New and completely, utterly, scared :(

[Anya]

Hi,

I've had pudendal nerve pain for 1 month now (though I've had vaginal sensitivity to touch for about 4 months and one PGAD episode 2 years ago). Two weeks ago, I went to my regular doctor and she said it meets the criteria for pudendal neuralgia or entrapment. I looked up and the symptoms on HOPE and I have 95% of them, if not all - tingling, burning, pain, pain on sitting, worse after bowel movements, friction on nerve when walking, better on the toilet, pain when pressing on vaginal area (I can't even open it as that sends a shock into the nerve down my thigh), burning when urinating sometimes, PGAD episodes.

The problem is I don't have insurance. I've been crying every day because I feel all hope is lost and no specialist will see me. The only clinic in my city that I found deals with PN stuff rejected me because of no insurance. I can't afford a $4000 MRI to get things started and see if there are any obvious issues. I tried applying for medicaid but haven't heard back yet after sending the paperwork, but I have doubts I will be approved as I make slightly over their poverty limits. ($1491 a month, out of which $1000 goes to rent and bills).

I am deaf so I keep trying to contact doctors through email to make appointments (because I know the waiting lists are so long) and they respond once asking for my details to register me, and then I never hear from them again about an appointment. (or I don't hear back at all)

I feel completely isolated and I don't know what to do, where to go. I have read so much about PN and done so much research over the last month, but I can't afford the appointments, nerve blocks, botox injections. The closest physical therapist that is aware of PN is in Houston and though I can save up for a session/transportation/hotel there for one session, I can't afford it to be a regular thing. I am worried that any benefits from therapy would be annulled by the train ride.

I don't know what to do.

[janetm2]

Welcome Anya,
I just wanted to say hello and let you know you are not alone and sadly not the first in a lack of finances for this condition, it is hard to cover everything but it is not all at once. There may be a way to slowly get some help, unfortunately I am not the most knowlegable but others will have ideas, please hang on for their ideas. I am sorry you ranked so high on the symptoms and are having such issues with the doctors. Maybe you could print out some info for your regular doctorabout the medications from the homepage FAQs and see if you can at least get some pain relief until you can figure out other treatments and/or some anxiety or depression medicine? We need to keep you in a state where you can function while this gets sorted out and please know there are friends and resources here to help you through, you are among a new family. The others should be along with some other ideas and try not to feel so overwhelmed as you are in early stages which is a help and it could also not be PN or PNE some other problems like hernias and labral hip tears have same symptoms but easier fix. Take Care
Janet

[Anya]

[Double post, sorry. Edited]

[Anya]

Thank you so much.

This is going to sound very stupid but I am scared of prescription pain medications. Even when I had mouth surgery and wisdom tooth extractions (separate surgeries) I didn't take any afterwards. The one thing that got me through the pain was knowing it wasn't endless, but with PN I don't have that which terrifies me. I have seen a lot of people get addicted to prescription meds and wreck their lives (one who died from overdoses) and I am just scared about it all. I am so sorry, I realize it is silly to be afraid of something that is supposed to help. There are some medications I am not allowed to take too much of (like ibuprofen) for other health reasons (kidney stuff) and I do not know how much that limits what prescription pain meds I could take.

4 years ago I've had kidney stents and a laparoscopic procedure that I fear affected my nerve as my PGAD episode happened one year after this and had no issues before. The last kidney stent 4 years ago was yanked out of me out under no anesthetic and it hurt so much I couldn't breathe. I am worried this might have been what damaged the pudendal nerve, pulling it out through the ureter/urethra. My first PGAD episode was a year after that. That surgery went so so well and I am devastated it might have affected me in a way I could've never foreseen.

[Violet M]

Anya, welcome to the forum.

I don't think it's stupid to not want to take pain meds. Ice might be just as effective for you, although typically doesn't last as long. You could also try some topical ointments if you aren't scared of them -- like extra strength vagisil which is over-the-counter. (The equate Walmart brand is the same only cheaper.)

Not sure where you live but there might be physical therapists who would be willing to communicate with the PT in Houston on what techniques to use to help you. Our list is not all-inclusive so with a bit of research you might find someone closer who treats this. There are books you can order on Amazon that might help you with some self-treatment such as "Healing Pelvic Pain" by Amy Stein and "Headache in the Pelvis" by Dr. Wise.

Are you able to work or is the pain affecting that significantly? There are patients with PN who have applied for disability and gotten it. I don't know if that is an option for you. I am sending you a private message with some additional information.

Take care,

Violet

[nyt]

Anya, welcome to the forum.

Violet suggestions of the two books on pelvic pain is a great idea as there is alot of helpful information. You might want to see if your local library has the books or can get them through interlibrary loan to help keep the cost down.

