I Will Not Suffer In Silence

6:44am – Woke up for work.

7:10am – “I have a bad feeling” – yet I am getting ready for work because there is no pain, no bleeding since yesterday evening.

7:24am – The “I have a bad feeling” is getting worse, took Chinese herbal meds.

7:28am – Went to the bathroom and as I was urinating, the pain and bleeding began.

7:30am – Pacing house, trying to decipher if pain will ramp up or stay steady. If it stays steady, I can manage it with ibuprofen.

7:34am – Calling in sick as pain ramping up too fast to manage with only ibuprofen, bleeding heavy.

7:40am – The pain is an 8 on the pain scale. Doing breathing exercises, took Tylenol 3 – had to run to toilet – had diarrhea (this never happens during menses), lots of bleeding and clots. The pain is mostly in the back of the uterus this time, and it’s affecting the bowels and rectum. The pain is horrifying.

7:47am – Still on the toilet, still massive cramps, bleeding, still having diarrhea. Shaking. Lower back killing.

7:52am – Left the toilet and went back to bed.

7:56am – Began sobbing from the pain, can’t get comfortable in any position. Pain is definitely a 9 on the pain scale. My husband heated two pads for me; a corn pad and a rice pad.

8:13am – Heaving/hyperventilating, but sobs are calming down, trying to get back to breathing exercises.

8:30am – Tylenol 3 kicks in while doing breathing exercises. Finally some relief is found; I am comfortable for a few minutes at a time alternating between lying on my right side and my back.

8:56am – The pain returns – it’s rectal. My husband reheated the heating pads, added an electrical pad to the mix, to get more coverage.

9:15am – I’m back on the toilet – I feel like I should just stay there for the duration of my period.

9am – 5pm was spent in a stoned haze. I slept a lot. I got up once to eat lunch, sometime just before noon, and went back to the bed. I spent the whole day zoning out on the computer when I wasn’t napping, because the drugs had my attention span wiped out. I wanted to get chores done but could not.

Because I was mobile around noon, the pain returned. I took 600mg Advil gelcaps, rather than more Tylenol 3, because I like my liver.

Around 4pm, I took another round of Chinese herbal pills with a glass of warm goat milk mixed with chocolate powder (mmmm Trader Joe’s sipping chocolate).

At 5pm, the new acupuncturist, which was recommended by a friend, paid me a visit at home! It was an hour-long session. The last ten minutes involved needles to the lower back, but this stirred up some low back pain, as well as front/center uterine pain*. She showed me some acupressure points, and taped some acupressure seeds to my body. I am to press and hold the seeds to effect pain relief.

Around 8pm, I ate dinner (freezer food Amy’s brand cheese enchiladas).

At 9:15pm, I took my third round of Chinese herbal pills with water.

Acupressure points to alleviate pelvic pain.

*I just remembered to make note here that the pain that was stirred up was because the needle was in too deep or improperly placed. I ended up with a huge bruise on my backside where the needle had been, and it remained tender, raised, red/purple for three days. – steph on January 3, 2010

Effective immediately, I must initiate a new rule for comment posting. To try to get a handle on the hundreds of flagged spam messages I am receiving every week, I have set my blog posts to automatically close comments on articles older than 14 days.

This really upsets me to have to do this, but the spam is so bad that I’m not getting to legitimate comments by real people for two weeks to a month later.

I truly apologise to everyone who has not had a prompt reply from me, and I am sorry too that you will not be able to comment on any of my older blog posts. You can always send me an email at steph [at] livingwithendometriosis [dot] org to comment on any of my old posts.

Thanks,
steph

There are two kinds of Bad Endometriosis Pain for me; there’s gnawing, droning pain that won’t let up, which leads me to throw in the towel from whatever activity I’m doing (being at work, being out with friends or husband) and go home and hop into bed. This pain is not usually enough to make me cry. I will whine, I will bitch, I will take Ibuprofen first, then half a Tylenol 3 if the pain is still gnawing 30 minutes later, then take the other half of the Tylenol 3 if the pain is still droning 20 minutes later. I’m usually able to sit up in bed and hang out with a book or browse web on the laptop. Getting out of bed, even to go to the bathroom, stirs the hornet’s nest and brings more pain and bleeding. This type of pain leaves me pretty fatigued – between the pain and the medication, I will spend much of the day napping.

