I Will Not Suffer In Silence

Here we are, once again, with the waiting game, and all the uncertainties of moment-to-moment planning.

I could blame it on all the sugar and alcohol (sake) I’ve consumed over the past four days. I could blame it on the blasted endometriomas on both ovaries. I could blame it on being stressed out by work, unfinished summer school homework, and my upcoming surgery. I could blame it on me being 39 years old. I could blame it on the overall illness itself: endometriosis.

But the fact remains that George was due on Saturday, and there’s still no flow, yet.

It’s the same thing I’ve ranted about, before:

I feel like I’m in limbo whenever my period is late. I go through each minute of each day knowing I should have been bedridden already. I’d already planned for the time off work. I’d already stocked up on groceries and tried to prep the house for my descent to the underworld. And then george is a no-show and I’m left biding my time, Waiting For It.
I’m in that special hell where I cannot exert myself too much because it causes pain…but I’m not in debilitating pain. And I’m super tired - I want to sleep all day and all night. And yet because there is no constant gnawing pain and/or bleeding going on, I feel like I’m expected to BE somewhere and DO something productive. But my body isn’t up for it. But my mind is restless. So the guilt sets in. I have video blogged about the guilt before, but it’s so hard to LEARN the lesson and just be okay with whatever my cycle is doing - just roll with it.

And now, the TMI part. It’s for science! It’s for education! It’s because there is no owner’s manual so I try to create it as I go!

On Saturday, I experienced low back and pelvic pain throughout the day - I was at a 3.5 on the pain scale for much of the day. It was annoying pain, but not debilitating. My mid to upper back kept trying to seize up, though, and this got worse by 10pm, when my vaginal mucosa changed from clear to pinkish. I contemplated taking a Tylenol 3, but I’m running low on it, so I didn’t take any. I did however consume 1,200mg of ibuprofen that day.

This morning (Sunday) I began spotting - it is dark brown and sticky, which is why I’m blaming all the sugar and alcohol intake. The spotting never ramped up the entire day, but the pain has been like a yo-yo. I took a total of 1,200mg ibuprofen again, and ate half a Tylenol 3 during the afternoon, which surprisingly made me quite loopy when I ran some errands with my husband. Thankfully, he was the one driving!

I was hoping that since I’ve been in moderate pain for the past week that I could at least have had my period by now, but noooooooo. The spotting that was happening has since disappeared since my shower this evening.

I’m setting my alarm for the usual time tomorrow, because I have no idea if I’ll be in any shape to go in to work or not. Had everything happened on time yesterday, I’d have spent half of yesterday in bed, all of today in bed already, and would be on Day 3 by tomorrow already. But noooooo. I get to start off at Day 1, Take Two, tomorrow.
Maybe.

The mid-cycle pain (mittelschmerz) started on November 16 and lasted through November 17.

On November 18, I was highly fatigued, and missed a friend’s concert. I was however able to get some teaching internship homework done that night, with my remaining spoons.

I got through work on November 19, and had to return to work on November 20 for the annual Fall Harvest Festival. Parents of the children who attend the school were put into groups and had a continent assigned to them. They all had to cook or bring foods found or popular to a particular continent. Each class did songs and dances relating to the continent/country they are studying. My class has been studying the Philippines in Asia, and so they counted from one to ten in Tagalog, sang Sampung mga daliri (see another cute rendition here), attempted a traditional dance, and sang I Am But A Small Voice (which went so well that they got wild applause).

After the Fall Harvest Festival, I needed downtime. I’d used up all my spoons, but I still wanted to go out dancing that night. I was pretty upset with my body for being so tired and achey. I was mad at my mind for being so moody and premenstrual.
I ended up staying home and joining a party of friends 2,500 miles away in my home state. They were having a party and so I joined them on Skype. They were all super drunk and having a fun time, so my husband and I decided to have elderflower fizz - it is elderflower liquor with champagne.

Well, the champagne hated me worse than I expected. I know I’m not supposed to have anything with yeast or sulfites, but this particular champagne must have been loaded with them. My stomach hadn’t hurt that bad or been that upset in a long time. What a shitty day overall it had turned out to be, health-wise and emotionally for me.

On Sunday, November 21, I went to a matinee with my husband and two of our friends - we saw Harry Potter and the Deathly Hallows. When I got home, I spent the rest of the evening once again catching up on teaching internship homework, and practicing my presentation for Monday.

Despite the weekend’s ups and downs, my husband and I were able to enjoy each other intimately. I note this because with endometriosis, it is often difficult to be intimate without grave pain. Twice a month is the norm - anything more than that and we’re jumping for joy. Such as it was this month - a veritable jumping for joy.

