Help ! Please

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Help ! Please

Postby Weebsy » Mon Nov 18, 2013 12:02 am

Hello I'm a 20 year old. Female


I've been having this horrible pain for a year now and only recently has it gotten worse all I know is that I stimulated my clit and after that I went to the toilet multiple times whenever I went to the toilet I felt like I needed to pee it felt like a painful orgasm afterwards since then the feeling didn't go it turned into a nightmare and I was able to forget about it by constantly distracting myself I've had enough and I went to the doctors twice both at which they said it could be uti I thought ok perhaps this is a uti since then it's only gotten worse I' don't know how I've coped with this for a year but I've been too embarrassed to go back and thought this was all in my head


I feel ashamed writing this but I seriously believe I've caused some damage I've never used a vibrator and since then I've been having this peeing urge 24 hours a day kind of feeling it never goes I live in the UK and ive been to the doctors many times the problem is I feel angry and don't come back to then even though I told them I've been having this for a long time but they always give me antibiotics thinking it's a uti so I've lost hope in them and now I'm just in pieces and at my darkest moment in my life recently I've contemplated suicide that's how bad this is affecting me I feel broken and ashamed to talk to my parents about this they are very conservative and it's causing me to feel isolated most of the time I don't go outside I stay in my room crying this never goes away I'm sick of it I can't sleep it never switched off

I want to chop it off I know this sounds bad but it's more of a nuisance than a blessing for me I wish I never touched down there i don't want to be in a relationship because of this I feel like a freak

I don't even know what to do or where to begin all I know is I think I've damaged something and since then it's been giving me this feeling of needing to pee a lot and these strange sensations I'm scared and lonely at the moment I want to go uni And study nursing as it's my passion to help others but now I would rather stay in my house under the covers with some ice

I've been having these issues on and off ever since I was 15 as hard as this is to explain it was more of a background type of pain hardly noticeable it never really affected me I thought it was normal but since then I continued to touch there resulting in this nightmare

I'm soo confused I don't know where to go next or how to deal with this I don't want to end up killing myself but sometimes I have the feelings to. Especially when you don't know what is wrong with you

I've done some research and I think I have damages my puedendal/dorsal nerve this is only a theory currently the doctors still believe this is not possible even though I told them that this is nerve damage because of my symptoms the constant burning pain and the frequent visits to the bathroom sometimes it feels like an electric shock shoots through my body which scares me the only thing is that I don't find the feeling to get worse when I sit down it feels the same regardless so I'm doubting it's an entrapment so I don't know currently I'm lost

My siblings think I'm a hypochondriac the amount of times I've been to the doctors :( so I'm scared to go now cuz my parents will wonder why I'm going all the time and I really don't want to tell them

Oh and if I ever become pain free I want to help people with chronic pain :)

Sorry about my grammar I just feel really down to care about full stops

Please help !
Weebsy
 
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Re: Help ! Please

Postby Violet M » Mon Nov 18, 2013 12:50 am

Welcome to the forum. First of all you are not a freak but most likely have a medical condition. Sexual behavior is normal so please forgive yourself and focus on getting treatment.

One of my symptoms early on was the feeling of needing to pee frequently. An antidepressant medication helped that symptom quite a but. There are several different types of antideprsessants and it's a matter of trial and error to find the right one that helps. Pregbalin or gabapentin might help the burning pain at least for now until you can get the correct diagnosis and treatment. I don't know if your GP would prescribe these or you might have took go to a specialist -- like a pain doc or pudendal neuralgia specialist. Did you see the list of docs on the website at pudendalhope.org? You could try some Emla cream or over the counter benzocaine cream like extra strength vagisil.

Hopefully some of Uk members will reply and suggest health care providers near you.

Take care,

Violet
Last edited by Violet M on Sun Nov 24, 2013 7:15 am, edited 1 time in total.
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.
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Re: Help ! Please

Postby Weebsy » Mon Nov 18, 2013 8:08 pm

Thank you I will ask my GP about the medicines you recommended I truly don't know if he can prescribe them though nevertheless it doesn't hurt to ask. Thank you for your advice I'm just worried because I don't think this condition is well known :? especially in my city but I'm truly grateful for your help I don't know where to begin my journey I've booked another appointment with my gp but it's soo busy I won't see him till 4th December which sucks. So far my pain I can ignore have been doing that for a year I don't know how I managed it lol

But I truly can't see myself ignoring this pain forever I would go mad at some point in my life

Thank you :)
Weebsy
 
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Re: Help ! Please

Postby calluna » Mon Nov 18, 2013 11:17 pm

Hi there - and welcome from me as well.