Then there’s the other kind of bad pain; the gaping-mouthed, wide-eyed pain. The tears streaming down my face pain. This pain either comes on suddenly or starts off like the other pain, but then ramps up to mouth-gaping pain within a matter of minutes. This pain leaves me immediately disoriented, and as a result I stagger about, trying to figure out what to do. “Do I eat something first, before taking my meds? Do I chance the stomachache by taking meds on an empty stomach? If I do eat first, what can I eat quickly? Do I take the Ibuprofen first, then the Tylenol 3, just to prove to the goddamned doctors that I’m not drug-seeking and using up my supply of Tylenol 3?”
This can go on for minutes, while the pain is ravaging my body, until I collapse in a heap on the floor or on the bed, sobbing at the inability to make a simple decision for myself. Sometimes my husband is right there and will get the meds for me. Sometimes my managers are there if this happens at work, and they will order me to take the meds and sit down for a moment. I was driven home by a manager back in October.
Most of the time, however, it’s just me, alone, with no one to help or advocate for me when the sudden debilitating pain hits. It is during those times that I end up in agony for longer than I should be in, all because of being too disoriented from the pain to know what to do in time.

This morning, I went through the second type of Bad Pain.

The pain woke me before my alarm went off. The pain was about a 6 on the pain scale, and yet I did not take any pain meds. I wanted more sleep before my alarm went off. I didn’t want to take pain meds on an empty stomach. So I went back to bed and whimpered in pain for the next half hour, until my alarm went off. When my alarm did go off, I realised the pain was increasing. I set the alarm for an hour later at 7:30am, so I could call in sick to work. I opted to take my Chinese herbs and then went back to bed. The pain seemed to oscillate. When my alarm went off again, I was already awake again from the pain. Getting out of bed was a huge mistake, as the pain ramped up immediately to the gaping-mouth sort of pain. I used the bathroom, then crawled back into bed and sat on all fours, ass in the air, trying to calm the pain. This whole cycle so far has given me a lot of pain in the back of the pelvis, as opposed to the usual frontal pain. In this position, I called all the necessary people at work to let them know I would not be in today. My voice wavered and I was near tears.
Then I had to get out of bed again to get some food in my belly so that I could take Tylenol 3.
I rifled through the cupboards and the refrigerator before settling on a YoBaby yoghurt (I like the banana flavour). As I was getting a spoon for the yoghurt, the pain became so intense that I began crying. My husband was in the kitchen, getting ready for work, and just stopped what he was doing to stare at me in worried shock. He’s not seen the pain this bad in awhile. Hell, I’ve not had pain this bad in awhile. For the last few months, my pain has been of the first-described sort of pain – the “screw this, I’m throwing in the towel for the day, this hurts” type of pain…not the can’t talk, can only cry type of pain.

I took my yoghurt to the bathroom with me, and ate while sobbing and sitting on the pot. How fun.
Turns out I was constipated yet again (not through the pain meds, I’m usually constipated), and since all my pain has been in the back of the pelvis this time around, the constipation hugely irritated the endometriosis situation. I breathed and stretched and massaged my sides – all while crying from the pain, mind you – and finally had a movement.
The pelvic pain began to subside immediately, but I was left totally exhausted by the ordeal. I finished my yoghurt and took a Tylenol 3, because I do not know whether the pain will ramp up again.

It has taken me two hours to write this journal entry so far, because of constantly having to get up, change position, use the bathroom again (flow is really heavy right now), and cat nap from exhaustion and the effect of the meds. In that time, two doctors have also called me back – I now have appointments with a new gynecologist and a pain management specialist.
In my next post, I’m going to rattle off all the doctors I’ve seen for endometriosis, and whether they’ve helped me or not, and why I’m no longer seeing those doctors. In the past, I didn’t want to name names for fear of treading on libelous ground. But seriously, if a doctor has not helped me, they’ve not helped me. It’s not libel if I just report the facts and observations without resorting to name-calling and whatnot. There are some I really am still angry at, but I’ll just have to abstain from obscenities. :p

On Sunday, December 13, I had started taking the Chinese herbal medication specifically prescribed by my new acupuncturist for the endo pain.

