October 16, 2010

I Haven't Forgotten

Midterms have begun.  I have three weeks of Hell in front of me.  Nursing school is unbelievably demanding!  I still haven't figured out the best way to stay on top of all the material.  I'm putting all my energy into my most difficult class, but unfortunately they are all difficult.  The class I've neglected the most just snuck up behind me and bit me in the ass.  That midterm was ridiculous!

I've been managing my vulvodynia and pudendal neuralgia pretty well.  On some days, I even bring my cushion to class.  On the sex front, I've discovered that I really do have less pain with non-latex condoms!  Who would have thought?!?!  Perhaps they reduce the amount of friction.  I do have to use more lube; and if we change positions, I have to reapply.  It's easy.  Instead of wiping my hand off before we get down to business, I just keep it coated, so the KY is there if I need it without having to interrupt the flow.

It's funny, I always thought condoms were the antithesis of intimacy, but they've brought an exciting new element to our activities...  Let's just say we're both enjoying ourselves...  And every time I go to the bathroom after sex, like a good little girl, I'm shocked by the lack of post-coital burning.

All that fun stuff aside, I know that my posts have grown more infrequent and for that I apologize.  Nursing school has swallowed me whole.  I'm going to try to be more active on this blog.  I just wanted to let you know that I'm still living every day with vulvodynia and pudendal neuralgia.  I'm working hard and I'm living a normal (if you call living in a two bedroom condo with your parents, your husband, two dogs and a cat, while your own house sits empty on the market normal) life.  I have an active sexual relationship with my partner and my daily pain level is manageable.

It is possible to enjoy life with vulvodynia and pudendal neuralgia.

Don't lose hope.       

17 comments:

Anonymous said...

Thank you for your blog & your post... I am new to this whole Vulvodynia thing and lately I've been on a roller coaster ride of emotions. I am only 22 and one of my biggest dreams in life is or was to have children of my own and a happy family. Now that I have this, I feel like those dreams are destroyed. It is going to be 3 months since this started. I haven't tried any medications or therapy yet but I did go to Dr. Glazer in NYC and he said I should try biofeedback therapy but I was too scared of the pain. I read a lot of negative things on the internet about Vulvodynia in general and it really brings me down. I am glad that for once I can read something positive on your blog. This is the beginning of my life and to feel like I can never have sex again makes me just want to die sometimes. I feel like everything that makes me a woman has been taken away. Can you please give me some or all the advice that you have especially for someone who has just started on this journey... what are the treatments that help you? have you ever tried biofeedback or heard anything about it? has anything failed for you? what are the best tips you have regarding the least amount of pain during sex? and is sex really possible with this thing? :( I feel so lost.

Beth said...

SO SO SO happy to hear from you Quinn! I knew you had started school, but I had to admit as the weeks went on, I started to get a little nervous.
I am thrilled that things are decent for you pain-wise. So great. Good luck with all the studies. You will make an EXCELLENT health professional!!!!

Beth said...

@Anonymous:
I'd be happy to 'chat' with you if you need someone.
I could send you my email or if you are on Facebook, I co-moderate a support group for Pudendal Neuralgia. Lots of helpful people on there. I have had pudendal nueralgia (originally diagnoses as vulvodynia) for almost 8 years.

Claire said...

@Anonymous, my heart goes out to you reading your post because I developed vulvodynia when I was 21 (I am now 31). However, I just want to reassure you that you WILL get better. I am currently 90% pain free, can have pain-free, enjoyable intercourse whenever I want. When I first got vulvodynia, I had pain & burning around the clock. I took a year off from school, just to manage the pain and stress. Dr. Elizabeth Stewart told me I had one of the worst cases of all her patients. I tell you this, just because I've stood in your shoes, felt your fear and seen my dreams fall apart. But now I am a healthy, adjusted 30-something, who has really been able to put the worst behind me.

In the past couple of years, doctors have made some real advances. For years I struggled to get small amounts of relief with a cocktail of meds. But in the last 2 years, I've had tremendous success with Botox injections in the vestibule, estrogen/testosterone topical cream and physical therapy (internal muscle work done on the pelvic floor).

I promise you will find the right therapies too. Don't give up or lose hope! Very best wishes, Claire

Anonymous said...

how do you know if you have pudendal neuralgia and not just vulvodynia?

