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

NO.o.ooo….ooooooo! I’ll be in the corner, crying.

I’ve just had another Spontaneous orgasm. Right after telling Dr. D’Souza, pcp, That I’ve only had one, awake-spontaneous orgasm… I fucking have another one. Not 30 minutes later.

I leave this appointment,…[[[where we discuss my job, family and personal crisis levels… why I’ve lost more weight… this damn SI Joint injury, the next appointment with Hibner, the PGAD diagnosis…hard appointment but as always, Dr. D loves me and has believed me since day one. I walk out feeling like I’ll make it. ♥️*sigh*~ such a simple gift of understanding- Thank you, Dr. Netley D’Souza. You never left my side. ♥️]]]…and I’m in a hurry as I’m gonna meet my bff at court. She has to testify against her, soon-to-b-ex that assaulted her. I was in a hurry and didn’t want to miss court.

I get a last minute text that her court address is different. I parked close to the back of the new court house and plugged a ‘walk’ into google maps. Wrong idea. I got so turned around and then so upset because I didn’t want to miss court… I got lost and upset and frustrated and I was in a super fast hurry… walking fast… bam- another spontaneous orgasm.

Fuck me. I literally relaxed my body, stopped walking fast and just cried, huge-crocodile tears… walking slowly across downtown…. privately and silently riding out a painful and unwanted spontaneous orgasm.

Let’s just say, that SI joint injury was NO joke. I knew that it had set me back.

But…

WOW! Back to Unwanted spontaneous orgasms?

F.U.C.K~M.E!

I tried to call my love and cry to him but I can’t even say what happened out loud.

This is a hell on earth that I just can’t reconcile deserving in real time. I think I’m crying harder now than while it was happening.

One small bump causes massive ripples of pain.

So, I posted a couple days ago that the garage door handle smacked into my left SI joint. See red where I initially felt pain…. and the SI joint is in black.

I saw a starburst of pain. Literally. Pain. The pain that hits all the senses at once… it steals your breath, your vision & your attention span. That’s just the instant pain. After the initial starburst I was surprised I was still standing. Tears in my eyes I thought to myself- ok… maybe I’ll be okay. I went about my day and finished all I wanted to do.

Then, bed time. I lay down and the second I relax my body, the first (of a night full of) Charlie horse starts… ripping through my pelvic region it’s intense and frustrating. I was exhausted and ready for bed. I needed to sleep but was unable to ever rest. *sigh*

Here is the agonizing part of all this crap…Today, 3 days after knob vs SI joint… I’m bruised. Very tender and I’m having a hell of a time with random Charlie horses ripping through the pelvic floor. I don’t know if I chipped a bone or not and even if I did, it won’t matter as there isn’t anything to do about that. BUT- My pudendal neuralgia, PGAD and IC are all playing off the Charlie horses… the pain is ridiculous.

The constant reminder that my body is at war with itself gets overwhelming. It makes me sad. My heart hurts and I’m tired. I left a message for Dr. Hibner. I know the next Botox session isn’t until the first of the year, and there isn’t much he can do now. But maybe, just maybe… he has a suggestion.

Oh Crap! Duloxetine is Cymbalta

I wanna cry. I just realized that I was on Duloxetine for the last 5 years. That’s generic cymbalta! Damn it- when I stopped taking my Duloxetine (couldn’t afford the copay and couldn’t see it helping with my PFD and frozen pelvic floor… so, another drug I don’t need). Plus, the gastroparesis flares really follow stress and when I’m a flare, taking pills makes me sick. Gastroparesis is its own post so that comes later…

My pcp, Dr. D’Souza, gave Duloxetine to me for nerve pain. Our ‘generic’ classification of some of my symptoms, and need for pain relief as well as antidepressants, despite the fact that I didn’t have a firm diagnosis.

So, forward 5 years later, I decided to self wean off Duloxetine. It never dawned on me it was Cymbalta. Once my body cleared the drug, that’s when my PGAD symptoms flared big time! My first, long lasting spontaneous orgasm as an adult. 😔😢

*sigh* I just want to sob. It’s hard to not feel like the very arrogant medical community has not only failed me but they’ve set me up!

