerve pain then it is a bit of a mystery why you've had no help at all.
(Nortriptyline has much the same effect as amitriptyline to be honest, it has less side effects, that's the main difference. If amitriptyline had no effect, it is unlikely that nortriptyline would be any different.)
Do you feel that your pain doctor has been managing all this appropriately? I really hope that someone has been looking after you properly through all this, because you've had a difficult journey and it sounds as if you don't have effective pain relief running at the moment.
I remember you were asking (just before I temporarily dropped out due to work-related deadline insanity) - if a nerve had a physical irritation or constriction which was causing the pain, how could a medication relieve that pain? - even though the physical constriction/irritation was sitll there?
This is a situation that we all deal with, we've all got something wrong with the nerve, but most of us don't know exactly what the problem is. But yes, the meds do still relieve pain. After all if someone has a broken leg, if they are given appropriate amounts of morphine then they are no longer in pain - they still need their leg fixing though. Meds which are used for nerve pain are different of course. And it can be hard to find a combination that works well.
And at this point I will stop, as this post is quite long enough already!
Re: Pain near clitoris (and elsewhere)- Clitorodynia?
Thanks for your interest in me and your note, Calluna. I called a vulvovaginal dermatologist across the country and then was given a doctor's number to call on my side of the country in California. I was told there that they don't know of anyone in Washington State who has that title. I googled it and came up with nothing. I might just find a recommended gynecologist for vulvodynia in the internet, but am not sure a fifth one (only the last one diagnosed the bumps) in the past 2 years will be anymore helpful or not. One thing I noticed though recently was the bumps really burned (and my clitoris hurt) when I was upset with my mom. They directly get more inflamed when I get upset, which I found interesting. I don't have a doctor that continues to work with me. My main doctor is really nice, but he hasn't done any added research for me. I am the only one researching this, but this support group here has been wonderful. I just wish I could find someone here who has the same or similar symptoms as me. Thanks Calluna for your support!
Jeanne
Jeanne
Re: Pain near clitoris (and elsewhere)- Clitorodynia?
Here's a scholarly article on the topic, Jeanne. Near the end it lists several causes of clitorodynia.
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: Pain near clitoris (and elsewhere)- Clitorodynia?
Thank you for showing me the article, Violet. I don't really have those symptoms. It's the constant feeling of allodynia when touched all around it and I notice that the clitoris itself only hurts when I'm really upset. I think that part is from tension.
Jeanne
Jeanne