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.
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