Health Organization for Pudendal Education

Hello again,

Wasn't sure where to post this. I just wanted to ask how you cope with the pain. I can't get rid of mine - I'm on Neurontin (900mg) and I use ice and heat, but nothing helps when the pain gets wild. I'm waiting on appointments, but I need some help before then. When my pain goes up, I don't know what to do with myself and I usually end up getting upset, which is so stupid because I know it makes things worse. It's been nearly 4 months and I can't imagine a lifetime like this. How do you cope? Everyone on here seems so strong. How do you get there? How do you get through it?

When you feel your pain going up, do you have any methods of coping, some way to bring it down before it gets right up there? Are there any meditation or hypnotherapy CDs that work for you? I need to control the fear/panic I get when I feel myself heading towards that top level. I think it's part of my problem that I'm so scared. Is that normal? I worry I'm going a little mad. I've been looking at Tens machines and wondering whether to buy one. What about massage machines? Is there anything that works apart from more drugs?

If you have any advice, I'd be really grateful.

Cassie x

If 900 mg Neurontin isn't controlling it well enough, can you try a higher dose? Or switch to Lyrica? Or add an antidepressant like Cymbalta? Or perhaps just sometimes use a benzo like Valium or Klonopin when things are bad? It's VERY common to need more than one med to manage pain.

I hope you find something that helps make you more comfortable.

Getting extra help is important, although you said 'apart from drugs', as Celeste has suggested, you could up the dose of your current med. I took 2400mgs per day once titrated up. And took Cymbalta along side that too. Eventually I switched to Lyrica instead of the neurontin.
Apart from drugs I know Calluna strongly recommends CAB and a book by Neville Shone (that may not be the correct name I'm sure Calluna will give you better info ) I would honestly give extra medication a try as pain 'wind up' can be a problem and can be stress related to some extent.
take a look at this http://www.pelvicpain.org.uk/index.php? ... nding-pain
Trying to pace activities also helps,my fav thing is a long hot bath.
Take care
Helen

Cassie,

I agree that valium would be a proper choice for you. It relaxes the pelvic floor muscles as well as has an anxiolytic effect.

This is all a lot of information to take in; please don't be hard on yourself. We were all once in your shoes. Once you get on a good med regime and/or stop activities that upset the PN (i.e.lifting, reaching, bending, long walks), you will find yourself at a place of balance.

cari

I was just going to say CBT actually - that's Cognitive Behavioural Therapy. I was lucky enough to be referred to a psychologist fairly early along this road, she helped me a lot both with the anxiety and with pain management. These two are so interlinked that it is impossible to separate them - when you are in pain, you get scared and anxious, these emotional feelings cause physical reactions which actually make the pain worse, so you get more scared, so the pain gets worse still - and round and round it goes, up in a spiral. CBT is about how to break the cycle.

The book by Neville Shone that Helen mentions - I know I keep going on about it, but it is very helpful - it was the psychologist who suggested that I read this, initially I got it from my local library but as I was referring to it so much I bought my own copy. It is called Coping Successfully with Chronic Pain and I got my copy from Amazon.

There is also a CBT workbook that I can recommend, it is called Mind Over Mood. Another one that the psychologist recommended to me, for working by myself.

I would recommend both of these unreservedly - if you are only going to get one, make it the Chronic Pain book.

With regard to meds, you are still on quite a low dose of gabapentin, most people don't start to get any pain relief until the dose is up to 1800mg and lots of people need to go to 2400mg as Helen says, or even 3600mg. Have you tried adding in amitriptyline, or nortriptyline? I really would suggest going back to your doctor and telling her that you need more help.

When the pain spikes, I use breathing techniques that the psychologist told me about, this gives some immediate help. You'll find lots of techniques like this, as well as relaxation sequences, in the Chronic Pain book.

TENS machines are quite good - I do have one - but they aren't your best help for a pain spike, IMO.

The whole reason that I suggested medication is that you do sound like you have understood that your anxiety plays a role in escalating your pain. Many people feel that they tense up if they feel any greater sensation of pain, and the clenching of all of those muscles throughout the body (even unconsciously) just seems to enhance the escalating sensation of pain. I only suggested anti-anxiety meds because they can sometimes keep you relaxed enough that it doesn't get to that point, or they can buy you some time to look into other non-drug treatments. CBT is great, but it takes time to go to sessions and get help. TENS is immediate, but your mileage may vary on how long its benefits last. Guided relaxation is great, but you really need to train yourself on that in the time before you need it; it's something that a lot of women use to help labor pain without meds, but of course they need the practice long before labor ever starts.

When you're in it for the long haul, it can really help to be open to short-term fixes. Just going on a medication isn't some mandate that you have to stay on it forever. While the anti-depressants and narcotics require some tapering of dosages to get off them, low doses of Valium, Klonopin, Xanax and the like can be used as needed. They're just something handy to have in your repertoire.

When I used to think I would go insane and nothing else worked I alternated sitting in hot and cold water. This may sound crazy but I had some plastic crates set up in my bathtub with shallow plastic storage boxes on top of them. I filled one with hot water and one with cold water (even put ice in it ) and sat on a plastic donut cushion or child's floatie ring (pool noodle might work) and tried to read an interesting book while alternating back and forth between hot and cold. If you have internal vaginal pain it may help to insert a frozen ice balloon or condom.

I have numbing, not pain, but if I was in acute unbearable pain, I would take whatever necessary to get relief

I have had pain severe pain following unrelated surgery a very long time ago, so I can relate

Try an opiate, like Vicadin, or Oxycotin..pain brings pain and something strong might break the cycle

With the available Rx's, nobody need to be at that level of pain

People taking opiates for pain, don't get addicted for the most part..just need to titrate down when getting off of them..should not be an issue

Keeping my mind occupied helps, either TV, Internet, crosswords, or phone someone. I take narcotics when necessary - that is, when nothing I do can take my mind off the pain. I find hydromorphone 2mg plus 325 regular tylenol is enough to take the edge off, ad has the least side effects for me. I had bad reactions to morphine and fentanyl patch. Codeine is very constipating and causes me GI pain. Sometimes I will take pain meds so that I can attend some sort of function and not be in agony the whole time.

I also really like a meditation CD by Dr. Daniel Amen called Medical Hypnosis. The disk has several different tracks, including Hypnosis for Sleep, for Pain, and for Anxiety. (It also has one for Peak Performance, but I've never listened to it.) I'm not sure what exactly makes it hypnosis. It seems like relaxation and guided imagery and some breathing practice. Anyhow, I find it helps. He also sells the inidividual tracks for cheaper. Here is a link:
http://store.amenclinics.com/cds?p=3

coping with the pain, or actually not coping any more is a real issue for me at the moment.

I am taking tramadol with panadol, but it just doesn't touch the sides
Tried Gabapentin, it makes me seriously suicidal, so cant take that, Amitryptylene gives me massive freeze dry headaches.

My doctor and specialists wont offer me anything else AT ALL! even though I bawl/plead and tell them most days I feel I just can't cope.
I also do spiritual practices and meditation heaps and am well experienced with this as I am an ishaya monk.
But really there is only so much.

And of course I still don't have a diagnosis!!