Hi I am from Taiwan

[ezer]

Zephyro

Just reading your post again there i think there are some positives

You have only had this for ten months and you say that your pubis has got better so the rest may now heal too.

I was told 2 years with medication for things to get better then to reduce the medication.

You are only aged 25 so i think any irritated nerves have a chance of healing.

Rosemary X

Rosemary, I am really not sure sexual activity can irritate the nerve so permanently.
At this point a dozen people have contacted me to ask about mindbody healing. In EVERY single case the following happened:

A massively stressful period in people's lives followed by a very benign physical incident.

It cannot be a coincidence.
If let's say vigorous sexual activity could trigger PNE then it seems that sex workers would be massively affected. Nerves are not that fragile. I know it seems repulsive and unthinkable to many that our minds could create this terrible pain. But vigorous sexual activity or falling from a couch does not seem like a plausible explanation for years of unrelenting pelvic pain.

To zephyro --I am not diagnosing you and you need to be checked by competent physician(s)-- but I can sense so many terribly upsetting emotions:
Self-esteem issues and regrets over your missed overseas job opportunity. Sense of being disrespected (to put it mildly) and feeling of abandonment due to your ex-boyfriend's behavior.

[Rosemary]

Rosemary, I am really not sure sexual activity can irritate the nerve so permanently.
At this point a dozen people have contacted me to ask about mindbody healing. In EVERY single case the following happened:

A massively stressful period in people's lives followed by a very benign physical incident.

It cannot be a coincidence.
If let's say vigorous sexual activity could trigger PNE then it seems that sex workers would be massively affected. Nerves are not that fragile. I know it seems repulsive and unthinkable to many that our minds could create this terrible pain. But vigorous sexual activity or falling from a couch does not seem like a plausible explanation for years of unrelenting pelvic pain.
.

I am only going by my own experience and what a gynaecologist has told me.

Under a lot of stress when i wasn't really coping with life i rubbed the inside of my vulva on one side (not the cleverest thing to have done) which has caused my nerve pain but added into the mix is the fact that

i was at the time recovering from an anal operation to remove a polyp and i had a small bartholyins cyst at the time.

I was aged 55 at the time and with us women oestrogen levels come into account as it can affect our below bits as we go through the menopause.

A top gynaecologist in our area told me that rough sex could have caused this as well and being postmenopausal is a factor.

However all that to one side - I do believe though that my stress levels at the time and since have contributed to all the pain and muscle tightness and i do hope as you say that this is not permanent - it has been 5 years nearly now.

So i am dearly hoping that this may all be a massive stressful period followed by a benign incident for me too.

It has all been a shock to me that my body is doing this to me and i do realise that i am not in as much pain as some on this forum but pain enough that it is affecting my life.

Some men have written on this forum about over masturbation affecting them and asking about possible PN.

Rosemary X

[ezer]

Doctors do not have training in psychogenic medicine. We expect them to find a "rational" explanation and it is exactly what they deliver. Some doctors believe it is psychogenic but they will never tell you. You would be outraged, walk out, and write a negative review on Vitals or RateMDs. They run a business too.

I was also given my rational explanations: non bacterial prostatitis then PNE using PNMLT, MRN, diagnostic nerve blocks, and a 3T MRI. So seemingly completely rational and believable at the time.

The fact is doctors gave both of us those fancy schmancy diagnostics but that did not resolve our problems.

The men posting about over masturbation must have something else going on in their lives. It is a compulsive behavior and they probably do not disclose some other key issues. People repress a lot by doing that. Things like loneliness, low self-esteem, and many other negative feelings. They are clearly not in a fulfilled and healthy relationship when that happens.

Another mysterious thing is why do we usually wake up pain free or close to pain free? After physical accidents, the pain would affect my sleep badly.
How do we go from debilitating pain to no pain and back to debilitating pain on a daily basis? The nerve is not in such a bad shape if it can recover daily.

[Susanjane]

Rosemary
OK, head on the block here: when you say you rubbed your vulva, is it because you can’t bring yourself to use the ‘m’ word in terms of yourself? I see that you were able to use it at the end of your post when talking about men. Unfortunately, many of us more mature folk were brought up in an era where there was so much more taboo around sex which potentially laid the foundation for that most toxic emotion - guilt. Whatever the reason, as Ezer says, there is no rational correlation between such activity and long term physical and mental suffering. This link might be helpful.

http://www.bboyscience.com/damage-does-not-cause-pain/

Unfortunately, the top gynaecologist who told you that ‘rough sex’ can cause this, delivered you a massive nocebo (the opposite of placebo). I wonder if you would be in the place you are now if he had in fact said the complete opposite - that what you did had got nothing to do with your pain.

If you see my story, I too blamed the benign sexual activity as the cause of all my pain. This is because of our firmly held beliefs that pain must result from tissue damage. When I was at my worst, I was (misguidedly) advised to see a psycho-sexual counsellor who said I may have damaged the muscle(?), merely reinforcing the guilt and catastrophic thinking. I didn’t see him again. Much later, when I eventually saw Dr Baranowski, after hearing my whole story he declared that the physical activity ‘was irrelevant’. Bear in mind he is a pelvic pain expert. I believe that this and finally understanding and accepting what the psychiatrist had told me, was the pivotal moment which gave me the final push to recovery. Please don’t give up. Susanjane

[Rosemary]

Hi Susanjane

Thank you for putting your head on the block because you are right !- i can't use the 'm' word concerning myself - as for guilt - it is an emotion i have in spades for other reasons as well.

