The last two weeks of the blog have been kind of slow – I started a new full-time job, ugh, and I haven’t been feeling 100%. Yeah, I know my blog is about feeling crappy so that would be the perfect time to write, right? Sort of. If I were feeling up to it. I wrote some stellar posts in my head, no one got to hear them – they were Pulitzer Prize worthy! If it makes you feel any better, I’ve got some great stuff coming up next week with new installments of Human of the Week. For now, I thought we’d talk about something fabulous – ME! I’ve been writing about chronic illness and it just dawned on me that I have one! Yippee!
When I was 20, I was told I should have a complete hysterectomy. Back in those days – 10 years ago, *cough* – that was the way to do it. The old-fashioned way, if it ails you, cut it out. Boy, did it ail me. Each month for 2-3 days, I would be confined to my bed in terrible pain. No amount of ibuprofen, heating pads or naps would bring relief. For a long time, it was written off as cramps, or I was looking for attention, after all, it was just a period. Right.
It wasn’t until a cyst burst and I was rushed to the ER doubled over in pain, the first of many times, did anyone take me seriously. Each visit brought new pain, new laparoscopic surgeries and new lesions. After being cut open a few times, I was told to just get rid of it all. Unfortunately, I wasn’t quite ready to give in. I decided I wanted to see what happened. Some would say this was a bad decision, others would say I did what I could tolerate and was best for me.
Thus began many years of hormone therapies and surgeries to treat my endometriosis. For those of you who don’t know, endometriosis is not just a period. Endometrial tissue grows inside the uterus. If you’re special like me, it grows outside the uterus. It breaks down, gets thicker and bleeds during each cycle just like it should. The problem? It’s outside your uterus with no place to go. It can’t come out of your body like normal endometrial tissue. So it grows, it bleeds and it binds your organs together. Oh, and it can really hurt.
Like anything else, all women experience different degrees of the disease, lucky for me, I had an extreme case. I spent 15 years having lesions lasered off, suffering silently until I could bear it no more and taking all kinds of drugs. Danazol was the worst, the side effects are terrible and it’s no longer recommended much for endo patients because of advances with other drugs. After taking more than the recommended dosage for too long, I switched to a nasal spray, Nafarelin. While the side effects still stunk, they were easier to manage. Once I wore out my welcome with that drug company, it was on to monthly shots of Lupron which I could administer at home. Let the games begin! The needle was way to big for me to poke into my hip so I opted for bringing it to a nurse. I’m not as brave as I think!
Over the course of 15 years, I had 10 surgeries and spent 10 of those years on hormone suppressants trying to find a way to escape the pain. Why not get a hysterectomy at this point? Good question. Complicated answer. At one point the lesions were so bad they could barely separate my organs, let alone remove the uterus. Another time, the scarring was too extensive and they weren’t sure it could be safely removed. Then there was the time the insurance company said I wasn’t sick enough. Mix all that in with a very high tolerance for pain and you’ve got a convoluted situation.
THE EVIL UTERUS
At the age of 35, I found myself pregnant, something I was told would never happen. The pregnancy wasn’t easy, I vomited throughout – gaining only 12 pounds with an 8 pound baby – I had a constant pain in my stomach and a nagging feeling something was wrong. Despite multiple ultrasounds, I was told I was worrying too much and there was nothing wrong. Around my due date, I had a lot of problems, back and forth to the hospital for pain and not being dilated enough for them to keep me. It was a terrible ordeal.
The birth itself wasn’t so bad. I pushed for 7 hours, it didn’t hurt all that much thanks to an epidural. When I finally gave up around 7pm, they used forceps to deliver my son. Then all hell broke loose. Okay, maybe not. Just my uterus broke loose. The placenta didn’t detach from the uterus, so out it came. Technically, it’s called a uterine inversion. I’m not going into the details here because I will just start crying and it deserves a post of it’s own. Let’s just say it’s very rare and life-threatening.
Related to the endometriosis? No one can say for sure. Guess I was just lucky.
While hemorrhaging blood and being rushed to the OR, I begged the doctor not to put it back in. I remember waking, feeling the size of the bandages on my stomach and crying because I knew he hadn’t taken the uterus out. I was devastated. Little did I know how long that would last.
THE PHYSICAL AFTERMATH
Since my son was born 12 years ago, I’ve had 5 surgeries and slept with the phone next to my bed for fear of bleeding to death through my vagina. I was pregnant a second time but nearing the end of the 3rd month, I experienced a prolapse and was told they couldn’t ensure my health or the health of my baby. I was too scared of dying and didn’t continue the pregnancy. My condition was so rare there are no stats on second births, the first birth is so traumatizing, no one wants a second. While I was in the hospital, a team of doctors were brought in because “we haven’t had this condition here in 20 years, we’d like to use you as a case study.” Lucky me.
Two weeks ago I decided to head back to the doctor, I’d postponed it long enough. The pain was back, the rectocele is back and the cystocele is back. That means my bladder is collapsing and pushing out my vagina. My rectum is collapsing again and fighting with the rest of my pelvic floor to escape from my body. Going to the bathroom is a chore and a half. Getting through the day without pain is becoming a job in itself. Trying not to look up every doctor who has treated me and every insurance company that has denied my request for a hysterectomy in the last 12 years and scream at them is a test of my will power.
THE EMOTIONAL AFTERMATH
I am not looking forward to a new round of PT, embarassing, intrusive testing, surgery and battles with the insurance company. Frankly, I’m not sure I have it in me.
When I was on the exam table last week I sobbed, out of years of frustration, fear and pain. I flinched and nearly fell of the table every time the doctor touched me. They decided I may have PTSD from all of this. I suppose one can only take so much. Every visit brings fear of what they will find, will this be the abnormal pap smear? Will something else fall out? How much longer before the next wave of pain?
As a kid, I was taught that if you do something wrong, you get punished. To this day, I still wonder what I did and why I am being punished. Surely my body causing me so much pain is punishment for something. All the sins I have committed throughout my life seem to have manifested in my midsection and torture me at will. Silly way to think? Yes, but this isn’t a mental health post either so we’ll skip that for now.
As I begged the doctor to please help me this time, please don’t make me go through another surgery where I am cut from front to back, please don’t make me go through that again, please stop this from happening and, please ease my pain, I realized just how desperate chronic pain makes a person. I realized I am one of the people I’ve been blogging about and I’ve got an invisible disease.
As luck would have it, my new surgeon knew me. He was studying under my surgeon at Brigham and Women’s when I had surgery in 2005. He’s decided he’s the guy to cure me. I’ve come full circle. He’s agreed that unless they take everything out, they’ll never know if it will help. He’s going to bat for a woman who’s been in menopause since she was 40, has had her body cut into more times than she can count and who is just plain tired of the pain. One thing to be said for her, she’s never complained to anyone. She lives with it and deals with it. Most people don’t know she’s sick. She’s just another person going through her day suffering silently.
Before you joke about PMS, cramps and bleeding or you mock your girlfriend for complaining, needing a nap or a heating pad, remind yourself, it’s never just a period. Her body is changing every month, offer the women in your life a heating pad, an aspirin or a night off her feet. She may be too embarrassed to tell you how much she’s really suffering for fear she will be mocked. As always, don’t judge what you don’t understand and what you haven’t experienced.