Health Organization for Pudendal Education

clo236 wrote:
I'm just wondering Rosemary, you said that your PN problems started due to a similar reason as mine, did your pain ever lesson/get better and how long?
If I bring up the conversation with my mum she normally just changes the subject, I wish my Dad was here he was always very sympathetic if I was in pain.

I pray to God that some day I can look back at this year/the next few years as a bad phase in my life and that things will get better but I'm feeling doubtful.

Thanks,

Chloe xx

Hi Chloe


Yes my pain started after the vulva edge had been rubbed but in the few weeks prior to this i had had anal surgery to remove a polyp and had a small bartholyins cyst so i am not sure if these have contributed as to why i am as bad as i am now.

At first the vulva was just constantly sore, urine made it hurt each time -then gradually over time it got worse. I started feeling trickling and bubbling and then burning pain - one hot spot got worse - followed by the feeling of something sticking in my vagina and another sharp spiking pain.Then the muscle tightness and one lump feeling which hasn't gone away.Urine still causes irritation each time.

The nerves in my vulva are often misfiring now when irritated and cause pain.

From a nerve block i had i have been told it is not the pudendal nerve as such - i wonder if this is the same with you - the pudendal does have branches off into the vulva though as i understand it.

Sorry Chloe i am just telling you how it is for me as you asked - i am 59 not 19 as you are and when i read your posts i just HOPE for you that you can get better because of your age.
Have you looked at the Vulva Pain Society website - on there they have list about selfcare - wearing cotton knickers, avoiding bubble baths, shower gels etc.

I wish that your mum would listen to you as i can appreciate how difficult it is to sit comfortably and carry on with life as you normally did before - i hope that she doesn't think you are making it all up.We all do silly things at times or do things and don't know the consequences until they occur - your boyfriend rubbing you may well have irritated some nerves quite badly but that may just be my opinion because i am just going by my own experience here.

Take care

Rosemary X

Hi Rosemary,

No I appreciate your honesty as it's realistic of what I can expect, are you still in pain and how long has this been going on for?

'your boyfriend rubbing you may well have irritated some nerves quite badly but that may just be my opinion because i am just going by my own experience here.' I too believe that this caused nerve irritation as the pain started during this.
I just find it so bizarre that this caused this type of pain that I could never have imagined, I mean its a pretty normal thing to happen and noone else gets nerve damage solely from rubbing - it's ridiculous. I mean during this rubbing I didn't have any pain (to worn me to stop) it literally happened in a split second. I don't have a medical history, never had a UTI, no constipation or surgery, obviously never had a child, never any pain down there. Sorry I'm having a proper rant, I turned 20 a few days ago and have never even been properly sexually active whilst all my flat mates are having one night stands, it's just ridiculous that I get nerve damage (I'm not that type of person anyways that would have a one night stand).

I know that area is damaged as I feel pins and needles around the clitoris crus that forms a V shape. The pins and needles are not as bad as when they first happened but are still there.
Does the pudendal nerve innervate the actual vagina not even around the opening but further in as I'm experiencing burning inside only when provoked like inserting a tampon etc on the sides of each wall.

I'm worried like really worried for the future, I can see this giving me further problems like depression I find myself crying alot also getting very angry and my anxiety has sky rocketed since my dad passed away.

I see myself in a few months/year having to get medication for my anxiety which I really really don't want - that's another thing if the doctors have it documented that I suffer from anxiety and have to give me something will they be less likely to believe me in terms of my pain?

My mum does believe me but she thinks if I don't talk about it the less worked up i'll be and it'll distract me from the pain ( it does not).

Thanks (sorry for the massive rant)

Chloe xx

Sorry one more thing to add to that post, can the nerve heal if the damage was done by rubbing?

Thanks,

Chloe xx

Chloe, the pudendal nerve innervates the lower 1/3 of the vagina. I agree with you that normal sexual activity should not cause this type of pain unless there is some underlying cause or contributing factor. Peripheral nerves can heal but if there is some underlying cause (other than sexual activity), the nerve may or may not heal on its own, depending on the underlying cause.

It's a personal choice whether you want to actively pursue treatments such as physiotherapy or just wait it out and hope things calm down over time. But the problem with waiting it out is that if you engage in the same activity again, it seems likely that it will flare things up again and I'm not sure you want to refrain from sitting and from sex indefinitely.

Violet

Hi again Chloe

I posted to you last night and then lost the whole post ! but will try now and keep it shorter before i get timed out again.

My pain has lasted 4years but that isn't to say that yours is going to - i have factors like being postmenopausal to take into account, having just had anal surgery and a small cyst.

Have you looked at the Vulva pain society website where i think they have something about pain on inserting a tampon.

I wonder also if it might be an idea to ask your GP to refer you to a Pain Psychologist rather than say you are anxious and accepting pills - stick to your guns on this one because the help is there but GPs have their budgets to consider. The doctor knows that you have this pain and ought to understand that it causes anxiety.I had 12 sessions with someone on the NHS. I was shown ways to cope with the pain. I was referred by a pain clinic if your GP won't help you.


Also when i went to the pain psychologist i was in a head mess because of family stress before this all happened to me and feeling depressed after it. A lot of stuff came out other than pain talk during the sessions - so this might be an opportunity to talk to someone about your feelings around your Dad too because it is probably all in the mix giving you anxiety and maybe talking to a third party can help.

Rosemary X

Hi guys,

I think I will persue physio and possibly that thing you were talking about earlier Rosemary (didn't know it existed) when I go back to see the pain clinic in August as I hate feeling so helpless. I have a funny feeling it occurred due to rough rubbing and tight muscles as I was under a serious amount of stress when this occurred.

