zeptember

Today’s symptoms so far:

• Alternating manic energy and extreme fatigue
• Clay-coloured stool (from all the Tylenol 3 and Ibuprofen, which means my liver and kidneys are under duress again)
• Bleedy ass (constipation from ovarian cyst, further exacerbated by all the Tylenol 3)
• Low-level nausea (probably cyst-related)
• Easily overheating upon any exertion
• Racing heart/anxiety (likely due to cabin fever and the manic energetic upswings, halted by not being able to do much with the energy because body won’t cooperate)
• Continued low back pain
• Dizziness upon sitting or standing, sometimes when walking (I’ve bumped into walls twice today from loss of balance, and I wasn’t on meds at the time)

The bleeding has subsided once again, as have the uterine/pelvic cramps.

Although I started spotting last Thursday, I didn’t actually start bleeding with normal flow until Sunday. Which means I had two days of heavy flow (Sunday and Monday). I had barely any bleeding on Tuesday until 11:20pm, then I had severe pain and bleeding all night. Woke looking like a ghost this morning and the bleeding subsided again.

This is not normal.

I called my GYN office and left a message asking for advice on cysts and low menstrual flow. I continued searching google for the answer to my question - Can An Ovarian Cyst Stop Menstruation?

I finally found the answer, which is yes, a cyst can stop menstruation.

The next question then is, Does That Mean Blood Is Building Up Behind The Cervix? I.e. I Will Be In For Major Pain When The Cervix Has To Dilate To Pass The Clots Which Have Built Up…

Forgive me Father, for I have sinned…

I had a burst of energy, and no cramps, so I got out of bed.

I found the fairy lights.

I took down the old burnt out lights and put up the new LEDs, and now the living room looks prettier. The new lights are purple, not blue. I like blue better but the purple will do. We’ve had a hard time finding blue LEDs this year.

I also organised a pile of stuff that needed to go back out to the storage unit, and cleared a spot by the front window so we can put all the curly willow from the wedding into one pot and create our curly willow christmas tree.

I took frequent breaks, and after hanging the lights, I had to take a nap before I could finish the rest of what I’d started. But I felt deeply accomplished in what I had done, and smiled at the living room as I lay on the couch.

When my husband got home, we went looking for rocks or stones at the local craft store, so we could secure the curly willow in one vase. I think though that we’re going to have to use more plaster and find a way to secure the branches so they don’t fall over again.
We also went to Radio Slack and got more memory for our camera.

And when we got back home, I washed most of the dishes.

That’s a lot of work for someone who was just bedridden hours earlier.

But the truth is, I was feeling better. I was antsy. I had to get out of bed. Both during and after such a productive afternoon, I felt guilty for my burst of energy and health. I felt guilty for having taken a second day off work.

Early this morning, I was in no shape to go to work. I was in a lot of pain - lower back pain and pelvic pain. And I was still bleeding a lot.

And with the type of work that I do, I can’t just say ‘okay I’m feeling better, I’ll just go in and clock a few hours at the desk’. It doesn’t work like that as a nanny. I am either there or I’m not there. There’s no coming in late for half day with that kind of job.

But even when I did have that kind of job, I still felt guilty for feeling better. I’d go into work and management would see me and wonder why I was late. They had no idea that hours earlier I was in crippling pain, shaking and pale from the blood loss. And because I knew management was judging me because of my tardiness and absences, I felt guilty, even when the truth was and is, I AM NOT AT FAULT.

It is WRONG of me to feel guilt over something as lovely as being pain-free for a couple of hours.

When the pain does return, it won’t be because I was active. The pain will return regardless of whether I was in bed or active.

The guilt needs to stop. I need to stop worrying about being judged on account of having an incurable debilitating illness. Those who would judge me for being pain free and happy for a few hours in the middle of my cycle - they are not worthy of my attention, much less my caring, worrying or any emotion. They are not worthwhile.

Say it with me now…
I am not guilty. I have no regrets. I did what I wanted to with the time that I had to enjoy pain-free. I am content. I am okay with my actions. I have no regret.

11:20pm Edit: See? No need to feel guilty. The gushing clotting blood and pain has returned.

(wakes up, blinks, house is dark, it’s dark outside)

*sigh*

And there goes the day.