On Monday, November 22, I began to experience gnawing uterine cramps, and I knew this was the result of having been intimate with my husband over the weekend, because I am diagnosed with dyspareunia. Same thing happened which set off the mittelschmerz last week.
So on Monday, I had sharp stabbing pain on the right, then on the left, then radiating through the rectum as day/night progressed. That day, I took half a Tylenol 3 + 400mg Ibuprofen at lunchtime at work. Later, I ingested half a Tylenol 3 + 400mg Ibuprofen at dinner time, and then another half Tylenol 3 after dinner while at a friend’s house catching up on The Walking Dead.

When I got home, I experienced a painful bowel movement, which set off some nausea and shakes, and reminded me what I’ve known for years - that I have rectal involvement with endometriosis. I went to bed with a heating pad on my abdomen and lower back all night.

This morning, I woke nearly two hours before my alarm clock went off, and could not get back to sleep. I had only had five hours of sleep. Despite that, the pain level was very low, so I went to work. I did not bicycle to work because the pain has been too unpredictable, and it has also been raining.
While walking from my car to the workplace, I was so shaky that I thought I might collapse. I couldn’t tell if the shakiness was from nerves or from my body becoming so weak from fatigue and recent pain, but I forced myself to keep walking.
I got through the morning in a moderately agitated state, with frequent bouts of ‘warm flashes’ because my hormones are doing acrobatics inside of me.

The gnawing uterine cramps started up again at lunch hour. I experienced intermittent sharp stabbing pain on the right ovary. I took 600mg Ibuprofen at lunchtime at work, but the pain radiated to my rectum, which left me debilitated, shaky and nauseous. Right before I was to end my lunch break, my bowels went into a painful tizzy, and I spent many minutes on end at the toilet, trying not to vomit from the recto-vaginal pain as a painful bowel movement tried to happen. When I finally did defecate, there was blood in the stool. My anus did not hurt, so I wondered if it was from hemorrhoids or from endometriosis perforating my bowels. Either way, I was feeling really ill.

I can handle a certain amount of uterine pain more than I can handle the ovarian pain, but I cannot handle the recto-vaginal pain at all. May as well beat me senseless, it’s all the same.

When I got home from work today, I applied a heating pad to my bottom, half a muscle relaxer (Soma), .5mg Ativan, and a nap. I slept from around 3pm til nearly 8pm. I woke to urinate, then had cereal for dinner, which caused a new round of painful defecation - loose this time, with some more blood, and nausea. I took my temperature - it’s 99.4°F. But then it’s been 99 point something more often than not for months, if not over a year, now.

I began to wonder if I have an intestinal virus. I’d spent the better part of last week fighting off an upper respiratory tract infection. Preschoolers - they’ll kill ya.

Now I’m back in bed, journaling all of this before returning to sleep for the night.

Good night.

This has officially entered into NOT OKAY territory.

I continued to have pelvic pain throughout the day and evening on Sunday. I forgot how much Advil I ingested, but I know I took half a Tylenol 3 Sunday night before going to a friend’s house to hang out.

Yesterday was my first day back to work after missing two and a half days late last week. I bicycled to work, because I was excited to no longer be bedridden, and the cramps and bleeding had gone away. Or so I thought. :(

I experienced intermittent, sharp pain in the low uterus and on the right ovary throughout the day. The pain got really bad when I pedaled hard from work to my psychology appointment (ONE MILE), then pedaled hard to get home (HALF a mile!) so I could make it to my naturopathy appointment in time.

These are short distances I pedaled, on level ground. To be in a lot of pain like that threw me for a loop, but it’s not the first time. It happened to me back on September 20, while bicycling to my psychology appointment after work. I experienced pulling, stabbing pain in my right ovary. The pain lasted for several minutes after I climbed the two flights of stairs to my shrink’s office. Same thing again yesterday, but it was both the low uterus and the right ovary.

I have had the usual “OMG I’M SO TIRED” post-menstrual cycle thing going on, only it’s exacerbated by the fact that we just observed Daylight Saving Time this past weekend. So this fatigue thing will last through the next cycle for me, at least. :(

Last night we hung out at another friend’s house, so we could watch the second episode of The Walking Dead (it’s awesome, btw). Once again, I needed Advil (400mg) and Tylenol 3 (half a pill) to get through the evening. It was much worse to be standing or walking. The pain was likely a 5.5 on the pain scale when it struck throughout the day, spiking to 7 when I was riding my bike. The pain dropped to a 3 on the scale when I was sitting, though every muscle in my body was tense again, steeling against pain.

