Fight or flight! Let’s go! Go! Go!

I won’t even lie and pretend to be okay. The reality that I won’t find a mechanical root cause for PGAD- meaning it isn’t a compressed nerve that can be fixed and reverse this fucking buzz in my body- has almost been too much to bear.

I don’t. No, I can’t live like this.

I’ve been trying to explain what persistent genital arousal disorder means to people- family and close friends… why is it so devastating to hear that it is likely never to get better and when Dr. Hibner says ‘it’s progressing’, that means it is getting worse.

I want you to set 8 different cell phone reminders. To go off periodically every hour.

Reminder 1- every 2 minutes.

Reminder 2- every 7 minutes.

Reminder 3- every 9 minutes.

Reminder 4- every 11 minutes.

Reminder 5- every 17 minutes.

Reminder 6- every 20 minutes.

Reminder 7-every 23 minutes.

Reminder 8- every 24 minutes.

Now. Go do something you must get done. Go try and compile a report at work. Go do laundry or run a meeting, how about cook dinner?

Every time that reminder goes off- be pulled to arousal. Or vaginal pain. Random Itching. Shooting or stabbing pains. These feelings every two minutes or seven minutes or eleven minutes is absolutely overwhelming for me. The ‘energy’ from the constant pull towards arousal is STUCK. It doesn’t go away because I want to focus on work. There is no way to release it. Orgasms don’t touch it, it doesn’t make it worse… but it’s not a true mental awareness arousal… where your love touches you and you react, anticipating the next touch. This is an itch you can’t reach or a constant buzz of energy and I’m stuck with all of that energy! And, it just moves and grows every time that alarm goes off. If your lucky, they’ll coincide and you’ll get disturbed once for two or three different symptoms/pains.

Now multiply that one hour, described above, by 24. Night. Day. Doesn’t matter the time or location. There is always some movement of pain or arousal and the energy builds until I literally want scream like a crazy mad woman to stop the ride. Get the fuck off. And never look back.

Then it calms. For 30 minutes

Then it flares. For 30 hours

Then it calms. For 3 hours

Then it flares. For 3 weeks

Then, the two times I’ve had a spontaneous orgasm… That energy, it still doesn’t go away!

There is no escape. It becomes impossible to breathe. Impossible to focus. Impossible to feel calm or safe. Impossible to ever find a comfortable zone… a plane my body can just BE on, with no pent up energy flying around body. I can’t find a calm.

I feel like I’m in a constant fight or flight mode and it is my body because my mind knows it’s not real. There is no reason to feel unsafe.

That is PGAD.

What ’didn’t happen’.

My plan to corner Dr. Hibner crumbled five minutes after He got in the room.

First question he asks, what makes you drive to see me…

PGAD, I say can’t live like this…- he asks what treatment have we done… (he’s logging into a new computer system so we start chatting about what has happened and what I think we’ve done so far)… I say, what was the last medication that was injected for the dorsal clitoral nerve blocks. He pulls up the note and- says, there wasn’t one done.

I just looked at him and calmly said our communication has sucked- (WHILE MY MIND IS SCREAMING AND RUNNING AND FILPPING TF OUT- it wasn’t even done) my fault and your fault… and now I have zero pain relief and I’ve been freaking out, in a constant anxiety mode with horrible pelvic pain, vulvodynia pain and I added that massive SI joint injury to the mix and all to drive here to discover the right procedures weren’t done.

*sigh*

At least I can stop beating myself up trying to figure out why this whole injection/block/hydro treatment was different. No wonder I have zero relief. Not to mention, he only injected 200 units of Botox and I needed at least 300 units.

So, The clitoral nerve block simply wasn’t done at the last procedure… Poor Dr. Hibner was mortified the order was wrong. We talked about the morning of that procedure and I explained that I asked a couple times during check in and up to anesthesia to add those procedures in addition to upping the dose on Botox. They all said they’d take care of it or try to add the block but no guarantee, it’s Ultrasound guided and can take a while to schedule… blah.blah.blah… same story as today. Which is fine. I don’t care how long it takes to coordinate these treatments because they happen every three months. Like clock work. Every quarter. Every quarter should be a combo of 4 procedures: 300-400 units of pelvic floor Botox. 30 minutes bladder hydrodistension. Bilateral pudendal nerve blocks. Bilateral clitoral nerve blocks.

