New...scared and need advice please!

[Jessicac]

Hey everyone,

I am new to the forum and this is my first time posting, so bear with me I am 22 years old from the UK and just graduated from university and now sadly believe I have PN. My symptoms suddenly started 6 months ago, which consisted of a burning in the vulva, I got prescribed various antibiotics by my GP for a UTI, the culture test came back negative but the symptom persisted. The burning became worse over time and it was accompanied by an ache which spread to my inner thighs. I was referred to a gyn who diagnosed me with vulvodynia and I was given 900mg of gabapentin to take and 20mg of neurotripaline. The gabapentin worked wonders for the burning to a point where it was virtually gone.

However since then the ache has developed and become progressively worse, to the point where I cannot stand for longer than an hour and it is there even at rest. So because of this i have had to terminate my employment as i worked in retail which required long periods of standing. This symptom is also accompanied by an irritated bladder, where I find it difficult to start a urine flow. I also have an ache in my lower back and rectum, whereby my muscles feel extremely tight and constipation is an issue. I can have sexual intercourse, but the feeling is numb and the feeling in my clitorus has decreased. I had an MRI and it showed a bulge in my L5.

Recently I have been seen by doctor de mello in Manchester a specialist in PN. He believes I do not have vulvodynia but is stuck with a diagnosis of PN as I do not have the classic symptom of intolerance to sitting. So he believes i am stuck somewhere in between vulvodynia and PN. He has referred me to a pelvic floor specialist, as he believes it may be muscle related. Does anyone agree with this in relation to my symptoms? This undiagnosed pain has caused me to become severely depressed, to the point where I have become a recluse and have had to seek counselling. It is ruining my life, as i had so many plans after university.I am so frightened that I will not get better, as the symptoms are progressing each day. I cry all the time because i am so young and fear this could be my life now, and i cannot accept it. Does physiotherapy help this issue? How do people cope with the pain? If it is the pudendal nerve, can this heal? And do I have an advantage because I am young? I wish no one had to cope with this pain as it is truly deliberating, my heart goes out to those of you who have suffered from years of this!

Sorry for all the questions and the big post, I am just overwhelmed by this condition and need hope that I can recover. Thank you so much in advance for your help and support.

Jess

[Violet M]

Hi Jess,

Physiotherapy helps some people and it's a good place to start. Will you be seeing at PT who is knowledgeable about pudendal neuralgia (PN)? If they are knowledgeable, they should be able to give you an opinion on what they think of the diagnosis. Most of your symptoms are similar although typically PN patients have some difficulty with sitting. I'm not sure about the bulge at L5 -- that is slightly higher than the pudendal nerve comes off at S2,3,4. The PT should be able to do a pelvic exam and press along the course of the nerve to see if that is tender which could be an indication of PN.

Many people your age have been treated successfully so please keep your courage up.

Best,

Violet

[Jessicac]

Hey violet

Thanks for your reply I am not sure whether the physiotherapist is knowledgable, I am hoping so as it is dr de mello that has referred me to the physiotherapist in his team. The L5 bulge has been overlooked by doctors, as they said that it is not the likely cause of my pain...but what is then? Have you had any experience with physio and how long do you usually notice if it is working? My first appointment is on Monday. Is this right, can it be that my muscles are to tight and are causing nerve irritation? But if physio doesn't work does that suggest entrapment? I try to be hopeful that one day I will be pain free but with PN I worry that it's to optimistic, as am i right in saying that pain develops over time? It was also mentioned that I could have developed a stretch injury because of chronic constipation, I am not sure what form of PN that is and whether it can be cured? Violet you have had surgery, how are you getting on now? Also you said you knew of people my age getting successfully treated, do you know if they are completely cured?

Thank you

Jess

[Joyh]

Hi Jessicac

I`m UK based too and not nearly as knowledgeable as the team on here who`ll give you some invaluable advise- but here goes with my penny worth.
After 10 months of horrible PN symptoms, it`s thought my pain`s coming from my sacroiliac joint and I`m due a steroid injection in the joint. I`m not saying that yours is spine related but all the same, I reckon it`s worth pushing further with that....just in case.
Like all PN-ers I`ve had to jump through all the hoops of seeing urology, gynae etc,and eventually found myself at the pain clinic seeing a `spine` doctor who diagnosed my sacroiliac as the problem.
I also ended up seeing an NHS physio and although she wasn`t PN aware - she emailed her collegues to see who was, and found me one......so seems they are out there
Even though I`m having a steroid injection, I`m still going to see the new pudendal aware PT on Monday. I maybe being a bit previous and my new PT won`t be able to help but I`m determined to chase every chance of getting better.
Whatever you decide, please don`t be scared. You`ve come to the right place, have seen Dr de Mello and they`re all positive steps in the right direction.
What I think I`m trying to say Jessicac is be a nuisance to your GP until he/she sends you for PT - and hopefully your PT will email their collegues to find a pundendal aware one as mine has- and be a nuisance so`s you get to the pain clinic too.
wishing you a speedy recovery
Joy

[Jessicac]

Hey joy

I am sorry to hear that you have been suffering for 10months. Could I please ask what are your symptoms???? because i thought that it may be something to do with my sacroiliac joint? My pain is like an ache not a burn, but I wouldn't know if it was burning unless I came off the gabapentin, as at the monument they are working for burning. Thankfully I have pushed the spine further and have an appointment on Tuesday with a spinal surgeon at bupa hospital.
The reason I am scared is the fear of not getting better, as I have barely started out my life yet. I am glad you are seeing a PT that is PN aware, I hope that they can help with your symptoms. I am seeing my PT also on Monday. So hopefully that's a step in the right direction for both of us

Thank you

Jess

[calluna]

Hello Jessica, and welcome to the forum - although I am of course sorry that you have had to come looking for us!

