Undiagnosed..still waiting for appointment

[TracyB7777]

Hello everyone!!

I've been amazed at all of the information available on this site. I have not been diagnosed with PN (still waiting to see Neurologist next) but this sounds to be the closest thing to what I'm experiencing. (Burning pain in the vulva area, usually starts around the clitoris but not always. During really bad times will spread out even further. I do not sit, I only lean on walls or forward on chair backs and lounge at home. Driving is uncomfortable in the minivan but still bearable for short trips.)

The burning pain started in Jan 2010. DO thought it was a yeast infection so I took those meds. Pain continued so he gave me meds for bacterial infection. Pain continued so he sent me to a GYN. She said I had a resistant yeast infection and put me on meds (same one's as before) only she told me to refill as needed. This was in early Feb. Well, I did as I was told and continually refilled with no relief. Finally made another appt with GYN. She then thought it could be Lichen Scelrosis, another round of different meds and still no relief. So we went back to yeast meds. By the end of March she was out of ideas and sent me to a dermatologist, who couldn't see me for 6 weeks. So I tried an accupuncturist. She was sure she could help and was very frustrated when after four treatments I had no relief.

By the end of April I was no longer sitting at work. I'm the Exec Asst to the COO in our school district. I even take minutes at public meetings standing up. The dermatologist decided to put me on Paxil. However she was going out for a 3 month medical leave so I went back to my DO, explained everything and asked him to handle my follow up with the Paxil. It surely helped me handle the pain better but did nothing for the pain. We've tried a variety of meds...even Lyrica. I didn't react well to that one. I started having swelling in feet, legs and hands not to mention had thoughts of letting my van "drift" under a semi so we took me off of that one.

That's when the DO decided to send me to a Urogyn. His RN is fabulous!! She is wonderfully understanding and actually refused to try any treatments but she suspects I may PN and was afraid of making the situation worse. So she referred me to a Neuro. That one called me back and referred me to someone else because he was not familiar enough with PN. (Which I appreciated hearing sooner rather than later.) So, now I wait. Currently taking at least one day a week off from work. I have a lawn chair that I use during my lunch break to lay down and get off my feet. Ankles and legs are really swollen, pain is still really bad and I do everything I can to try to avoid anything that may cause a flare.

WOW! Hadn't realized that would be so long, I do apologize. I haven't found any information on Chiropractors and was wondering if this could provide a little relief while I wait for my next dr's appointment.

[Violet M]

Tracy, I thought I had a yeast infection also near the beginning of PNE -- which was odd because I had never had one before. Turns out it was not an infection at all -- it was pudendal neuralgia.

I tried going to a chiro but the adjustments did not hold long enough to be worth anything. I don't know if a chiropractor could help you -- it kind of depends on what else is going on in your case. For instance do you have SI joint dysfunction, pelvic instability, or pelvic misalignment? A good physical therapist can help you sort out some of this too -- but it has to be someone who knows about pudendal neuropathy and doesn't have you do stuff that makes you worse.

[TracyB7777]

I honestly don't know if I have any of those. My DO (2 appointments ago) suggested that I just needed to find a way to deal with the pain since I couldn't whole up and quit living my life. I am so frustrated. I may make an appointment with a Chiro just to talk and see if they are familiar with the issue. My biggest concern was having a flare from seeing one.

[Judith]

tracy
what part of the country do you live in. You could also benefit from being evaluated by one of the Pt's on the lists here. One caution about chiro- my experience is that they wanted to manipulate my SI joint and really didn't understand the implications if you are having some trouble around the sacral nerves. the PN in particular is a nerve that needs to move and glide freely in a tunnel so please just be careful with the chiro. When a PT does any kind of neuro-manipulation they are so gentle and careful and the knowledgeable ones know what they are doing. In the meantime, things like ice can be helpful, not wearing underwear or tight pants if they are constricting and irritation. I used to use these things called go commandos- soft patches that covered up seams. you can find them at www.gocommandos.com Also, looking around here for seating solutions, but again, just try to minimize triggers as you have been doing. ALso hot baths have helped. If you are going to be on an SSRI you might want to try cymbalta over paxil as it has better evidence for nerve type pain. So, anyway, hang in there and we'll all throw more than 2 cents at ya.