Next time, I won’t sign the surgery consent if it’s not right. Lesson learned. This time, Hibner put my orders in the computer while I was sitting there so we agreed on the format while I was there… then, if there are any changes, I know to be diligent and identifying what orders need to be changed. It was no one persons mistake, just a spiral effect.

So now what? I will see his new partner, Dr. Julie Hastings, December 27th. Dr. Hastings will do a PGAD evaluation and Psaos/SI joint evaluation.

Hibner believes there is not a one single cause of any of this for me… I said, ‘which means I’ll never find an original cause and that means I’ll likely never be rid of it…?’. He agreed and then quickly added they’re getting a potential new laser tissue regeneration machine where they’ll be the first pelvic pain center to pilot the treatment with vaginal wands (think vaginal US- same concept). Treatment will be a consecutive 5 days in a row, in his office. Sign me up!!! I’ll get more info at the end of January. He also mentioned something about a new pudendal nerve interstim but asked that I get info from Dr. Hastings.

Hibner reminded me most doctors don’t even think this really exists so new treatment is few and far between…

I beg to differ. It exists. And treatment should be priority!!

I’ll update after my appointment with Hastings.

Until then, I’ll grieve the loss of hope, that I’d actually be able to reverse PGAD. It’s a shitty view from here.

Xx

LS

#OldGirlintheEndoGame #suckitendo #endendo #endostrong #PGAD #PGADbadass #PGADisreal #pudendalnervepain #endometriosis #pelvicfloordysfunction #interstitialcystitis #MMJpioneer #almostopiatefree #marijuanapatient #TeamHibner #TeamHinberGirl #TeamDsouza #refuseLupron #anxietyanddepressionhurt #Allodyniaawareness #nervepaineverywhere #damnitsomethingisstillverywrong

My Opiate haze.

I am so damn happy to report that I am opiate free. That’s right baby, I no longer take daily opiates to manage my pain.

Can I just say that again!!???

I. AM. OPIATE. FREE!

Fuck Yeah!

{{{But man, Yum… yum. Percocet}}}

Anyways, I fought a daily, internal battle for almost 10 years.

Every day, shit, every pill… I’d ask myself a series of questions.

  1. Do I really need this pill?
  2. Is the pain REALLY that bad???
  3. How many have you had today???
  4. What ELSE have you taken today to avoid Percocet ~
  5. muscle relaxers???
  6. Anxiety medicine???
  7. Tylenol, Motrin???
  8. What time is it???— close enough to bed to just pop it and pass out???

I was taking so much shit, every day, all day, pills.~~

~~Disclaimer: please know, if I didn’t have the medicines in this post, I would not be here today. I am only alive today because of all of these meds. Don’t misunderstand. There was a time, a place and a true need in my life for those drugs. ~~

~~And if I hadn’t had those meds, I’d be dead for sure. Every day, it was a struggle and I would do everything in my power to not take a Percocet. For a lot of reasons but the main reason, I fucking love Percocet and the way it makes me feel so I avoided taking it. By the grace of God, my husband, our little, my brother, my sister, & daddy too… I avoided an addiction to opiates. Barely.

