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[Sarajoy]

Hi all,
Just a quick update. I was considering cutting back on the amitriptyline but fear got the better of me so I am continuing on 30mg. My symptoms seem to be under control about 97%. I don't feel quite the same as I did before all if this started but the pain is basically gone and discomfort is very mild. I think I am going to wait until the end of august before trying to reduce the medicine. My fear is that I am not really getting better and the medicine is just covering up the pain, but even if that were true, I know it is much better than being in pain!

[Violet M]

Sara, I think you are smart to continue the medication rather than allowing the central nervous system to get wound up from the pain. Hopefully you will be able to eventually wean off of it slowly without an increase in pain.

Violet

[Sarajoy]

Hello All, I am just checking back in again. I wish I could say I am totally better, but that is not the case. I am now on 35 mg of amitriptyline a day. I am also using a compounded topical cream of amitriptyline and baclofen. I don't know if it is helping yet. My pain is still a lot less than it was, but it flares from certain things. My last period was quite bad, and everything just flared up and took about a week to calm down again. And pooping makes the bladder pain come back again for an hour or so. LOL. Not really funny...but what can you do? Overall, most of the discomfort is situated in my vulva now, and I will just have burning that comes and goes. It is less than it was, but I cannot say I have seen much improvement for the last month or so. I still don't really think I have any entrapment. I just think I irritated nerves in the region. Up until recently, I was looking at this like I just had to wait it out and I would be better. But now I am kind of thinking that this could stick around for a long while. I considered asking my doc to go on Lyrica as well as the Ami, but it seems that many people experience a lot of weight gain from Lyrica, and I am already craving sweets like crazy, so I just didn't want to add to anything. The pain...discomfort really...is quite manageable right now except during my period....ugh.....but I just get kind of weepy and upset sometimes because I just want to feel normal again. I see my timeline stretching out in front of me. It has been 6 months since all of this started for me. Now I am kind of hoping that I will be better in 6 more months.

[Violet M]

Sara, I understand the weepy feeling. I shed many tears on my PN journey. Eventually you will figure out what works best for you in keeping the pain levels low. Some people prefer neurontin to lyrica. I don't think I've heard as many complaints about weight gain with it. For pain relief you have to work up to at least 1800 mg. of neurontin a day.

Postherpetic Neuralgia http://www.rxlist.com/neurontin-drug/in ... dosage.htm

In adults with postherpetic neuralgia, Neurontin therapy may be initiated as a single 300-mg dose on Day 1, 600 mg/day on Day 2 (divided BID), and 900 mg/day on Day 3 (divided TID). The dose can subsequently be titrated up as needed for pain relief to a daily dose of 1800 mg (divided TID). In clinical studies, efficacy was demonstrated over a range of doses from 1800 mg/day to 3600 mg/day with comparable effects across the dose range.

Violet

[Sarajoy]

Hello again! I thought I would update. I was put on estrace cream every night and 2-3 weeks later almost all of my symptoms went away. I can't find a good explanation why it worked but I am pretty sure that was the fix. I am not in menopause and my estrogen levels were normal when checked. I asked to try it because I saw it listed as helping many women. I was supposed to titrate down after 3 weeks to only 3 times a week but when I did some of the symptoms came back a little. So I decided to stay on it every night for a while longer and try to titrate down on the amitriptyline instead. I am still having a little bit of discomfort now and then but I feel 99% like I did before last February. I just wish I knew why!

[Violet M]

Thanks for the update, Sara. Glad to hear the estrace cream is working for you. I've not heard of that as being a solution for the pain of pudendal neuralgia - can't remember if you ever had a confirmed diagnosis of PN but hey, you can't argue with what works!

Violet

[Sarajoy]

Back again for an update. I tried to lower my amitriptyline to 25 mg and in about 2 weeks the discomfort returned. I was pretty down about it because I thought I was getting better. I went back up to 30 mg and now 99% of the weird feelings are gone again. I still sometimes have twinges in my bladder after urinating for a while but everything else is better. I think I've gained a lot of weight and I'm scared to get on the scale but it seems like I cannot go off the medication. I'm still using the estrace every night. I was supposed to cut back to 3 times a week but I'm afraid to mess with things.

So.... It has been 9 months since this all started. I know many of you are suffering MUCH worse than I am so how can I complain? But I'm just shocked that I am not better yet...all from a urinary tract infection!

I have debated going to see Richard Marvel just to see an expert and make sure this is really pudendal neuralgia and not something else, but I am not sure what anyone is going to do that I am not doing. I guess I'm still hoping this will fully resolve at some point. I am incredibly thankful there is medicine to help but I do wish my body would heal.

[Violet M]

Hi Sara,

It is always so difficult to walk the fine line of whether the medication is helping enough to put up with the side effects and unfortunately it seems most of the medications do have some side effects. Whether to pursue further treatment from a pudendal neuralgia specialist is really a personal decision. Keep in mind Dr. Marvel is a surgeon so he will be considering your case from a surgeon's viewpoint. If your pain is fairly mild and you aren't interested in risking invasive treatment options then if you do go to Dr. Marvel you might want to make that clear from the outset.

Take care,

Violet

[stephanies]

When I saw Dr. Marvel regularly many years ago he was very open to managing PN without surgical intervention. He was my pain management doctor for a while, although the I am not sure he still takes that role with patients. He never pushed me toward surgery, even maybe discouraged it a little since I was "high functioning" and entrapment (and thus the benefit of surgery) was unclear. When I decided to have surgery he encouraged me to go to a more experienced PN surgeon (he was new to PN surgery at that time) and was very supportive of all aspects of my treatment. I have considered seeing him again to get his opinion on my current situation.

Stephanies

[janetm2]

I had a somewhat similar experience with Dr Marvel in 2011. He made it clear that not everyone is a surgical candidate and if you doing well he would not do surgery such as a woman that had periodic pain that was not high. In my case due to the foot pain, low quality of life, high pn pain, PT reported that my ligaments were very tight and probably entrapping the nerve and result of nerve block I was a candidate for surgery. As stephanies said he may have changed but it appears he was conservative in deciding on surgery. He did have me try the pn drugs as well to see if that was enough of a help.
Janet