I Will Not Suffer In Silence

My husband had woken me up about two hours after my last journal entry, to say he was going to take off to game night, unless I needed him to stay with me. I pleaded with him to stay. He said he would, but that he just didn’t know what to do if I was going to spend the rest of the day sleeping.
I told him that made me feel guilty – that he should just go to game, then.

It was clear he didn’t want to leave me alone, but he didn’t want to not be with his friends. It took me about 20 minutes or so to rouse myself out of my pain and pain medication stupor, but I told him “why don’t I just go with you to game, then?”

He liked that idea.

We collected my heating pads, my meds, the laptop in case I wanted to blog or attempt any homework, and two books; one for school and one for pleasure.

We got to our friend’s house and to my dismay, it smelled like smoke. I have a smoke allergy/chemical sensitivity. I was grouchy at my friend C – “WHY DID YOU SMOKE IN YOUR HOUSE.”
C replied, “Yeah but that was hours ago.”

I resigned to my fate – I was stuck here. My husband was already setting up the kitchen table for game night.

I was told where I could make myself comfortable, and I was told that a friend J, who lives in that house, was downstairs with a burst ovarian cyst. I didn’t want to disturb her unless I heard her crying out in pain, so I stayed upstairs in my own little world of pain.

I tried to heat up my heating pads, only to be reminded that they do not have a microwave in that house. I was directed to a big heating pad and was allowed to use that.

The offending smoker friend also helped set me up on his wireless network, but the moment I was set up, I was suddenly exhausted again and so I put the laptop away. I couldn’t even keep my eyes open long enough to hold conversation with anyone, watch TV, or read a book.

A third friend, also named J, who lives in that house, was also not feeling well. He sat in the living room on his laptop the entire night. He’s had spinal cord injury and had surgery after surgery to cauterise nerves. He thinks nerves are growing back or something, and is in a lot of pain again. I gave him one of my Tylenol 3 because he did not have any Norco on him.

At one point, around 8pm, the stabbing right side ovarian pain returned. I ended up on the floor, moaning in pain, rocking to and fro, with the heating pad. I was on all fours, then on my back, and then I settled into an arm chair w/ ottoman for the rest of the night. Their crazy cat October decided to be nice for once, and curled up on my tummy and purred all night. I was told she only likes women, and likes women best when they are in pain – that is the ONLY time that cat is nice.
Crazy cat.

So, the pain I had on Sunday lasted through until after 10pm, despite the fact that the bleeding had subsided again. My abs and ribs still felt bruised all that day.

I got home, showered, changed into my bedclothes, and went to bed.

Woke up Monday morning pain-free and got ready for my first day back to work. I was still spotting a little. I decided to try riding my bike to work, but as I went out the door to go to work, the pain set back in, and so I abandoned the bicycling idea and drove the measly one mile to work, instead. Glad I did. I needed my energy at work to move stuff around and help set up for the new school year.
I required a total of 800mg Advil to get through the day.

Got home and was very tired, but went on to my psychology appointment. I’m seeing a shrink again ever since I had a major depressive episode at the end of July. I’m still trying to figure out if it was JUST all the stress I have been under from school and finances, or if the Cannabidiol I tried for pain management set off an even worse episode of pre-existing stress and depression.
I evened out by August 18, but that was three weeks of pure hell from one menstrual cycle right up into this next menstrual cycle, which started on August 19. I am still on anti-anxiety meds (ativan).

I spent the rest of Monday evening hanging out with my husband, making and eating dinner, and watching TV. No homework got done on Monday.

Today is a new day – I start the clock so to speak – I have 21 days til next bedridden. Today I will go to work (not sure if driving or biking yet – it’s supposed to be in the 90s today so I guess biking would be better on the ozone), and when I get home, I will force myself to do some more homework.

In about 8 days, I will have Mittelschmerz – so the middle of next week – the first week the children are back to school. Hopefully it will go easy on me while I navigate my first week in the classroom.

