Health Organization for Pudendal Education

Wonderful news. I hope you plan works. Although I could not take the side effectsfor higher dosage of amitriptylene for pelvic nerve pain, my original dosage took away the shooting pain I had in my toes and I remember being amazed by that. Of course I am still on it for that but was able to use and get off daily nerve pills for the pelvic pain after surgery and with PT and acupuncture.
Janet

Just another update. My physical therapist is doing connective tissue skin rolling on me. I had my period this week and that is always difficult. Pads and tampons really irritate me so I have to use instead cups. And they leak. Ugh. Next month I may invest in a diva cup, be I am hoping that by next month I will have improved. My pain was virtually gone with the 20 mg of amitriptyline, but yesterday it came back with the burning when peeing. I did 3 possible things to irritate myself. 1. Actually had sex. 2. Went out to lunch and sort of laid sideways in a booth. 3. Had physical therapy. Not sure which one of these caused the pain or if was just all too much together. But it sucks. So I guess today I am going to take it really easy. So far it has been 2 1/2 weeks since I stopped sitting. The medicine is a godsend but I am still hoping and praying that this will heal in another few months.

Sarajoy, I can see how any 3 of those things could have flared things up and especially all near the same time. PT involving myofascial release was definitely a pain trigger for me so I think increased pain from PT is something to consider for sure. Hope things have calmed down again for you and that the medication is still helping.

Take care,

Violet

Hi all,
I've just decided to keep posting here from time to time. I figure maybe it will help someone or at least it keeps me aware of how I'm progressing. So, I went up to 30mg amitriptyline a few weeks ago, and whether it is the drug or time, the burning when peeing finally stopped. I even had sex without pain. I have been sitting a little more too, and it doesn't seem to make anything worse. This is all very good. I do, still, very often have this sensation of something in or nagging at my vagina or bladder throughout the day. The night before last I was up in the middle of the night and didn't sleep as well as usual and the next day that feeling was worse. I had kind of a breakdown in the afternoon from frustration and fear. I think that when I sleep a long time it lets my bladder rest, because in the morning I feel fine, but the feeling gets more noticeable the throughout the day. So if I don't sleep well and don't give my body that rest, it gets worse. I have no idea why as I am still not sitting for long periods...mostly just when driving and with a boppy.

This feeling makes me a little crazy. I equate it to having a speck of sand in the eye...not really painful but just irritating and by the end of the day, I feel cranky and upset. But I have obviously seen a lot of improvement, whether from the drug, time or physical therapy.

I have some valium prescribed for my vagina, but it doesn't do much...it does, however, work brilliantly orally! But I don't want to end up with a benzo addiction. I am just having g a really hard time with my anxiety and my mind starts getting very circular with my fears. I feel like that is half the problem. I just don't know what to do about it. More drugs? Buspar or zoloft? I never wanted to be on third kinds of medications.

Anyway... That is my update. I have definitely improved, but am still not back to normal. I'm hoping in another month I will be even better. I now have to decide whether to taper back the amitriptyline and see if the improvements are real or just from the medicine. That scares me.

You seem like a very promising case to recover fully, based on the mechanism of onset. Sounds like you just got some UTI's and as a result impinged on the nerves with too much muscular tension.
significantly increasing water intake really does have potential to help with urethral burning.
Also, regarding the burning symptoms, have you had the vulva cultured for yeast and bacterial vaginitis? I had to be on long term antibiotics which total messed up the normal flora balance in my body, and as a result I spent a few months in Vulva Hell. Considering this started with a series of infections and some courses of antibiotics, a vaginal or vulvar infection may be contributing to your current symptoms.

Sara, on nights when you can't sleep you could try using a gel ice pack and if the pain is internal a frozen ice balloon. Ice has helped me get to sleep many times and sometimes works better than drugs.

Violet

So, a few days ago I started feeling better. I'm not really sure why. I have been doing physical therapy, but honestly, I think it was more just time. The burning has totally gone away. I feel just about completely normal. I am still on the amitriptyline, and my plan is to wait a week, pray I don't start feeling bad again, and then go down to 20 mg and see if anything changes. If all is good, I will keep reducing. I am not sitting much, and I think if my good health continues I will not go back to sitting while working. I am really hoping this continues. I thought it was important to post because there are so few stories of recovery here. I am very sorry so many here are struggling with little relief.

Sara,
Glad to hear you are feeling better. Hope you can move off the Amitriptline. Thanks for posting your progress, good news is always welcomed.
Janet

Last week I had a few days where I felt totally normal. This week I have been having some mild uncomfortable feelings. But I am trying not to get anxious. I realize that healing is not necessarily a linear process. I'm hoping that the totally normal days will come back soon.

Sara, with PN often the healing is 3 steps forward, 2 steps back but at least it sounds like you are making progress slowly but surely. Hope this trend continues for you.

Violet