  • Holy crap, I was on a lot of shit!
  • Fentanyl- 25 mcg, 1 patch every 3 days
  • Percocet- 7.25/325 mg, 4-6 pills a day: *never less than four*, if I needed more I’d take some from my dad. (He didn’t like the high like I did).
  • Duloxatine (Cymbalta)- 60 mg
  • Xanax 10 mg
  • Flexeril- 10 mg
  • Baclofen, diazepam and ketamine suppositories- compounded and I can’t remember the dose now…
  • Some other stuff I can’t remember now! Mostly antidepressants- sertraline, Effexor and who knows.
  • That was my daily drug list.
  • But. I never gave my body the same amount of medicine I allowed the day before… the significance of that statement is this: if I had a shit pain day, if I allowed myself to fall for the pain and take unlimited meds, AT the same daily consumption rate as yesterday, my body would reset itself to the unrealistic ‘zero pain level’ that Percocet gives me. I knew I could never let that happen.
  • Dr. Netley D’Souza, ACP, Tucson, guided me through one of the longest, saddest, most depressing 10 years of my life. He told me as he wrote my first script for Fentanyl, ‘listen- Percocet and Fentanyl will never totally get rid of the pain and you never want to try to use it to do that. If you do, you’ll become addicted.’ I love him, always will. I credit him as being the doctor that took action when I needed him most. Somehow, he saw I really needed him. I’ve told my husband a million times in the last ten years, and a million more over my disease process/path- when these ignorant doctors fucking kill me, sue every mofo except my Dr.D. The list has expanded to my Hibner too… but not many more will ever be allowed to touch me, so I doubt this list will expand any time soon.
  • Dr. D’Souza telling me not to expect narcotics to fully get rid of my pain allowed me to see this as a fluid process. One where I see pain as closer than my shadow because it is always with me. Pain like this requires constant love, care, attention, time, rest…! I never know what caused it, brought it or what’ll get rid of it but it’s a process of constant fluid motion and use of different combinations of pelvic floor physical therapy, heat, ice and meds to help decrease and manage symptoms. All that movement every day, just to do the bare minimum to survive and I promise I didn’t do any ONE thing well the last ten years except survive.
  • So, The decision was made: its time for me to go off opiates and onto MMJ. January 2017, I walk into my first dispensary, The Downtown Dispensary, with the help of my girlfriend, and longtime cannabis activists, Jen Elstner, by my side. I start my medical marijuana journey and my ultimate release of daily opiates.
  • Damn… that seems like a long time when I see it in black and white. And, It was. I had zero timelines set and zero expectations except that I would get off Fentanyl. But the universe had other plans for me and a whole lot of fucked up shit happened in between then and today. Not to mention all the medical procedures the last two years. Don’t forget-, I have full anesthesia/epidural procedures every three months. Not all of those procedures are complication free. So, yeah, it was a long time.
  • First up and off completely was Fentanyl. I slowly increased the number of days between patches. I’d ‘stretch’ my 3 day patch to 3 & 1/2 days. Then to 4 days, then to 4 & 1/2 days, then to 5 days and one day I realized I couldn’t remember how many days it was, so I simply stopped replacing patches. I gave my last Fentanyl prescription back to Dr. D!
  • I didn’t make any other medication changes while I weaned off Fentanyl.
  • Then I started on the next drug… and the next and the next. Until I no longer took a daily pill of any of those medicines.
  • Except my Percocet.
  • Percocet was my pain security blanket.

    I was happy being the one that got off Fentanyl. I had zero desire to wean off Percocet. Zip. Zilch. Nada. Nope. I got off everything else. I’ll just keep my little pills…

    But no. At last… I’m asked to wean off Percocet. Thanks to Svetlana Burtman, NP @ Renewed Medical Health. She’s been a gem and put up with my crazy while I go on hormones (fuck-this sucks), off Percocet and have some crazy PGAD flare & some auto immune thingy happening for over a month…

    For some reason I heard myself agree… I said, ‘I’ll try’… I was actually more curious to find out: Did I really need Percocet or did I just love it? Until a month, month and half ago, I’d never thought it mattered if I were off it or not because I’d given up all those other drugs.

    What can I say, I don’t need Percocet every day. For the first time in years, I don’t have a revolving door of narcotics to help manage my pain. Opiate free!

    I am opiate free.

    I know I’ll still need Percocet for procedures and bad flares but I promise you, I don’t need 120 pills a month anymore. Hell, I may only need a script every procedure month!

    Yes!!!

    Now to examine the other truth that writing this post has just shown me. Coming off opiates is why my body is in a fucked up flare. But, that’s for a different day. A different blog.

    Psst… I’m opiate free!

    Xx

    Lilly Sue!

    Blue October, Picking Up Pieces

    It’s Sunday. 7 am. Been up for hours. My love got called into work so I helped bundled him up and get him gone. With a kiss, as always.

    I start facebooking to see what’s up or what have I missed but the village was super quiet. I am in so many medical Facebook communities that it’s rare it is quiet!

    Ok- bed, huge cup of coffee and music… maybe some more snoozing? One can hope, anyways.

    Music. Yes, please. I dig into Blue October. I have always loved this band but after the birth of my daughter, I had such massive postpartum depression that their 2006 album, Foiled, was my go to. It spoke to me and I loved all of it.

    I haven’t followed music like I used to so this morning was a rare gem. ♥️ I also rotated some laundry- I hope to actually fold and put it all away. I said ‘hope’.