One last thing – about last week sometime, I developed a cough again. So this is the second virus / cough since July 18 that I have caught. And now I’m going to enter a new school year with preschoolers. I expect to be sick continually in one form or another until December. I am pounding Vitamin C and Zinc and all the rest of my supplements, and will be back in the gym by no later than Thursday this week, once the heat wave cools down. Today is Day 2 of the first heat wave of the Northern California Summer.

The pain and bleeding stopped overnight, so this morning I got up, made breakfast with my husband, ate, got dressed, and went to the weekly Alexander Technique pain management class today at the dispensary.

While in class, we are told to stand up, sit down, stand up again, sit down, etc. We are showed how to move our body in more natural alignment, rather than moving always in protective or preemptive mode because of the pain.

I had just sat back down, and I felt a trickle. I’d been in class for about 15 or 20 minutes at this point. I did not get up and rush to take any medication, however, because the instructor hates pills and the whole purpose of this class is to show us how to move in ways that lessen the pain. So I sat there, and the pain began to ramp up.

And well, I was sobbing within 10 minutes of the trickle.

No position the instructor could put me in would help. I laid on my back, and the instructor showed the whole class – they all (there were six of us plus the instructor today) had to lay on their backs.
What is interesting is that everything he was showing them, I was already doing on my own; open up the shoulders. Open up the pelvis. Put both legs down on the ground. Make the back touch the ground fully. Release those muscles.

The tears streamed down my face when the next pain flare hit. The instructor came over to me again and tried to help me by taking my left leg, bending it, and pushing it up towards my chest, very slowly. I told him that hurt a lot in the pelvic region. He then showed me how to put my right leg up, left leg back down, and roll over onto my left side. Then he had me get to all fours, then bring the left leg forward to use to push myself upright. I wailed and tears flew, and he helped pull me gently to my feet and let me sit in a chair for the rest of the session.

After the class, he said it is rare to have someone in that much pain coming to his class. I told him I’d been bedridden this weekend, and knew that today would be a respite for a few hours before the next pain wave hit. He told me ‘ahh so you took a chance’. He told me I was brave. He thanked me for coming out despite the pain, and said he hoped to see me again next week.
I thanked him for being nice and caring and helpful.

I got outside to my car and called my husband, but he was not answering his phone. I assumed he either left the house without his phone or was in the shower. Either way, though, it made me upset, because I needed him.

I stood there for a few minutes, gathering myself, and then slowly got into my car and slowly drove myself home. I experienced the usual burning sensation of pain in the pelvis, and occasional stabbing pain which made me grit my teeth all the way home. I sat hunched and to the right side because of the pain. Every time I tried to lean back in my chair and open up my shoulders and chest and straighten up, the pain was worse.

When I got within three blocks of home, my husband called me back and apologised; said he’d been in the shower. I asked him to meet me out front to help me get out of my car, and he did. He asked if the pain had come back during the class. I said yes, and he gave me a big hug.

I got in the house and was medicating with 1.5 Tylenol 3 and 600mg Advil, when the next wave of pain hit. It was knifing and in the right ovary. I nearly dropped the bottle of Tylenol 3 into the sink. I clutched the bottle and the sink and sobbed. Tears poured from my eyes. My husband stood there over me to support me. He took the medication from me and steadied me. He opened up the Advil so I could take that medication.

After several minutes of sobbing, the pain eased off, and I said I needed a moment alone in the bathroom. I knew I was passing something. Sure enough, several thick, dark clots had come through. The colouration was nearly brown, the red was so dark.

After that, I got the heating pads and sat in the hard kitchen chair. My husband was close to me the whole time, hugging on me, braiding my hair, talking with me.

In all, the horrible pain lasted roughly an hour and 45 minutes.

I’m doing better now that meds kicked in and I have two heating pads on me. I am still bleeding moderately and passing clots.