I got home from the shrink last night and then hopped in my car and drove over to the dispensary to attend my first Naturopathy class. Like most things, I’ll try it once and see how it goes. The naturopathic doctor I saw knows what endometriosis is, and seems confident she can help alleviate some of my pain. She is realistic and knows that the condition is currently without a cure, and very tricky to control. For that, I am retaining her. I like smart doctors who aren’t arrogant or cocky, or who promise me a cure *coughchoke*doctorkateo’hanlan*cough*

This brings us up to today. The pelvic pain is STILL with me. I had intermittent pain throughout the day again, and it got to stabbing level, spiking to a 7, when I ran half a block from my car to my home to catch the FedEx person in time. Once again, standing is worse than sitting. I’m about to head out with my husband for some groceries and supplies based upon my visit to the Naturopath last night, so we’ll see how bad the pain gets. :(

Going back to the Naturopath for a moment - she has several things for women with endometriosis to try. I am sharing these things here for women who do not have a Prop 215 card and/or who cannot afford to see a Naturopath:

• Drink half your body weight in ounces each day to facilitate elimination.
• Use castor oil packs over the abdomen and pelvic region every day for 20 minutes (see instructions below).
• Buy the Anti-Inflammation Diet and Recipe Book, by Jessica Black, ND
• Take 20,000iu of Vitamin A in palmitate oil daily (DO NOT TAKE THIS AMOUNT IF YOU ARE TRYING TO BECOME PREGNANT, AS IT CAN CAUSE BIRTH DEFECTS)
• 1oz vitex agnus-castus (chasteberry) twice daily via dropper or mixed into food
• 15 drops of seroyal chelidonium plex twice daily
• Seed cycle: From Day 1 of menses to Day 15, take 1tbsp daily of ground flax and ground pumpkin seed. From Day 16 back to Day 1 again, take 1tbsp daily of ground sesame and ground sunflower seed.

To create the castor oil pack, you will need:

• unbleached, non-dyed cotton, wool or flannel cloth, about 15″ - 20″ in size
• plastic wrap (or wax paper)
• glass dish with lid
• small bath towel
• hot water bottle or heating pad
• 6oz castor oil

Directions for the castor oil pack:

• Pour enough castor oil onto the fabric to saturate the cloth.
• Lie down and place the oil-saturated cloth directly on skin over treatment area.
• Castor oil stains! You may wish to cover the saturated fabric with a piece of plastic wrap or wax paper.
• Place the bath towel over the plastic wrap. If using heat, apply it now (medium warmth).
• Rest. :) You can rest for 20 mins or leave the pack on overnight.
• When you are done, store the oil-saturated fabric in a glass container with a lid. The fabric and oil can be used for months this way. Add more castor oil as needed. If you take a break in treatment days, just store the container w/ fabric in the refrigerator.
• To remove the castor oil from your skin, wash with a solution of 3tbsp baking soda per quart of water. You can use the same solution for washing castor oil out of linens and fabrics. Keep in mind that castor oil WILL stain cloth!

It seems like a lot, but I’ve done a lot more for other regimens, elimination diets, and detoxes/flushes.

It’s one more thing I have to say, “Hey, I tried it.”

Friday night (Day 3) I was still feeling crappy. After dinner, I ended up with stomach pain on top of the endo pain, along with the pelvic nerve pain radiating down the legs. I was at that point officially having a pity party. I was getting depressed. I had already missed work and didn’t go outside to see the sun on Wednesday, Thursday, and most of Friday.

I did notice by 9pm Friday though that the bleeding had begun to dissipate. Overnight, I barely bled at all.

When I woke up on Saturday, I hoped I would continue to be heading out of the Underworld. However, that was not the case. We had to get up at 8am to join friends for one of their pre-wedding meetings at the wedding location, but I just did not want to get out of bed. I was seriously tired. At the same time, my back hurt from top to bottom because of having been bedridden for days - again. The pain was intense - it felt like stinging.

I finally motivated myself out of bed at 8:30am and got in the shower. Trying to get dressed after my shower was excruciating. I had to pick up my ankle and move my leg gently, placing my ankle on my knee so I could put my socks and shoes on. I wrote to my friends “You know it’s that kind of morning when you end up shouting, “ON YOUR FEET, SOLDIER! MOOOOVE!” at your uncooperative body.” :(

We made it to the wedding meeting ahead of schedule, thankfully, and I moved super slow. The sister of the grooms showed up as well, since this meeting focused on her, since she is the one catering the wedding. Now she also has endometriosis - we are still waiting to find out what stage. But it’s got to be stage III or stage IV, because she also had a lot of other stuff going on, and had to have her uterus, cervix and right ovary taken from her. :(
Her surgery was three weeks ago, and she still looks like death warmed over. She’s still walking and moving like I was at Day 3 post-op. This is because there was so much trouble during her surgery to clean everything out, that she had to have the equivalent of a C-section. =(

I placed myself on call to help her with anything she needs this week leading up to the wedding next Saturday.

