Not sure where to begin. I hurt.

[Grace]

Constant pain began as anal-rectal in the first of December. Could not sit for two minutes without excruciating pain. Worked standing and kneeling. Mysterious to my docs. I have dealt with the pain of fibromyalgia for 20 years and am well trained in the arts of pain management, so I used my best strategies. But in January I was in tears by noon each day. Colorectal surgeon referred me to pelvic floor therapy. After four weeks (8 sessions) my pain began to spread to the perineum and posterior labia. PT felt concerned that the source was not muscular. Sent me to gyne, who examined starting with a simple question: "Does this hurt?" No, I say. It just feels scrapey...it is uncomfortabke and I don't like it. But I wouldn't call it pain. What is it you're scraping me with?" With a very grave look she held my gaze, and then, she held up a Q-Tip. With further gentle exploration (that required focused deep breathing on my part), she found the muscles of my pelvic floor to be "exquisitely tender." And so it begins...

I've been to a few different doctors--one who told me my pain was 'just more fibromyalgia,' given my history of pelvic surgeries (2 c-sections: 1998, 2003; and a laproscopic hysterectomy in 2011). She also laughed when I told her I hoped to have things manageable so that I can return to work in the fall. "Do you think this is seasonal?" she smirked. Wow. Not an all-time low, but pretty close.

MEDS: Did not do well on neurontin. Other than suppositories (valium-neurontin combo), which I'm still not sure about. Already taking other meds related to FM.

MOBILITY: I seem to be better if I barely stand or walk all day and ice after any extended standing (10 minutes). I can make a 10 minute drive on ice pack, but no matter what I do, I miserable at the end of the day.

WORK: Here's where it gets hairy: I work by yearly contract, which has been stressful for the past several years, but it is my family's main source of income and only available source of health insurance. I have three children at home, including young adult with special needs. I had to take medical leave in March and there is a high probability that I will not be offered a full-time contract next month. So it's time for me to get really healed fast and really creative about working while lying down.

OBVIOUSLY: Much emotional distress involved and FM is flaring at full force.

MY QUESTIONS:
--How did this happen??? Without injury or incident. My doctors scoffed at the notion that it could be related to my preceding year of consecutive yeast infections.
--Why should I take *more* meds? I'm full up with medication and here's what it does: partially diminishes stiffness and neuro-type FM pain, helps me stay awake at wakey time, helps me sleep at sleepy time, and keeps anxiety and depression at bay. No healing, no improvement, just tidying away symptoms so I can carry on working and appropriately behave myself among the humans. Even before the PN, in the last couple of years all that the meds helped me gain went directly into my work and I was almost useless by the time I got home each day. The decline was concerning, but I didn't know what else today besides ask for different/increase meds and carry on, so that's what I did.
--If my nerve is compressed (there's no reason for it to be, but even LESS reason for it to be entrapped), would a nerve block that allows me to sit again be a wise choice. If the nerve is compressed, wouldn't sitting on it make it worse?
--What should I ask an interventional radiologist? I was schedule for a CT-guided nerve block, but I have refused to do it without a proper consult. Finally the consultation has been granted, but I have no idea what to say other than--have you ever even done this before?!?--which probably wouldn't be a helpful opener.

ADVICE: I'll take any and all. I am truly terrified for my family's future and my career, even though I am a person of faith and a natural-born fighter. I have been battling pain for over twenty years and have been able to complete two degrees, still hanging on to my doctoral candidacy, and I am mostly a pretty great mom (yesterday they dedicated the whole day to me!) Over the years, I often find myself in a posture of 'down but not out', but this time I'm not so sure.

Sincerely,
gracie

[river133]

What I just read Gracie, has been my life for the past 5 .5 years. I hurt so bad right now I don't care if I don't wake up in the am. Rectal pain horrible. 3 decompression nerve surgeries. . The pn is so long and has so many branches coming off of it who knows. The only good thing about my situation is that I am on Medicare and a supplemental insurance. My heart breaks for all of the people that can not work ! in the work place.I have had one crisis after the other. Fell and broke my ankle. Got that healed. and awoke out of a deep sleep and ran to the bathroom,only to miss the doorway and smacked my whole body onto the sharp edge of the door frame. I heard the splat ,it threw me . I look as though I have been hit by a truck. I love watching people looking at me ,and thinking ,wow,he sure did a number on her. I just smile at them.
I know I do not sound very encouraging, I have had to surrender to this pain.
Most days I am upbeat and happy,and just make this pain my normal. Just reading your post brought all of the years into recognition again.
You sound like a very strong person Gracie, You will make it. We all do with hope. Ellie

[Jax87]

Hi Grace,
I'm sure more experienced people will continue to reply, like Ellie, but I thought I'd just put in my two cents for what it's worth. First, it's really impressive everything you've done while dealing with FM and now PN. It's truly inspiring to me. I only have a cat and some days it's all I do to talk care of her. What kind of meds are you already on? I didn't get along well with Neurontin either. Right now I'm doing very well on a Lyrica/Cymbalta combo. I know Lyrica is frequently used for FM, but maybe you are not on it since you tired Neurontin and they aren't used together, just guessing. Some people find great relief with medications and they can help calm down your central nervous system, as you probably already know.