I was in less pain bleeding profusely on Friday and Saturday. Today is easily the worst of the pain – I definitely hit 9 on the pain scale today.

And now the meds are taking me under. I must sleep.

The drugs and the pain did take me down pretty hard Saturday morning. I went back to sleep on the couch, and didn’t get up til around 1:30pm. I went to the bedroom to change out of my pajamas, and ended up going back to bed!! I didn’t get up again until my landlady called me at 2:23pm.

I put on some street clothes and had to deal with the landlady – her husband finally replaced the hard-wired smoke detector/carbon monoxide detector, and they inspected the source of the banging pipes we’ve been complaining about. The sprinkler system hasn’t been going on in the morning, but the pipe system outside clicks, and the pipes in the walls bang from the vibration/pressure. They never did tell me if they FIXED the pipe issue. I’ll find out tomorrow morning if the pipes begin banging again.

After the landlords stopped by, I felt sufficiently awake to tackle some homework. I spent the rest of the day doing homework, until 11pm. I FINALLY finished binder #3 out of 5 for the Language Arts class I took in July. The remaining two binders are about 50 pages each, and hopefully I don’t have much to illustrate, as a lot of them are just word lists. Then it’s on to the Mathematics binder, which is only half finished. I still have 70-something illustrations to do for that binder, plus photographs and quotations.
There’s more – LOTS more – but I’ll just focus that far ahead for now so I don’t have a panic attack.

Getting back to how my body did for the rest of the day – the bleeding and the pain both subsided. I had stabbing right side ovarian pain intermittently throughout the day, and my lower back hurt pretty bad at times, but for the most part, I was feeling much better Saturday afternoon than I had felt in the morning.

Around 7pm, however, the pain started ramping up again, and the bleeding resumed, although it was not heavy. As a precaution, I took another 600mg Advil and a Tylenol 3, so, total medication for Saturday was 1,200mg Advil, and two Tylenol 3.

Once I finished with my homework, I pushed myself to work a little bit more by scrubbing down the shower and tub with Borax after my shower, so that I could soak in the tub. My reward was a nice long soak in hot epsom salt and lavender bubble water. Ahhhhhhhh.

My low and mid back is still too tight for comfort, but the rest of me is relaxed jello goodness. Wish my husband was home to give me a massage – he’s still out with friends, and it’s after 1am. *grumble* I texted him and he didn’t answer. NOT COOL. So I called him. *relief* he’s driving a friend home and will be on his way home soon.

Two last things before I go:

The nausea is still an issue – intermittently throughout the day Saturday, and it kicked up again after my soak in the tub tonight.

Last night before I went to bed for the night, I tried to remember some Chi Nei Tsang stuff I was taught a couple years ago. Basically, I just pushed and held gently along the connective tissue near my belly button. I was hoping this would help with the pain and maybe slow the bleeding, but it was a total fail. On the other hand, I had a very nice bowel movement when I woke Saturday morning – the Chi Nei Tsang if nothing else always gets the bowels moving smoothly…

I knew you wanted to get that bit of TMI as the end of my journal entry. It’s only appropriate to happen at the end!

Okay, okay, I’m going, now. Good night.

Yesterday’s running thought was, “I cannot for the life of me believe that this much blood can keep coming out of me.”

The flow is usually heavy for several hours, then it dies down.

It never died down yesterday.

I turned in for the night after midnight and was still bleeding heavily and whimpering in pain and had nausea. My abdomen and stomach muscles all feel like I’ve been doing situps.

Actually, that may be true…yesterday was the first day I forced bedrest for much of the day, rather than continue sitting in the hard chair in the kitchen. Although it was easier on the pelvic pain to sit in that hard chair, I wanted badly to be under warm blankets and SLEEPING. So I forced the bedrest. Once in bed, I was restless and could not sleep for very long – due to the pain – so I kept sitting up.
Going from prone to sitting up uses the abdominal muscles. Perhaps I strained myself.

