Longtime Lurker, First time Poster

[MauraH]

Hello people,

I am posting today to introduce myself, and because I am lacking the social and emotional support that I need right now. I have been suffering with PN since 2005. My story is long, but writing is therapeutic for me, so feel free to click your back button and move along.

My original injury occurred during an advanced level modern dance class or the following yoga class at age 40. As a former professional dancer, my brain was *right there*, but my old and de-conditioned body was not. I had immediate severe pain at Alcock's Canal on the right side. At first I thought it was a high hamstring injury, but was repeatedly turned away from orthopedic doctors due to the location of the pain. My GYN knew nothing either. It took 2 years of research to finally find a pelvic pain specialist--a doctor who was willing to treat me. Diagnosis: PN.

For the following 5 years, I tried every treatment option that was offered to me. NSAIDs provided some relief until I developed colitis. No more NSAIDs for me, ever. I endured 3 dedicated rounds of pelvic PT (2 with "Pelvic Guru"), which only flared my pain with every visit. I had a uterine ablation to reduce period-related pain flares. I tried an intrathecal pain pump. Ad infinitum. At the end of this 5-year period, I was having some success with Nucynta and Zanaflex, and decided together with my doctor that a hands-off approach kept my pain levels lowest. I quit my job to facilitate increased rest. Eventually my pain reached a tolerable level, with all of the lifestyle modifications and cushions and ice packs and braces I could buy. I continued to visit my doctor regularly, and she continued to prescribe pain medication. Since I could tolerate the pain, I considered the PN to be "in remission". I was able to travel, to dine out, to attend cultural events and sporting events, to walk my dog 3 miles every morning, and have a social life.

Fast-forward to March 2017. I had been keeping an eye on a dull ache on the top of my right foot near the toes. Apparently a stress fracture was brewing. On the 15th of that month--a day that is forever burned into my memory--I took my mother out to get routine pedicures. During the massage portion, my pedicurist broke my toe. Metatarsal, actually. Generally slow to heal, I spent 12 weeks in a walking boot/cast. During this period, my PN acted up. My pelvic pain doctor had closed her private practice and moved to the local VA Hospital, where I have no benefits. Out of luck and in increasing pain, I finally found my way to the only specialist in my state, thanks to the extensive research conducted by my lovely foot doctor.

The first time that I saw this new pelvic pain specialist, I was still wearing the boot on my right foot. My PN pain was off-the-charts excruciating--pain levels that I had *never* experienced before. I was bedridden with pain, laying on my belly (the only tolerable position I can find, still), with my foot dangling off the edge of the bed. The doctor and I began our professional relationship and treatments. Nucynta and Zanaflex. Four nerve blocks. Two costly stem cell surgeries. PT. Seven trigger point injections to the pelvic floor. Discussions of Botox. Monthly visits.

In March 2018, I phoned for an emergency appointment with him due to extreme levels of pain. It was four months after my second stem cell procedure (twice the amount of stem cells, at twice the cost), and I was in complete relapse. At this emergency appointment, I expected to schedule a third round of stem cells. The second procedure had in fact provided me with three weeks of complete relief. Instead, the doctor wrote me my final prescription for Nucynta along with tapering instructions. There are other pertinent details of this visit, but I'll spare you and just say that it was traumatizing. Next the doctor pulled my scripts for Zanaflex (which I had been on for over a decade, and is so very benign) and Neurontin (which wasn't helping anyway). Long story short, I never heard from his office again.

In the following months, which lead up to now, my neuropathy is spreading far and wide. Previously right-sided pelvic pain has spread to the entire pelvis. Both ischial tuberosities are screaming. Both sets of hamstrings are throbbing. Both psoas muscles are tender and sore. The iliac crest stings like a bee. On the right side, the pain extends to the lateral side of my foot and sometimes the sole. My spine, from coccyx to cervical spine are killing me. And I've been reduced to Tylenol and ice. Sucks to be me right now.

I have taken some proactive steps to seek further treatment. My PCP has referred me to a pain management doctor. I am also scheduled with an out-of-town specialist. Appointment is a few weeks out. Meanwhile, I wait in bed (and try to figure out how I will travel). I'm severely depressed, big surprise? So depressed that I have no appetite and zero hunger signals. I've dropped 40 lbs off my petite frame without intention. My family relationships are strained, particularly with my young adult children who are temporarily living at home. I'm sure that they are scared and sad to see Mom like this, but it's easier to express anger and be judgmental. They truly do not understand, and have no inclination to do any research of their own about PN. They think that I'm 100% identified with my pain and depression, and that I just need to do more, power through this, and stop being so dependent on their Dad for physical support. I am attempting to accept that their point of view is valid for them, without taking it personally. But I am taking it personally, and it hurts so very much.

I talk to a psychotherapist weekly (often by phone from my bed) and have a longstanding relationship with a prescribing psychiatrist for antidepressants and anti-anxiety meds. I am seeing a nutritionist and have gained 4 lbs. But the desperation for pain relief is real. I am sure that you all understand this, but no one else does. Even my beloved husband, who does everything good for me, cannot know how it feels to have a dagger in his crotch along with pain up and down his body. I'm currently isolating from everyone in my life. The depression is so deep that I could probably benefit from inpatient therapy at this point, but there's no way on earth that my body could tolerate participating in these types of structured programs.

