Next step in process

I did it. I called Hibner and got more info. He doesn’t do the interstim and I wanted to cry. I knew it would be too good to be true if Hibner did them too! That means, I have to leave my comfort zone and go see a urologist Hibner recommends. Hibner immediately spit out the name: Dr. Daniel Jaffee at Affiliated Urology in Phoenix.

I was assured by Betty, Hibner’s triage nurse that Dr. Hibner immediately said great idea and send her to Dr. Jaffee. She reassured me that Jaffee has experience with more than just urological interstims… like- PGAD???!! Pudendal neuralgia interstims too… yes!

I didn’t stop there, as is typical for me. I actually called Jaffee’s office and asked for a consult to discuss interstims. I stressed it is not for my interstitial cystitis. I want PGAD and pudendal neuralgia interstim consult. The amazing receptionist was not only knowledgeable but confident Jaffee could help me. She is familiar with the complicated cases Hibner sends Jaffee and is getting records faxed over for me. Jaffee’s receptionist goes a step farther and makes a sweep thru his schedule and can get me in in this month. By the end of April, I should know if I will begin my interstim journey with Jaffee or make a move to visit one of the other potential surgeons for this procedure.

I’ll post more after my consult!

Xx

Lilly

Make me. Please?!

A couple nights ago, I had been crying for a couple hours. I was angry because it was bullshit and it made me mad that I just couldn’t stop crying. Here I am, a week later and I can’t stop crying. Again. The pattern is always the same. just varying times of the day.

Work is ridiculous… there are zero words to explain the stress level I endure daily. I’m cool with the job, love it actually. Hate the toxic leadership. I despise that I feel less able to do my job and be successful because of the toxic environment. I can’t find any happy balance at work.

I know my previous work experiences are clouding my judgement at the current work and it makes me sad. Driving to work requires anxiety pills and a rubber band on my wrist to stop the panic… it’s miserable because only half of that is even from this job. The rest of that is a stress that today is the day I’ll lose this job and my medical marijuana card can’t protect me. It didn’t the last time and it won’t again. Nothing can protect me from losing my job again for managing my pain, opiate free.

Update on physical and medical… I am at a good 2-3 pain level with rare spikes to a 7. I think I can live with this pain level for a while. Mentally, I can’t bear to schedule another Botox /bladder hydrodistension appointment. I just can’t do it. I am due soon and haven’t even scheduled yet. My soul is tired of being poked. I’m actually going to try and delay the injections until I can’t anymore. I just don’t want to do it again. It makes me nauseous and my body hurts at the thought of all that. Again. Another Epidural- this time, I hope it’s just one poke. More Anesthesia- wake up hours later. Can’t feel anything below my waist. Can’t walk. Another Catheter and peeing blood for hours or days. I just can’t stomach the thought. For now, the pain isn’t unbearable and I’m managing to keep it at a 5-6 or lower.

I feel like I’m a shell trying to put the pieces together to make a whole person again. But these pieces don’t look like they used to. They’re different- all different. The colors aren’t the same. The size or shape is nothing it should be. It’s all different. A kaleidoscope of oddities that make zero sense. Where once stood a smart, confident person is now a skeptical, anxious person. It’s hard to reconcile the differences. I know that person is gone and I’m okay with a lot of her dying but I am not okay feeling so unstable in the aftermath. I feel like it takes me twice as long to make a decision or to defend myself when I used to take care of the problem immediately. Maybe if I’d just had one thing go wrong and not all of them… maybe if I’d just lost my job and not my reputation, relationships and the thin grip on my health… maybe one but not all of them at the same time.

The anxiety I feel daily makes me want to shred my skin to release the pressure my whole body feels. Constant. It never ends. My body has turned on me and I can’t make it return to normal state. No matter what procedures or surgeries I endure or how much I try to feel okay, it’s never going to be okay. I’ll never not be sick.

