Health Organization for Pudendal Education

Hello All,
Well, this is one forum I never thought I would be on! I had not even heard of the pudendal nerve until a few weeks ago. I am (was) a healthy woman in her late thirties. In February I developed a UTI which somehow spiraled out of control. I was diagnosed with 3 separate UTIs in 2 1/2 months, two E coli and one Staph (perhaps from a cystoscopy), and I was on 4 different antibiotics during that time. I finally recovered from the UTIs but was left with all of this mysterious pain that felt similar to a UTI in many ways...but also different. I had/have burning in my vulva/vagina/bladder before and after urination, sometimes burning for no reason, sometimes nagging, painful feelings in my bladder and sometimes feelings of congestion/arousal in my clitoris and pelvic region. The burning I can deal with, but the nagging feelings in the bladder and the horrible arousal feelings are awful.

My urologist initially thought I had interstitial cystitis, but I don't have any urgency or frequency. I then saw an a Urogynecologist, who was not sure what was wrong, but who sent me to a physical therapist, who quickly told me I had probably irritated my pudendal nerve. I was initially skeptical, but over the weekend I accidentally discovered that sitting was greatly exacerbating my pain. I have since made major changes such as working while standing and trying to avoid most sitting. This has taken the pain down from a 10 to a 2/3. The weird thing is that the pain is delayed. It does not hurt WHEN I sit, but later.

I am also on a low dose of amitriptyline, but hesitant to increase it because it makes it hard to urinate. It is hard to say if it is helping with the pain or not. I also have topical gabapentin, but I don't think it helps.

The physical therapist told me that my case seems mild and that many people live with this for years before figuring out what it is. I cannot imagine that, because these months of pain have been enough to make me horribly depressed and incredibly anxious. My heart goes out to those of you are who suffering and have suffered for a long time.I am guessing that I was also having this WHILE I was having the UTIS.

I am now feeling more positive because I understand what is wrong and have found a way to really help with the pain. But then I feel sad and anxious again because I have no idea if I will get better. There is no one where I live who is an "expert" on this condition. But my therapist says she think I will recover with a few months of rest and treatment. I am not sure WHAT to believe, because everything I read about this condition makes it sound like no one is really CURED.

I have no idea if this is just irritation or entrapment, and I guess I am just going to try and do what I can to not irritate the nerve anymore. I am hoping physical therapy will help.

The other strange thing is that I did not have a "trauma" in the sense of an accident. I can't help but feel that the infections and/or antibiotics had something to do with this, but it does not a make a lot of sense.

Anyway....hello all. Any suggestions for dealing with this? I have a boppie that I have using when I have to drive, and that seems to help a little. Should I seek out a specialist or give it a few months and see if therapy and time will help? I don't want to make this any worse than it is.

Hello and welcome to the forum,
I agree this may be the last place anyone might suspect to land but there is a great deal of info on the homepage in the FAQs and newsletters one prior had PGAD that fits the arousal symptom. Treatment and avoidance of sitting and limiting other activities could help you. Hang in there and hopefully ideas listed and other responses will give you hope and guidance to get through.
Janet

Welcome Sarajoy to the forum. It sounds like you have found a great physical therapist and are very lucky to get diagnosed so quickly. You might want to look into a special sitting cushion. I have a good friend who carriers around a toilet seat in a special cover that allows her to do some sitting and to drive. Finding the "right" cushion is trial and error but many individuals find them helpful and does allow them to sit, even for short periods of time.

Unfortunately, we hear very few stories of recovery on this forum. I think that is because if you get better you do not come back to the forum or you got better before you even found out about the forum. I know my pelvic floor PT has had patients cured that their PN symptoms were do to hypertonic pelvic floor, some just from PT and avoidance of activities that increased the pain and some that a combination of pudendal blocks and PT cured them. To my knowledge these individuals have never been on this forum. They had no reason to seek out additional information or treatment because they got better. My point is, remain hopeful. If you PT has a positive attitude that is great. Give it some time and if you discover symptoms are getting worse or not improving then look on the doctor list. The majority or us have to travel to doctors that specialize in PN but lets keep our fingers crossed your PT can get you back to your normal self.