I reached for the laptop and found that my friend said the very same thing just minutes before I did.

kekeconradin 4:44 PM flaring stopped for now
kekeconradin 4:44 PM my day has been wasted
kekeconradin 4:44 PM you knwo that feeling
zeptember 5:11 PM i juxzgy woe
zeptember 5:11 PM just woke
zeptember 5:11 PM and felt the same - thehouse is dark
kekeconradin 5:12 PM yeah, its all dark now
zeptember 5:12 PM
kekeconradin 5:12 PM 12/1/08 almost all gone
kekeconradin 5:12 PM I was producitve for liek 2 hours, then thats it
kekeconradin 5:12 PM I’m tempted to pop another pill and just screw it, sleep until tomorrow
zeptember 5:12 PM yep same here
zeptember 5:13 PM same about the pill too
zeptember 5:13 PM it’s so depressing.
kekeconradin 5:13 PM why being awake and feel time wasted, body not coorpeating..when one can pop a pill into happy happyu dream land and wake up tomorrow?
zeptember 5:13 PM yup

My friend suffers from Chronic Pelvic Pain (CPP). He’s the only male I know who I could say really understands the pain women with Endometriosis have.

Woke up around 2am, severe cramps immediately followed. Took a Tylenol 3.

Woke up around 9am and turned over, severe cramps immediately followed. Took a Tylenol 3.

Struggling to stay awake. Feeling bad cuz i know today is going to be even more a blur than yesterday. Feeling bad cuz whenever I am off work, I think of all the stuff that can be done around the house, even little stuff, like tackling the scrapbook project of yore. But even organising photos and cutting up old newspapers and magazines is too much when in pain and/or on the meds. The only thing I really have is the laptop. If I didn’t have that, I’d be even more miserable. I used to be more miserable, just laying in bed, staring at the walls or out the window, longing for some connection to the outside world.

The pain is unbearable at 1:44pm. I’m already considering calling an ambulance.

The bleeding started gushing around 1:20pm. The pain followed immediately. This is the third menstrual cycle I’ve had which started off very slowly and with dark brown blood. I started late Thursday afternoon, with only the tiniest spotting of dark brown. The pain level was the same as it’s been all month, and centered mostly in the lower back and sides as it has been.
Today is the first day with real, hard core pain, and the blood is getting redder now, less brown “dirty” blood.

I told my husband yesterday that it’s bad when I have the brown blood, because it means it’s clotting back behind my cervix, and eventually will have to come out, and that’s what causes the cramps, because my cervix has to dilate to push the clots through.

I took one Tylenol 3 - I’m about to take another one after only half an hour. I’m in unbelievable pain. I am afraid. I am home alone. My husband went off to band practice.

If I make the decision to go to the hospital, I will call my husband first, and call a local friend second to see if they can take me. Failing that, I call the ambulance.

Regarding my gynecologist, she finally called me back Wednesday afternoon, and was apologetic - she hadn’t typed up the notes from our visit on November 7th because the tiny room we were in had no computer hookup. She said she’d forgotten what all had taken place. We discussed it together, and she remembered as we talked. She said she was putting it all in the computer then, and would give me my referral. She gave me the number to call, but warned I’d not likely get through anytime soon because of the long holiday (Thanksgiving) weekend. She was right.
We discussed what to do should I end up in unmanageable pain again. She said the E.R. is the best place to go because they’ll run blood tests while I’m in the thick of pain, and can do ultrasound or whatever needs to happen right then and there, and give me more powerful meds. I told her I would go next time.

Well here we are I think at ‘next time’.

I’m getting nauseous from the pain. Giving it a few minutes as now the first Tylenol 3 is kicking in as far as being stoned goes. Perhaps I won’t need another. I’m regulating my breathing and talking myself down from panic mode. Journaling helps immensely.

This morning I performed Chi Nei Tsang on myself, because I was tired of having the brown blood. I wanted the flow to start already. I was mad at the cyst and at my body for being broken. I knew that because there was no pain and blood flow right from Thursday evening, it meant that I’d have to miss work again for up to 3 days. This in turn stresses me out because I fear being fired again.

As soon as the pain set in, I emailed my employer and told her what was going on. I’d sent a status update last night, too, so she knows there had been no pain and that late pain arrival was inevitable.

This morning I ate two bowls of gluten-free cereal with almond milk, had a piece of pumpkin pie (minus the crust) with homemade whipped cream (full dairy), and later on, I had some gluten-free white cheddar popcorn (corn/rice puffs). I’ve had two out of three cups of detox tea (kidney and liver tea) today, and have taken 1 ginger capsule and 1 uva ursi capsule today.