While we walked around the venue and discussed things, the pain began to set back in for me. I and another friend had to sit down for a few minutes - yet another friend who has menstrual pain, on top of chronic pain from two bulging disks in her back, spinal stenosis, and antereolysthesis. Between her, me and our friend who just came through a partial hysterectomy, the wedding party seems full of broken birds. We chuckle at it and go on with our bad selves. What else can we do?

When we finished with our meeting, the pelvic pain was getting to be too much for my friend G and I - mostly because we also had to go to the bathroom really bad. We had all driven separately, so took off on our own separate ways. My husband drove us down to Mariposa Bakery, which is a completely gluten-free bakery. It was my treat for making it through another month in the Underworld…and I got to use the bathroom. It was there I discovered I had started bleeding again. I was not happy about this. Thankfully, though, the pain never got above a 4 on the pain scale.

I bought us two cake doughnuts, a cupcake for the husband, and a pumpkin spice muffin for myself. We both didn’t care for the cake doughnuts. But ah well, it was worth the try! I haven’t had doughnuts in *years*.

We also got some coffee. Yeah yeah, I know, this is all bad - sugar and coffee and baked goods and whatnot. All inflammatory food. I was already bleeding and in pain to begin with, and had been for days, so I was well into “who cares” territory.

All yesterday it was hard for me to move without grunting because my body was so stiff. I started to loosen up by evening, thankfully. Also thankfully, the bleeding had stopped again, and I didn’t even need to wear a pad by evening.

However, by this morning, I was back to being super stiff and sore again. I partly blame this on the fact that we had moderate rainfall overnight, which has continued on and off throughout today.

I was alarmed to find that I had resumed bleeding by 9am this morning. I was furious, because this is Day 5 - after three days in a row of bleeding fully stopping. GAHHH so today I’m back to feeling super tired and run down, and every joint in my body is aching and stiff, and I’m having to wear a pad again. The bleeding is light, but it should be NOTHING by now.
The pelvic cramps are sharp and intermittent, and centered in the low uterus.

In spite of that, I went to my regularly scheduled Alexander Technique class at the dispensary today. I’m glad I went. When I got back home, I needed a rest, but now I am going to try to get on with my Sunday. There’s chores and homework to do for the coming work week. I will emerge fully from the Underworld by no later than Monday night. I decree it so!

 
Click image for bigger size.

Back on September 13th, I said we could not afford a second surgery for me until sometime next year.

Well, I forget, but it was sometime last week that I called my husband’s health insurance company to find out exact costs and co-pays for a second pelvic laparoscopy.

To my utter surprise, it appears that we have already met the deductible for the surgery, and some of my regular visits to the UCSF campus for pain management have been applied to the overall co-pay.

So the expected $1,400 co-pay for surgery is actually just under $300!

I had another talk with my husband, and asked if he could *please* put money away at each pay period through December to help me go through with this surgery.

I also asked what kind of surgery Dr. Giudice prefers. The staff asked for me, and I got a call back telling me that she prefers electrocoagulation type laparoscopy, and will do that for part of my surgery. BUT where it comes to the ovaries, she prefers to excise the endometriosis. I was told that she will use her best judgement and likely do both electrocoagulation and excision wherever necessary during my surgery.

She is not afraid to tackle the endometriosis on the bladder reflection, but will be cautious.

She is not afraid to check in the recto-vaginal canal for endometriosis, which she thinks was missed during my first surgery (and is very often easily missed because it is hard to visualise in the laparoscope).

So…that’s that. I will continue to avoid Dr. Cook for the time being, who is too good to take health insurance. Much of my costs at UCSF can be covered with my insurance through Aetna with a famous and renowned surgeon who does both electrocoagulation and excision surgery.

Pre-op is set for December 1, 2010.

Surgery is set for December 17, 2010.

No, going through one surgery does not make it easier to go through a second surgery.

I am terrified. I have lots of little fears and ‘what ifs’ as to things that could go wrong. That never changes.