I have read through all your posts and see that i did reply to your success story in Power of the Mind - i had forgotten it - you are a similar age to me and i now realise you are in the UK too.

Two and a half years after seeing the top local gynaecologist i saw an NHS pain consultant locally who wrote in a letter back quote "I felt that it was very, very unlikely that her pain was created by her causing irritation in the area" so maybe i should believe him more.

For some of my NHS pain clinic appointments there was a gynaecologist present as well - he gave me a unguided transvaginal nerve block which i can't be sure didn't make things worse for me.

I'm glad that you are so much better - i try not to give up - i'm trying mind/body now.

Take Care
Rosemary X

[Violet M]

Hi Violet,


and the doctor said riding bikes may cause this pain, therefore, could masturbate or orgasm cause this pain?

When I had nerve blocks, I may have few mins relief and the niddle pain comes back soon.
I also asked for the lidocaine cream, should I use it on the labias? I am quite afraid it will irritate more?

Thank you.

Zephyr.

I have used benzocaine cream which is similar to lidocaine and it helps if the pain isn't severe. I did not find it very helpful during the most severe time of my PNE pain. Some people say it burns. I guess you won't know if it works unless you try it.

Many normal human beings masturbate without developing pudendal neuralgia but I think anything done excessively can damage your body. If you already have pudendal neuralgia then sexual activity can flare-up the pain.

I understand that some people's pain is associated with repressed emotions, stress, and feelings of guilt but I don't think that is always the case. My pain is directly associated with increased exercise and physical activity. I can't see any correlation with pain levels and stress or repressed emotions at all. I had a very stressful week at work but no increase in pain levels. If I try to jog or run on the treadmill, etc., I get into trouble.

Violet

[flyer28]

I can also relate to those whose problems were aggravated/triggered after prolonged sex/masturbation. These were also my main triggers in the beginning. But I always completely recovered in initial 1-2 years, so I think that there is following rationale behind that: Of course that rough sex or prolonged masturbation might trigger chronic pelvic pain but it does not mean that your diagnosis is PNE. I asked several doctors (including prof. Aszmann) whether this can trigger PNE, all of them said it is highly improbable. But what is probable: it might trigger process of starting general pelvic myoneuropathy, disbalance of pelvis, true havoc inside there which is further fed up by anxiety, depression etc...which is probably my case as well. Pudendal nerve is of course one of the partying...Of course that I regret that in the beginning I did not start with PT, but took antibiotics several weeks, thinking misleadingly that I have bacterial prostatitis...etc. Having been dependent on the PT I can survive and function, but there are bad flare-ups of course, one of them right now...

[ezer]

flyer28,
You and I have discussed the issue and is my understanding that you have a deep knowledge of psychology. I am sure that you are aware of the works of Bessel van der Kolk and many others. Why are you not considering a somatoform pain disorder for your pelvic pain?

I freely accept, that was my problem. I took antibiotics for prostatitis. I had pelvic floor dysfunction, flare-ups, not so bad periods, horrible periods, and PT would help me too. I can relate 100% to what you write but I wonder why you are looking at it mostly from the physical/PT angle?

[Susanjane]

Dear Rosemary

You said:
" Two and a half years after seeing the top local gynaecologist i saw an NHS pain consultant locally who wrote in a letter back quote "I felt that it was very, very unlikely that her pain was created by her causing irritation in the area" so maybe i should believe him more."

Yes, yes, yes! Make it your mantra (he even used the word 'very' twice!) Hold that thought and keep on thinking it. If you can eventually believe it totally, and assuming the anal surgery and bartholins cyst issues healed normally, it makes sense that the pain was not caused by damage and you can dispense with the guilt surrounding it. Moving on from that, you may then be able to accept that the origins of the pain come from the mind. It almost certainly won’t be a road to Damascus conversion, but something to be chipped away at slowly and surely until you start to notice real changes. By the way, even now are there times when your pain is less, e.g. on holiday or being distracted by something you enjoy? I was always much better when on holiday.

Thank you for responding to my post The Power of the Mind. I see that you have tried all conventional methods without success – well you certainly have nothing to lose by going the mindbody route.

Incidentally, soon after the start of my symptoms when I did what most of us do and started googling, one of the first things I read was reference to ‘rough sex’. I cannot over-estimate how damaging that was at that particular time. What a horrible term, and what does it mean exactly? Did your initial gynaecologist give a definition? As Ezer said, there would be many more suffering women if the nerves are that fragile. Frankly, in this day and age, there is very likely a whole lot of rough sex going on all the time! On that note ……….

Please stay strong
Susanjane x

[Rosemary]

Thank you for your kind reply Susanjane

At the moment i believe more in the mindbody route than anything else so i will keep the mantra - physically to look at my vulva on the bad side has shrunk down where there is muscle tightnesss so i have a way to go i think. The anal surgery healed and although i have pain in the bartolins region - where there are a lot of nerves i think the cyst has gone.

The gynaecologist didn't give his definition of rough sex and i didn't ask him. My husband has been supportive and present at most of my appointments and he has felt at times that the doctors may think that he is responsible for causing my pain when he hasn't at all - it was all my moment of madness. I've had other surgery in the past but didn't handle the anal op and cyst too well - my GP let me down badly by not diagnosing the cyst before i had the anal op. i knew after i rubbed my vulva that things weren't right - it caused a lot of inflammation.

The pain can be less when i watch tv so maybe there is some hope.

Your last sentence did make me smile

Take Care

Rosemary X