I'm in the UK too. You are doing the right thing seeing your GP, he is the right person to be prescribing for you. As you've had lots of courses of antibiotics for your pain and none of them have helped, hopefully it will be recognised that there is something else going on.

Could I just emphasise - it is really important, if your GP gives you some medication, and it doesn't help, you absolutely must go back and let him know. This is not an easy thing to treat at the best of times, and it often needs some trial and error to get the right medication. Feedback, very necessary.

Anyway! There is lots of help to be had. You won't find Emla cream at a UK pharmacy (or at least I have never found it - it is a cream with local anaesthetic in it) and you won't find extra-strength Vagisil either (same thing) but you will find ordinary Vagisil. This stuff has some local anaesthetic in, and you might find it helpful. And you've discovered ice already - that's even better, of course.

And whilst I think about it, I will give you a link to the NICE guidelines quick reference guide to the treatment of neuropathic pain, in case it is useful This sounds as if it is going to be appallingly boring but it is quite short and it is also really useful, do have a look at it.

Please do be completely open with your GP about all your symptoms - and that means, do also tell him about the suicidal thoughts you have been having. This is really important.

You might want to ask if you can be referred to see a consultant who specialises in problems relating to the pudendal nerve. There are four consultants in the UK with an interest in this - there is Dr Baranowski and Dr Curran who are both in London, Dr Greenslade in Bristol, and Dr de Mello in Manchester. I don't know whereabouts you live? - just pick the nearest one!

Stay in touch! You aren't on your own now.
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Re: Help ! Please

Postby Weebsy » Tue Nov 19, 2013 12:17 pm

Thank you soo much I live in the West Midlands I'm just a bit worried as most of these consultants are in other cities :( I think I'll have to tell my parents I've been living in pain and keeping this secret for soo long. I'm scared on how I should approach this topic to them I don't want to worry them I certainly don't want to say where my pain is :( I don't know why but I'm already ashamed about what I have

But medication to ease the pain whilst I have the courage to tell them is the best way forward right now this pain is dominating my life I am starting uni next year I'm already stressed :D
Weebsy
 
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Re: Help ! Please

Postby calluna » Tue Nov 19, 2013 4:31 pm

Unfortunately most of us have had to travel some distance to see a consultant - some people have really long journeys. It is not ideal, but there are more doctors now than there were ten years ago - things are progressing slowly...

Your GP can prescribe meds that will relieve the pain, as you will have seen from the NICE guideline leaflet. There are quite long waiting lists to see these consultants on the NHS.

Please don't be afraid of talking to your parents. They will have realised by now that something is amiss, and I am sure that they will want to help you. With regard to worrying them - well, I'm old enough to be your mother - indeed, I'm old enough to be your grandmother, now that I come to think about it! - and you haven't shocked me. And with regard to saying where the pain is, you can just say that it is pelvic pain, would that be ok? The rest can stay between you and your doctor.

One suggestion - something that I find helpful when I go to see the doctor is to have a list of things that I want to mention. It is most annoying to realise afterwards that I have forgotten something, especially after having had to wait a while for the appointment, so a list has become vital. So I'd recommend that to you - having a list, I mean.

You could also print off the page with the list of symptoms to show your GP, here and tick off the ones that apply to you. Maybe it would be helpful. Not everyone has every symptom listed, not by any means.

I do hope that you feel able to talk to your parents soon.
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Re: Help ! Please

Postby Weebsy » Tue Nov 19, 2013 6:18 pm

Sorry to ask this dumb question when you say consultants which field ?

After my doctors I will tell my mother I will not make it sound like it's some scary disease :) that will shock her also is this pn or pne a long term condition ? I'm over the initial shock stage and I just want to try and fix this the list you mention I found to have a lot of symptoms :) that match what I'm going through right now which is kinda a relief before I was wondering what I had I thought I had broken something never knew this nerve could cause soo much distress

I will print out the handout and I will tick my symptoms I will then see what my next phase is. I don't know where to begin I'm sorta lost I have noticed that I tend to clench my pelvic muscles a lot I mean sometimes I relax them then moments later they are clenching again how weird what do you think causes that ? I try and relax them at least 10 times in one day then give up
Weebsy
 
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Re: Help ! Please

Postby calluna » Tue Nov 19, 2013 9:42 pm

It's not dumb to ask questions! ;)

Consultants who specialise in pudendal nerve problems may work in different fields. Dr Baranowski is a urogynaecologist. Dr Curran is a consultant in pain medicine, she's at the National Hospital for Neurology and Neurosurgery in Queen's Square, Dr de Mello and Dr Greenslade are both consultants in pain medicine and consultant anaesthetists. This is all on the main website - here.