And now I’m faced with having to possibly have no choice in taking a mood stabiliser, because I may have to go on hormonal treatment again after this second surgery. I don’t want to be more unstable than I already am, but I might have to go through it anyway (re: trying out the lamictal) - Just In Case surgery comes along and says ’sorry, had to take an ovary’ or ’sorry, killed the ovary by accident’ or ‘I don’t want you menstruating for three months post-op’. Any of those scenarios could happen. And I will need to be on mood stabilisers already -stuff that has been tried and trusted by the time of surgery - already in my system - so the synthetic hormone therapy doesn’t make me whacked and seriously With A Plan suicidal like it did back in 2007.

There is just too much on my emotional plate.

Too much.

Too much.

I should start noting my mental state here. I’ve been seeing a psychologist, and I saw a psychiatrist on September 14. Both think I may be bi-polar, but they do not agree on which type of bi-polar I am.

The psychiatrist gave me a prescription for abilify, but I refused to take it. I asked for and got Lamictal, instead. I still haven’t taken it, though. I am afraid of more side effects. I’m done with more and more mental stuff going wrong with me.

I’ll restate what I said in my previous entry -
Because I’ve not really enjoyed a pain-free or sick-free or allergy-reaction-free day in about seven weeks, I have hit my breaking point emotionally.

I’ve already been wrestling with what I call ‘dangerous depression’ since the end of July.

Well, it’s getting louder in the head, and more externally vocalised.

I went with my husband to a Victorian-era home showing that happens every year in our city. There were eight homes on the bill to walk through. I did not enjoy it this year. It was painful to move. My low back pain crept back in to flare with the trapped nerve in the shoulder, every time I had to climb stairs, or really move at all. And I was still in pain from one visit to the gym last Thursday.

I was super depressed.

I guess it doesn’t help that I’ve been on Soma (muscle relaxer) for two weeks, and I know from experience that it adds to my depression. I have not had a dose of it today and will refrain from taking any more of it.

After the home showing, there was the annual parking lot sale over at the famous tiki bar in town, so we went on over.
I immediately went for the booze. First time in 51 days that I got absolutely full on drunk. My husband had gone off to his sacred game night, leaving me in the company of friends still at the tiki bar. I was still going when his game session got out around 10pm. He picked me up and took my sorry ass home. Thankfully, no tears or puke or hangover this time. I drank lots and lots of water, thanks to a very attentive bartender, and was a good girl and drank lots of water when I got home, and took vitamins and advil.

I remain dangerously depressed.

Today at work, while rocking a child at naptime, I got stabbing right side ovarian pain that lasted for about five minutes. It went away until now. I’m just sitting on the couch, typing, and the ovary is pulsing a low stabbing pain. Today is Day 10 of the new cycle, so I guess it’s mittelschmerz, which usually happens at Day 8 of the cycle, but has been off by a day or three for a few months, sometimes not happening at all. I blame it on the endometriomas on both ovaries.

I bicycled home from work in 95°F heat - thankfully the ovary did not stab me on the ride home.
But I am wiped out after spending some time in the outdoors at work today. Ugh.

So this mental health thing. The meds. I’m so tired of meds. Today I started a detox diet - the one I tried to start back in July or August and didn’t keep up with. So I started it over today. Lots of supplemental pills to take with every meal.
And then either tonight or sometime this week, I might begin taking the Lamictal. I’m terrified of it. Read all the horrific side effects here. If you think that looks bad, read the side effects for Abilify, which is what the psychologist originally wanted me on and I said no way.

Now, let me tell you again what I’ve said before. I have been going through what I call dangerous depression since the end of July, 2010, because of all my pain conditions and reactions to medications.

This is also known as, yes I will spell it out and face up to it: suicidal ideation.

I have wrestled with suicidal ideation for much of my life, so this is nothing new. The frequency is what is worrying me.

But look here, if I take Lamictal or Abilify, the warning is basically the same:

Patients, their caregivers, and families should be counseled that AEDs, including LAMICTAL, may increase the risk of suicidal thoughts and behavior and should be advised of the need to be alert for the emergence or worsening of symptoms of depression, any unusual changes in mood or behavior, or the emergence of suicidal thoughts, behavior, or thoughts about self-harm. Behaviors of concern should be reported immediately to healthcare providers.

Why would I want to take a drug that will make me MORE suicidal than I already am?

I already went down that road once, with SSRIs (Paxil), back in 2000.

Honestly, I probably won’t take the medication. I’ll get my diagnosis officially recorded as bi-polar something and then I’ll manage it myself. I’ve lived this long…

I tried to go back to work on Thursday, September 16, but the Last Gasp happeed two hours into my workday and so I took a whole Tylenol 3 and came home. Thankfully, by Thursday night, that was the end of the major pain and bleeding.

