Health Organization for Pudendal Education

Well you probably have a fair bit to work through Penny. try not to be overwhelmed by everything, including too much info and let us know how you are, what you decide to try and how things work.
The hernia is a good call also, and easy to rule in or out so definitely worth checking too.
Take care,
helen

Hi Penny - just saying hello really, don't know that there is anything more for me to add. Just another voice saying welcome, sorry that you had to come looking for us of course! - but welcome now that you are here.

Thank you everyone for your comments!

I went back to work today with all the students and am starting to figure out how much I want to tell people. I guess I am torn with wanting to educate/help someone else and embarrassment. However, I can't educate anyone right now as I need to learn things myself. Think I found the right balance for me today but still worried about crying. I don't think I am depressed anymore now that I know I have a path to go down. I definitely am PMSing now and I always hurt worse the week before my period and the week during. I don't know if this is normal for PN but will try to read up on that. I am so thankful I have tons of wonderful students that would just about anything I ask them during the day and a supportive husband at home! Don't know what I would do without them. And now some new friends from afar!

I will make it!

It's wonderful that you have a good support system around you Penny I'm glad that you feel brighter now. I think you are right.

Pennypennypenny wrote:I will make it!

Take care,
Helen

Pennypennypenny wrote: I definitely am PMSing now and I always hurt worse the week before my period and the week during. I don't know if this is normal for PN but will try to read up on that.

Yes, that's normal, Penny.

Violet

Hi Penny.

I'm curious whether you have sitting pain or if your pain is mostly in the vaginal area. Have you found anything that helps? I also have vaginal burning and IBS. I have been diagnosed with vulvadynia (which simply means painful vulva), and my doctor said that pelvic pain and IBS often go together. I have chronic back pain, which is another problem that often accompanies pelvic pain.

Greeneyes

Thank you Helen, Violet, and green eyes!

I am relieved to know that symptoms are worse before and during a period. My Dr said it was probably the pads and to switch to GladRags...but I feel it is more hormonal since I hurt more before I even use pads. I haven't read anybody else post that so glad to hear that.

Green eyes, my pain is all in the vaginal area. Doctors thought I had a yeast infection or even herpes outbreaks without having the outbreaks or any discharge. I am still trying to identify why the pain and itching are worse sometimes than others. I definitely have it worse sitting. That was one thing that made sense immediately! My Dr. Connected the dots for me that I hadn't seen yet. I have anxiety too! It always gets worse in the car and I just figured it was because I wasn't able to do anything (I am type A personality!). I have about a 30 minute drive to work and the Dr explained that I was sitting on the part that was hurting. I hadn't realized until this that I had been driving with my left foot pressed all the way down on the car floor trying to relieve that nerve that I didn't know was there! The pieces of my puzzle were starting to make sense. Unfortunately I think IBS goes along with lots of other things as "we" tend to be workaholic types! Just my opinion! I was diagnosed with vulvodynia until I saw someone who knew what PN is. By the way, your chronic back pain may be due to chronic constipation. Especially if it is lower back. Let me know if there is anything else as IBS is something I know more about! I am taking Amitriptyline but only for like 2 weeks. I was just recently diagnosed with PN like 3 weeks ago. I do believe I am a bit better as I have tried to be VERY good with my avoidance list! Hopefully the medicine will kick in soon.

By the way green eyes I never had pelvic pain with IBS before. I am almost 41 and have had IBS my whole life.

Penny

Penny,

You are a very strong woman to have kept working with PN. My symptoms started in the summer and when school started back, I managed to work 3 or 4 whole days and 2 or 3 half days. I had to give up teaching (for now). I hope that you find the medicine or right combination of medicine to give you relief.
God Bless,
Rea

Thank you Rea,
My husband tells me all the time how strong I am but it doesn't always feel that way. Most days I would have to say that working helps me. I love all of "my kids"! I crash at night when the pain is worse and he has been picking up the slack of what I cannot do. I think if I wasn't teaching I would weigh a ton and be on antidepressants. Although prayers from my Christian friends have also helped they don't quite understand how bad things can be.

The main reason I haven't stopped working is simply that I have been saving my days for maternity leave forever and didn't want to use them for a sickness. I have a ton now but am not sure what God's plan is about that as I am almost 41 and do not want to get pregnant while on any medication.

I hope you get better and can go back to work if that is what you want next year! I am holding on for summer! Not long now!

Penny

Hi again Penny,

The vaginal area gets sensation both from the pudendal nerve and from the nerves in the inguinal canals (ilioinguinal, genitofemoral, iliohypogastric). inguinal neuropathy should be ruled out before you accept the diagnosis of pudendal neuropathy, because inguinal neuropathy can be easier to treat. It is sometimes caused by a hernia or even if it is caused by the nerves themselves, they are sensory only, not motor, and so unlike the pudendal they can be cut. Because you mentioned the leg length discrepancy i think your issue is probably a bit more complex than that, but for sure it is an avenue that should be ruled out when vaginal pain is the main symptom.

I admire your attitude very much: stay busy, immersed with other people vs. isolated, get lots of prayer. One mistake I made because I hate to seek medical care, was letting this disease creep up on me and take away pieces of my life little by little...because it was such a gradual slide, Iet myself get pretty far gone before I got very aggressive in treating it (changed the way I dressed, stopped excercising and gained weight, went out less, etc.). The little compromises seemed bearable at the time, but when I finally went on a 3600 mile road trip in 2009 and came home totally disabled, I took a retrospective look at symptoms that started in 2004 and was apalled at how far I had let myself go. My prayer for you is that you get the help you need before you ever get to that point, of feeling that you cannot continue on in your work or the other activities that are important to you.