PN, remember it basically just means Pudendal Neuralgia. (PNE - really the only way for someone to know that they have pudendal nerve entrapment is for a surgeon to actually see it. So don't worry about that at all, not necessary.) Will your condition be longterm? - not necessarily. You are very young, and this wasn't caused by any particular trauma - no accident, no injury - so you've got a good chance of everything settling down again.

It's interesting that you mention that you are aware of clenching your pelvic muscles. Many people with PN problems have very tight pelvic floor muscles and sometimes physio can really help with this. You might want to mention this to your GP?

I think it is important that you don't give up with this - relaxing the pelvic floor, I mean. I'm sure you know that after women have given birth, they are given exercises to do, in order to help the pelvic floor muscles to tighten up again - these are sometimes called Kegel exercises. You might find it interesting to know that people with PN problems invariably find that Kegels exercises make their pain worse - if we get referred for physiotherapy, one of the things we have to watch out for is that the physio doesn't try to make us do Kegels.

Anyway - maybe just keep going with the relaxing, whenever you noticed that you've clenched up again. And bear in mind, pain does cause muscle tension. We can't help that. Once you and your GP get the pain under control, you might find that the clenching isn't happening so much, hopefully. And in the meantime, don't worry about it, just relax when you notice it. :)

With regard to what to do next - make yourself a list of what you want to talk to your GP about? And have a bit of a read through the main website here, perhaps. The FAQ might be a good place to start. Don't get scared though, there is a huge amount of info there!

I hope that you have a better day tomorrow, anyway. :)
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Re: Help ! Please

Postby Weebsy » Wed Nov 20, 2013 12:11 pm

Thank you for your help I will continue to relax my pelvic muscles but when I tend to relax these muscles it feels like I have to pee :( so I clench up again well today at work I tried to keep in mind not tense up it's pretty hard I find that I'm tensing my thighs if i relax my pelvic muscle so strange

The pain is unnoticeable sometimes I can work and do my day to day tasks but sometimes when I concentrate on what's going on it's like a throbbing sensation as well as an internal slight burning kinda like a bee sting that gets itchy constantly being stung :) soo weird thankfully it only hurts in one place stimulation is a big no no because it irritates me more I go to the bathroom a lot and the burning intensifies for a whole day not worth the pleasure in my opinion so I have stayed of touching that region till I find out what's wrong with me :) which is ok luckily I'm
Not in a relationship but I'm
Scared that my future partner and I won't enjoy a great sex life that this will become a burden to me :(

I can't wait to go to my gp I'm excited I know it's weird but oh well I'm already writing down a list for my go I hope I get better :) hate to think that this is permanent damage :( I mean if that's the case what do patients do ?
Also what pelvic floor therapist should I ask my doctor to refer me to ?

I hope to at least be able to continue to study nursing with a little pain relief and hopefully not make soo many trips to the toilet as I find that often embarrassing it's like my bladder doesn't know what it's doing :D

Are you feeing any better ? This is all
New to me but I find this condition fascinating I've researched about the peudendal nerve and it's really interesting how one nerve functions basically all our things we take for granted :)

Is the medication beat route forward but won't the body get it after long term use ? I'm scared of taking medication that will be long term especially of I have to up the dosage :(

I'm feeling ok today I've come to terms with why I've got I'm
Exercising more eating more healthy and basically distracting myself as much as possible if I don't then I will notice the pain straight away which is annoying
Weebsy
 
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Re: Help ! Please

Postby calluna » Wed Nov 20, 2013 8:50 pm

You do sound more cheerful! I'm so sorry that you've had to put up with this all by yourself, for so long.

Look - with regard to the future, there is no point worrying too much about things that might or might not happen. After all, you don't really have any sort of diagnosis yet. Perhaps better to take things a day at a time, don't you think?

You ask about pelvic floor therapists. These are few and far between in the UK, as you'll have seen from the main website. I think you should wait and see what your GP suggests. Maybe you can get a referral for some local physiotherapy. But he might want to get the pain under control first. He really is the best person to decide.

I am feeling better, yes - thankyou! Basically I've got my life back again.

You mention the possibility of the body getting used to medication if it is taken longterm - actually, the sort of meds that are taken for neuropathic pain just don't work that way. In fact, it is sometimes possible to reduce the dose over time. I'm in the middle of doing this at the moment.

Its good to hear that you are feeling a bit better about life in general. Take things gently now, and just be kind to yourself. :)
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