Beth said...

I knew it when pain spread to perineum and anus. Also became impossible to sit. I know only sit when I absolutely have to (and then on special pads) or to drive (and always use an ice pack). There are only 5 or so 'specialists' in the country that diagnose true PN, but I have heard of lots of others who are starting to learn of it too. There is one on the east coast...

Beth said...

Oh~and also had/have bladder and bowel symptoms. :(

Anonymous said...

Is it pins and needles around the anus? I have Fibromyalgia also and I get pins & needles everywhere. I don't know if I have the PN thing but it's making me more worried... and so the PN thing causes pain in the vulva? it can happen overnight or it's gradual?

Anonymous said...

... sorry for all the questions.

Beth said...

I've heard it happening both ways -- both suddenly and over time. You may find this site very helpful, but it can be overwhelming: www.pudendalhope.org.
Lots of concrete info and chat forums.
Yes, PN can cause pins and needles sensations and pain in the vulva. I'm not trying to scare you or convince you that you have pudendal neuralgia....just offering one more opinion. Feel free to ask as many questions as you want: I didn't have anyone to talk to when I first started suffering, and pelvic pain is still not talked about in public circles. Hang in there!

Anonymous said...

one more question... who is the east coast doctor that specializes in this?

Beth said...

His name is Dr. Mark Conway
St. Joseph’s Hospital, Nashua, New Hampshire

Anonymous said...

Thank you Beth. I am so frustrated. All of these conditions have overlapping symptoms and I just don't know what I have. I definitely have Fibromyalgia. And now it hurts to have sex which made me think Vulvodynia. But NOW, I feel this intense aching/pins & needles type sensation around my anus... sorry for all the information... it's just the most uncomfortable feeling. What are the best treatments for PN? do you have to refrain from sex?

Beth said...

Oh, some loaded questions there.
I am able to have sex again now, better in certain positions, etc. I had the pudendal decompression surgery in March of 2008. Prior to that, everything had gotten progressively worse since 2002. A few weeks/months before surgery I had to quit my job and we were not making love anymore. So much pain. Now sometimes I have a dull burn the morning after, but that's it.
There are lots of things to try to get some relief. A self-care protocol includes no sitting (or only on cushions that suspend the perineum), pudendal nerve blocks, certain meds, ICE ICE AND MORE ICE. I have heard of several others with fibro as well -- seems to be a lot of overlapping going on with most patients. I was first diagnosed with Interstitial Cystits, Vulvodynia, Pelvic Floor Dysfunction, and IBS. In the end, I think they all were really PNE. Prior to finding my surgeon, a rhuematologist diagnosed me with chronic pain induced fibro. So I guess it can work backwards, too...

P said...

What a great post Quinn! I'm so proud of you for pursuing your dreams and managing your conditions so well at the same time. I think it's so important to let people know it is possible to live life with this chronic pain. I recently wrote a post about how my life is not what I thought it would be, but that it's still fulfilling despite PN!
-P
(Pearl--I shortened to P on my blog for various Internet reasons)

Anonymous said...

Hi there. My name is Tanya. I am a patient of Dr. Antolak's. He told me of a Beth who has a blog, and I wonder if this is the same Beth. I really need someone to talk to and wonder if anyone who had the decompression surgery could give me some hope. If so, I could give you my cell phone #.
Thank you for any help/advice you can give me.
Tanya

Anonymous said...

I am a patient with vulvodynia. I've also had pudendal nerve pain. It really hurts to sit like a normal person when you are having the pain. It took a while to get help as I have suffered with this since October 2008. Estradiol has been a big help, but even better is a good gynecologist that knows how to treat this condition. If you live in Florida near Orlando, go see Dr. Georgine Lamvu at Advanced Minimally Invasive Gynecology Specialist ph 407-303-2780. She is the best and specializes in treating this disorder. She is also easy to talk to and very understanding of what you are going through. I had pain stinging and burning, no infection. Stinging even went down my leg at times, redness and inflammation. The sooner you find a good doctor that knows how to treat this the better to get it under control sooner than later like I did. Be patient though, you have to work with your doctor to find what works best for you. You are not alone, and there is help out there.