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

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

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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! β™₯️ 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! β™₯️

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.

I can’t go back now.

I woke up exhausted. Literally. I worked 15 hours yesterday. I didn’t feel well and the increase in symptoms for PGAD has been very deflating. I decided it was time to really start looking into what new tools will be needed to combat these painful flares.

So back to today, I just couldn’t wake up, didn’t rest well and the PGAD flare left me grouchy. I tried to get dressed and was almost finished when I realized I couldn’t work all fucking day with this constant BUZZ! I almost melted down – Normal women don’t have to find underwear that won’t irritate their clit and cause a spontaneous orgasm! I couldn’t get undressed fast enough and UGH! Who has time for this???? But, I managed to just find the most comfortable undies and I then used a very thin layer of my non-soap cleaner for a moisturizer… it’s an emollient/moisturizer cream. It’s the only thing I’ve found that works to clean and moisturize and has no scents… I quickly get re-dressed, ready for work and out the door on time.

The day moves on, mild symptoms that are easily ignored. I did take a pyridium today because I need to know if it is urethra spasms and that’s why it feels deeper than just superficial a clitoral pain. I even remembered to call Hibner. I wanted to let him know the block only lasted a couple days, saying 5 is generous! I left a message for the triage nurse to document my increase in symptoms and see where we go from there.

Hibner’s triage nurse calls me right back and informs me they won’t officially record my symptoms and the block as failed until Two weeks post block. Hibner wanted to remind me that it could take 2 weeks to know if the shot will have any effect. I informed the RN to let Hibner know, I would call him in one week and he’d better be prepared to have the next step available for me immediately. I’m not waiting another week longer to get more movement…

I went on to further explain, now that I know PGAD isn’t normal and this isn’t a yeast infection and I’ve had a snippet of what a blocked and calm nerve feels like, I can’t go back! I won’t go back! Fuck- I don’t have to go back! They can’t and won’t dismiss me past another week. I’ll calmly wait until all clinical indicators agree the block was failed. Then we can prove to United Healthcare the block was unsuccessful, therefore, they’ll need to cover additional costly procedures/tests/surgeries.

I ended up sobbing, I had to pull over to finish my conversation. I tried desperately to explain — now that I KNOW this can actually be calmed, I will not accept dismissal. I know my body and I know that block didn’t work. I have felt nothing for 5 days- five glorious buzz free days and then a switch was flipped and now I have a buzz again that makes every urination painful, not to mention everything else in life! 5 days post procedure and I’m in a full PGAD flare again. No. Unacceptable. Now that I KNOW, I won’t go backwards!

I can’t and won’t accept a dismissal at this stage. I need help, I can’t live like this.

The RN stopped and apologized for seeming to dismiss me. She gave me her sympathy and kindness. She acknowledged that Hibner patients (any of their patients, really) end up with him after years of botched procedures and mis-diagnoses. She said we women warriors, us pelvic pain patients have taught her so much and while she’s never been a pain patient herself, she does want me to know they’re on my side. She will make sure Hibner knows what I need. She literally said- I hear you. I understand. I will ensure Hibner understands too.

I’m going to work with my Amazing #TeamDSouza PCP for an MRI. I’ll try to get it scheduled by Friday. I will have him order MicroGENdx test for my bladder. Time to find out what irritants are in my bladder. I want to be tested for Lyme disease- I’m curious to know if I was exposed as a little.

I’ll post an updated game plan on the next steps to attack the PGAD. I refuse to go backwards!

Xx –


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

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What’s that humm…mmmm…

Damn it. The hum of the PGAD is back. Granted, it’s not the roar it was before the blocks but I’m not even a week post procedure.

**SIGH**

I want to cry. Showering hurts, water hurts… my non-soap cleaners haven’t eased it either. I think it’s time to review a couple other potential contributing factors.

  1. I WILL be scheduling an MRI. While Dr. Hibner believes any cysts found aren’t going to change my treatment options, we didn’t have a solid discussion on my early childhood trauma and or the massive tailbone injury I sustained in the 6th grade.
  2. While the MRI may be useful, I personally don’t believe an MRI will show if it is endometriosis or scar tissue thats invading the nerves and or compressing it. I saw this because my previous experience with MRI’s never showed the intestines were strangled and Mayo mis-diagnosed me.
  3. I believe the pgad symptoms are actually much worse in/on the right side of the clitoral area. Odd… why?
  4. I need to understand what, if any, role the Interstitial Cystitis plays.
  5. Urination causes symptoms to worsen- WHY! That makes me not want to drink anything and that can’t happen.
  6. Are urethra spasms a thing?? This PGAD feels higher up than just the surface… why?
  7. I need estrogen/progesterone therapy- I need to understand how I can have these hormones in my body and not FEED endo—???
  8. The fact that I’m in surgical menopause and have been HRT free for the last 3 years, does that contribute to an increase in PGAD symptoms? Vaginal dryness is only getting worse, not better!
  9. Can someone please tell me what underwear to buy!!!!!! Geeze man! N.O.T.H.I.N.G feels okay, much less good!
  • So many things to research and review. I promise to keep all the details coming, as I discover the next steps… what helps and doesn’t help.
  • If you’re a fellow PGAD badass, please help answer my crazy questions above, if able. Contact me via Facebook OR email me at oldgirlintheendogame@gmail.com

  • πŸ’› #OldGirlintheEndoGame #suckitendo #endendo #endostrong #PGAD #PGADbadass #pudendalnervepain #endometriosis #pelvicfloordysfunction #interstitialcystitis #MMJpioneer #almostopiatefree #marijuanapatient #TeamHibner #TeamDsouza #refuseLupron #PGADisreal #anxietyanddepressionhurt

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    Procedure day and PGAD discussions.

