Catching up

Saturday, July 3, 2010 - Woke up at 4 on the scale, ate breakfast w/ coffee. The bleeding resumed - I hit a 6 on the pain scale.

Sunday, July 4, 2010 - Pelvic pain if I was standing - I spent most of the morning sitting and watching the town parade. Tried hula hooping in the afternoon - which set off more pain - about a 4 on the scale. Better by evening but I was quite fatigued.

Monday, July 5, 2010 - Begin teacher training class, which is an hour and ten minutes commute. I had to be up at 5:30am. Ugh. Got about 4-5 hours of sleep. VERY fatigued all day. Light spotting. Rented a hotel room with a classmate to avoid the hour-plus commute to and from school all week.

Tuesday, July 6, 2010 - Already under a lot of stress from the class and homework expectations. I was told upon enrolling months ago that I’d have all summer to get my coursework done. Now I’m being told everything for each class is due within 7 days of each class!!

Wednesday, July 7, 2010 - Students are having emotional breakdowns. I’m near breaking point. Pelvic pain kicking back up again as a result. Came home late Wednesday night.

Today, July 8, 2010 - I took the day off school to go to my first pain management clinic as prescribed by my GYN Dr. Giudice, and the pain mgmt program director, Dr. Thoha Pham. Good thing, too, cuz the pelvic pain is still with me, today. Yesterday and today it’s kicked up to about a 4 on the scale.
The person I saw today is a pain management psychologist. Her name is Dr. Katherine Bowman, and she’s going to teach me to be more disciplined in progressive relaxation, as well as introduce me to mindful meditation. My next appointment with her is July 29th, and she wants to see me every two weeks.

This evening, I have acupuncture, and I will talk to my practitioner about the herbal remedy (discontinuing it again because THREE fingers broke out completely from top to bottom, cracked open, bled, and shed skin for an entire week - started within 24 hours of ingesting the tea), and I will see if it’s possible to see her weekly.

My next appointment with the pain management program director is August 4th - to just check in and see how things are going. I’ve had quite a bit of confusion as to some Dr. Priscilla Abercrombie in the Women’s Health bulding - I thought my GYN wanted me to see her, but no one has been sure if I’m supposed to or not? So I’ll get that sussed out with Dr. Pham.

SO many doctors! Ugh. It is a sad commentary that I actually feel at home and comfortable in the presence of doctors and specialists. :(
And at the same time, the guy in the parking garage today asked me why I come around so much, and I told him I have an autoimmune illness that causes a lot of pain, so I’m on the medical campus a couple times a month. He looked me up and down and said, “You look like happy sunshine to me - not sick!” I beamed back at him and thanked him, and said I could be a full time invalid and patient, or I can live life when I can, and I choose to live life when I can. He smiled big and praised me. :)

For lunch today, I bicycled to pick up Thai food. It was a one mile trip on the bicycle, and now my knees are killing and my entire body is fatigued and feels like lead. This makes me mad at my body. It makes me feel like any exercise I do will always lead to more pain. I feel like I can’t win.

And yet, every single time, I get back up on that bike. I get back out of the house and go out somewhere. I keep fighting. It’s so weird. I get so mad, so frustrated, want to give up, but I can’t. Something just won’t let me. I’m off to do laundry, now. The laundry basket with all the dirty clothes weighs 24.4 lbs (11kg). I note this because I can carry it - normally. We’ll see how it goes today. Probably will be okay. Just noting how I keep getting back up on that horse, is all…one activity to the next, despite the pain.

3:40pm update: Note to self: bell peppers are in the nightshade family. You’ve had digestive problems with bell peppers for many years. It is getting worse. Now you are getting diarrhea after eating bell peppers. These are nightshades and also inflammatory foods and thus on your No Fly List.

ADHERE!

Current treatments

I remembered that which I’d forgotten in last night’s blog entry - herbal tea.

My acupuncturist had prepared an herbal tea for me to take as part of my treatment through her. I had stopped taking it some months back because I suspected it was making my dermatitis worse. One of the ways my food allergies manifests is through atopic dermatitis - specifically on my left thumb. At my last visit with the acupuncturist, I said I wanted to try the tea again. I said this because I’m freaked the hell out over the endometrioma on my left ovary, and I don’t want the sucker to grow any bigger. I’m willing to take on as many new therapies and treatments as possible - like a hammer to the problem - if it will help.