But, saying Dr. D set me up isn’t accurate. He’d never do that and to be honest, he is the one doctor that he believed me since day ONE! He didn’t set me up.

So… does that mean…

I failed myself….??………???

I realize that by not understanding my body and where the pain was coming from has truly created many incorrect treatments and dismissals by physicians. But on the other side of that statement is this one: the physicians never helped me understand it. They never said a word about Pelvic Floor Physical Therapy until 5 years ago and then, my therapist did NOT understand what I actually needed. I can provide example after example to prove how the medical community failed me and how I failed me.

This 30,000 ft overview makes me sick. I literally want to sob.

It’s time to come up with a list of things every endometriosis patient should be required to do! Here is my list…

IMMEDIATELY, at suspected endometriosis, patients should be referred to specialized classes across many disciplines within the medical community! Let’s build pain relief toolbox’s right away and let’s pack them first and foremost with the logistical parts of the body! I love the Orange is the New Black, 2 pee holes?! episode! LOL- it’s the perfect reason to explain why women need to be sent for PFPT! We must know, Is it the bladder or the pelvic floor? Tendons or ligament pain? Fascia Pain? Educate yourself in the body.

Of course, I’d be here for ever outlining what’s needed right away and as I continue to type, I realize so I’m going to give it an entire post, soon but I’d love to hear your thoughts on the subject. Drop me a comment or email@ oldgirlintheendogame.blog or via Facebook!

~~~

Anyways- be kind to yourself, be open to new treatments and learn all you can about how YOUR body works. Don’t be your own worst enemy and don’t let them dismiss you! Piece of cake, right!? *said NO #endowarrior ever! WTF… lol

Xx- HUGS!

Lilly Sue


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

My Endo Journey, Part 4, Dr. Hallum and Dr. Chin

So. I am about three months off Lupron. My body is not the same but I keep trucking on anyways. I attribute the lack of my body returning to ‘non-Lupron normal’ to just needing time.

All I knew for sure was that I was still in pain. And not only am I pissed off about it, I’m freaking out. How is it possible to hurt this freaking bad? Nothing interests me… the pain is becoming all consuming and I keep begging for a doctor to help me with pain relief. I continue to take my Motrin- 800 mg a time, plus 2000 mg of Tylenol… every 6 hours on high pain days… I continued to pop these pills like skittles! I dug myself in for the long haul because I had no idea what to do to get out of pain. All I knew is that I tried to bear the pain as long as possible and I kept the focus on pain free days. As long as I’m pain free more days a month then not, then I’ll keep popping NDAIDS & Tylenol and ignore the other bad days. After all, those days that aren’t full of pain just play tricks on my mind… They always make me feel like I am a big baby. Those pain days weren’t really that bad. I could always downplay the crap days once they were over- no matter how bad… The pain made my heart beat a million times a minute and my vision blurry, especially during my period when I passed huge blood clots. The pain would create tunnel vision and I wouldn’t always process things correctly. But-hey, I could always convince myself that the pain, it wasn’t THAT BAD.

Anyways- Lupron sucked! It didn’t work and I was scared. Scared I’d never be okay. I could not even have sex with my husband. It hurt. It always hurt and nothing made it okay. I tried and was successful at hiding most of the pain from my husband. Grin and bear it, premedicate with my ‘skittle concoction’ and get it over with as fast as possible! That was sex for me. I just hurt, my whole body hurt.

It was during this time that I began to get these horrible, recurring yeast infections were also caused me massive pain! Pain in the whole clitoris area… I saw my OBGYN and was told it was definitely yeast, and given steroid yeast creams, diflucan and OTC treatments. The yeast literally removed vaginal skin… the clotoris was engorged and completely raw and bleeding.

Back to the drawing board- I eventually dig up the endometriosis specialists name I came across earlier when I had to find another doctor for Lupron and started digging up my medical records so I could get an appointment on the books with Dr. Hallum.

