Pretty sure I have PN

[finallyhere]

Hi everyone,
I've been doing alot of research lately about all my symptoms, and I'm pretty sure that this is what I have. (PN) It started about 2 1/2 months ago, with just urinary frequency. Then came the pain. It's mainly in my clitoris, but radiates to in between my legs, my tailbone, labia, pelvic area, even sometimes up to my belly button almost. It's much worse when I get my period, I think because I' sitting on the pads all day. If that makes sense?I've been to the ER 3 times, everything is normal, from blood work to urine, I was even tested for STD's even though I'm married. The last time they just dx me with anxiety, since everything looks fine on the outside. I literally want to scream about how much I hurt. I feel like no dr even believes me. I've basically had to diagnose myself. I've been to the urologist to get a cystoscopy, all was fine. My GYN recomended that because after a quick exam he thought I had interstitial cystitis. So back to the GYN, who now wants to refer me to a pelvic pain dr. I'm in MD, and the ones I'm finding accept CASH ONLY! I'm so sick and tired of being sick and tired! I don't even know how this happened, I don't have any of the causes. I do have cysts on my sacral spine, going to the neurosurgeon tomorrow to see if maybe the cause could possibly be the cysts. Or better yet, maybe the pain is all due to the cysts and I don't have PN. Wishful thinking I'm sure. I can barely sleep at night, and the urge to pee is back, even though my bladder is completely normal. I'm so miserable and I don't know what to do. This has made a huge impact on my marriage, and how I feel as a mother. I can't even sit at my daughter's softball games anymore without being miserable. I've had to withdraw from school also, so I basically sit around waiting for a dr to tell me he can help me. And I know that is not coming, I'm trying to be proactive and positive about things, but it's SO hard. I'm trying to get the money together now to see this pelvic pain dr, he specializes in PN and related disorders. I really just want some answers, I'm tired of being so miserable. Sorry about the rant.

[Violet M]

Welcome to the forum. I'm pretty sure your primary diagnosis isn't anxiety, although if you do have pudendal neuralgi, anxiety would certainly be a part of it and it would be perfectly OK to rant.

If you have tarlov cysts on your spine they can cause symptoms similar to pudendal neuralgia so that's good that you are looking at this from several different angles. If you do an advanced search on the forum using the word "tarlov" and author "Hermajesty" you will find some very informative posts on the subject.

Also, there are some physical therapists in MD who treat pudendal neuralgia so you might want to go to one of them to see if they agree with a diagnosis of PN. You can access the list of PT's from the website homepage.

You may have figured out your problem early on so hopefully you will find the right treatments quickly.

Best,

Violet

[finallyhere]

Thanks Violet for responding. It's nice to hear from other people who are going through or have gone through the same thing. And yeah, my anxiety level is off the charts right now, but only due to this, which I can't make people understand. I will definitely look up what you've said, I've read about the Tarlov cysts a little. At this point the GYN dr doesn't know which way to send me, GYN related or spine. I guess it could be both, maybe the spine caused it.

I will see what they say today at the nuerosurgeons. I've already had the secretary tell me "just because you're in pain doesn't mean you need surgery".!! So today should be interesting for sure. I just want a dr to explain the MRI's to me, and tell me if it could be related to the pain.

[GeorgeT]

Hello everyone I am new here and think I may have PNE also.

Finallyhere, I personally loved your post and rant, it hits my exact feelings as well. I have held the scream inside for 2 years and this pain does make you anxious as all get out.

I also pray that you find relief. I am trying to go to Mayo Clinic and here is why.

3 Laminectomies down in the low lumbar area. Sorry dont know the terms.
1 four level fusion in the lower lumbar area.
1 re-opening of the fusion to fix a major spinal fluid leak.
During my first miserable month of recovery from the fusion, this burning started, along with extreme neck, shoulder and mid back pain.

After 3 months, I went back to work, still with vicodin and soma, as the burning and back pain progressively got worse. Continued to the beginning of 2012 and I finally had to go on LTD, as I am very limited in what I can do. Only relief is from laying flat on back or on side sometimes.


I have been to 8 neurosurgeons and one neurologist. The neurologist thought it was Caudia Equina, and that was ruled out. He just had a look at another MRI completed a month ago and found nothing.

The contrast dye set the whole thing on white hot fire and it has not let up since. The pain is so extreme but there aren't enough curse words to form full sentences with. I wish more that I could get this fixed and move on with my life. My wife I think wishes the same.

The last neuro I saw said it is not fixable, he would take all the hardware out, replace, I would not like them very much and no guarantee that the pain would subside. Recovery would be 12 months.They said fill out the disability paperwork. This was a prominent neuro as well.

I have tried a spinal cord stimulator and no luck. The only thing that takes the edge off for me is vicodin and soma and laying down. I can no longer drive nor ride very long. My feet go numb from sitting also.

I so feel for anyone going through this as it is obviously hard to diagnose!

Best to you all, I am glad there are others to talk to that understand. Thanks for listening as I ditto the rant.

[finallyhere]

George,
I'm so sorry you are going through all that. I have heard great things about the Mayo Clinic and I hope you can get in soon! Please keep me posted. And I totally agree about the pain med, I said those exact words to my mom yesterday when she asked if the pain meds help. I told her "they just take the edge off'.

I take Lortab now, was taking Tramadol before due to herniated discs in my cervical spine from Chiari Malformation surgery I had back in 2007. The Lortab works much better, but still doesn't take the pain all the way away.