A dermatologist I saw a year or two ago told me it’s impossible for wheat or any food to cause or agitate the dermatitis on my thumb. He said it is caused by my skin reacting to direct touching of detergents and other chemicals. My argument stands to this day that it is ALSO caused by ingesting allergenic food and drink. I fired that guy after the first visit - I’ve had enough of doctors telling me what they think is going on in my body, when I have repeatedly proven them incorrect. Remember the doctor who wrote off my endometriosis entirely and said I just have IBS? Remember the surgeon who said I don’t have endometriosis - that I only have dysmenorrhea, and so she refused to give me a laparoscopy? Remember all the doctors for years who fought against me asking for antibiotics right off the bat because they didn’t believe I can have an immediate sinus infection? Remember the E.R. doctor who said and wrote in my chart that the only cause for my acute pancreatitis at the age of 21 was because I must be an alcoholic? (the nurse told me the pancreatitis was from doctors giving me Cipro for repeat sinus infections every month for a year). Remember the humiliating experience of having to submit to STD testing because the doctor was sure my husband was running around on me, since that’s the ONLY way I can POSSIBLY have gotten cervicitis? She even tried to counsel me right there in the office about my relationship!!!!
So ah, yeah. Sorry for the lashing out. Guess I’m not ready to forgive people/doctors, yet.

Back to my thumb:
Within 24 hours of starting the tea again, my left thumb, which had been doing well, split open and started bleeding again. It has to remain fully bandaged when it does this, and looks like I have a broken thumb or something.
And of course, I’m being stubborn and still drinking the tea, because I’m sitting here thinking, “well maybe it’s the dish soap I used - it contains orange oil and I’m allergic to oranges.”
I’m still drinking the tea because yesterday my cramps were minimal, and I want to try to keep it that way by any means necessary - even at the expense of my poor little left thumb.

My current treatment plan:

  • 1/4 teaspoon endometriosis blend tea in a cup of hot water, 2-3x/day
  • My regimen of vitamins and supplements
  • Acupuncture every 2 weeks (I want to increase this to every week)
  • Massage when I can (I want to increase this to every week)
  • Elimination of refined sugar
  • Elimination of all dairy
  • Elimination of caffeine
  • Resumed elimination of alcohol (I’ve had some to drink every now and then since May 2010 but I’ve stopped again because I don’t like how it makes me feel in the moment anymore)
  • Continued adherence to No Fly List (I’m still failing on stuff like butter, salt and chocolate)
  • Continue with trusted pain medicine cocktail (Tylenol 3 and Ibuprofen)
  • Continue with consciousness to posture, correcting gait, and administering large hip circles and yoga pose.
  • Keep getting on my bicycle as often as possible.

 

And yes, I know, I need to get back into the gym, and I need to ride my bike farther than just running errands or going to/from work.

My current surgeon will not give me another laparoscopy until the pain becomes constant and unbearable. She wants to take a wait and see approach to the endometrioma. She says if she goes in and carves the sucker out, another one will just grow back in its place. She knows I don’t want to remove my ovaries because I don’t want to go on Hormone Replacement Therapy, because synthetic hormones make me suicidal (tried and proven twice!).

Randomness

Today I started one day early. I woke with mild, annoying pelvic cramps, but they faded by late morning.

I was fine til just after 1pm when I was startled to find bright red blood during a trip to the bathroom. Soon after that, mild cramping began again. I took 600mg Ibuprofen to stop the cramps from getting worse, and it worked! Wheee!

Today I was able to accomplish the following:

  • 4 loads of blankets - washed and dried
  • Dishwasher was run
  • Wooden bed desk was washed again (cat peed on it awhile back and I’ve been washing the sucker repeatedly with Nature’s Miracle, Seventh Generation Wipes, Anti-Icky-Poo®, and more wipes - I think I am finally satisfied that it is no longer contaminated. Talk about OCD and germ/filth phobia!)
  • More Montessori homework accomplished
  • Bathtub scrubbed with Borax and hot water
  • Cat puke scrubbed from runner by front door
  • Cat litter exchanged (I accidentally bought the scented version and suffered the chemically sensitive consequences)
  • Back of photo album soaked in Anti-Icky-Poo® - this didn’t work out so well - the back of the album held up perfectly, but the stench and filmy residue are still there. There are two or three photo albums that the cat peed on in recent months. They’ll just have to be replaced.
  • Blankets folded and put away
  • Bed stripped and new sheets/blankets/pillow cases applied

 

That is a whole HELL of A LOT of stuff to be physically fit and able to do on my first day of my period, let me tell you!

Sometimes it just goes like that. I’ve not been doing anything differently - I still ate a lot of chocolate right before my period. I still ate lots of cow and goat cheese. I still drank lots of caffeinated coffee and tea with lots of sugar.

I did see my acupuncturist on June 24th, and on June 26th, I got a massage from my friend who is now a licensed masseuse. Even so, given my decades-long history with this illness, I don’t think acupuncture and massage are what allowed my cramps to be minimal today. Sorry gals. I truly think my illness behaves as it wants to behave, when it wants to.

On June 20, I noticed that I’d become lax in taking my calcium/magnesium pills, as well as my evening primrose oil pills. I noted the constant back and joint pain I was in, and said I’d resume my supplements. Within 48 hours of writing that, I went out and bought a new bottle of calcium/magnesium, and began taking it twice a day with a Vitamin D3 pill for better absorption, and I resumed my evening primrose oil pills along with the Vitamin C and zinc and other supplements I take.
The back and joint pain eased up immediately and profoundly!