I think that’s all the food I’ve eaten. Now that I have Tylenol 3 in me, I’m hungry again. I always get the munchies on Tylenol 3.

I did not take any Ibuprofen today. I wasn’t in much pain until the sudden onset after 1pm, and there was no time to try the Ibuprofen - the pain level shot up to ‘7′ on the scale and called for the big guns, so I took the Tylenol 3.

The spasming uterine pain is fading. Being reclined in bed with the rice bag heating pad helps. I just got a sudden pain in the chest, however. I get that a lot when on Tylenol 3. I know this stuff can kill me.

I am afraid, mad at my body, depressed at losing another sunny day, alternating feeling sorry for myself and mad. The bad feelings do not help my condition. I need to love myself unconditionally despite the illness. I need to find personal strength in this, rather than wallowing in the superficial and the sensory world around me.

Now don’t get me wrong, I don’t believe I am personally the cause of my illness. I’ve had this since onset of menstruation at age 14, when I was still considered a child. Three of my four aunts have Endometriosis, and so did their mother - my grandmother.

There are new agers out there who say I caused my own illness, that I came into this world with a choice and I chose to be ill. Even some of the alternative medicine people I’ve tried to see over the years have purported this to me.
Those people need to spend some special time with the necklace.

…

Well, the pain is stable. It’s stopped ramping up. And I still have a load of laundry out back to take care of. Ugh. I think the neighbors will just have to wait, or move my stuff outta their way if they want the washer.

Today I:

• did two loads of laundry
• cleaned out the big green recycle can in the backyard and put in a biodegradable bag (to hopefully keep the stench down)
• did some dishes
• took out 1 of the 3 recyclables cans from the kitchen
• took out the food scraps
• shopped at two grocery stores on opposite sides of town

And my lower back is of course killing me, so I have a heating pad on it, and soon I will be asleep.

I think I’m still not used to the time change, cuz while I was out shopping, all I wanted to do was cry the entire time. Then again, having to walk so slowly and carefully is really depressing, so perhaps that’s why I’m so emotional. And ovarian cysts make one very emotionally unstable anyway.
Blah.

The month of November for me so far, pain-wise:

As you can see, I’ve not had a break. I’ve missed nearly 4 days of work this month and have not been at top performance at all.

The pain worsened yesterday after having 2 days nearly pain free. I’d been taking it really easy at work and after work. The pain returned on Saturday after being intimate with my husband, and grew worse until I saw my Chi Nei Tsang practitioner at 4pm. She wasn’t able to rid the pain, but was able to transfer it from the front and side to the back, where the pain collected and felt like electric bolts of pain in the bottom of my spine, and then dispersed a little.

Let’s compare this month to previous months:

June: I missed 4 days of work from the pain. I was working through an agency at the time.
July: I missed 2 days of work from the pain. I was working for a private family 3 days a week, so missing 2 out of 3 was a big deal.
August: I missed 1 day of work from the pain.
September: I missed 2 days of work (my 2nd day working for a new private family and I fell ill, but I warned them ahead of time this would happen).
October: I missed 3 ½ days from the pain.
November: I missed nearly 4 days from the pain so far, and have been in near constant pain since my last period.

Because god hates me, I get my period twice this month. I’m due again the day after Thanksgiving. But george could arrive sooner and cause me to miss more work.

The family I work for has expressed frustration with having to miss so much work on account of me. But you know what? I hope they fire me. At least then I can try to get unemployment and look for a new family to work for. Failing a new full time nanny gig on account of my illness, I will try another agency or go back to the old one again, and work whatever comes up. I will also continue telling friends that I’m available to work, and I’ll take their offers before the agency because I prefer working with 1-3 children at a time in a private setting (read: my own pace and schedule) anyway.

But the family is smart - they know they’d have to pay unemployment if they fire me, and worse, I can try talking to the labor board again if they fire me.

The best situation for them and for me is to get a new job and give 2 weeks’ notice.

Today, I began my research anew and learned from ovarian-cysts-pcos.com, that what I have firstly is a Functional (physiologic) cyst, and secondly, under that category, it is a corpus luteum cyst.
But I still haven’t found info on how long it takes for a cyst to grow to 4cm in size.

However, ovarian-cysts-pcos.com also tells me the following:

“Rarely, a corpus luteum cyst can grow to 3″-4″ in diameter and potentially bleed into itself, or twist your ovary, thus causing pelvic or abdominal pain.”

Okay, so what I have is considered rare.