    I finally land on Picking Up Pieces, by Blue October.

    Oh man. I’ve been crying ever since. It’s a good release and one I have needed for a couple weeks now but damn it.

    I love this Version: Acoustic- Picking Up Pieces

    No matter what you’re dealing with- mental health issues or medical issues. OR maybe, just maybe… Medical issues that cause mental health issues… ?

    What.the.fuck.ever.it.is. ‘But, I still walk on.’

    Here are the lyrics:

    I really need to talk with you
    I keep stepping on the vein
    That keeps my lifeline flowing through
    I wanna be your perfect stick of glue
    But I don’t feel perfect at all
    Sad and insecure flaw
    I find it hard to hold conversation
    I get sweaty sick and I wanna walk away
    Its not you its strictly me in this situation
    I’m wondering will it ever go away…just go away
    Sometimes I feel like weeping
    Awake and when I’m sleeping
    Perfecting how to put a game face on
    This puzzle I’ve been keeping
    Has been in hiding creeping out the closet door
    Spilling out onto the floor
    How long will I be picking up pieces
    How long will I be picking up my heart
    I’ll be as honest as I feel
    I’m getting more paranoid and I’m hearing things
    And they never turn out real
    It feels like my heart is made of pure steel
    It’s just so heavy all the time
    Yea I’m scared of death
    And I’m scared of living
    I gave up on the past cause it’s unforgiving
    I misplaced my trust
    I watched my word begin to rust
    I’m a balloon about to bust
    I need a place for reliving
    But sometimes I feel like weeping
    Awake and when I’m sleeping
    Perfecting how to put a game face on
    This puzzle I’ve been keeping
    Has been in hiding creeping out the closet door
    Spilling out onto the floor
    How long will I be picking up pieces
    How long will I be picking up my heart
    How long (in another space and time)
    Will I be picking up pieces in the corner of my mind
    How long (its getting oh so hard to find)
    Keep picking up pieces in the corner of my mind
    But I still walk on

    My week of more fucked up firsts!

    It’s been a very long week. I haven’t sleep very well this week. I felt very tired when I woke up on Thursday but since I was awake before the alarm went off, i decided to just get moving for the day. About 30 minutes after I woke up, my stomach starts hurting, bad! It just got worse and worse. It felt like it was out of the blue and then all the sudden, The left top abdominal wall was actual moving on the outside of my body and very painful. I could ‘see’ it cramp… odd but then…. Ouch and ugh. I can tell where this is headed. I stay close to the bathroom.

    In the three hours it took me to get ready for work, 2 of those were spent on the toilet. Ugh- what ever, I’ll just roll with it, get it all out and then head to work. I’ve suspected this was coming because the ‘left SI joint VS garage door handle’ locked the entire left pelvic floor. But only the left side. I should have gone to the ER last Thursday but refused (as any true chronic pain patient would do). I knew then I was having massive issues moving the intestines because my stomach was hard to the touch.

    I managed to get The husband out and then me and the kid up, dressed and out the house- not only in one piece but no fits and no fights! Even after the morning I had.

    Anyway, I make it the 25 minute drive into work and BAMB- a massive stomach cramp hits and I am literally doubled me over in the parking lot at work, in my car and before I knew anything, I was incontinent of bowel. I sat there until the intestines stopped cramping and then took off to the restroom.

    I can’t even pretend I was okay so I won’t. I cried. In the bathroom, at work and It’s ONLY 8am. I have a full day at work and zero way out of it. But more than that, what in the fuck would I do at home besides beat the living shit out of myself for having no control to stop the events of the morning.

    This year has been some seriously fucked up firsts… in no particular order: a first to wet the bed (at my sisters, I might add- not even my own bed) during a wicked interstitial cystitis flare. My First spontaneous orgasm occurred climbing in the truck. My First true bowel incontinence. My first career loss. And, The truly sad thing, these firsts I’m talking about have all been followed by a second or third… these assaults come from all sides. They don’t stop. They haven’t stopped for a long time.