As I got closer to menstruation, my mid back began tightening up, as it always does. This puts strain on the lower back, and then it becomes hard to stand up straight, or even sit up straight, for that matter. My massage was great on Saturday and helped loosen the back, but I messed it all up later that night by wearing a corset too tight, and my back went into spasm.
For the last three days since then, my back has alternated between being fine and wanting to lock up from the mid point down, because it’s going into protective mode like it always does every month before I menstruate.

So today the back pain was moderate. I took 600mg of Ibuprofen tonight when I got out of the shower. As I lay there on the newly made bed to cool down after my hot shower, my mid back began to spasm again. It was more of a twitch but a thickening of the muscles, definitely. Not the charlie horse type back pain I was in on Saturday by a long shot, but I could tell my back is definitely out of sorts.
(fun fact about me: hot showers, hot baths, hot tubs, hot pools - it has to be hot - it’s the best thing next to sex).

Oh - today is the first day I was able to get through the day without the following:

  • Coffee
  • Caffeinated tea
  • Raw sugar to sweeten anything
  • Cow or goat cheese

 

It’s not to say I didn’t suffer - it was a difficult day! I did eat two protein bars which contain chocolate liquor (but no sugar!), but I did not directly eat chocolate candies today. The two bars I can stomach the best are Brownie Crunch and White Chocolate Chip, though they do leave a bad aftertaste - probably because of the Malitol. I eat these things not to lose weight but because they’re the only gluten free protein bars that do anything to keep my energy up and stave off hunger for a bit when I’m at work and my only moment to catch a break is during the kids’ lunch hour. I used to eat Belgian Chocolate Organic Food Bars like nobody’s business, but the stores near me stopped selling the chocolate ones. Nowadays I eat almost as many BumbleBars as I do ThinkThin bars, but the BumbleBars don’t keep my energy up or my appetite at bay long enough.

Before I forget, I have been having a lot of strange dreams, lately. I don’t know if it’s the full moon (it was full on Saturday, June 26) or what, but the dreams are crazy.
…or not… I just looked up my dream about having lice the size of crickets in my hair, and this was the translation I got:

To see lice in your dream, signifies frustrations, distress and feelings of guilt. You may also be feeling emotionally or physically unclean. Alternatively, the lice my represent a person, situation, or relationship that you want to distance yourself from. You may be feeling used or taken advantage of.” DreamMoods.com

Fascinating! I was feeling used and taken advantage of!

Alas, I couldn’t get any insight into my dream about my dad’s right leg having to be amputated - the dream site only discusses the meaning behind the dreamer having her own limbs amputated.

*shiver* at least the lice thing is sussed out. When I woke this morning, I decided I would not continue to be angry with the Chi Nei Tsang lady, and I would not continue to feel taken advantage of by her. I put it right by taking matters into my own hands and ordering the supplements I need. I will do my own cleanses from now on if I deem those detox supplements to be of benefit again. This will only be my second time doing the cleanse, so we’ll see how it goes.

Alrighty, I’ve taken a total of 1,200mg Ibuprofen today and the pelvic cramps were quite minimal (I’d say a 2-3 on the pain scale. Right now is the first time all day that the nerves have begun to start their little dance down my inner thighs, so I’m just gonna high-tail it into bed and hope I wake to another minimal pain day tomorrow.

I really really wanna do a Steph’s Mythical Underworld photo shoot to illustrate from my mind’s eye my descent into hell each month. Even though I’m in minimal pain, I’m still at the gates to the Underworld. It’s not pessimism by any means. I know what I mean and that’s all that matters. ;)

Ooo - another thing before I forget. A few things…

Tonight I tried pesto instead of cream sauce and the result is that I have indigestion and I’m burping a lot. What’s in the pesto? It’s Trader Joe’s brand and it contains basil, sunflower oil, potatoes, olive oil, grana padano cheese (pasteurized cow’s milk, salt, rennet (animal), egg proteins), pecorino romano cheese (pasteurized sheep’s milk, salt, rennet (animal)), cashews, salt, pine nuts, lactic acid, garlic.

Well dammit, it could be the potatoes or the egg proteins or the cow’s milk or the sheep’s milk. Since I have a renewed war against me courtesy nightshades, which I thought I outgrew in childhood, I’m going to blame the potatoes and the egg proteins for the indigestion and burping. How ’bout that. Glad I only got the 6oz jar.

Another item to mention - I’m trying to consciously correct my gait, my posturing while standing and sitting, and how I move my body when bending forward for anything. I’m trying to stabilise my core region in the hopes of easing up some of the pelvic pain I suffer. I really should be back in the gym - I haven’t gone in well over a month now.

I thought there was one more thing but it’s gone. Good night!

Not doing well emotionally

First the catchup stuff:

June 20 was the worst pain day for shoulder, back and neck strain, then it became at least bearable for the rest of the week in through today.