I keep trying to reconcile in my head, how does one agree to live like this? And then do it with a happy heart? It would be awesome if someone could make it all be okay! Make me be okay! I’m in counseling and it’s hard to make myself continue to go. Not because I don’t like her or she’s doesn’t know what she’s talking about… but because She can’t make me okay. She can’t make me healthy. She can’t make the medical procedures stop. She can’t erase the past mistakes and trust I placed in the wrong hands. She can’t change the fact that I can’t live with out some sort of pain medication/pain relief options. She can’t make me okay.

I did make a follow up with Hibner for sometime end of June. That’s his first available appointment. I took that appointment. It was a weak effort, I know. I should call him and see if I can get a message to him and see about interstim and if he can even do them… but that requires a ready-‘ness’ on my part to go to Phoenix and ask for more time off work… and I don’t have it to give. So I’ll chill until the pain drives me back to see him.

Until then. I’ll keep trying to survive this mess. Lots to do today and no time to fix makeup… done with the cry pretty shit for the day. Anxiety pill in and off to work I go.

Anyone got any advise on how to accept this medical nightmare that is my life? Maybe a ‘make me’ wand?

Xx

LS

More weight loss. Post procedure update.

I am the lowest I’ve weighed in my adult life. Most people would be thrilled but I’ve mostly always been small. Size 2-4 when I got pregnant. After a crazy hard pregnancy, I gained weight and hovered/fluctuated around a size 8-10-12. I was happy with my curves and would have loved to be a good size 6 again. So, Being the smallest I’ve ever been means I weigh 100lbs. I just recently saw 110 but then got sick with some stomach thing and now I’m at 100lbs. I assure you the 110lbs now didn’t look like 110lbs looked 20 years ago.

I’m devastated. I look like a Skelton. Like a person who has suffered years of anorexia or bulimia. I am doing all I can to stop the losses but it just keeps rolling off. My daughter saw me get into the shower the other day and she gasped. I assured her it was okay but she had tears in her eyes.

I had to buy new bras today. I had been crying all damn morning about it. I just gave in and took a Xanax so I could finally get this done! Last time I was measured, they told me they don’t carry bras in my size if I go down again, chest size. So, that means I am smaller than a size 0 model. Where does one buy bras that small? It’s given me massive anxiety and I made a comment to a coworker that I’d needed to do this… she said stop complaining because she has to now buy clothes at Lane Bryant and I said, who cares! I’ll be buying clothes at Justice! We both teared up. Laughed and hugged.

~~~~~~~

Procedure update. I still feel good and that makes me feel a little like I’m crazy. It is absolutely astonishing to me the amount of pain my body can endure and my mind will dismiss as ‘not that bad’ when it is actually calm. And damn it. That’s makes me think I’m crazy! My saving grace today, the blog. I love this blog and how it’s reminding me that my brain can play all the tricks it wants, but when it’s written by me during horrible times, I have my own personal reminder of what it’s really like when it is bad.

The PGAD- a calm 0-2 most times and only flares to a max 5. That’s from a constant ten, pre procedure. For that, I’m always grateful.

Pelvic floor- still have Charlie horses rip through there and some days are bad but most are good!

SI joints- still dislocating but since I can pop them back into place, I refuse any additional treatment. Their idea of treatment seems like mid evil torture! Fusing both of the SI joints was recently recommended as a viable treatment.

I still need to call Hibner and get a follow up. And my next procedure scheduled. 😔 I now dread the complete exhaustion the anesthesia will cause. The pain of the epidural (I’m still trying to get my spine to stop hurting from the last procedure). I’ll see if I can stomach the thought of getting another procedure on the books for April/May.

Still searching Dr. Google for any auto immune clues.

I’m waiting and watching as another PGAD sufferer gets her interstim trial for the treatment of PGAD. I hope, pray and beg the powers that be for her treatment to be successful. ♥️ she deserves calm!

Xx

Lilly

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

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