I swear I'm doing my best here. The feedback I'm getting is that I'm not doing enough to get well. All I can rely on is my own knowledge that I'm doing my best in a terrible situation, that is also having negative fallout on the people I love. Sometimes that truth only feeds the depression.

Mental health aside, the simple fact is that this pain will not subside. And I'm at my wit's end. So here I am, finally registering an account in another attempt to improve my health. If you've made it this far, thank you and congratulations! It's nice to meet you!

[PainedCT]

Hi Maura-

I am so sorry you're in a dark place with the pain right now. I too am continually frustrated with the wait time between every appointment with little to no relief in between. It seems everything I need has a 3-6 week wait with no end in sight. Although my husband and kids are super supportive and understanding, I still struggle every day with the mental part of PN. One of the hardest things I wrestle with is that I have nothing to look forward to but more days of pain, and my life is like Groundhog Day. Taking medications, lying in bed, working on and off throughout the day(from home), taking more meds, middle kids come home from school, hubby picks up 4 year old from preschool, I help make dinner if I am up to it (many nights I'm not), put kids in bed, and take more meds before bedtime. Every weekday. Saturdays and Sundays look much the same except kids are home more.

I don't have any other advice for you other than to keep the faith that you will find relief eventually. You've had this for a lot longer than I have, so I don't have any other suggestions for you in terms of treatment. I'm only 10 months in - mine was the result of a hysterectomy last November. I'm 35 with 4 kids.

Katherine

[Violet M]

Hi Maura,

Well, I did read your entire story and I think you are an excellent writer.

Chronic pelvic pain does something to your mind that no one can understand unless they have been through it. It is so overwhelming that you can't just power through it like your children expect you to. So I just want to validate you in how you are feeling and let you know that it is totally understandable to those of us who have been through it. I'm not sure what you can say to your family to get them to understand, other than to suggest they read parts of this forum to see that it isn't just you and it's not all in your head -- that this is a very real disease that is extremely difficult to treat. It is unconscionable what your doctor did in just immediately cutting off your medications like that. I can't think of why he would do that unless maybe he was in trouble legally and had no choice but to stop prescribing the drugs. It seems very odd.

I know it seems like forever when you are waiting for appointments. Hopefully the new pain management doctor will be able to help you get the pain back under control again. I wish you all the best with your upcoming appointments.

Violet

[AuntNetty]

Hi...I was a Longtime Lurker too....were all still out here just trying to manage our pain too. Firstly...let me say "I'm so sorry your in pain". After reading your story, i feel i can kinda relate.
Example, My Husband will read on his phone all the time...and never read about pudendal nerve damage. He gets tired of hearing about it...not that he doesn't care, he just doesn't know how to help. He has been through years of surgeries, injections, procedures, you know the"You can't make this sh** up stories" that go along with all of that....right along with me. He would do anything he could to fix me.
It looks like you have tried a lot of things to help your pain. It's a tough diagnosis to deal with. You love your family i'm sure, and i'm sure they love you right back. That's all that really matters in life anyway. Always believing every procedure you try is gonna work, only to still be in pain (in my case more pain). They have been let down with you. They don't know how to help...and they want to...so they just distance themselves from it. They can't actually feel your pain...but i'll bet they would love to fix you if they only knew how. It affects many aspects of your life...causes stupid bikering and fighting. I wish i could trade them for just one day so they would understand...i would never wish it on them...but even then you can't understand what it's like when it's chronic...when you never get better. It feels hopeless. But we make the best of it and love pulls us through. PN affects the entire family. I'm on here tonight looking for success stories, so i can muster up the courage to go try go try botox to left vaginal wall, oburator, and psoas. I have two insurances, and they wont pay. Here we go again. Anyway, Good Luck
It isn't about waiting for the storm to pass anymore....It's about learning to dance in the rain...Let's dance

[solarmom]

Hi
I don’t visit here much anymore but read your story with interest.
My pain came on suddenly on the left side, the same side as my SI damage.
So I know it is it mechanical.

Did u ever investigate the stress fracture cause? I assume you were postmenopausal and wondered about osteoporosis.
It sounds like wearing the boot put your entire alignment off. I would hurt like that-burning up the spine, psoas screaming,sitbones like fire. For me it helped to use a muscle relaxant but there was also an arthritis med.
With your dancing history, it seems like u could be checked for osteo,

I hope you can feel better

[frigator]

So sorry to hear of you plight. I understand how you feel, I just signed up here myself recently and have learned so much. There is a wealth of info here.

That is criminal that these doctors are cutting off pain medicine like that for the people who really need it. I would try to get an emergency appointment with a pain doctor and get back on the pain meds. I dont think I could survive without these meds. Ice and hot baths are helping also, esp the ice.

Feel free to post how you feel and I pray you find some relief soon