June 22 - I was at Costco around 8pm when suddenly I was doubled over with right side stabbing ovarian pain. The intermittent stabbing lasted for over an hour and made me double over several times. It took the breath away from me. I did not medicate though. Also, I had low back pain all day - I felt very stiff.

I’d like to mention that I’ve also been having diarrhea after meals, lately. Even and especially with safe foods. It could be stress from everything. I dunno. I just need to note it, because normally I’m a very constipated person. I wish I could remember when it started, but it’s been going on for at least two weeks - usually one or two episodes a day.

Within the past five days, I have resumed taking two to four calcium/magnesium pills per day. This of course is not helping with the diarrhea.

June 23 - Yesterday - I was still experiencing left and right side ovarian stabby pain. It was still intermittent. My lower back was hurting a lot. It was hard to straighten after sitting or bending. Still having diarrhea. Also, I had my followup appointment with my new GYN (Giudice), and we went over the MRI results.

The appointment was about a half hour and was rushed because my GYN needed to be on a plane to some conference. I was originally scheduled to come in at 11am, then the day before, it was moved to 10am, then to 9am.

She quickly went over the MRI results with me and hit the big point - adenomyosis. She told me that based on the image, there is not any thickening of the inner uterine walls, so that rules out adenomyosis. YAY!

She told me I still have the chocolate cyst on my ovary, and said it is indeed an endometrioma, but she totally acted nonchalant about it, and said we’d continue to just watch it. She said she has no intention of going in and doing surgery just to remove that chocolate cyst, and she doesn’t see why I need another endometriosis surgery, either. She urged me to keep trying physical therapy and alternative health remedies and pain management instead of going the other three routes: hormone therapy, seizure medication, surgery. She referred me to the Osher Center for Integrative Medicine, across the street from her UCSF campus. I went and checked it out - they have a bunch of services I can get where I live and not stress the hell out by being stuck in traffic across the Bay Bridge, and then navigating the crazed lunatic streets of San Francisco. Thanks, I’ll pass on your lovely center.

I got home yesterday afternoon and before scanning my MRI results into the computer, I read over the report.

This is where the emotional wall collapsed.

The GYN didn’t think it necessary to mention that the chocolate cyst on my ovary GREW by .5cm within 36 days. I wasn’t sure how fast or slow endometriomas can grow, so I looked it up and it seems that endometriomas can grow very fast within a short period of time. In that regard, I think .5cm might be considered slow growth.

Fast or slow - it doesn’t matter - the sucker is growing.

I’m not used to dealing with an endometrioma. I have experience with ovarian cysts. This is new territory for me. It’s scary.

The GYN also didn’t find it necessary to tell me that while I don’t have adenomyosis, I DO have several small cysts in the liver, one small cyst in the right kidney, and several cysts covering my cervix.

WELL. I had a brush with high liver enzymes in 2008, and all the Tylenol 3 I consume takes a toll on my liver and kidneys, doesn’t it? I have been experiencing nausea and left flank pain well above the ovary ongoing throughout this month. I have been having diarrhea. I have had ongoing elevated temperature, reaching as high as 99.9°F.
All this time I attributed it to the ovarian cyst, but could it be from the liver cysts?

On top of all that, I have a recent history of cervicitis, and well, my cervix is everted, so why not add some cysts?

I looked it up and found that cysts in the liver and kidneys are not caused by Tylenol or medication, but in fact are often congenital and coincide with autoimmune disease.

Guess who has autoimmune disease?

I called the GYN office back and asked for clarification of the MRI report. Then I called up the Qigong practitioner I thought I wasn’t going to see anymore, and left a message for her. Then I called my local doctor’s office and got an appointment for today.

The GYN office called back after hours, bless their hearts, and the GYN’s assistant told me that the cysts are all nothing to worry about. She told me to follow up with my primary care doctor if I wanted to, though.

Today I did just that, and the primary doctor (Fredian) called up UCSF and spoke with a hepatologist in radiology, who looked at my MRI report, and told my doctor that the cysts in the liver and kidney are nothing to worry about, that they’re so small they won’t cause trouble or show up on a regular ultrasound.

However, Dr. Fredian wanted me to stop referring to the thing on my ovary as an ovarian cyst. She told me it’s much more than that - it has some solidity to it. Despite the common name ‘chocolate cyst’, this is actually a growing MASS on my ovary, and it should be closely watched. She told me the difference between this mass and a ‘regular’ ovarian cyst is that this cannot reabsorb.

This of course did not help my emotional state to make the conscious switch from the idea of a benign cyst to a nefarious growth.

The doctor concluded our appointment, congratulated me on not having adenomyosis, and sent me on my way.

My Qigong practitioner called me back today, and I went over the MRI report with her. She got quiet and pondered her words. She sounded cautious. She said I need to do a cleanse ASAP. She encouraged me to keep seeing the acupuncturist, but to try to go every week. She sounded urgent in addressing my health. This added to my anxiety. I got all apologetic and confessional by saying I hadn’t been eating right for a long time. Her voice still soft, she told me something like, “it’s much more than diet, you can’t feel bad about that.” Again my anxiety. Ugh.