I am also in the UK, although not near you - I am in the West Country. I have heard good reports of Dr de Mello, you are in good hands there.

The fact that you are so young, and also that there is no specific trauma that brought this on, are factors in your favour with regard to recovery. There are plenty of people who do recover from PN, please be assured of that.

Physio sounds like an excellent place to start. Please do be sure to give your physio feedback as to how you feel afterwards. And if you are offered biofeedback to help with the constipation issues, please do take them up on this, it can be very helpful.

With regard to constipation issues - when you get this under control, it will help. I'm sure you've been given appropriate advice already - make sure you are eating lots of vegetables (fibrous ones, not starchy ones), don't use fibre supplements (they are fine with a minor problem, but when things get bad they can actually add to the problem), and drink sensible amounts of water. Lots of us find Movicol to be useful, or a magnesium supplement. I had a lot of help with this issue from the nurse practitioner at my GP surgery, I think that nurses deal with this more than doctors do. Movicol is very safe and very effective, for example they use it on stroke wards. I'd suggest that you talk to the nurse at your GP surgery, if you haven't really talked to anyone about this yet.

With regard to pain - try ice. If you have a gel icepack with a fabric cover, that's ideal - if you don't, a packet of frozen peas wrapped in an old clean cloth works just as well. You don't want the cold plastic surface actually in contact with your skin. You can use ice for up to 10-15 minutes in each hour. It is very helpful.

And finally - I know you've had counselling, but have you had the opportunity to see a psychologist? - for CBT, not for just 'talking therapy'...? I was lucky enough to be referred to the local psychology service (through my GP) fairly early in this journey - it was free, and I only had to wait two weeks to get an appointment. This lady helped me so much, more than any medication - both with depression and also with pain management. CBT (Cognitive Behavioural Therapy) can help more than you'd believe possible. It won't make the pain go away, of course, but it can provide you with a whole list of things that help you deal with it.

Hang in there, you're not on your own!

[Jessicac]

Hey Calluna

Thank you for your advice, I will definitely be asking my GP about movicol!!

Nice to know that your in the Uk too, but sorry that your having to go through this as well

I am hoping that with my age that this can resolve, as the symptoms just came out if no where. Have you had physio? Do you know how long I would have to wait to see results? As I am supposed to be starting a primary school pgce course in September, which is very intense and with the state I am in now I would really struggle with it.

The CBT you are mentioning sounds really helpful, is your condition improving now then? I will ask my GP If I can be referred over to this programme of care. Thank you for your understanding, I am so glad I have found this forum, as not many people understand the pain I am going through.

Hope your having a good day today!

[calluna]

I've not had physio - in my case it wouldn't make any difference, the PN started after a gynae surgery where it seems that the pudendal nerve was damaged. Physio wouldn't be able to help with that so I have not been offered any.

With regard to physio, I think you will have to wait and see how long it takes before you start to feel some difference. Talk to your physiotherapist, give him/her as much info as you can, and ask lots of questions! Dialogue is good...

With regard to your teaching course in September, that's a long way away, lots can change before then. I'd suggest that you talk to the physio about this as well.

There are many medications that help with neuropathic pain, different people prefer different meds. If you reach a point where you want more pain relief then I am sure that your GP will be happy to prescribe one of them. Here is a link to an information leaflet from NICE about drugtreatments for neuropathic pain, which you might find helpful. And here is another link, this one is to a quick reference guide, again from NICE, about management of neuropathic pain.

Good idea to talk to your GP about the constipation - but you may find that you get more help and support with this particular issue from the practice nurse.

And yes, CBT. For me, this was what pulled it all together. I did not find it easy at all, especially at first, but I use it every day now.

Remember the ice!

[Jessicac]

Calluna! Thank you for your advice. I shall defiantly be explaining everything to my physiotherapist on Monday! I have read the links about the drugs, and they are very helpful, I don't know whether I need to change my drugs, as I am not sure where the horrific ache is coming from. I thought that if it was a nerve the pain would be more of a burning, tingling, shooting pain, mine is like a muscle ache, so doesn't that suggest that is it something to do with my muscles in this area? I am hoping that it is the muscles causing the nerve to be irrated, as that would be better for recovery??? As when i take a muscle relaxant it takes the edge off the pain.

I was wondering do any of you know young people that have recovered? I just have the worst anxiety over this condition with worry that I will not get better. I try to stay hopefull but it's hard in the first stages of this condition.

Calluna thank you soooooo much for the ice suggestion it did ease my pain tonight, I wish I could take one in my bag for my primary pgce interview tomorrow!

Also I have been using hot water bottles which also help with pain!

[Meliora]

First of all congratulations on your graduation from school! That is a wonderful accomplishment.

It is heartbreaking that you have to go through PN right out of college. I really am sorry you are dealing with this. You mentioned having tight muscles. I have been using Baclofen and it helps with muscle spasms. You can take it orally to help spasms all over, or vaginally (as I now do.) I like the vaginal suppository better because the medicine goes right to the source of the problem. I also have had some luck with ibuprofen for inflammation (prescribed by my doctor, as it is buffered and has a stomach acid reducer as well.) Muscle spasms are awful. I just had botox and will let you know when it takes effect if it helps at all.

I am glad you have a counselor to talk with. PN has drastically changed my life in all areas, and sometimes it's good to have someone that will listen. I have had more than one doctor that recommended counseling because of the issues/pain surrounding PN.

Take care and feel free to message me if you ever need to vent or chat! I am pretty much at home (unless I have a driver!) I cannot sit these days to drive.