So, very recently I finally found a doctor to perform a surgery that I have been waiting around 8 years for. Before we get into the whole complicated story, you should know exactly what I'm talking about.
Endometriosis is essentially the menstrual cycle growing upwards, starting on the upper part of the uterus, and constantly bleeding. It generally grows up and attaches, and begins growing on the bladder, colon, pretty much anything it can touch. It is CONSTANTLY bleeding. Hurts 24 hours a day, 7 days a week. There's no such a thing as a break from it. It feels like a combination of menstrual cramps, someone stabbing you in the uterus, and extremely hard pressure. Some medicines help to dull it, but it, but it ALWAYS hurts.
Backing up-- 8 years ago I was officially diagnosed with Endometriosis. I'd been symptomatic for a couple years prior to that, but a friend noticed I had pain when I did certain things, and said "hey, that's not normal, you should see a doctor".
The initial appointment was just the beginning of a very long list of appointments. Referral after referral, a list long enough to wallpaper a small room. First we did blood work, then ultrasounds. Little known fact, ultrasounds can be performed internally, and at least in my case, they DON'T warn you it will be. It leaves a burning sensation when you pee, for days afterwards. Another little known fact, again, in my opinion, ultrasounds are mostly a waste of time, except for pregnancy and gall bladders.
Then we did the scan I call the donut scan. Because I've had so many tests run that sometimes I have to label them in my head by what they look like. Worth mentioning is that far more people than I'm comfortable with have seen my private areas, because nothing is off limits. So, they make you strip down to one of those very fashionable gowns that cover next to nothing, then they injected me with a dye solution, which made me feel very weird. Again, this test showed nothing.
On to the bladder test. They make you pee until you've gotten your bladder as empty as you possibly can, which is not completely empty, because the human bladder is never totally empty. Next, they use an apparatus that looks like a very small shower head, with a camera on the end, and shove it way up into your bladder. That HURTS. Which comes with the warning, "this may be a bit uncomfortable". A bit uncomfortable, huh? Yeah right. It hurt to pee for DAYS after that one. The internal ultrasound hurt less.
There were 4 or 5 other tests, but in my head they all sort of swim together after so many years.
Next was the laporoscopy. I may have spelled that wrong. I'm never quite sure on that one. At least I got to sleep through that one. Then they FINALLY found the Endometriosis, at which point they burned off the diseased tissue, which the doctor said had been building for years. I even got printed photos of my ovaries, and the actual diseased tissue, which I still have somewhere.
My ob/gyn doctor recommended hormone therapy to try to manage it. So, we started a years' worth of various birth control options. At one point they put me on a combination of medicines that mimicked menopause. That was AWFUL. Not a single one of those options worked. Pain meds remained a constant necessity.
I spent that year bracing myself for the inevitable conclusion, that I was going to need a hysterectomy. I'd read everything I could find on the subject, and I knew that was the last resort. At this point I had still been hoping for the chance to have one more baby, so knowing that the decision to try for that was being made for me, was very painful. I knew I wasn't ready then, so it just wasn't going to happen. So I let that dream go.
After the year of Hormone Therapy Hell, I went in for the appointment that I assumed to be the one to set up the hysterectomy details. My doctor sits me down, and informs me that she's not comfortable doing the surgery. She's not convinced that the disease living and thriving on my uterus and ovaries and causing my pain, will be eradicated by removing all of those organs. She then tells me that some people just have to accept that they will have chronic pain for life, and referred me back to my primary doctor for pain medicine.
My doctor (whom has since retired, he was AMAZING), wrote the prescriptions for pain medicines. We tried everything. Percocet, Vicodin, OxyContin, Tramadol. I found that it was impossible to go to work and function on anything but Tramadol. Also, worthy of note- narcotics do not in any way make the pain "go away". They dull it some, but mostly you just don't care quite so much that it hurts, for 4-6 hours. Then it builds right back up again.
Tramadol ultimately left me fatigued at the end of the day, but it was the most successful at pain management. a couple years later my doctor retired, and I had to pick a new one. He said he would keep writing the prescriptions, but he'd like me to get a second opinion on the surgery. So, I go to see a new ob/gyn. This doctor sent me for another test. I honestly cannot remember what test it even was. But they then found Adenomyosis. It's the same disease, it just grows inside instead of out. This doctor recommended a hysterectomy, but he was not a surgeon, and sent me back to the same doctor that had refused surgery in the first place. She again, flat out refused the surgery. She offered another years' worth of hormone therapy. Why the hell would I agree to that?!
So, my doctor sent me to a chronic pain management specialist. We kept me on the Tramadol, for about a year, I think, give or take. But, I am on mental health medicines, and we decided to switch to Gabapentin. I have now been on that for about 2 and a half years or so.
About 2 months ago I moved north of the cities, and finally have access to doctors that actually listen when you talk. About 2 weeks after I got here my fiancée's mother insisted one day that it was time to go to the emergency room, because I was in so much pain that I had given in and just burst into tears. She brought me in, and they did an internal ultrasound to rule out the really scary stuff. Although, looking back on it, had they found something, I may not have a uterus or ovaries right now. They gave me a referral to the best ob/gyn doctor I have ever seen. She's kind, efficient, and above all, ready, willing, and able to do my surgery. I have one scheduled for October 12th, which we've decided to keep scheduled until the last possible minute.
I'm working with the hospital referral specialist to get them the massive stack of papers that is my medical records, which my ob doctor will be taking back to the medical company to plead my case one more time with, but she warned me not to expect much. I'm calling the hospital to ask how much money they require as a down payment, in order to do the surgery, and to also ask about a grant we heard about. Also, as a last grasp at hope, my fiancée has set up a Gofundme account.
Thank you, for taking the time to read my story. I know it was long, but 8 years' worth of history can't be summed up much shorter. I hope you'll take the time to share it. Not just because I need the help, but because I am one of so many countless girls suffering a disease, that far too few people know anything about.
I'm going back behind My Side of the Looking Glass now. Right now it's the best place for me.
Until next time-
Chandra