But I came home and resumed my homework - I took another teacher training class last week and I’m still trying to finish the binder from that class this week. Yet another class begins this coming Monday.

Later this evening, I had my first acupuncture visit since about May 6th, and I showed my acupuncturist the MRI report, too. I told her of my fears of the liver and kidney cysts, despite what my GYN and primary care doctor are saying. I have all these symptoms - what if it’s connected?
My acupuncturist says it all IS connected, and that she will continue working on me to keep the blood moving (or as I choose to describe it, to keep flushing the lymphatic system). She’d like to see me every 2 weeks if I can swing it, but says every week is not necessary.
She also seemed to get very quiet after reading my MRI report, and also seemed very careful in choosing her words. I’m just a ball of anxiety over this.
The acupuncturist left the room and I closed my eyes to rest while the needles did their thing. The first visual image I got upon closing my eyes was a rectangular hole in the ground, decorated on the outside edges with a beautiful rectangular autumn leaf arrangement. My eyes welled with tears and I threw open my eyes and stared at the ceiling to try to get ahold of myself.

Funerals! Are you serious? Get a grip, woman!!!

The tears were perhaps a release of pent up emotions, and the acupuncture opening channels.
I’d spent the day matter of fact, blunt, even aggressive at times in demeanor. By early afternoon, I likened myself to Starbuck from the 2004 remake of Battlestar Galactica.

But by the time I was in acupuncture session, I was ready to sob.

I got home and tried to resume my homework, but the tears came. I sat there working at the desk as the tears just streamed down my face. I couldn’t stop them, and I refused to allow myself the time to just cry like a baby, because my husband was home, and I hate crying in front of anyone, even him.

I made myself a horrible vodka drink and sipped at it. It was so bitter, it helped stop the crying, heh.

I told you I wouldn’t be handling things well if the MRI report contained anything other than my usual endo issues.

Making plans before departure to the Underworld

Yesterday and today I’ve been experiencing mild uterine and vaginal cramping. I’ve been “checking” a lot.
I came home from work around 2:30pm with a 99.9°F fever, and it hovered around 99.7 for the rest of the day. I was not able to get a last minute appointment with my acupuncturist.

Despite the low grade fever and cramps, and being a bit sunburned from lunchtime recess at work (I’d forgotten my hat and sunblock again), I still got a burst of energy yesterday evening, as my body went into what I call XXTREME NESTING mode.

My body does this every month right before I bleed. Sometimes I have the energy to act upon the XXTREME NESTING pull, and sometimes I just spin my brain meats and go stir crazy because I’m in too much pain to act on said pull.

Last night I took out recyclables, composting, did a load of laundry, loaded up and ran the dishwasher, got some more grocery shopping done to prepare for being homebound, mailed some bills, and scrubbed the bathtub twice. To my horror, neither the Borax nor the straight vinegar could fully clean the tub. We’d been using novelty Halloween soaps given to us for our wedding, and I’m convinced the soaps contained permanent black dye and wax. Ugh! On top of that, my husband has dyed his hair black twice in the past month and a half, and has not bothered to rinse the residue after his showers. So the tub is to me a horror story. But then, it’s nowhere near my mother’s bathtub. I went to visit my mother a few weeks ago in Michigan - it was my first trip home in six years. She has really let her house go down hill. It made me figuratively and literally sick to be in that house for more than a few minutes. My allergies exploded after 8 minutes in the place.

*shudder*

ANYWAY, after my attempts at cleaning the tub, I was sickened by the vinegar smell and just rinsed the damned tub and called it a night. I took 600mg Advil and went to bed.

I had even more crazy dreams. The dreams this morning entailed not being able to find a cab ride out of Detroit after a night at Cityclub, because the cabbies were taking furlough days on Sundays. We ended up walking all over the city around 4am trying to find a cab before we found out about the furlough issue. Then we ended up at our friend Bronica and Monkey’s place (but in real life, they live in Oakland, CA, not Detroit, MI. I guess it’s similar enough though). Then we took off for food at daylight, and I stopped at a street vendor who was selling broccoli cheese soup in a bread bowl. I convinced her to put the soup in a to-go bowl and put that bowl into the bread bowl so I could enjoy the soup without the gluten, and my husband could share the soup and also eat the glutenous bread. I was also trying to reach a friend or a cousin on my cell phone. I think I was trying to reach my childhood friend Rain, and I told her we were near the intersection of Aricka and Martin Luther King Jr Boulevard.
There is no Aricka street - Aricka is my cousin’s daughter.

Why all these strange dreams?

This morning, I’m registering at 99.4°F temp, and I’m uncomfortably nauseous after one bowl of cereal.

The nausea really pisses me off and usually means I still have an ovarian cyst going on. I’m convinced I’m either going to puke or start bleeding or both before I can get out the door to work. Part of me wants to call in sick, but I’ve already left work early twice this week, and it’s only been a four day work week.

