Time for change.

I am a month past my last procedure. I always hate to post these, ‘I feel good’ updates because it usually fucks me and I end up in pain the next day… like Murphy’s law kicks in and surprise!!! The pain reappears and says- I’m back.

The IC is calm. No crazy spasms or urgency. The pelvic floor is calm 96% of the time. Experiencing A Charlie horse in a muscle you can’t reach really bites! The SI joints, while still hyper-mobil are relaxed enough to where I can at least pop them back into place on my own when they shift out. It feels good to be able to relieve my own pain. I’m at a two. Pain managed with half the MMJ I’ve been needing, and I am still opiate free.

The plan for next? As presented to me by Hastings from MRI results. Two phase recommendation: I was supposed to make a pain management appointment and discuss injections into the SI ligaments to ‘scar tissue them up’. That will supposedly help with the hyper mobility issue. Then, I was supposed to go see Hibner about the super vascular area that needs his attention. Almost a pelvic congestion syndrome needing coils vascularly inserted in the pelvic cavity. My thoughts? No thank you. To both recommendations.

I will be perfectly honest, I didn’t do very much research on either procedures because If I allow ligament injections, my husband and I both know, I’ll end up in a wheelchair in ten years. If I allow any type of vascular surgery in my pelvic area, it can never be undone… never return to pre-surgical state and it’s all a crapshoot and I’m so sick of being a medical guinea pig. I’m sick of treating one thing and creating more problems. I’ve said it over and over, my body has proven it doesn’t do what you expect and then stop, hell no. This body goes so far to the extreme it requires procedures on top of more procedures and still more to fix the damage and fuck ups of prior surgeries and procedures, dismissals and ignorance from the medical community.

I am going to make a follow up with Hibner. I want to discuss this AMAZING vast reduction in pain and overall symptoms, with all the right blocks in and active together. I need to understand where he placed the two, bilateral pudendal nerve blocks. And see if it’s possible to start looking into the implantable nerve stimulator devices. Or interstims, as I refer to them as.

I don’t want to do quarterly procedures.

I don’t want anesthesia and epidurals anymore.

I can’t even begin to describe the spine pain I constantly feel in one general area… epidurals hurt. Especially botched epidurals. I wonder, is that area healed before they’re punching another huge needle through my spine three months later?… If I’m lucky, and I mean IF- the anesthesiologists gets me on one poke. I’ve come out of there with 9 visible, ‘attempts’ to get a spinal placed for one procedure. The last anesthesiologists said because I’m so super skinny, it’s actually harder to get an epidural placed. Who knew…

I just can’t do it anymore. I sound so ungrateful and believe me, I’m not. I’m just very battle worn. Body and mind.

I feel like the vulvodynia, PGAD, pelvic floor dysfunction are all nerve related secondary to muscular. I’ve had the two conditions my entire life. As long as I can remember, I have had pain and remember hypersensitivity including orgasms in kindergarten but didn’t have a clue what they were. I didn’t have very many of them. I remember oddities like that for as long as I can remember… always pain. Always hypersensitive.

So, it’s time for a long term alternative. I need to know what being hyper Mobil will do to leads being placed, can one device implant in two separate areas of the pudendal nerve, bilaterally? Can one device control 4 leads?

I have a lot to learn and a lot of support from fellow pgad badasses that have already gone before me! They Blazed this trail… and lit it up so I could see the option is there.

I’ll update soon. Once I have a Hibner appointment scheduled or the blocks wear off… Let’s see how long the blocks work. I’m a month in. They last 6-8weeks. Eek

Xo

LS

No neon arrows.

Just as I suspected. There was no ‘flashing neon sign’ highlighting the exact issue on my pelvic MRI. Hell, There were no signs to point to anything abnormal in the pelvic cavity.

Dr. Hastings called and went over the results with me. She too, didn’t think there would be any great ‘ah-ha– that’s it’ deformities visible on the MRI.

