Always listen to your Gut.
I was a newlywed. We’d only been married for 9 months when I suddenly had excruciating pain during sex. I still remember that pain. He entered me and the only reason I didn’t SCREAM in pain was because we were living with his parents and I was used to keeping quiet during sex. Instead, I gave a quick yelp and burst into tears. I scared the crap outta my poor husband.
I made an “emergency app” with my GYN
My GYN ran a battery of tests that came up negative, so he did a laparoscopy just a few weeks after it started. What he found was Pelvic Congestion Syndrome, aka Varicose veins on my uterus. I didn’t know that was even possible!!! I was told by him, and via my googling, that it had been considered a symptom of Endo until just a few years prior and that it was now considered to be its own separate condition. So my GYN had me start skipping the placebo week of my birth control pills.
About 2 months into this, nothing had gotten better. The vicodin he RXed me wasn’t much help. I went to see him almost in tears, so he admitted me into the hospital for a few days and ran a battery of tests, including ones not related to GYN stuff, like a colonoscopy. If nothing else, my pain was better controlled w/ the stronger IV pain meds, but we got no answers.
A series of very unfortunate events
The day or day after I was discharged, my husband lost his job and our health insurance went with it. I had lost my job right before the wedding, and hadn’t gotten another before I had my first symptom and started getting sick. We paid outta pocket for my birth control pills, for the pain pills that I was RXed sparingly, and for the GYN appts that I made sparingly. I lost my psych doc and anxiety/depression meds b/c they were SO EXPENSIVE! I lost my nexium for my GERD and IBS. It was a very rough time for us. We couldn’t move out of his parents house, and we couldn’t have sex due to my pain. I couldn’t even “help him out” sexually bc arousing my husband would arouse me, and just getting aroused caused me pain at this point.
About 8-9 months after my 1st symptom, my GYN decides to try Depot Lupron. Birth control wasn’t working, and the makers of Lupron had a thing where I could get it free since I didn’t have insurance yet. My husband had a new job but was still considered a temp, not a hired employee yet. I was willing to try ANYTHING and I trust my GYN, so I went on Lupron for 6 months, which included all 3 summer months! I had every single menopause symptom, a hot attic bedroom, and a terrible AC unit. And then I’d remember that I’d eventually have to go through menopause AGAIN, but for real next time! That’s also a running joke for me, that I have to experience menopause twice, lol, and that I went through it before my mom, lol.
I regret the Lupron
I advise my Endo Sisters against it. It didn’t help my symptoms and I had menopause symptoms on top of it all. And I wasn’t even DXed with Endo yet. I think Lupron is toxic and may have caused me other issues later on, but I don’t have proof except for my gut feeling and some stuff I’ve read online. But I do NOT blame my GYN for trying it b/c he was trying to help me. I trust him more than any other doctor I’ve ever had. He’s still my doctor to this day. And he never stopped fighting for me, to get answers, to get me what I needed, and to get me feeling better.
I tried having sex again after the Lupron but it still hurt so bad that we couldn’t get past insertion. But it hurt in a different way. It had caused Vaginal Atrophy, and I had to start a gel or cream med inserted via applicator to add hormones back into the tissue in there. Couldn’t have sex even after this med b/c I just hurt too much in general.
Around the end of my last Lupron injection, 14 months after my 1st symptom, I had insurance again and my GYN did another laparoscopy. This time he found Endometriosis, which is what he suspected all along but didn’t get surgical confirmation the 1st time. So now I’m DXed w Endo AND Pelvic Congestion Syndrome. Unfortunately for me, the treatments for Endo and Pelvic Congestion Syndrome are the same, or at least they were back then. I had more answers but they weren’t anymore helpful to me.
Doc changes me from birth control pills to the Depot Privera injection, hoping it’d make a difference in my body.
And a few months before my 2nd laparoscopy, aka the moment I got insurance again, he’d sent me to a Pain Management Clinic since those appointments are outrageously expensive without insurance!!! I couldn’t afford it otherwise. It was a godsend.
My pain had been so terrible!