This lends further credence to my belief that I should be sent out ASAP for a radiology appointment.

And today is yet another day where I have yet to hear back from my gynecologist.

ovarian-cysts-pcos.com also says the following:

“A recent study from the Institute of Research Pharmacology in Italy analyzed the diet over a ten-year span of 225 women with benign ovarian cysts and 450 women who did not have ovarian cysts.
The researchers discovered that the type of food eaten influenced the development of cysts. For example, they said that women who consumed the most beef and cheese developed the most ovarian cysts. In contrast, consumption of green vegetables provided a strong protective effect. This study makes it clear that what you eat will influence whether or not you develop ovarian cysts.”

The article concludes by saying they’ve written a book chock full of dietary advice, called The Natural Diet Solution to PCOS and Infertility, and notes that the same diet also helps those with ovarian cysts. The book of course is $30.
I might be inclined towards its purchase because they did not refer to their knowledge as “secrets”, nor did they have a website layout mimicking those of scam artists, as the Mary Parker (as mentioned in my previous entry) site does. And, bonus, they gave diet clues in their article.

I also found websites stating that refined sugars and carbs are culprits in ovarian cyst creation. answers.com in particular states

Dietary guidelines for treatment and prevention of cysts include:

• Eliminating caffeine and alcohol.

• Reducing intake of sugars, including honey and maple syrup, and refined starches such as white flour products.
• Increasing use of foods rich in vitamin A and carotenoids; good choices include carrots, tomatoes, and salad greens.
• Eating foods high in B vitamins such as whole grains.
• Including a dietary source of iodine such as seaweed for thyroid support.

Nutritional supplements include:

• Omega-3 essential fatty acids, such as flaxseed oil or evening primrose oil to promote hormonal balance. Essential fatty acids are also found in fatty fish like salmon and trout.

• Vitamins A, C, and E, and the minerals zinc and selenium. Zinc and selenium should be taken at different times. A good multivitamin and mineral supplement is also recommended.

That site also notes
“Cysts less than 1.6 in (4 cm) in diameter are considered normal in premenopausal women”, which again means the 4cm cyst I have is not normal.

Furthermore, let me state again that this is at least the second month in a row where my period was longer than normal, caused nausea, and behaved strangely at onset.

The answers.com site has a lot of other good info in their article on ovarian cysts, too. Check it out.

There are other websites, too, but the answers.com and the ovarian-cysts-pcos.com sites are the two best which educated me in a manner I could understand.
I was sorely disappointed when I clicked a link from google, which took me into another ezinearticles.com article, and that article once again led to another link for scam artist advertising. There was a time when I had considered ezinearticles.com a respectable site. I just checked my own website to make sure I don’t have any ezinearticles.com links on it. I’m glad I don’t.

So…what now?

I have some info on what to do to avoid ovarian cysts in the future, but I still don’t know how long mine has been growing for, which might give me an idea as to whether it’s going to continue to grow larger. And I still don’t have the radiologist appointment to ease my fears as to the danger that this cyst poses.

I’d like to also note that as of Monday, strengthening in pain on Tuesday, I am ovulating again, and this time, the pain is sharp on the other (right) side.

Every other day since my last menstrual cycle ended on November 9th, the pain is heavy enough that I must go to bed with a heating pad placed firstly on my lower back, then alternating to front pelvic region. I have NOT had my energy back like I always get after a menstrual cycle. I’ve also been very constipated, and I’m normally not this bad after my cycle ends. Plus, with the detox diet I’m on, I should be freeing up. I am having more movements per day, but it hurts. The answers.com site says “Other symptoms of cysts include late or missed periods, feelings of pressure or weight in the lower abdomen, and constipation and problems urinating due to internal pressure from cysts.”

Just so I have it for future reference, two other websites to check out for ovarian cyst info:
http://www.emedicine.com/emerg/byname/Ovarian-Cysts.htm
http://www.cnn.com/HEALTH/library/DS/00129.html

I’m called my GYN again, and left another message.

Have I mentioned that I feel like I’ll die before I ever get any proper help?

First I am denied access to a radiologist by my current GYN. I *still* have not gotten a call back from that bitch. It’s been a week and a half out of six so far. I believe she should have sent me to a radiologist right then and there. I continue to believe that she will make me wait the full six weeks before referring me.

So I tried going online through my husband’s insurance carrier to find a specialist. I have to register. Ok fine. But no username I picked would please the fucking website. So I tried calling the insurance carrier. After navigating the automated phone tree, I was dumped into a void - no sound - but the call was still connected. After a couple of minutes, I hung up in anger.