Violet you said
'engage in the same activity again, it seems likely that it will flare things up again and I'm not sure you want to refrain from sitting and from sex indefinitely.' does that mean that sexual activity could cause a pain flare but not necessarily damage the nerve further? I'm so scared about damaging the nerve again. I agree those things are what people do every day and it just isn't an option for me to avoid them indefinitely.

Rosemary sorry for all the questions but has your pain gone after 4 years and were you in a serious amount of pain plus what sort of treatments did you have?

Thanks,

Chloe. xx

Hi again Chloe

Don't worry about the questions - i will try and answer as best i can.

My pain hasn't gone after 4 years and i use the drugs to control it. I was originally given Amitriptyline but because of the side effects this was changed to Nortriptyline - i am less groggy in the mornings on this and i think it is more effective too.

I have also had Gabapentin to take along side the Nortriptyline which is said to better in combination - the pain clinic have advised me to titrate slowly up or down on these drugs according to how they effect the pain and the tolerance of side effects - constipation is one which is best avoided and that can happen at high doses of these drugs. Also there is no point having a mass of drug in your system if it is not effective at a higher dose. Over time i have found the the Nortriptyline is best at knocking out some pain - the Gabapentin made me feel odd and didn't seem to do much so i have titrated down off that for now but will add it back in if necessary.These are the only drugs they will offer me - They would not consider Pregablin which is like Gabapentin but said to be better - mainly i think because it is expensive by comparison.

I was offered a nerve block at the clinic and accepted it there and then so that i didn't have time to go home and think about it. It did not take any pain away and i was told that this indicated that it was not the pudendal nerve. This nerve block was done transvaginally by a gynaecologist and was done unguided - if you read around the forum this is not the best way to have one done as there are guided blocks. I think Violet has already advised you to go down the physio and conservative route before accepting something invasive like a nerve block.

I also saw an acupuncturist at the clinic - you can have 6 sessions on the NHS and i had a few sessions with her privately as well. Nobody at the clinic told me about her - i found her on the internet and then realised that she also worked at the clinic. She helped me with some sore trigger points in my inner thigh and leg at the time but couldn't help the main vulva pain. At one point she was putting needles in the perineum and along the vulva edge - it is not as bad as it sounds.

Acupuncture may be worth a try for you though.

I no longer go to a pain clinic but i used to put roughly on average about 5 on their pain scale chart each time - it is not serious serious pain - just pain and more so in the day when things are being irritated.

I would ask at the pain clinic about acupuncture and seeing the pain psychologist - they aren't going to readily tell you - i have found out that you have to be proactive.

The pain clinic did refer me to a Physiotherapist as well - it was really through her efforts that i got to the pain psychologist.

I am now seeing Ruth Jones physio who is listed on here and does trigger point release physio on tight muscles which i have now around the vulva - the other physio did not do this type of physio at all.

Keep asking at the clinic to see a physio, psychologist or whoever and don't back down until you get it !

Rosemary X

clo236 wrote:Violet you said
'engage in the same activity again, it seems likely that it will flare things up again and I'm not sure you want to refrain from sitting and from sex indefinitely.' does that mean that sexual activity could cause a pain flare but not necessarily damage the nerve further? I'm so scared about damaging the nerve again. I agree those things are what people do every day and it just isn't an option for me to avoid them indefinitely.

Well, if sexual activity is what triggered your pain in the first place I was just wondering if it might happen again next time you have sex. I don't know if further damage would occur but it seems like you are already having an abnormal response to sexual activity which suggests there might be some underlying pathology that's causing it. I guess there is no way to predict for sure if the nerves will heal and you will be able to go back to normal activity. So, in the meantime, while the nerves are healing, you may want to at least have an evaluation by a PT to make sure there aren't some musculoskeletal issues contributing to your problems -- issues that could possibly be corrected. It just depends on whether you want to take a passive wait and see approach, or a proactive approach.

Best,

Violet

Hi guys,

Violet what would a PT check for? I was previously checked for SIJD which I don't have and any leg length discrepancies also negative, pelvic floor when I injured myself could have been tight due to the amount of stress I was under at the time. A few months later I had a gyny exam and didn't have any pain or problems with insertion when they did an internal ultrasound scan of my ovaries like no overtightness of the muscles. I talked to the pain consultant about a physio but I won't see him again till August. I'll definately inquire again. I don't think there are many PN aware physios in UK and Ireland, there might be one in Edinburgh but I wouldn't be back until i'm in Scotland again in September as I can't afford to travel earlier than that.

I had a blip yesterday though and I'm really upset. I'm always extremely careful about my movements to avoid injury but at uni I have a cabin bed (which is a nightmare trying to get in and out of the whole year ), well I was wearing these comfy socks and went to get off the bed but my foot slipped on the wood and I landed a distance of about a few centimetres (not very much) on the wooden ledge so basically my bum landed on it. I am literally petrified that I hit my perineum as it was on the right side. I can't believe this has happened I feel like i'm cursed. I couldn't cope with going backwards or in more pain, like I think it would finish me. I mean how do you know if you've done further damage?

Thanks,

Chloe. xx

Chloe, sounds like you have already had some of the important things checked by a PT -- like the SIJ and pelvic floor. Did you have any physio at all and if so, did it help? If it seemed to help then it is worth pursuing but I know it's very time consuming so it would be difficult while you are at university. Have you had an MRI and what did it show? I think you said something about disc bulges but I don't remember you mentioning anything else.

It would be nice if there were someone you could trade beds with so you don't take anymore spills on the floor.

Violet