As far as what caused it, there seem to be so many different causes. I didn't have an injury either, but some people on here did. Were your yeast infections culture positive or diagnosed on symptoms alone? I ask because a lot of women who think they have chronic yeast infections are actually dealing with vulvodynia/PN. With the blocks, you can look under the forum topic and see what people have said. I had several, and I don't think they made me better or worse overall. If anything, it just confirmed that PN was my problem. Some people do feel worse after them, so it's something to think about.

Please don't lose hope. I feel like there are a lot more people finding answers and pain relief than there were when I first started reading this website over a year ago.

Gentle hugs,
Jackie

[Grace]

Jackie and Ellie, I can't tell you how much it means to be able to say these things aloud to someone who knows what I'm talking about. I had no idea that it would bring this much sense of relief, or I would have posted a month ago.

I appreciate the honest responses. I think I am beginning to *think* about embracing the pain rather than fighting, mostly because I'm tuckered out. but also because resistance seems to yield persistence of pain. I'm beginning to hate my body andthe anger is starting to extended outward. And I don't want to be full of anger.

Lyrica was a disaster, but Cymbalta is OK. It's better than no Cymbalta. Much better, actually.

Thanks so much for responding to me.

Encouraged,
Gracie A

[calluna]

Hi Grace

Just wanted to add my voice here, also saying please don't give up hope, there are all sorts of meds out there to try. And you never know what's going to work for you, until you try it.

I'm on an unusual combination at the moment which has my pain levels down to zero for most of the time. Works for me... and in February I was dealing with the worst flare I've ever had, bar none, even post-op. The change is very surprising.

With regard to yeast infections, looking back, I too thought I had a lot of these - I now think it was vulvodynia/PN. Blocks - I have never had any.

One thing I would recommend is access to proper pain management, something like CBT for instance can be incredibly helpful - it doesn't actually change the pain itself of course but it does make a heck of a difference to how you manage it. I was lucky enough to be referred to a psychologist by my GP very early in this journey, if you have the opportunity for such a referral I would urge you to take it. I found it so helpful.

You say that Lyrica was a disaster - could I ask, did you titrate the dose up slowly, letting the side effects settle completely before taking the dose up again? Some doctors do want to throw people in at the deep end... It does work well for many people, particularly in combination with Cymbalta.

[Grace]

Thanks, C. I'm not giving up. But today I had to stand for nearly 15 minutes in the waiting room, waiting for the consult with the radiologist. I thought I was going to lose my mind!! I had to insist on a place to lay down immediately, which is not at all my personality (I am not one to be making demands). I even started to raise my voice when the receptionist was a little hesitant.

How on earth do I imagine going back to holding lectures and labs and trotting across campus for meetings???

After talking with the radiologist (and being forced again to observe my debilitation in a normal setting), I felt a little more safe about they CT guided nerve block.

Regarding yeast: I also know that my yeast infections for real yeast infections. At least several were. my doctor liked showing off my cultures younger nurses and interns because my yeast was textbook.

Regarding lyrica: titrated sensibly, but couldn't leave dizziness behind after 3 months. I constantly felt nauseous, and, almost comically gained an average of 2lbs/week. My friends and family were amazed!

[Violet M]

Hi Gracie,

You are a great writer. I enjoyed reading your post just for the sheer wit although I feel terrible for what you are going through.

Pudendal neuralgia is often caused by a combination of things and eventually there is the final straw that triggers it. It sounds like the yeast infections may have done that for you. I have read that Dr. Antolak believes that fibromyalgia is also a contributing factor because a lot of his PN patients have FM. Aging can cause changes in the ligaments. Hardened scar tissue from previous pelvic surgeries can become problematic over time. It can be a complicated disease process and there are no easy answers or quick fixes but most people do eventually find the right treatments that help them get back into life. Really, you have to become a detective and figure out what is contributing to the problem in your case.

There are different types of pelvic floor physical therapists and if they don't know about PN the therapy can actually make you worse. So, if you haven't already, you might want to get to a really good physical therapist or manual therapist who is experienced in treating people with pudendal neuralgia who also understands the mechanical aspects of the pelvis and can evaluate what's going on mechanically. PT doesn't help everyone and I think you are going to know early on whether it's helping or hindering.

Nerve blocks can be a good diagnostic tool. Once in a blue moon someone posts that they get better from nerve blocks but they are invasive and some of the physical therapists feel that too many can cause scar tissue to form around the nerve. Also, they are not without risk so I would not see multiple nerve blocks as the primary tool in recovering from PN.

MRI or MRN can also give some valuable info -- especially the 3T using the Hollis Potter protocol.

Right now you are still in the information gathering stage and hopefully you will find some valuable information on the forum that will help. It sounds like your family is very supportive so that is a huge plus in your favor and the fact that you are a fighter is also going to help bring you through this.

Violet