I went to work on Friday and was able to complete a full day of work - the first all week. I never need this much time off this job for the pain, which tells me either the endo really is getting worse, or I’m becoming a wuss to the pain after enduring it for 25 years. I worked a total of 10 hours that week. Ugh.

Friday was not only my first day back to work, it was also my birthday. After work, my husband took me to a very nice sushi dinner, where I stuffed myself until it hurt, heh. I don’t think we went out that night - I was still too tired from just having spent a week bedridden. That’s how it goes.

Saturday, September 18, set the clock! Go out and have fun til the next endometriosis attack! We went to a nightclub down in Menlo Park to support the scene down there. I didn’t really have a good time, but we did get a nice picture taken of us:

On Sunday, we joined up with a fellow birthday girl for her annual Ice Cream Crawl, which took place in Oakland and in Berkeley. Around stop #6, I decided to eat sorbet instead of ice cream, which had given me a tummy ache, no matter how much lactaid I had ingested. The sorbet was raspberry chocolate flavour. To my dismay, it was full of raspberry seeds. I shared the sorbet with people in our group, and we all winced at how seedy the sorbet was.

Within twenty minutes, my throat began to get dry, then swell up.
Great.

So now I’m allergic to raspberry seeds? Wonderful. It’s in the same salicylate family with peach skins, grape skins, apple skins, apricots - all the stuff that also hates me either orally or intestinally.

I took a children’s benadryl but it did nothing, so I took a adult dose of benadryl on top of it - 36mg total. This of course made me a zombie, and so my husband ended our Ice Cream Crawl and took us home for the day. The swelling did not abate all day and all night, but I refused to go to E.R., because the last time I did, they told me they could not visualise the swelling, so it must just be me having a panic attack. To which I’d replied, “I know what a fucking panic attack feels like, and this is not it.”

I get the same throat swelling when I eat eel. Actually it’s the uvula that swells up. Same thing happened with the raspberry seeds, only not as horrible as it does with eel, thank [insert deity here].

I refused to go to E.R. because I cannot afford further debt with them - still haven’t paid off the June debt I incurred with another oral allergy attack. And I refused to use my epi-pen because you HAVE to go to E.R. if you use it. So I was kinda stuck. I knew I wasn’t gonna die, or at least I hoped I wouldn’t die choking on my tongue.

I made it through the night and the swelling went down by morning.

What a sucky end to my birthday weekend, though.

All through this whole time, I was still dealing with having to be on muscle relaxers for the trapped nerve in my shoulder. So I was quite the grump.

Monday, September 20, while bicycling to my psychology appointment after work, I experienced pulling, stabbing pain in my right ovary. This is not a good thing to be going through while pedaling. The pain lasted for several minutes after I climbed the two flights of stairs to my shrink’s office. Ugh.
The pain went away, though. Thankfully. But I was not even a full three days into my new cycle when that pain hit. The endometrioma is doing bad things to me. :(

I was able to bicycle to work for most of last week. I even made it to the gym on Thursday, September 23, for the first time in 146 days. I did the 2lb hand weight workout exercises as prescribed by my trainer, and then I did 14 minutes on the elliptical machine.

The pain from the workout did not hit until Saturday, just in time to help my friends move in 85°F heat. I designated myself cleaning lady that day, because on top of the workout pain, I slept wrong again and the trapped nerve issue in the neck/shoulder flared up real bad again.

On top of all of this, I’ve been bruising the hell out of my legs by running into the coffee table repeatedly, as well as the child-sized furniture at work. I have bumps and bruises and scrapes. I think the clumsiness is due to the muscle relaxers.

Because I’ve not really enjoyed a pain-free or sick-free or allergy-reaction-free day in about seven weeks, I have hit my breaking point emotionally.

It’s not fair that I can’t enjoy my 11 - 20 days between endometriosis pain cycles being totally free of any other sickness or pain.

It’s always something. :(

My friend Jeanne over at Chronic Healing wrote an article that I simply must describe here.

Her article, titled “Endometriosis Patients Viewed As Cash Cows?“, addresses a rhetorical question that’s been brewing in my own mind for quite some time.

I am subscribed to a number of news alerts, medical journals and publications (as is my friend Jeanne). Every so often, I’ll see something like, “Newly published market report on Hormonal Contraceptives - Since the 1960s, hormonal contraceptives have been widely used as effective birth control in the developed world. Although they are mainly used to prevent pregnancies, they can be used for treating other conditions such as acne, endometriosis, and polycystic ovarian syndrome. In 2008, the hormonal contraceptives market was worth $6.2 billion across the seven major pharmaceutical countries.” (Nov. 27, 2009)… and I’ll think to myself, “Hm! Me being sick sure does make a lot of money for some people! Amazing how I’m still not well, and how these companies are booming!” But then I let it go without bitching about it on my main Living With Endo site.