We’ll see what happens next…

It’s starting again

I’m due on Sunday, June 6 but this morning the cramps are setting in, along with low grade nausea and the hormonal whack which causes hypoglycemia-like symptoms.

The night before last, I took a Tylenol 3 before bed.

Last night, I took 600mg Advil before bed.

For the last two nights, I’ve had really effing strange dreams. Last night’s dream involved stuff coming out of my vagina the consistency of white poster paint, and getting all over my clothes. NASTY! WTF!!!

I’ve been seriously depressed since returning home from Michigan - still unable to fully process my experiences there.

And I have forgotten to make another appointment with my acupuncturist. I wonder if she still has an opening for tonight.

We’ll see if I can even make it in to work today, and for how long.

The Waiting Game (or, How Ovarian Cysts Mess With One’s Menstrual Cycle)

George is two days late. He was due Sunday. Because I always count the due date as Day 1, I’m going to say he’s actually three days late.

Last month, I was diagnosed with a .9cm chocolate cyst (endometrioma) on the right ovary.

A month before that, I was sure I’d had an ovarian cyst which ruptured.

Either that cyst did not rupture and continued to grow from March to April, and then from April to May, or I’ve developed a new ovarian cyst since April.

In either case, my reality is that I do have an ovarian cyst, which I can tell you about with my own authority and experience, and I can back it up with the ultrasound I had on April 21.

Before March 2010, the last ovarian cyst that I really felt and had complications with was in November/December, 2008. I suspected an ovarian cyst in October 2009, but I didn’t follow up on it in my journal, so I dunno if I had a cyst or not.

So my own authority and experience this time around matches up with my symptoms in November/December 2008 as well as my symptoms in March, 2010: during the current cycle, I was supposed to begin menstruating on Sunday, May 9, but george is nowhere to be seen. Instead, I began experiencing stabby right side ovarian pain on April 30, which has lasted to the present day.

Going back through my calender, I noted:

Monday, May 3 - left side ovarian pain started.

Tuesday, May 4, - sharp low uterine, upper vaginal pain - intermittent. Heavy fatigue throughout the day. Full uterine and ovarian (both sides) pain at a dull constant level throughout the day, rising to 4 at times on the pain scale. Took 400mg Ibuprofen at 8pm, took 400mg more at 9:30pm.

Wednesday, May 5 - Fatigue, achey, intermittent uterine pain

Thursday, May 6 - sharp pelvic pain - stabbing left ovarian, sharp intermittent low uterine pain. Uterine pain became constant by 2pm. Large hip circles earlier that morning to manage the pain were not successful.

Friday, May 7 - Constant low uterine cramps. Highly emotional all day, turning to high irritability by nightfall. Had food reaction - I suspect either the ’smoked’ cheddar/mozz cheese or the marinara sauce on my gluten-free pizza.

Saturday, May 8 - Constant low grade uterine and ovarian pain. On ibu all day - consumed over 2,000mg. Still quite irritable.

Sunday, May 9 - George is a no-show. Moderate low back pain, on ibuprofen again but only took 800mg total and toughed out the pain. intermittent continued uterine and ovarian cramps.

Monday, May 10 - I didn’t record anything that day because I was out of the house running lots of errands after work til nearly bedtime to prepare for upcoming Michigan trip.

Tuesday (today) May 11 - Pinching/stabbing right side ovarian pain. Took 600mg ibu first thing in the morning, 600mg ibu around 2pm. Heavy fatigue all day. Mild to moderate intermittent uterine and right side only ovarian pain all day.

(side note: I’ve tried my gluten-free pizzas several times since May 7 and the only constant is the tomato sauce - all other ingredients have been changed up - so I bet my tomato allergy has caught up with me again after being dormant for years…just like my citrus allergy caught up with me again last October).

(another side note: I’ve only been to the gym twice this month, and I bicycled five times this month, with the last time being a week ago - May 4)

The ovarian pain, the low back pain, the fatigue - all of that is part of my usual pre-menstrual pain, but I also had vaginal pain and really tender/painful breasts and nipples this cycle, and THAT for me smacks of ovarian cyst.
Given that I knew I had a cyst in March, and a cyst was found via ultrasound in April, it’s pretty much confirmed for me that the reason why my period is late is that the cyst is still growing and causing problems.
I think the longest my period has been late during an ovarian cyst flare has been three days. So george should therefore be here by tonight or tomorrow.

Knowing that helps me not to freak out so much, cuz by last night I was freaking out in the most irrational ways:

  • OMG what did my acupuncturist do to me last Thursday - she did so good that not only do I not have massive pain, I am not bleeding at all!

  • OMG I’M PREGNANT!
  • OMG MY WEEKEND IN MICHIGAN IS RUINED - I’LL BE BLEEDING AND IN HORRIBLE PAIN ON THE PLANE AND IN MICHIGAN DURING THE PLANNED PARTIES AND CLUB NIGHTS!
  • OMG IS THIS WHAT ADENOMYOSIS DOES?
  • OMG I HAVE CANCER!
  • OMG I HAVE NO IDEA WHAT IS WRONG WITH ME!