By the time I got to see Hallum, he was one busy doctor! I ended up getting in with him during a crazy transition of patients after the sudden death of another very talented surgeon in Tucson, Dr. Childress. I remember Dr. Hallum juggling both his own practice and the patients abandoned by the death of Childress. I waited 4 hours in the lobby to see Hallum the first visit. He was confident he could help me! He recommended another surgery. This time I’m told I’ll have a Procedure to cut the nerves in the central pelvic region and it will stop sending the pain signals, but only the pain signals that make me hurt. The pleasure receptors would be left alone as they’re different.

**One of the most amazing things to come of my time with Dr. Hallum is that he helped explain to my husband how painful this disease is for me. It’s one thing to say I hurt but I didn’t understand how to explain it. One thing I want to make sure ALL women with endometriosis read, understand and share… Dr. Hallum told my husband that as a man, it’s impossible for them understand so he always puts it like this- ‘Imagine, you’re hot and ready to go. BUT, every time you thrust, I’m standing behind you and I’m smacking you in the balls with a huge wooden paddle- as hard as I can!’ Granted, my husband was never one to dismiss my pain, EVER! But to have a doctor, a male doctor, acknowledge how very painful endo was… wow, what a gift! Dr. Hallum gave me to gift of belief. He believed me and could help me express what was really happening.

Back to the recommended procedure. There are two types of procedures like this… the LUNA and PSN. They are similar in that they cut nerves in the pelvic region. But each cuts in different places and burning vs removing all together. Here are more in-depth details on The difference between the PSN and LUNA. But, in my readers digest explanation, the nerves are cut in different places. The Luna has less success rates and has not been recommended lately or done much anymore. The PSN is still being done however and my story almost 20 years ago lead me to Dr. Hallum and a Pre-sacral Neurectomy.

Procedure day. I’m ready. Let’s go! Anesthesia goes off with out a hitch. Yeah- me! My PSN was uneventful. Hallum took my appendix while he was in there, citing it looked odd, did a PSN, cleaned the endo out again and off to recovery I go. I wake up fine but man, I’m sore as hell. I felt like I’d been hit by a bus. I was supposed to stay the night in the hospital but they sent me home as soon as I peed! It was a quick in and out for me but I bet my husband felt like it was a lifetime… I was home and on the road to recovery, again.

With this PSN, I was supposed to never feel the endo and adeno pain of the uterine diseases. I could potentially never feel labor or have labor pains since I’d had the PSN. But. At that time, every doctor was confident I’d likely never get pregnant anyways. I just wanted relief! Solid pain relief.

After this surgery, I was finally scared I’d never get pregnant. Because pregnancy was something the medical community told me I’d run out of time and not be able to conceive on my own. Once Hallum saw the inside, he estimated I had between three and five years to get pregnant on my own or I’d likely never naturally conceive.

So, what’s the point… did it work!? I feel my experience with the PSN wasn’t helpful in many ways. Looking back, I would have benefited so greatly from pelvic floor physical therapy that I’d likely not needed everything that was done but knowing where I was at that time, I’d say it was not an effective treatment option for me because it only treated the uterus pain/disease. What about the bladder pain? Intestinal pain? Colon pain? Pelvic floor dysfunction pain? Endometriosis is a whole body response/disease and I believe the PSN would have worked better is all my issues were strictly related to the Uterus, but it isn’t all uterine alone. I have so many diseases going on in the pelvic cavity that it’s hard to distinguish one from the other.

Fast forward, what did this procedure mean for me today- it’s now well over 15 something years- can I say the PSN was a helpful and effective treatment? No. I can’t. Doctors are telling women today that their PGAD can be cured with a PSN- I doubt that, unless the pain from PGAD is related to the uterus it likely won’t help. PSN has a place in the pelvic surgeries category for Endo and Andeno treatments but it is only effective for uterine diseases. Knowing what I know now, I’d never have allowed the first cut. I’d stick to homeopathic options and pelvic floor physical therapy. But these weren’t options 20 years ago…

BUT today, they are options. Not only does it they exist, it’s amazingly effective. If you’re considering surgery, please exhaust pelvic floor physical therapy before any surgeries. Regardless of what they promise you! And if you don’t like the first therapist, find another one.

Hugs!

Xx

Lilly Sue

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

🌻🎗

50/50: should I stay or should I go?