The latest such news item was titled, “Global Endometriosis Market to Grow to $1.1 billion by 2017 Says Latest Report“, and Jeanne checked her news alerts before I did, and had something to say about it:

Yet another “endometriosis pipeline assessment & market forecast” has been released. Who is looking out for the endometriosis patients in this world of people trying to make money off the backs of endometriosis patients? With 89 million endometriosis patients worldwide, I wish I knew of an endometriosis organization that had my back. Sadly, I don’t feel there is an organization that fits this description.

I took the discussion to my facebook page, where I had an exchange with my friend D.

D: _everyone_ who has a chronic illness is seen by big pharma as a revenue stream. I know this for a horrible fact.

Steph: yes, it is true. Jeanne touched on that in her article, as she has multiple chronic illnesses.
There’s just this wave of people cheering on endo organisations and doctors, without really doing background checks so to speak, and so her article is a wake-up call for people.

D: to expand, I can’t speak to the subject of nonprofit interaction with patients and profit, but from where I’m sitting (…the corporate “for profit” managed care industry…) there is a definite emphasis on “managed care” and specifically not on curing anything. The people running these companies would never outright SAY it, but they have a vested interest in making sure people stay sick, and stay dependent. Cures for ANY of the big life-changing-but-manageable illnesses (Diabetes, Endo, take your pick, theres lots more) would instantly dissolve multibillion dollar businesses PER DISEASE. You can be damn sure the companies running those businesses don’t want that to happen.

I’m not usually one for tinfoil hats, but in this instance, it’s really really hard not to wear one.

D: The magic words are “cure” vs. “managed care”. If you see “managed care” the likelihood is that money comes before wellness.

Of course, if you see “cure” first, then it’s just as likely they won’t have a dime to their names to do the research with…yay American medecine.

Steph: this is why whenever I see anything for my illness and my father-in-law’s illness advertised or discussed from A Certain Corporation, I roll my eyes. I know for damned sure they don’t give a rat’s ass about us getting better.

In fact, the stuff touted for endo care from A Certain Corporation, as well as any private, public, for profit or not for profit joint at this point so far has only been full of people who lie, cheat and steal at our expense, with drugs that only hurt us worse, not help us.

This INCLUDES the biotech firms doing DNA studies on us - they SAY they are doing this for a cure, but you read their quarterly earnings reports or studies published in medical journals (I’m subscribed to several) and all you see is language indicating they want to be FIRST to use the DNA studies to create a new DRUG THERAPY, not a f***ing cure.

There’s two endo orgs slinging mud as we speak, because one got all pissy that the other was first in publishing data. So the other went and did a smear campaign on the integrity of the data. It’s ugly business being so charitable towards us poor, helpless little females with endometriosis.

Then there’s the doctors, who sit on the technical advisory boards for several competing organisations and biotech firms at once.
Hello, conflict of interest? Hello lining your pockets, much?

Lastly, there’s the butchers, making money off of maiming us further (*cough*nezhat *choke*metzger *ahem*there’s more).

It’s slow work, but I’ve got a database going on ALL of these choads.

You are most certainly justified in the tinfoil hat.

Be sure to check out Jeanne’s article, titled “Endometriosis Patients Viewed As Cash Cows?”

If I wasn’t already bitter enough, I went searching for images of a retroverted uterus, because I’m wondering if half the clotting that happens during menstruation is due to the retroverted state of my uterus. While searching the interwebs, I happened across The Household Physician website, which shows the following treatment for a retroverted uterus:

Click to enlarge, and note how the caption specifically says that AIR will hold the uterus in place until a pessary can be placed.
The website of course offered no dating of the material which it espouses, so I did some digging and found the original work over on Google Books, by the same title; The Household Physician

This book was published in 1895. It is important to note that 115 years later, pessaries are *still* being used to “treat” a retroverted uterus.

I guess I should be thankful that leeches are no longer being used.

 
I’m going to ask if it is possible for my surgeon to surgically correct my retroverted uterus during the laparoscopy.

But honestly, you’d think that in 115 years, the medical establishment would figure out how to help instead of torture women. We remain second class citizens (or worse in some parts of the world) as far as health care goes.

And that is my bitter rant today.