 
I’m much calmer today after reading up on ovarian cysts again, and going back through my journal entries on my previous cysts. I’m falling more into acceptance with what is happening, and adopting the ‘This too shall pass’ mentality.
I’m still pissed off that my weekend plans are likely ruined, but the truth is that these things can easily be rescheduled before I fly back to California.

I’ve never flown on an airplane during a my period, and my period is ALWAYS a nightmare of pain, so this should be interesting. :(

Pain Management doctor

Today I had my referral appointment with the pain management doctor.

I gave a rundown of my symptoms to a nurse, went over most of my medication history (what I could recall off the top of my head, cuz I didn’t have notes), talked about my surgery, and noted my own pain management techniques.

The nurse got my blood pressure and pulse (both fine), then stepped out to talk to the doctor.

Then O Ren Ishii came in and described in fast pace everything I need to do for pain management, and she thinks I’m a great candidate for pain management over continued medications.

Ok so she’s not really O Ren Ishii, but she did remind me of her and I did quite enjoy my visuals of her lopping heads of former doctors who refused to believe my pain. >:)

Her actual name is Dr. Pham, and she gave me the official referral to the pain managment shrink that Dr. Giudice wants me to see. Dr. Pham also wants me to try Neurontin as pain-management medication. She said if that doesn’t work, she wants me to look into Cymbalta, which is an antidepressant but works really well for pain management she says, and beyond that, it would be nerve blocks.

I was struck by this, and told her I’d read Dr. Ian Fraser’s lecture about unsheathed myelin nerve clusters being implicated in endometriosis. She looked from me to her nurse assistant and back to me again, smiled a little and said ‘yes’, and seemed awestruck that I’d possess such knowledge. I told her I was grateful that she and Dr. Giudice are on board with Dr. Fraser’s work.

However, I vetoed the nerve block idea, because they are temporary and it’s hard to get an appointment centered around the exact time I’ll be in a lot of pain, in order to get the nerve block. And it’s expensive - it would just milk the insurance. I told Dr. Pham that it would be a great idea if I were in pain 24-7 though. She respected and seemed to agree with me.

I told Dr. Pham that I need to research the neurontin and the cymbalta before getting a prescription from her, and she told me that was fine. I expressed reservations, and noted that I’m super sensitive to medications. We went over my previous go at antidepressants back in 2000-2002 and how I could only take up to 6mg in liquid form of antidepressants, because higher doses than that gave me full body joint pain to the point where I had to undergo months of physical therapy, and felt like I was experiencing growing pains all over again. I talked about how I became schizophrenic on Zoloft after 11 days, and that on Paxil, I lost the ability to feel any emotion except inner restlessness that made it feel like termites in my brain, and exacerbated suicidal ideation to the point that I created a plan to kill myself. So I went to the doctor to get off Paxil, was almost locked up, had to convince the doctor to just switch my meds, and I got on Celexa.
I plateaued on Celexa after 6 months, then fired psychiatrists and antidepressants altogether.

Of course, the doctor nodded and continued to insist I at least give the neurontin and cymbalta a try.

Of course.

Because doctors have always known best for me. I mean, burning off endo lesions during my laparoscopy totally helped with my pain, right? And putting me on Yasmin didn’t make me suicidal, and oh yeah, Iburpofen alone has always done the trick in fully managing the pain, right? Because doctors know best.

When I got home, I researched neurontin, and the side effects are scary as all get-out. I searched the Daily Strength forum and found displeasing info there, and sought out info on LiveJournal.

I googled for info on neurontin and it’s other name - gabapentin, and found the following:

Anticonvulsant drugs tied to increased risk of suicide

Neurontin (Gabapentin) - Adverse Event Reports - Death - Suicidal Ideation

Common Migraine, Epilepsy Drugs Linked to Suicide Risk

Certain Anticonvulsants Linked to Increased Risk for Suicide, Violent Death

Yeah uh… how ’bout no.

Thankful

George has not shown up yet today. Because of his tardiness, I was able to get in another full day of work. :)

Upon waking, I did have some pain, and was sure that by the time I was to leave for work, I’d be in full blown pain.

Instead, I was feeling annoyingly bloated, having low level cramps, and feeling like I might burst into tears at any moment. I went to work, because it was too late to arrange for a substitute teacher. I went in thinking I’d have to turn right back around within an hour.

While waiting for the parents to begin the drive-in drop-off at the school, I stood in silence, taking in the nice sunny morning. It was mostly cloudy but I could still see enough of the blue sky and feel the sun on my face. I stared at the trees in the lots surrounding the school, and I just wanted to cry my eyes out, and I could not explain to myself just why. Hello, PMS.