It’s been a shit week. For real. I was under an extreme amount of stress at work that started Monday and did not let up until I hung up with my boss as I pulled into my driveway tonight (Friday). Easing up doesn’t mean it’s gone though…

why does this matter?

Well, I’ll tell you.

It’s literally gonna take me a month to recover from this one week! This is when it pisses me off and I despise being so sick. I hate that my mental state plays such a huge role in how my body physically feels. But my body physically feeling this way causes my mental state be horrible. It feels like I am on a fucked up kaleidoscope of pain and confusion, this merry go round of a cycle that can start either way.

Think about that.

I’m talking about a cycle that can go one way or another. And either way, the resulting flares suck. That means, if I allow too much self doubt, hate and anger in, I’ll all of the sudden be drowning in a massive pelvic pain flare or a gastroparesis flare. BUT if I am not careful, my kaleidoscope of pain can switch direction and turn causing the pain to be the reason my mental status is jacked.

Being sick, really sick, means my life must be scheduled. All of it. It means that I must take care of my mental health just as much as I care for my physical health. It means that each day I also have to evaluate if one pain is contributing to the other- mental state messed up today? Is that the reason for MY extreme pain? Can I lower the mental anxiety? If Yes, it typically lowers the pain. This also works in the reverse. 😦

Hopefully that explains why my shitty week at work and my mental status all played a part in my shitty week for pain and my original question all week… Should I stay or should I go? I’m still 50/50. But man, if ever there was a time to show me that mental anguish controls pain, this was it.

Be kind. Be gentle. Take Care. Allow Rest. Ask for Help. Offer love. Show Strength. Calm your soul.

My family let me fall into bed every night at 630… I passed out and just slept, woke up, took meds and got high again and then, back to bed until the alarm at 445. More importantly, I let me fall into bed every night at 630.

So, I’ll say it again… Be kind to yourself. Be gentle with yourself. Take Care of yourself. Allow yourself Rest. Ask for and accept Help. Offer yourself love. Show yourself Strength. Calm your own soul.

Xx

Lilly Sue


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

Day 11, post procedure and PGAD Update.

Yesterday, I felt okay, calmer with the pgad symptoms in the morning but bad bladder/urethra spasms that woke me up out of a dead sleep and caused me to fidget! I despise fidgeting and now I can’t stop. I am starting to possibly decipher what is actually spasming. If you’d asked me this morning I’d have told you I was just fine… but tonight, not so much. Damn it… it just feels like the part between the bladder and the clit is screaming and pissed off, rocked by painful irritation.

I’m new to the PGAD online community and the true diagnosis but after a couple weeks of being in the groups, I believe I’ve discovered that I have already built an extensive pain management toolbox for PGAD, I just didn’t have a competent physicians to help me get the true diagnosis.

I have cried each day, not only for myself but for each of the amazing women I’ve met! I’ve seen women in panic mode, freaking out because they’re having a constant and scary sudden onset of PGAD. I’ve spoken to another #pgadbadass who is in England! ♥️ I’ve seen people comment about killing themselves if this doesn’t stop, embarrassing conversations that end horribly with family, begging for help stopping the pain, hopelessness, complete fear it’ll only get worse. Pain, fear and anger are dangerous combinations but add hopelessness and that’s a serious recipe for suicide.

Today, finally, I know why I am still alive. The depression and anxiety I’ve suffered this last year have changed who I am at my core. I’ve begged and bartered with God to just take me. Living this life, with this pain had made it impossible to find the will to live. Now I know, I am still alive so I can help others.

So far, since starting my blog, I have been invited to speak at a conference in 2019- details to come later, if it works out for me to speak. I’ve been asked to help moderate an existing Facebook group for PGAD- what an honor!!! I have spoken to women via PM, text, and phone! My blog is reaching about thirty new visitors a day, across ten countries! I had a spotlight with a fellow blogger and endo warrior, Ashley. And the most movement has been this last three weeks! ♥️

While still recognizing that this sucks ass, I am here to say, I do believe- PGAD can (and does) get better! The people out there, like me, are more than willing to open their pain management tool boxes and compare notes.