Keep us posted.

Hi, I am new here to. My symptoms are identical to yours, there is also a lady in the U.K. I chat to she is also in the same position, and it is the arousel nonsense that drives us MAD. I use a tens machine, and that helps distract quite abit, I am also on a low dose of ami 7.5g and it is wiping me out.

My PT therapist is confident I will recover also, as I have found it early , she had similar symptoms herself for two years and is almost back to normal, sitting, wears jeans etc.

It is my mental state that is not great, as I am going through the peri-menopause also.x

Hi Sarajoy,

It's true that many people on the forum haven't been "cured" but I know lots of people who have gotten much better and moved on with their lives. (Including me )

I agree with the other gals, that you might benefit just from a change in lifestyle and the right kind of physical therapy. Most of the PN experts are surgeons and I see surgery as a last resort so maybe you want to stay with the conservative therapies first and see if that helps. For immediate relief you can try gel ice packs and over-the-counter extra strength vagisil. Alternating hot/cold sitz baths can be very helpful too, and I think they promote healing because they stimulate fresh blood to the area. Always end with cold. You can use a child's pool floatie ring to sit on. I always kept hydrocodone or percocet on hand for when I was having an unbearable flare-up but I didn't take it non-stop around the clock.

Violet

Hi everyone, Thanks for the welcome. I have reduced my pain about 90% just by realizing that the sitting was causing it. I no longer have the crazy arousal symptoms or nagging urethral pain. But my vagina stills burns off and on, especially after I pee. I peed 45 minutes ago and am lying here in pain. I don't really think the amitriptyline is helping, but I am kind of scared to go off of it or try something else right now. I have only been to the physical therapist twice so far, and I don't really feel like she has done anything yet or taught me how to do something to help. So at my next appointment I really want to ask what the plan is. I have read and heard that nerve pain takes a long time to heal, but it is scary! I get scared I won't get better.

Any suggestions to reduce the burning when I pee? I tried peeing in the shower but that does not help at all. I guess because the pain is not from the urine itself.
Has anyone else here had symptoms start after a urinary tract infection? I have no idea how or why this happened.

Also, I looked at the providers page. I am in virginia. It seems like closest specialist is in maryland? Does anyone know of someone closer?

Thanks!

Hi,

If you are looking for a doctor who deals with PN/PNE often and has a lot of experience with it, probably you want to consult with Dr. Marvel in Maryland. I saw Dr. Marvel many years ago and he was very personable and interested in learning about PN/PNE and helping people.

My best to you,
Stephanies

Hi Sarajoy.
I also have vaginal burning. I use lidocaine cream. I'm currently using a 4% creme I bought online but I have previously used a 5% prescription version. The lidocaine helps numb the area that hurts. I recently tried a blend of prilocaine and lidocaine, which I got via a prescription. It helps with the numbing, but the prilocaine mixture burns a lot when I apply the cream. Lidocaine burns a little as well but not as much as the prilocaine stuff. If you problems continue, you can ask your doctor for a lidocaine prescription.

Sarajoy, you could try pyridium. I don't know if it would for neuropathic pain but might be worth a try.

http://www.nlm.nih.gov/medlineplus/drug ... 82231.html

Violet

Hi everyone,
I thought I would tell you that I upped my dosage to 20 mg of amitriptyline and the pain virtually disappeared. It has almost stopped burning when I pee. I am still not sitting, and I know that this is only " masking" the pain, but it has definitely helped my anxiety and I am finally out of pain. I was surprised going up 10 mg made such a difference so quickly, but I cannot think of any other reason. I am still doing physical therapy once week. My hope is to stay on the amitriptyline for several months, keep doing therapy and try to stay off my butt as much as possible and then hopefully I will heal. I will keep posting with updates. Thanks for your messages and help. Violet, I was using pyridium and that did help somewhat, but now it seems like the amitriptyline is helping. I just hope it keeps on helping!