On Monday, December 14, I woke up with pain roughly at a 4 on the pain scale, and pushed through it emotionally to get ready to go to work. I wanted to see if I could make it through a day of work on the Chinese herbs and Ibuprofen alone.

Before work, I lifted TWO mattresses – we had two stacked on on top of the other, and we’ve been wanting to get rid of the old mattress underneath the new one, but have had nowhere to keep it until Bay Area Recycling could come and get it. I needed to get to the mattress below the top mattress, and stand it up on end so that it could be moved out of the house.
My husband raced into the bedroom after I’d already moved the mattresses, and in a panic he cried out, “I was going to do that!!!” I told him it was alright, and went off to work. I really did not want to leave him to do all the work. He still had to get the danged thing out of the house on his own.
After having moved the mattresses, the pain ramped up to a 5 on the scale, but I pushed through it, because I’d already taken the herbs and Ibuprofen.

While at work, a four-year-old boy threw sand in another boy’s hair, and when I asked him why he’d done that, he refused to look at me and kept playing in the sandbox. I told him, “You may leave our (outdoor) classroom and go back to your class, now.”

He ignored me.

I got right next to him and said his name, and repeated myself. He stopped playing in the sand and turned his back on me.
I said, “Either you can walk back to your room or I can carry you.” He folded his arms, so I picked him up and carried him in my arms like a baby back to his class. I set him down outside his door, and said, “Ok, go on in”.
At this point, he had a meltdown and began screaming that I would not pick him up again. He bent double and refused to go inside the classroom. His teachers obviously did not hear him outside the door wailing, so I picked him up again and carried him inside the room. He fought this time, kicking and screaming, so I got him into the room and set him down right in front of a pillow chair. He crumpled down into the chair head first and wailed. I explained to the assistant teacher what happened and she gave me a look that said, “ah yes, this happens all the time” and I left the room as she walked away from the boy, not even speaking to him (probably letting him get it all out before she addressed him – the teachers are not mean).

I relay all this info about my day to shed light on the fact that I lifted a child not once but twice, after having lifted two mattresses earlier in the day, all while menstruating. The pain level of course increased after lifting the child, but not enough to be debilitating.

A half an hour later, I was scrubbing tables and closing up the outdoor classroom. Another half hour later, I was on lunch duty. The pain ramped up while I was on the playground supervising children at recess. I did not pick up children. I did not run after children. I did a lot of kneeling and bending to talk to children between lunchtime and recess, though, and this is what really set off the pain.

What truly stirred the hornet’s nest however was the cleanup after recess, in which I was left with the sweeping. Go on, go get a broom right now and start sweeping. Pay attention to your sides and pelvic muscles. Seriously, that did me in. After sweeping, I collected my things, told my co-teacher in a shaky voice that I was leaving early, would not be holding afternoon outdoor class, and would likely not be in on Tuesday, either. She told me she would close up the rest of the room for me and I thanked her. I notified everyone else who needed to be notified of my leaving, and the secretary and financial director grilled me about my mental condition before letting me leave. They wanted to make sure I was not incoherent from the pain. They watched me swallow half a Tylenol 3 to allay their fears that the pain would claim me before I got home. I promised I would call them when I got home.

Every step I took walking the block and a half back to my car was excruciating. I called my husband to let him know I was coming home early, since he was already working from home, anyway. My voice was shaky and I was rapidly losing coherent thought. I got to my car and made it safely home, and called work to let them know I’d made it.
When I got home, I took the second half of the Tylenol 3, and spent the rest of the day bedridden and napping. Every time I got out of bed, the pain and bleeding ramped up.

I did manage to place calls to a pain management specialist and a gynecologist, in order to get that scratched off my list, because my current gynecologist has made it abundantly clear in the last 12 months that she is done trying to help me medicate for endometriosis, and has given me til January or February to get a pain management specialist to help me, instead of calling her for Tylenol 3 refills every couple to few months.

My husband went to the grocery for me and even made dinner for me. We watched some TV together and then I tried to go to bed and couldn’t, because I’d napped on and off all day. I uploaded some pictures from a weekend trip we’d just taken, and then went to bed.