Or perhaps I’m bleeding so much that it’s “normal” for my abs to feel all bruised like this. I don’t know which scenario is true, and whether I should be concerned/scared…but the emotional truth is that I am really scared.

I woke up a few times during the night to go to the toilet, and even in the wee hours, I was still filling the bowl with blood – and also big clots. I kept saying to myself, “It’s never this heavy for this long. What is wrong?”

Both my gynecologist office and my local doctor herself called me back yesterday to tell me that all this bleeding is NOT caused by the endometrioma on my left ovary – that the ovary itself does not produce blood – that the bleeding is caused by the shedding lining of the uterus – that it must have just been extra thick lining this month.

And yet, every woman I’ve talked to who has dealt with ovarian cysts and/or endometriomas has said that they have encountered super heavy bleeding. My online friend V said she went through FOUR pads in one hour a few days ago!!! She also has an endometrioma.

Also, Mayo Clinic, the U.S. governmental Women’s Health page, and wikipedia all tell me that abnormal bleeding can be the result of having an ovarian cyst and/or endometrioma. These sites even mention the ‘bruised ribs’ / ‘worked out abs’ feeling I am experiencing – as being ‘normal’ for one who has an ovarian cyst or endometrioma.

So my endo sisters and the Internet ease my panic and fears over all this heavy bleeding, while once again, my doctors dismiss my experience.

I woke in pain at 7am, after emotional dreams. My best friend from high school and my best friend from back in 2002 – both who left me – was morphed into one person in the dream, and she was re-establishing contact with me to introduce me to her wife and show me her toddler son. She had been uneasy about this little reunion, because she thought I’d be mad at her for coming out of the closet, since I’d had a crush on her and she’d spurned me. I just wanted everything to be okay between us again. It was very awkward and emotional.

Anyway, I got out of bed and went and stood in the kitchen eating some food so that I could take more medication without running the risk of a stomach ache. I took an entire Tylenol 3, 600mg Ibuprofen, and .5mg Ativan.

I cannot remember how much medication I consumed yesterday. I think it was a total of three Tylenol 3 pills in a 14 hour period, and 1,200mg Ibuprofen, and .5mg Ativan.

My pain yesterday never got below a 7 on the pain scale, and was often hovering near 8. I need to also note that I’ve had annoying ‘growing pain’ type pain in the left leg all throughout this cycle.

In graphic terms, it would look like this on the Allie Brosh pain scale:

But when I woke at 7am this morning, still bleeding heavily and passing big clots, I became even more scared. I kept saying to myself, “The bleeding is supposed to have tapered off by now.” This put me in the Allie Brosh pain scale graphic of:

The drugs have kicked in, so I’m going back to bed. I lose another productive morning to the pain. I hope I do not lose the entire day like I did yesterday. There’s so much homework still to be done. I return to work on Monday. I had completely hoped I would have all of my homework done by the time I returned to work. Because of my emotional meltdown at the end of July and into the first three weeks of August, and because of the endometriosis pain last cycle and this cycle, I have lost MANY DAYS of productive homework time.

I hate this illness. I hate it. HATE. IT.

At 10:40am, I bled through a super thick fabric pad, super thick fabric liner, my underwear, down to my pajama bottoms.

This has never happened before – not with the doubled up super thick pads.

Forty minutes later, I checked myself again and I’ve already bled through the second thick pad and thick liner.

I’m on the line calling my GYN now.

…dammit…voicemail again. It’s always voicemail.

Called the local doctor and also left a message.

I’m getting faster, better advice from my endo sisters on facebook! As usual!

The answer is basically, “DON’T PANIC”, and also, big shocker, the doctors are full of crap when they say increased nausea and bleeding are not due to the endometrioma or any ovarian cyst.

Thank you, sisters. I don’t know what I’d do without you.