    Well, I survived my procedure today. I received a pudendal nerve block, cystoscope, bladder hydrodistension and 200 units of pelvic floor Botox. But that’s not the best news…

    I got to corner Dr. Hibner today. He has new fellows and new med students. I told him we need to discuss PGAD. He immediately stopped and just listened! Luckily we’ve already discussed the ‘buzz’ I feel but now that I’ve had a spontaneous orgasms, I know what the buzz is. I explained getting in the truck and BAMB- orgasm. Wetting the bed due to spasms… he quickly added the ultrasound guided bilateral clitoral nerve blocks.

    The amazing thing from the day- not one medical student or fellow in the room knew what PGAD is! I got to educate the next generation of physicians. β™₯️

    Here is what I said… (i hope my pgad warriors can confirm if I’m right) the thin line between pleasure and pain is very real and when your shopping in public & you move wrong and orgasm. Not only is it scary, painful and extremely embarrassing but it is absolutely confusing!! I cried, it hurt so bad. Then I was left with a shit ton of spasms that felt like hot pokers jabbing in my clitoral area. Like the orgasm just kept going and going… it took a couple hours to calm down. That was my first and only spontaneous orgasm while I was awake. I can now understand I’ve had them asleep too. I’ve wet the bed because of these spasms.

    Here is what Hibner added: don’t bother with an MRI, latest research shows tovlov cysts do not cause the disease. He also explained to his entourage that it used to be called – persistent sexual arousal disorder, but that implies people like or want this disease. It was subsequently renamed Persistent genital arousal disorder to remove the stigma surrounding sex, pleasure. He explained patients often don’t know what it is but the pain is horrible.

    The new providers and students were in awe! They had questions and wrote the name of the disease down. They want to help raise awareness too and also ensure they’re education includes this treatment.

    I’ll make my follow up after I see how this nerve block works. Time to address an issue I’ve had for over 20 years but knew absolutely nothing about.

    For now, keep fighting fellow warriors. β™₯️

    Ps- I hope my ‘#TeamHibner’ hashtag made it back to Dr. Hibner. #TeamHibnerGirl right here baby!!


    πŸ’› #OldGirlintheEndoGame #suckitendo #endendo #endostrong #pudendalnervepain #endometriosis #pelvicfloordysfunction #interstitialcystitis #MMJpioneer #almostopiatefree #marijuanapatient #TeamHibner #TeamDsouza #refuseLupron #PGADisreal #anxietyanddepressionhurt

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    Procedure #150,004,987

    Just kidding. Sorta. Kind….a. Not really.

    Haha! I have ZERO clue what procedure number this really is but who freaking cares. It’s yet one more procedure for pelvic pain. *Sigh*

    Please don’t misunderstand my *sigh* for anything other than sheer exhaustion from another round of treatment that only lasts three months… I am however, eternally grateful that I do have a viable option for pain relief for the next three months!

    …Actually- here is why I am sighing…

    This procedure is making me nervous. More nervous than any other procedure like this that I’ve had, including the first one! I am still a little bit off on the bladder from the last procedure. So, will another hydro make it super flare again? Then, the 400 units of Botox kicked my ass, for real! It even changed the shape of my back/hips!!! I no longer have a sway back. It’s the craziest thing ever and something that no one told me would happen- i actually believe no one knew it would do that. Imagine just how tight my pelvic floor must of been to pull my hips that way! Next, clitoral /pudendal nerve blocks… those are always fun and leave me bruised in a way that would appear I survived a serious and violent incident. But, I go. Every three months. For pain relief. It’s one of the ways I’ve managed to remove so many opiates from my pain management tool box.

    Anyways, tomorrow is another procedure. I plan on cornering Hibner on the Dr. Lee, interventional radiology- cryo guy & the suspected PGAD diagnosis. Maybe, just maybe, he’ll be able to hook me up tomorrow with a block I haven’t ever heard of…???

    Anyways… love and hugs, fellow warriors. Xx 😘

    πŸ’› #OldGirlintheEndoGame

    #suckitendo #endendo #endostrong #pudendalnervepain #endometriosis #pelvicfloordysfunction #interstitialcystitis #MMJpioneer #almostopiatefree #marijuanapatient #marijuanaismedicine #TeamHibner #TeamDsouza #refuseLupron #PGADisreal #anxietyanddepressionhurt

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