In all, I had ONE Tylenol 3 pill total on Monday, and I took my Chinese herbs TWICE. I took Ibuprofen TWICE.

The pain got to a 6 on the pain scale on Sunday December 6, and I took half a Tylenol 3 while working behind the scenes at the Dickens Fair with my friend. The pain encompased my entire pelvic region into my lower back, and down the front and sides of my hips and thighs, nearly to my knees. Every time I bent forward, I got a sharp pain in my upper legs.

Also on Sunday is when the ass bleedy began. This happens every month right before george.

The pain dissipated by Monday morning, and I found out later that the pain was overshadowed by my body coming down with the flu. By 3pm I had a 100°F fever and was coughing a lot, had a horrible headache, and my left shoulder/neck/back had gone out in the same way a pinched nerve takes me out. I developed diarrhea as well. Initially, before I realised I had the flu, I thought my shoulder was going out because of how stressed I’ve been over finances lately. The shoulder/neck pain started upon waking, and grew worse over the course of the day. By 3pm when the fever set in, I had to rethink the stress theory and go with the flu as reason for shoulder/neck pain. My lymph nodes in my neck are HUGELY swollen, and I’m sure that’s impinging on my buldging disks in C4-6, setting off the pinched nerve.

This morning, the flu continued ravaging my body, and the pre-george pelvic pain also returned. I’ve been wrestling with it all together, all day. As of Sunday I’ve been dipping into my supply of Tylenol 3, which is supposed to only be for the endometriosis, but holy cow, the neck/shoulder/back pain is freaking unbearable.

I went to the doctor this afternoon – she showed no sympathy – said my fever is due to not hydrating enough. Won’t give me Soma (a muscle relaxer) for bum shoulder/neck, says it’s part of having the flu. Bitch.

I did not work on Monday because it was in the 40s fahrenheit outside, so I was dismissed for the day by just after 9am. Good thing since I hopefully didn’t infect anyone. Today I did not go to work, and because I still have a fever (currently 101°F), I will not be going to work tomorrow, either.

I hate to have my period when I also have the flu, but honestly if my body makes my period late in order to deal with the flu, I could end up missing next week at work, too. I am NOT happy about this. I NEED the money BADLY. :(

I am confident that I got the flu from working at Dickens Fair. The first weekend of Fair (Thanksgiving weekend), several of my cohorts fell ill for days. This past weekend, more of us fell ill. This happens every time we all work faire, anywhere we work faire, whether it’s outdoors or indoors, whether Renaissance Faire or Dickens Fair. This means I am rethinking attending or working faire ever again. Filthy humans.

Back to the pelvic pain update – since I’ve been consuming a lot of coffee, I noticed that the cramps I’ve been having come in short, sharp piercing bursts, rather than the usual dull achey drone. So for me personally, caffeine should remain a no-no.

Next update probably when menses actually arrives.

I tend to forget about journaling when I’m NOT in pain… I noticed that the last time I journaled here was 16 days ago.

Well! I am happy to report that for 10 straight days, from November 23 to December 3, I ranged from pain-free to low intermittent pain! Yay!
I must note that I’ve done nothing drastically different with my diet. This of course gets a yay and a boo, because I keep holding onto the idea that my diet is what exacerbates a lot of my pain. I’ve been eating chocolate, cheese, refined sugar, caffeine … all “forbidden foods” … and no pain resulted.

I did have about half a cup of champagne – maybe less – on November 28, and two days later, I experienced intermittent shooting pains in the front uterus/bladder region. However, that was also day 7 of the new cycle, when I ovulate, and will often experience mittelschmerz. So even consuming booze can’t likely be directly linked to causing pelvic pain in that instance.

This leaves me feeling that there’s nothing causing this good health aside from the endometriosis WANTING to behave. I had not embarked on any new medical treatments until December 3rd.
I’m getting as much exercise as I normally do. There’s no new medications or supplements in my diet, but I have been a bit more regular with taking evening primrose oil and niacin.