… just made it past the hour mark without bleeding through a third pad, so I think things are settling down.

I am spotting today. I woke up fine with no low back pain or any back pain. I had no cramps. I was in the kitchen eating breakfast when the cramps and the hypoglycemia hit. This is at least Day 4 or 5 of having hypoglycemia issues. The last time I had to deal with that on a regular basis was when I was eating gluten and yeast.

Okay and sugar.

So I have to cut the sugar addiction once again. Blah.

Anyway, the low back pain is starting to set in. I did not take any ibuprofen yesterday like I said I would. Today – right now – I’m popping 400mg Ibuprofen. I’ve been wearing a panty-liner for the past two days, but now I definitely need it cuz as I said, I’ve begun spotting this morning. Super light pink.

This is of course just PERFECT, because I’m supposed to make up a missed class for Language Arts tomorrow and possibly Friday.

Great. Perhaps I’ll just go in today at lunchtime and see what all I can talk to the teacher about, and photograph, and illustrate. Yes. That sounds like a plan. Do that now before the horrific pain sets in.

Planning my entire life around the pain – that’s me.

When I woke this morning, it was before my alarm went off, and it was because my lower back hurt so bad that I wanted to cry. This is the same pain I get every month right before george arrives.
I got up and moved around, and the pain eased up, but then the hypoglycemia set in.

So far this morning, I have eaten two bowls of cereal, a homemade 16oz goat-milk yoghurt smoothie with bananas and strawberries, and two gluten free waffles with cinnamon and gluten-free, dairy-free buttery spread. That was two hours ago, and I’m already hungry again.

So far this morning, I have had brain fog due to the hypoglycemia, I am still wrestling with low-grade pelvic pain and the constant need to check to see whether george is here, and I’ve nearly cried three different times.

I have not pre-medicated this week. I should start taking the ibuprofen today. I always have doubts that it does any good, but whatever.

Last night before bed, I tried to do some Tibetan Relaxation, which turned into leg lifts because I have had restless legs and scattered energy and no focus going on…for weeks now (it’s part of the depression and mania I’ve been going through, lately).

About half an hour ago, I spent ten solid minutes jogging in circles around inside the house to let off some energy and clear the brain fog a bit. I think it worked, though my legs are still bouncy.

I have homework to do. I am so woefully behind on endo blogging on the main website and on the youtube and twitter pages related to endo. I need to clone myself, or learn how to better manage my time.

Today I woke with low-grade vaginal and pelvic cramping, and the need to keep ‘checking’ to see if I’m spotting, yet. I can’t handle the continual need to ‘check’, so I threw on a pad. But every time I go to the bathroom, I’m still ‘checking’. I swear, it’s either obsessive compulsive behaviour or it’s some instinctual female thing. Either way, it’s annoying as hell.

I set out to run my errands, but did not bicycle. I drove my car, instead. I’m too fatigued and the low-grade pelvic discomfort is making me whiney. While driving, I had to have one hand on my inner knee, firmly holding the acupressure point, to try to settle the cramps down.

I also began having hypoglycemic attacks starting on Saturday. I usually get hypoglycemic pretty easily right before my period. Waking up hypoglycemic, and having it made worse by drinking red raspberry tea, was also quite annoying.

George is due on Thursday, but at this rate, I say he’ll be here by Tuesday night.

I have this huge amount of info to share, but I’m not sure yet if it can be related to this journal and this health condition or not, so I’m leaving it off this journal for now. You can read all about it over at my other journal, though. Once I determine its relevancy to this journal, I’ll port the entries over, just like I did before…in order to create this blog.

2:07pm Edit: WTF is it with my bowels today? This is the third dump I’ve had to take. This is WAY out of the norm for me, since by nature I’m a constipated pain in the ass.
Is the endo break-dancing on my bowels or something? Is it my stress level because I’m STILL trying to finish all the homework I got from the teacher training summer intensive? What the hell, man…