Dr. Hastings also asked about the SI joints. The right joint is fine but the left SI joint is still killing me. She stated that the joints are too Mobil and it may be time to see a specialist for evaluation. I was driving so I couldn’t write the name down but Dr. Hastings said this doctor can inject the ligaments of the SI joints with a sugar water solution that the ligament will then create scar tissue around so the joint isn’t hyper mobile. I have to research the hell out of this. Building scar tissue is not my idea of a good time…

Dr. Hastings also stated that on the clitoral ultrasound guided nerve block, the veins around the area are larger than normal and that will require another surgery to fix it. Because I need another procedure…. but most upsetting to me is I called Hibner’s office when all of this shit started and told them something was wrong. The swelling isn’t normal and it goes away at night and comes back during the day. Some days are horrible and others aren’t noticeable. Dr. Hastings wasn’t around when all that went down so there isn’t anything she can say.

UGGGGGGHHHHHHHHHH!!!!!!!!!!!!!!!

I wanted to fucking scream and throw my phone out the window while I’m flying down the highway.

I want to scream: Living like ‘THIS’ (I just gestured to my entire body)… means that I constantly feel like I want to rip my skin open. Just Shred it- and let all this energy out. Let all the pain and suffering just leave my body. Lifting itself up and up and out of all the holes in my skin. As the pain leaves my body, I get to feel lighter and lighter until there is no pain. No.more.pain. Once the pain goes, the rest will too…. No more doubt. No more anxiety. No more judgement. No more wrong answers. No doubt that I’m am really not crazy. No more over-processing and analyzing everything.

But no… I don’t do any of those things. I sat quietly, On the phone and Let her tell me I need more surgery and more procedures. Despite me asking for another alternative. Despite me begging for another option to live with… explaining to her that more blocks and procedures isn’t the answer. That’s no future at all.

I will have to follow up with Hibner to talk about the vascular issues. As I type that, my heart sinks. I may need a break before I can do any more medical appointments. The heart ache that accompanies each appointment piled up until it is to hard to overcome. I want to find some viable pain relief options for the long term. Guess I’ll call and see how long it takes me to even get an appointment.

Send prayers and positive vibes. I need them all right now.

Xx

LS

Almost a week out.

I’m almost a week out from my wicked procedure lineup on Thursday. Bilateral SI joint injections, bilateral clitoral nerve blocks, bilateral pudendal nerve blocks, 300 units of pelvic floor Botox, bladder cystoscopy with 30 minute hydrodistension. My body is a pin cushion.

I feel like complete crap. The SI joint injections have kicked my butt but mainly the left joint Injection. Like it wasn’t the correct spot or it’s still out of alignment. It is causing the left pelvic floor to not sit right. I keep getting a Charlie horse in the left side only, it’s weak but still painful. the the left side of my neck is pulling really weird.

The clitoral nerve blocks are at 80% quiet now. They went from a completely, 100%, never-get-to-feel quiet to 80% quiet. Sudden Nerve shocks don’t feel very nice. Particularly when they’re always at the worst times. I hope 80% is the worst it gets before it calms down again. To know it can be quite but isnt is unbearable mentally.

Sleep is required to heal and there isn’t much happening lately. My mental anxiety is only increasing due to the recent loss of my grandmother and required travel to say my final goodbyes.

My goal to do this Percocet free is gone.

My goal to be positive and focus on healing is gone.

My focus is surviving the next week or so until the full effects of these blocks take hold. Once the dust settles, then I’ll know if it worked or not.

Cross your fingers, toes and legs. I need all the help I can get. Prayer and positive vibes are all welcome too.

Dr. Hastings

I like her. She didn’t dismiss me or try and convince me I was ‘okay’ when my body clearly is not okay. We spent an hour together.

She isn’t a gynecologist. I repeat. She isn’t a gynecologist. Dr. Hastings is a physical medicine doctor. She works with the mechanics…The bones and joints and muscles! And she said integrative medicine- ♥️

I have 6 things to do.

1. I need to find a physical therapist that can do a physical therapy mobilization of the SI joints. So, a chiropractor that can manipulate my SI joints. Honestly, after yesterday’s very simple and minimally invasive (she only touched my SI joints and I’m dying now. Ouch!) So the manipulation, while sounds like what I need: Also sounds painful. AF.