While I am ecstatic for having a nice run of pain-free living, I am absolutely furious because I cannot say for fact that I MADE myself pain-free via diet/excercise/medication/supplements/etc etc. It seems that it’s only because the bastard disease wants to behave right now.

But throughout those 10 straight pain-free/low pain days, I smiled, breathed and enjoyed each minute of healthful living.

On December 3, I went to a new acupuncturist. According to my calendar, I’ve not been to an acupuncturist since June 12, 2008. I had given up on acupuncture for awhile, because I didn’t feel the Chinese herbs were helping, and the Chinese male acupuncturist didn’t make an effort to try to see me regularly. This new acupuncturist is female, anglo redhead, and wrestled with endometriosis for years. I was referred to her via a friend. So I think I’m off to a better start this time around.

After my acupuncture session, my husband and I went to our friend’s house for dinner, and they were getting into the wine and whiskey (not together mind you, some had wine, some had whiskey!) I took a small sip of a nice whiskey, and I drank two shot-sized glasses of port with our friends.

The next day, on December 4, I experienced right side ovarian pain, which was stabbing intermittently throughout the day.
Today, I experienced (and am still experiencing) ovarian pain on BOTH sides. The feeling is of stabbing intermittently, with continually low dull pain in the ovaries, including the lower front uterus. Low back pain is also noted, and all day I have had moderate pain radiating down the outer hips to my outer thighs. There is occasional stabbing pain in my hips/thighs when I bend forward or sit.

Is it because I drank a small amount of alcohol Thursday night? Or is it just that my period is due in one week?

I’d like to note for the record, according to my calendar, that in 2008, I did not consume ANY alcohol for 77 straight days. Five days later, I ended up in the emergency room because my cramps were so bad that even I was scared.

So I’d like to officially NIX any idea that consuming alcohol recently is what brought on my cramps, and make the motion that my cramps have set in simply because It Is Time – I’m one week out, and this for my body is normal to be getting cramps.

The cramps in question this time around have been hovering at 4 – 5 on the pain scale.

Still, I’d like to give up cow’s milk-based cheese and ice cream for a few months straight and see if that has any effect. It’s the only cow’s milk-based food I still consume directly.
Indirectly, whey is in a lot of foods, and so I know I still consume cow’s milk indirectly on a regular basis. I’ll go with omitting the direct ingestion (cheese, ice cream), first. I rarely eat cow’s milk-based ice cream anymore anyway, so that should be easy enough.

I have a lot of pessimism in this – I firmly believe that any lack of pain is simply due to the illness behaving itself, and therefore the blame game on my part emotionally just really needs to stop already. I was born with this illness for cryin out loud. It has a mind of its own. I don’t think anything I do will influence it without adding side effects and/or consequences to the rest of my system.

This doesn’t mean of course that I’ll go out and get smashed, gorge myself on ice cream, and eat 50 pizzas. I still have allergies out the wazoo to contend with, and a desire for overall healthfulness in general.

I am so thankful for the 10 straight pain-free days I was able to have this month. I hope that once I emerge on the other side of the coming cycle, that my body can meet, if not exceed that record.

Oh – one more thing – I cannot remember if I told you where I’m at on the medication front. I spoke to my gynecologist by phone last week, and she expressed disappointment that I wanted yet another Tylenol 3 refill. The vicoprofen just wasn’t working out for me – I was getting dangerously depressed on the stuff after just a couple of doses during my period. I go through about 10 Tylenol 3 a month, which exhausts my 30-day supply in 3 months. So I call my gyn every 3 months. She told me she thought I was going to see a pain managment specialist. I told her I’d not been able to find one to see me in the evenings or on weekends, because as a teacher, I NEED to be at my job at my scheduled time Monday through Friday. She didn’t care for my answer. So She’s given me a deadline – no more refills after this one. Come February/March, I’m on my own, she’s done prescribing for me. Yet another doctor who thinks I’m drug seeking. This is totally common for women suffering with endometriosis to be treated in this fasion by their doctors, and it’s pathetic.

I told my gyn I had an appointment with an acupuncturist, but she didn’t count that as “pain management”. Many doctors still consider acupuncture as folk remedy. Whatever. I’m giving it another shot. I’ll of course also be contacting her pain management and surgeon recommendations.