I had pain with everything! Too much physical movement. EATING HURT ME!!! At this point I’d dropped down to ONLY 90 POUNDS!!! I’m 5’2 and was 120-130lbs at the start of all this craziness. Eating just a microwave cup of soup would have me in bed, knees up and breathing like I was giving birth, for HOURS! That’s why I ended up being put on the FENTANYL patch within months of starting with the Pain doctor. My PCP almost admitted me to the hospital for my being horribly underweight, without my ever trying to lose weight. My husband and I were forced into celibacy…
Somewhere during all of this, I made an appt to see an Endo/ pelvic specialist at another hospital. Had my records sent over to him, with the info from my surgery where I was diagnosed with Endo. This HORRIBLE man had the NERVE to tell me, “You don’t have Endometriosis. You just need to do pelvic floor exercises.” Even after I pointed out that I’d been diagnosed during surgery where my GYN SAW ENDO, he still had the audacity to say that I DON’T have it. So much for seeing an Endo specialist! Anyways…
It was really bad, and I wasn’t getting any better after 6 months on the birth control shot. This is about 1.5yrs in. I was only 25yrs old and begging for a hysterectomy but I was at G0, aka I had no children. I knew a hysterectomy wasn’t a cure, but I was at my wit’s end here. I asked my GYN for an MRI to look for some other condition where a hysterectomy was the ONLY treatment. My GYN understood and ordered the test but did the entire abdomen, not just my lady bits.
MRI said lady bits were fine, but I had inflammation in my intestines. So I was scheduled for a colonoscopy. I had quite a few of these, along w endoscopes, before. I knew what the PREP was for it, cleaning out my innards with that Jug of Evilness.
The first scope
Over a week before my scope, I was having trouble keeping food down, thought it was a mild stomach flu. I asked the GI doctor doing the scope, and he agreed to let me move it up since there wouldn’t be much in me for the PREP to clear out. I had trouble keeping the PREP down, but I drank it all and go for my scope.
GI knocks me out, and then wakes me up a few minutes later. Said he couldn’t do the scope b/c I was impacted. Said to fix it, come back, and he’d try again on Monday; this was on Friday. This GI was a jerk. Didn’t really explain what an impaction is nor how to fix it. But my mom and I googled it and tried our best to fix it. All the while I still have trouble keeping food and liquids down, my pain levels are increasing and now include my back. I couldn’t lie down nor lean back or lean on my side. I’m barely sleeping.
But, on Sunday, I do the liquid diet, then start drinking the PREP once again. I would take a sip of liquid, and then vomit like I’d taken gulps. And it was funny colors. I messaged my cousin who was almost finished with nursing school. She said I was vomiting my own bile, and to get ready b/c she was coming to take me to the Emergency Room RIGHT NOW!!!
So, it’s February. I’m down to 90lbs…
I’m wearing thick flannel/fleece PJs, a thick flannel robe, and a full length wool coat, and I’m still shivering even when indoors. The triage nurse CAN’T FIND MY PULSE NOR BLOOD PRESSURE!!! I tried to joke by asking if that meant I was now undead aka a zombie, but the nurse didn’t laugh. I was given TONS of IV fluids bags on full tilt b/c I was insanely dehydrated, hence the no pulse/BP thing. A few scans were done, even though my ER Doctor treats me like I’m just pill seeking, despite already being on the Fentanyl patch plus vicodin for break through pain RXed by my Pain Doctor!
That is, until the ER doc gets my scan results back and he immediately apologizes and says, “I don’t know how you’re not crying and screaming in pain, despite your Fentanyl patch.” And then he himself gave me IV Dilaudid, which is stronger than my patch and the only thing they can do with the patch, and he admitted me to the hospital.
I had a fecal impaction so bad that I almost died, my doctors said. Which means that Idiot of a GI, who told me to come back Monday to try the scope again, ALMOST KILLED ME! I would’ve sued if I wasn’t so busy being sick.
Until that wknd, I had no clue that I could be so full of sh*t that I almost died. Ok, so that’s my bad joke about impactions. That whole week leading up to it was one of the worst, most painful in my entire life.
And guess what- it wasn’t from my Endo! Early on, they did GI scopes and found nothing. So we’d spent the better part of 2 years trying to treat my Pelvic Congestion Syndrome and Endo with 1 med after another. I’d even been doing acupuncture for a few months prior to my impaction w/ a doctor who knew Endo and was certified in acupuncture. I’d been celibate this whole time b/c I feared the pain.
My deadly impaction was caused by CROHN’S DISEASE!!! We’d stopped looking and had only focused on my Endo. Crohn’s has many symptoms in common with Endo. That would be why the Endo meds and treatments didn’t seem to be helping me. And my Crohn’s was so bad that, even though I needed surgery, I had to be medicated with steroids and Chemo for over a year first. My Crohn’s also tried to kill me at least 2-3 more times before my 1st surgery.
My end points here are:
Trust yourself and have a doctor that will work with you and listen to you and fight for you. If your doc doesn’t do these things, change doctors. And keep changing doctors until you find one that does. Mine listened to my suggestions, and that’s how I got my FULL DIAGNOSIS of everything that is wrong with me.
Don’t ever stop fighting for yourself, your quality of life, and Your Life.
And ALWAYS listen to your Gut. LoL
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