The neurosurgeon told me today that my spine is totally fine, the cysts are abolutely nothing to worry about and that this a GYN issue. She said the ovarian cysts are chocolate cysts(I think that means endometriosis), and that having them I could be experiencing all these symptoms. I just don't understand how having endometriosis can make you feel like your tailbone is broken?

She suggested the Lupron shot, which will trick my body into thinking I'm pregnant and stop my periods. So I now have a call in to my GYN to get the ball rolling on that, thank goodness I already have the pre-approval from my insurance as it was in the works already before I told the dr that I thought it was PN.

My BIGGEST fear is that I'll waste all this time on the Lupron shot and the endometriosis, waiting to see if it works and still be miserable. The GYN before has seen theovarian cysts and didn't seem too concerned, but was willing to try the shot. I just want a definitive answer already!And I feel horrible second-guessing a neurosurgeon, like who am I to be doing that when they have how many years of school? But I know my body, and it really feels like a nerve issue and not the cysts. Or maybe thats a seperate problem.

I was almost hoping it was the cysts on my spine, just to get an answer, and a treatment. Not more spinning my wheels and making more phone calls. My husband looked at me like I was nuts when I told him that. He just doesn't get how desperate I'm getting.

[HerMajesty]

Don't trust for a second that the cysts are not the cause of the problem until you have spoken to somebody who actually specializes in this area. Here is some info about the sacral cysts (tarlov, aka meningeal, aka perineural cysts) http://www.tarlovcystfoundation.org/home0.aspx . Look at the provider list on the website, there is a doc near you, I believe at Johns Hopkins, who can do a diagnostic nerve block at the sacral nerve roots to see if the cysts are the problem. The reason you should believe nobody but as specialist is, the cysts were actually 1st identified on dead people by a Dr. tarlov who was a pathologist. dr. tarlov asked the patients to describe their symptoms, but they didn't say anything, so they got written into the medical journals as asymptomatic (true story). That is what is taught in medical school and 75% of doctors in the field, at minimum, are 100% ignorant that they can be symptomatic. They also CAN be asymptomatic, but in the sacrum if they are large enough, the mechanically crowd out the nerve roots causing tarlov cysts disease.
Please see a specialist in tarlov cysts and also a Physical Therapist. You will get less runaround than you have been getting so far.

[GeorgeT]

HerMajesty and finallyhere, thank you both for your replies. This is one of the most unnerving experiences I have ever been through. It must be for you as well.

I must say HerMajesty has a very interesting story about the Tarlov Cyst. That is why I had the myleogram about a month and a half ago that has left me white hot. I have a cyst back there as well, and how about this....there are no doctors in my town that will even operate on me because of my back surgeries. I also did some research on youtube about the removal process. Whew, some scary vids.

They told me that mine was not a Tarlov Cyst too but yet they are befuddled by the fact that it emits clear and pink fluid, not what you would expect from a cyst....I have had a few.

The reason I am on disability is because of all this back and leg pain left over from the surgeries, so I am really trying to hang on for dear life. Not even the doctors understand the I scream inside comment, meaning it is not like writhing pain.......more or less
Still the pain is 9 and 10 easy, I don't know about you all....my comment to the doctor was that it felt like I was balanced on the tip of an iceberg that was on fire...

I have found the only way to settle this down is to lay down. Car rides and sitting whooooo.......not a good idea.

I so appreciate hearing from you both and would love to become friends, as I think this is a long road ahead. If you like you can personal message me anytime. I have plenty of that.

Take care and thanks so much for your responses.

[Violet M]

George, welcome to the forum. You have been through an awful lot and I'm sorry to hear you are still suffering.
Have you had arachnoiditis ruled out? The fact that your myelogram set things off has to make you a bit suspicious. http://www.spineuniverse.com/conditions ... chnoiditis

Finally Here, there are some women who attribute their PNE symptoms to endometriosis encasing the pudendal nerves and causing pudendal neuralgia. I don't know if lupron would help that. Maybe your gyn would know.

Violet

[HerMajesty]

George, when you say you have a "cyst back there', is it within the sacral canal? Anything in the sacral canal can compress the nerve roots mechanically. It is certainly not a tarlov cyst though because "cyst" is a misnomer really - a tarlov cyst is a herniation of the nerve root causing a "balloon" of cerebrospinal fluid to be formed; it is not actually a growth. I would HOPE you are not leaking bloody CSF while everybody stands around and scratches their heads! Unfortunately almost everybody with conditions as rare as these has to do the 'world tour" to get real help. I had surgery with Dr. Feigenbaum in Kansas City, and I am just praising God he is in the USA because he is the only doctor in the world I would have allowed to open up my tarlov cysts...not to mention one of very few in the world who would be willing to. If you do have something in the sacral canal which nobody near you will touch (anything large enough in the sacral canal is going to pretty much mimic cauda equina syndrome, and by "large enough" I mean a centimeter or two) - you might want to send a copy of your images to my surgeon to see if he can do anything abut it; he does "risky" spinal surgeries of various kinds: http://frankfeigenbaum.com/

[GeorgeT]

I once again thank you HerMajesty. You have done as much research as I have it sounds. The cyst does not bother me as I have very little to no feeling from the top of the waist to the top of the thigh 360.

I had a job I loved, but this condition was not just jump out of bed and go back to work. Heck, the worst day at work was better than this. I hate having to rely on others to help me with yard work etc. I was very outdoors weekend warrior type......LoL

Thank you for the doc info, very kind of you.

Regards,

George