The first line of choice for medications for individuals with chronic pain is not narcotics. Most of us take some narcotics but we take other medications to help with the nerve pain. With your kidney problems I do not know what they would recommend but usually most of start off on things like Lyrica, Elavil or Gabapentin. Elavil should be a relatively inexpensive medication because it has been around a long time. You might be able to get samples of Lyrica from your dr. to and if it helps then see if the drug company would help with the prescription as many drug companies have drugs set aside for those who need them but cannot afford them.

Hopefully, you will be approved for Medicaide and that will take away some of the worries.

[HerMajesty]

Welcome Anya,

I am sorry you are in a tough position and hope you get approved for Medicaid - if not the 1st time, I encourage you to exhaust the appeals process.

Your fear of medications is entirely valid - many doctors give out narcotics as a knee-jerk response to a patient complaint of pain. Narcotics by their nature replace the natural neurotransmitters made by your brain, so over time with chronic, daily use, your brain gets "lazy" and stops making the neurotransmitters. The result is tolerance (more med needed to get the same effect), physical dependence (withdrawl syndrome if you stop taking the drug), and some patients go on to develop hyperalgesia, which is an increased sensitivity to pain - in other words, in the long term narcotics can make your pain worse. Occasional use will not cause these issues, but chronic use puts you at risk. That said, do not confuse "medication" with "narcotics". Different individuals tolerate meds in different ways, but I have found a few good non-narcotic meds that I tolerate well, through trial and error. There are brain / central nervous system consequences to having no pain control as well - chronic pain can lead to an overactive autonomic ("fight or flight") nervous system and changes in the brain's behavior which can increase pain. Ice, heat and topicals are all good ideas - also you can see if an over the counter antiinflammatory such as Aleve helps at all - but don't deny yourself access to all sources effective pain control.

As far as travelling to Houston for PT - I would suggest you do it once to get the PT's impression, and see whether you might be able to manage once per month for just a few months. PT was helpful to lower my pain levels and everything I learned there I could do at home. They did trigger point massage which I taught myself to do by watching them; and stepped me up on a progressive stretching and core excercise program which I did there, but also at home between appointments once or twice per day. The patients were meant to do it at home so I was given printouts of everything I was supposed to do. If the PT is understanding about your situation, perhaps you could get an initial evaluation and instructions, and go back in another month to reassess your progress.

[janetm2]

Thanks everyone for explaining the meds for Anya - I was not thinking of narcotics but the others that were stated and as well the other great ideas. Anya, there are no stupid questions or feelings here, sorry I added to the scariness.
Janet

[Anya]

Thank you. I just got the book Violet suggested (should be here in 1 or 2 weeks, hopefully). I am on Gabapentin, my doctor prescribed it to me when I saw her and she suggested PN. It made me very loopy and feeling like I was swimming for 2 days, then I didn't feel anything different, I hope that is normal and not my body having gotten used to it too much.

Dr. Hibner's office wrote back last night with an initial appointment date - does he do payment plans for mri's? Anyone know? I am scared of asking his office in case he turns me down and I am back where I was.

Would it be better to do an MRI here through a university hospital and present it to him (cheaper, payment plans) or would that mess things up as there aren't PN specialists here? I'm in New Orleans. Does it make a difference where you get the MRI?

[HerMajesty]

Hi Anya,

Just popping up to answer the gabapentin question since I don't know Dr. Hibner's MRI policy.

The loopy, "drunk" feeling is normal at first and does go away. It's a temporary side effect until your body acclimates to the dose of gabapentin you are taking. If you don't feel better at the dose you are on, but you don't have objectionable side effects on it either, you should have the dose increased to see if it is useful to you at a higher dose.

Many times a doctor will start gabapentin at very low doses, 300mg or even less, to make sure you can tolerate it. However it is safe at doses of up to 3600mg if you are a person whose body can handle gabapentin. You just have to up the dose gradually so you don't get too loopy all at once. I found gabapentin to be useless at low doses but to be very valuable at the dose I have been on for the past 3+ years, which is 2400mg (600mg 4 times per day). Even at that level, the drunk feeling is only temporary. However a very common side effect for those of us who take high dose neurontin is poor short term memory, a bit like very early senile dementia: you have to make lists or you will forget to do things, you will walk into a room and forget what you went in there for, have trouble remembering peoples' names, etc. That's my only side effect and I find it worth the lifestyle changes (I make lists and carry a calendar everywhere with me, etc). It isn't brain damage: It reverses when you stop taking the med. When and if I am well enough to get off it I will also have to taper off: it is not a good drug to stop abruptly.

If you do find a dose that works for you and it doesn't cause intolerable side effects, you will continue to get benefit at that dose. Gabapentin does not cause the kind of physical tolerance that narcotics cause, so you won't have to increase the dose over time.