This morning my husband confirmed that he would be late to work so that he could take me to the DMV to renew my license. I hopped in the shower and made myself all pretty and off we went. We made it in time and only had to wait 15 minutes, thanks to me having made an appointment. That standing around though, first for the fee paying for the new license, and second for the photo, caused a lot of pelvic pain. There literally was nowhere to sit. I was on 1 Soma and a half a Tylenol 3 plus 400mg Advil, so I was sleepy and yet still in pain. The trapped nerve in the neck was behaving, at least.
Once I got through everything, I was told my new license will be in the mail in 2-4 weeks.

My husband had parked a few blocks away because the DMV was so packed - I overheard a woman telling someone that the Hayward DMV had closed down, that’s why the Fremont DMV, usually a quicker adventure, was now looking like Oakland (packed out the door all day long. So my husband had parked a few blocks away. I shuffled along and my husband was impatient and worrying about getting to work, so I told him to go on ahead of me. We agreed to meet at the half-way point - at the Smog Station across the street. I went in and used the restroom, and met my husband outside. We drove back home and on the way, I took another half Tylenol 3 for the pain.

The bleeding had subsided ever since my shower this morning, which I was grateful for, but of course the continuing pain let me know that more gushing will be on the way.

I got home and rested a bit, then got a burst of energy, so I tackled the pile of homework still waiting to be finished. I got five illustrations done! I hope to finish off Binder #4 tonight for my Language Arts class, and do some more work on the Rationale paper for that class. Any homework I have left to do is LONG overdue, but I will eventually finish it and hand it in, and will still receive a grade. I’ve not stopped being anxious and guilty about it but I’ve stopped freaking out over it. I come to accept the fact that I’ll still be proud of myself no matter when I turn the homework in, and that all of their threats to have people turn in homework in a 2 week turnaround were mostly empty threats poorly designed to try to motivate people through fear. Which is hilarious, considering the book Positive Discipline, which is so encouraged throughout our Teacher Practicum seminars. But who says anyone ever listens to their own advice or reason. This training center certainly doesn’t.

Around 1:50pm, I re-upped my medication and took 1 Soma and 400mg Advil. I have not needed the Tylenol 3 since this morning, because the cramps abated, and the bleeding still had not resumed.

The Soma made me sleepy, and around 3pm or so, I took a nap in my own bed. I slept for nearly two hours, and woke from some crazy dreams, which I’m sure were medication-induced. I can’t even remember them, now. I think it had to do with a classroom.
I noticed that the bleeding had resumed, but only by a tiny amount, and I was still free of cramps. The trapped nerve in the neck however was agitated again, but it wasn’t time to take meds, yet.

I made myself some late lunch just after 5:30pm, and have been on the couch ever since, just resting. I am groggy from the Soma. I am still feeling really guilty for having taken today off of work, even though I have been drugged all day and know that without the drugs, I’d be in a lot of pain. The early part of the day, I had pelvic pain despite no bleeding. So it’s still valid and it’s still reasonable that I called off for another day.

What is unreasonable for me is that my body chose to have the calm between the storm in the middle of the day, which means the Last Gasp might not happen until tomorrow. This means I stress out, wondering if I’ll have to come home sick from work tomorrow, too. FOUR DAYS! I have NEVER taken four days off work from this job because of the endometriosis. Ugh. Is it because of the new endo growth? This is month two of really heavy bleeding. Is it due to perimenopause? Is it because of leftover stress from the summer training classes? Four Days!!! I don’t even usually take THREE DAYS off in a row like this. It looks so very bad on the résumé, so to speak, and makes me consider whether I should file for disability again. Bah. I don’t miss 14+ days of work in a month, so there’s no sense in filing. They will reject me again. I really hope this job does not fire me for my increased absences. I cannot afford surgery until spring or summer, so absences will happen every month. :(

Something else I accomplished today - I checked back through my diary to see when the last time was that I took Soma when also dealing with endometriosis cramps, and it seems like it was in 2007.
I also found out from my own Things I’ve Tried page that “Soma dissociates me so nicely from the pain but leaves me moderately to severely depressed after taking it for even one day, contributes vastly to weight gain“.

What was I saying recently about how some things are best forgotten? In this case, it would have done me good NOT to forget. Now I have to monitor myself for further depression. I have already been gaining weight - I’ve gained 6lbs in the past month, and my whole body is feeling it. I don’t know if you can relate but I swear, my FAT hurts in my hips and arse. No joke.

Let’s hope I can undo the trapped nerve in the next couple of days, so I can get off the Soma again. But DAMMIT, it DOES dissociate me so very nicely from the endo pain. Blah.