2. Hypnosis and EMDR. I have a lot of research to do on this. Dr. Hastings and I spoke about the constant fight or flight mode I feel like I’m in. And the sheer energy that PGAD brings to my body. She believes it needs be addressed on a psychiatric level. It bothers me that my body is so fucked up I have to try and retrain the system to separate pain from pleasure. And that not all stimulus should create energy. Early childhood sexual trauma looms in my brain like a big scary beast. While my mind was happy to forget, the body- the body never forgets that trauma. Honestly, I’m terrified of this. Doing this… mental poke around. I have to do a lot of research on this and it’s unlikely I’ll be signed up tomorrow.

3. Physical therapy check ups. At least monthly. It’s impossible for me to get to Melissa Buss every week, but maybe, once a month? I have to call her. If not, I have to get the husband to help me on a consistent basis and not just when I’m dying.

4. Rheumatology! Ah- she believes me. Auto immune exploration, here I come. Right after she finds me a doctor…Outside of Tucson. (Tucson Rheums are asshats!). I told her I can not doctor jump to find one that will help me or believe me… We spoke about Bechets Disease. The recurrent uveitis, mouth sores, scalp sores… she knows I need a good doctor but she recognized that what ever ‘it’ is, won’t be easy to find. She’s going to ask her community who they’d send their momma to. Then, maybe then, I’ll go.

5. Pelvic MRI- yes. I’ll finally be getting my MRI soon. She will do the special MRI where they look for signs of congestion and swelling and all the other things us PGAD suffers know about needing when we get an MRI. Of course, just any MRI won’t do for me! *wink*wink*

6. SI joint Injections. There it is. I’ll add two more injections to my treatment. Jesus.

It’ll be a flurry of activity when I get to Phoenix on the 17th. I’m not looking forward to this… I may call and cancel the bladder hydrodistension but if I do that, and the bladder flares, I’ll be screwed for three more months. I won’t do 400 units of Botox. I couldn’t walk the last time they did 400 units so I know I’ll ask for 300 units instead. Then the bilateral clitoral nerve blocks plus bilateral pudendal nerve blocks and now bilateral SI joint injections. What. The. How is this even possible or acceptable? It can’t be okay to be a human pincushion every 6 weeks for nerve blocks and every 3 months for Botox. There has to be an end goal after this.

I asked again about long term: interstims? but I don’t think she will focus there until all these other items are addressed or being processed.

Hastings wants me to consider gabapentin. Or another nerve pain medicine. We discussed being a MMJ patient and successfully getting off medication. The side effects of most I need now are worse than the supposed treatment. She promised not to make me go back on anything but wants me to consider it. More research to come.

I did talk to Dr. Hastings about the constant energy and no release and fight or flight mode being stuck in ON mode. The fact that I need something for hope. Some treatment options to hinge tomorrow on. Something to believe I’ll be okay. Otherwise, why live like this? Why live in a body that betrays you at every turn? One you can’t control. Can’t find release from. Can’t calm the energy? But-What about the pain? Fuck- I got that. I can handle the pain but the energy and hypersensitivity together are a no. Maybe, just maybe, it’s the COMBINATION of energy, hypersensitivity and the pain that are just too much to take! OR- Maybe I just can’t fucking keep it all together anymore and two mental break downs on top of constant pain in combination with the extreme hypersensitivity and unrelenting energy is just the combo to bring a giant down but here I am. Standing! Barely. But still standing.

PGAD men: Dr. Hastings is looking into permission to treat male PFD and PGAD patients.

I gave Dr. Hastings my blog. And invited her to join the Facebook group for PGAD sufferers. Not to electronically consult- just to watch. Pay attention to posts. Learn. And help recommend new PGAD sufferers to a community of like minded people.

I believe, eventually, if not after this next Botox that Dr. Hastings will take over my care. It makes sense… I don’t need Hibner’s excision surgeon skills to do Botox. He is so busy, he’s bumping procedures because women are needing him, desperate for surgery. He has to be available for excision. I’m not 100% sure I’ll be transferred to Hastings but it’s okay if I am. I say that with tears… Hibner has been my angel for a number of years. Hastings has the same potential. I believe neither will abandon me and both will team to help- no matter who manages my disease(s).

I don’t know how I feel about all this. So I’ll do my usual and start researching the pieces I need to know more about. It’ll take time to put it all together anyways.

Xx- ls

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

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!