Judith

[Quilter 2]

Hi Tracy;
You are fairly close to Dr. Hibner. He is in Phoenix. He is very difficult to get an appt. with, so if you choose to see him, start now. My Dr. told me, Dr. Antolak in Minn. was easier to get into. From personal experience, I would not go to any PT or DR. that doesn't know about PN. They coould make you wayyyyyyyyyyyy worse. I have learned to check out anything a DR. tells me including meds. I use to feel like such a jerk sometimes telling these professionals NO, but after a year of different "Ologist" and almost 20 grand after insurance, but I got over it
I was able to get a DR. to prescrible Tramadol (Ultram) for the pain. It at least helped while I was trying to find out what was wrong with me. Ice is the best pain killer for me. I have an ice pack in my undies much of the time. It's cheap and free.
The people on this site have tons of info. Just ask anything even if you think it's silly.
My best;
Doreen

[HerMajesty]

You are really in a good area for what you need, but will have to take a look at the list of Docs and list of PT's to find that out. People from all over are flying in to see Dr. Hibner for PN and he is right there in Phoenix. he has a very long waiting list and it will be a few months to get an appointment, so there is no day like today to make the appointment. Even if your care goes in another direction, you can always cancel. But better that, than deciding a few months from now that you wish to see him, and then starting the waiting process from that point.
I would definitely nix the chiropractor and look for a pelvic floor PT from this site. If your problem is due to pelvic joint dysfunction, a pelvic floor PT will be able to determine this as well as a chiropractor, but the care you get for it will be more appropriate to PN.
Although many pelvic floor PT's are only good with soft tiisue (that is, anything but bone), they can at least recognize a joint issue. If you have one, I would still not recommend chiropractic but instead say that you are close enough to Las Vegas to spend 3 or 4 days here and get your pelvic joints treated by Jerry Hesch (see NV PT list). I am biased because he fixed my underlying joint problem and now I work with him...but I am only biased, and only work with him, because it took him 3 hours over 2 visits to permanently fix a complex pattern of joint dysfunction that had been ongoing for 25 years. I don't think a Chiropractor would even make that claim, much less be able to back it up.
1st stop however would be a pelvic floor PT who could let you know if your joints are even involved. Some cases of PN are due to scar tissue or other non-joint factors.

[Celeste]

It takes around 8 months to get an appointment with Dr. Hibner, from what we've seen on the forums. You might consider the Houston team; they're a short hop from you on Southwest and they are pretty timely with appointments. Food for thought.

[TracyB7777]

WOW!! Everyone here simply amazes me. It's so hard to explain to family, friends and co-workers what is going on but here you actually get it! You have wonderful information and I'm so thankful that you are willing to share with me.

I did try to get in with Dr. Hibner a month ago and was told it would be February before he could see me. The original Neuro here that I was supposed to go to turned me down for an appointment but referred me to Dr. Bamford. I see him towards the end of October. Now though I think I may go ahead and schedule with Dr. Hibner just in case I need the appointment after all.

The Urogyn I saw was Dr. Surwit, but I never actually saw him, I only saw his Nurse Practitioner, Rosa Garcia. She is a wonderful person and after the exam she is the only one to ever mention PN. Without her I would still be out there, in pain, wondering if it really was in my head. She is the one who found the Neuro for me and even followed up with me to see how I was doing. If I need the additional assistance I wouldn't hesitate to go see her again. http://www.pelvicfloormedicine.com/index.php

I have pretty much quit wearing pants and yes, once I'm home the underwear also comes off. Any suggestions for during my period though? I can only use pads and havent been able to find all cotton one's, but I"m going to try the all natural stores next.

Thank you all again!! I will keep following all of you and let you know as soon as I get in to see the dr. (Decided against the Chiro. The thought of a bad flare just scared me too much to be honest. My family, friends and co-workers don't understand that either.)

[TracyB7777]

Just a quick update. I went back to my acupuncturist and told her they drs were thinking my issue may be PN so she did two sessions, a week apart and I actually have some relief. I still can't sit but the burning is reduced, not gone but definitely less. Has anyone else experienced this? I finally get in to see the Neurologist on Wednesday.

[HerMajesty]

If I had a serious menstrual period, I would be in big trouble because I cannot wear ladies' underwear at all but only loose soft cotton men's boxers. You might want to consider stopping your periods. If you are sure you will not be having any more kids (if you have any already, that is), you could do what I did which is get a uterine ablation. Search the term Novasure. It is a very simple outpatient procedure which scars the uterine lining. in 70% of women it stops your period, I am in the 30% who still get one but it is very light spotting which is much easier to manage. if you want children later, there are depo shots and possibly other kinds of birth control, not sure as I have been out of the birth control game for so long, which also can stop or greatly reduce periods.
I hope the Neuro works out for you, but back when I tried to do the Neuro thing, I never found one that really understood pelvic pain care...have had much better luck with pain clinic, so if this neuro leaves you frustrated try to locate a pain clinic with experience in pelvic pain syndromes.