Anger.

I am mad. I am mad a lot, lately.

I am convinced the anger is a reaction to the fucking cyst pressing on my fucking ovary and/or uterus and messing with my entire emotional state. Lord knows how long this fucker has been growing… let’s look up how long it takes for one of these things to develop.

…well I started this journal entry at 1:34pm on November 18, 2008, and the research took longer than anticipated. I often look up stuff while journaling. But the baby I care for woke up and now I’m back on the job. More later.

November 19, 2008
I still have not been able to determine how long it takes for a cyst to develop and grow to 4cm in size. All the websites I’ve looked at tell me an ovarian cyst starts at one cycle and may continue to grow, but so far I’ve not found any sort of growth rate discussion.
So I have no idea - the cyst could have started last January for all I know, and grown bigger over time as my stress level increased. Most sites I’ve looked at tell me that stress is a huge factor in the creation of painful ovarian cysts, along with having Endometriosis.

Another thing that made me very angry while researching yesterday:
I did a google keyword search for “ovarian cyst psychological”. Two titles caught my eye: “The Only Proven Cures for Ovarian Cysts” and “Complex Ovarian Cyst - Causes and Risks”. Turns out, when you click through, the first one is at buzzle.com and the second one is at ezinearticles.com, but both lead to another click - directing me to that which both sites are quoting from. As soon as I landed on this website, I knew by the layout that it was an ad pitch. I knew that I was not going to be happy by the time I got to the bottom of the page, but I started reading, anyway, in case I could glean any new education about ovarian cysts.

OF COURSE I WAS WRONG.

The website does a really good job of citing piercingly accurate statements about what is going on with one who has ovarian cysts. This draws one in further, because she can totally identify. I found myself saying “YES! Exactly!” at different points on the page, while still remaining skeptical that the author would give any actual ADVICE away. I was right. The author kept referring to info she found out over time from publicly available documents in libraries and such as SECRETS. At the end of the article was her pitch for an e-book, which costs $39, which would reveal these so-called secrets.

I became enraged.

I have a website called Living With Endometriosis, which is a compilation of publicly available information as I discover it, to help others out there with Endometriosis. Sure, I spend hours and days of my life to research this information for free, but it is firstly hours well spent to educate MYSELF in order to try to heal or treat ME.
There is nobody out there who is going to pay me for researching stuff that will help me. The nice thing to do once I have this information, is not to keep it to myself, but to share it with others.

FOR FREE.

BECAUSE I GOT THE INFORMATION I SHARE FOR FREE.

That’s the splendor of the Internet, folks - sharing information freely.

Not so with this Mary Parker woman, who is obviously a selfish, greedy bitch. Anyone who has a website design like that is selling snake oil.

Called the GYN again today. Left yet another message, this time demanding my radiology appointment be moved up from the 6 weeks she wanted to … ASAP. We’ll see how this goes and whether I have to find a new GYN yet again.

I lost count of how many GYNs I’ve been through for the Endometriosis since actively pursuing a diagnosis and treatment. Let’s think…

Dr. Sharon Knight at UCSF who suggested I only have Dysmenorrhea and refused to schedule a laparoscopy, but who gave me a cervical biopsy without any anasthesia and I had no one to take me home but myself.
Dr. Kent J. Farney in Alameda who suggested I have a STD rather than Endometriosis. I filed a formal complaint against him.
Dr. Marilyn Milkman at UCSF / Mt. Zion who performed my surgery but then dropped me cold once the hormonal therapy wasn’t working and I refused to try further hormonal treatments.
Dr. Lisa Bernard-Pearl at Sutter East Bay Medical who gave up on me after several iterations of different pain meds didn’t work out for me, and is now ignoring my pleas to have the radiology appointment sooner than 6 weeks for a 4cm ovarian cyst in the same ovary that was twisted behind my uterus at time of surgery. Let me state again that 4cm is the threshold for cancer concern.

And those are only the specialists. I shudder to think how many general practice doctors I have had over the years who I tried to get treatment for the Endometriosis from, who gave up on me before even referring me to a GYN specialist.

I have new health insurance through my husband, so now I get to review his health plan’s doctors and specialists. Good times.

I have a gut feeling I’ll get cancer in a predisposed area of my body courtesy the Endometriosis, and die of it before I ever get the help I need. My astrological natal chart strongly supports this gut feeling.