    These medical issues are spiraling out of control. If I can’t find the core auto immune issue, I’ll only ever chase diagnosis after diagnosis. I’m tired of begging for help. Physician oversight is next to impossible to find and if I do, they’re SO subspecialized that it’s hard to get them to pull out of the weeds long enough to help me see the big picture and how what they do for me IS related to the issues I’m experiencing now and how it all fits. I need a rheumatologist now! Omg- in Tucson, that’s gonna be flipping impossible to find. Endocrinologist is the other doc on my list to locate. Anyone got any good ones in Phoenix?

    I’m tired. I thought the darkness would close in on me if I became incontinent but a fellow PGAD sufferer told me I have options if that does happen so the darkness is receded a bit. Still a bitter truth of my future if I can’t find the root cause.

    One foot in front of the other. That’s how I do it.

    #OldGirlintheEndoGame #suckitendo #endendo #endostrong #PGAD #PGADbadass #PGADisreal #pudendalnervepain #endometriosis #pelvicfloordysfunction #interstitialcystitis #MMJpioneer #almostopiatefree #marijuanapatient #TeamHibner #TeamHinberGirl #TeamDsouza #refuseLupron #anxietyanddepressionhurt #Allodyniaawareness #nervepaineverywhere #damnitsomethingisstillverywrong

    🌻🎗

    The darkness…

    …sometimes, all I can see is darkness. Chronic, massive pain kills all the color in my world. It changes the sweetest sounds into the worst screech. It robs the taste and smell from my senses. Everything is eventually dulled until it just fades to black. That is what the hopelessness of chronic pain looks like for me. A slow decline where I feel as if I am drowning in a pool of darkness.

    I’ll be the one to say it. I don’t necessarily want to die but I’m sick of living like this. If that means I die tomorrow, I’m okay with it because I am tired of living in this darkness. But let me explain what this means.

    No. I don’t need to be admitted.

    No. I’m not crazy.

    No. I haven’t ‘given up’.

    No. I’m not hysterical.

    No. I don’t want your pep talk.

    ~~~Seriously- save it.

    No. I’m have not planned my death.

    No. I have not set a ‘date’.

    No. I will not apologize.

    So…

    The darkness I’m referring to is the blackest when I don’t have a ‘Next’ plan. Honestly. I have only survived this far by always looking to the next treatment option. What’s the back up plan? A next step. A process on what to do next. I’m not asking for anything that everyone else wouldn’t want if they got to walk a minute in my shoes. Not a mile, just a minute!

    It’s been a rough go. Not gonna lie. The future for me will always be spent trying different treatments. It’s a series of trial and error processes and constant movement of trying new procedures. I feel this shift where it’s a fade to black each time I exhaust another doctor or a new treatment fails.

    I’ve had this written and edited and rewritten for a couple months now. I debated not posting it at all but it needs to be said. I need to say it for me and I know my fellow PGAD warrior Hope and Fellow IC warrior, Tori are also struggling with the same deep darkness. Their recent struggles have given me the strength to finish this blog. I love you ladies and I thank you for sharing your darkness with me. It makes mine less scary and, some how, less dark.

    Just because I see and feel, taste and hear darkness, Doesn’t mean I am going to kill myself. It means that I just want to live pain managed. That’s really not too much to ask for.

    Xx

    Lilly Sue

    Down the rabbit hole, I go.

    I’m back in familiar territory… one full of pain. I’m so sad to say that the pain is almost overwhelming tonight. One injury… one, smack in the SI joint and I’m literally back in overwhelming pain.

    The pelvic floor is so tight. The bottom of that rabbit hole looks like this: Problems with bowel movements again, nothing in OR out. Urinating 50+ times a day! The radiating pain down my legs and numb toes. This is a colorful landscape of angry pain combinations. One I hate to feel again.

    I feel SO sad to be here, again. Seriously. Never take good days for granted.

    Hibner has added to his clinic schedule- I’m blessed to have been tucked nicely into his added day in Mid December. I’ll apologize for being unreasonable about the MRI and actually talk to him about this damn diagnosis of PGAD and maybe try to tie all these pieces together in my head.

    I also started HRT again. I know… I swore I’d never do HRT but, I’m not doing so well off it. My blood work showed estrogen was less than 5 and un-reable! I had pellets implanted last week and was given a prescription for progesterone. Blood work also revealed my thyroid is very low. Even though I did lose more weight, I’d gotten a couple more pounds on me… trying to push thru and eat food.

    *back to the toolbox for pain relief!

    Xx

    Lilly Sue