Although I think part of it is that I expect routine from my illness, and when it deviates, it messes with my head. When the pain is absent for too many days, I actually get hopeful - I envision my illness just vanishing, and I wonder how long it would take for me to really believe it and TRUST being pain-free. Not being bedridden today when I thought I would be gave me some hope that perhaps this cycle won’t be as harsh, and maybe it won’t even be painful at all. But 24 years of cyclical endometriosis pain seems to laugh at that notion.

Just after 9am, the pain was enough that I took what Ibuprofen I had on me - 400mg gelcaps - and waited for the “real pain” to arrive.

I was super tired for most of the day, but the pain never got above a 4 on the scale. :)

All day I have had fierce sugar cravings, and I’ve had to keep my attitude and my anxiety in check all day, because of the PMS. I swear, if I’m not experiencing pain before my period, I’m experiencing really bad PMS! I will take that over pain though!

After work, I went to my acupuncturist appointment. I was super tired, forgetful, and dazed, but not in pain! I got treatment points in the feet, legs, pelvis, left wrist, hands and ears, then after that treatment, I received treatment points in the lower back, since that’s where a lot of my pain has actually been in the past week.

When I got home, I was still feeling tired, but not as tired as I’d been before the acupuncture appointment. With a little coaxing, I convinced myself to get some housework done with this extra time on my hands.

Because george was late, I was able to work an entire shift today, go to my acupuncture appointment, fold and put away five blankets and a slew of clean towels, unload the dishwasher and load it back up again, and wash some stuff that can’t go into the dishwasher. I also cooked up some gluten-free, yeast-free pizzas for me and my husband.

All that, on a day I was supposed to be bedridden. :)

So despite my crazy emotions, I really am thankful to have had one more day without george.

Last gasp

Hopefully today was what my husband calls The Last Gasp - it’s when the pain and bleeding had gone away overnight, but returns with a vengeance the next day. That day was today.

The bleeding had gone away and hadn’t returned after my walk last night, even though the pain had returned a bit, and my legs were wobbly. I went to bed and slept soundly.

I woke this morning to horrible low back pain - enough to make me whimper. I got up around 8:30am and puttered around the house, doing slow stretches to try to loosen everything up.

I was dismayed to find that Chile had a 8.8 earthquake, which set off tsunami advisories and warnings throughout the Pacific region. While I was searching for live streaming info on the web about my region, as well as internet friends in Hawaii, my legs began to feel weak.

I got up off the couch and began massaging my lower back/kidneys. I did some more slow stretches. Then I needed to go to the bathroom. I had a bowel movement, which thankfully wasn’t too constipated.

I went to the kitchen and microwaved some leftover pancakes for breakfast. I poured some YoBaby apple yoghurt on top of the pancakes. I made some herbal tea from my acupuncturist, but I never got to drink it.

While I was eating the pancakes, the pain and bleeding resumed. All night and all morning, I had been dry - no bleeding, and no pelvic pain. I stood up and began doing slow large hip circles. I began breathing exercises.

The pain ramped up.

I started shoveling the food into my mouth so that I could take my medication. By the time I finished my food and was shoving a whole Tylenol 3 into my mouth, I was shaking from the pain. That’s about the time my husband woke up. I was pacing around the house and talking to him with a high pitch to my voice, teeth clenched. Within minutes, I was on my back on the couch, instructing my husband to help me with pressure points.
We couldn’t find the right points in the inner knees, so he tried my ankles, the bottom of my feet, and I held the points on my ears. The pressure seemed to help when my husband held the bottom of my feet. The points in my ears helped, too, but these didn’t help for very long. I told my husband I felt nauseous, but I needed more Tylenol 3. I took a half a pill on top of the whole pill I’d recently consumed.

The pain was so bad, but when I cried, tears didn’t come out. I went and sat on the toilet, and began moaning through gritted teeth. My eyes went vacant. At this point, I realised I’d hit a 9 on the pain scale.

I came back from the bathroom and tried to engage my husband in conversation to keep me from going mad from the pain. We talked about the tsunami warnings and other stuff. I yelped in pain pretty often, but carried on conversation so I wouldn’t go crazy. I had the heating pads on me, but I couldn’t get comfortable on the couch. I leaned over the arm of the couch with the heating pads on my lower back, until my calves felt like they were going to give out from the standing.

Finally, the drugs kicked in, and I became very tired. I settled onto the couch and my husband sat with me until I fell asleep. Then he went to work on stuff for his band, and eventually had to go to the studio to confer with the rest of the band on the tracks they’ve recorded.

I have spent the day continually drugged on Tylenol 3. The bleeding subsided again around 7pm, and so I decided to take a hot epsom salt bath. But first, I had to scrub out the tub, and I was still in pain, and my husband still wasn’t home.

This is a problem. But yet, I fought through the pain and scrubbed the damned tub, the shower doors and the shower walls, still streaked with husband’s hair dye. Once it was all clean, I was able to take a nice half-hour bath.

After the bath, the bleeding did not ramp up again, thankfully. I’m hoping today was the last of the cycle.

The pain has been really severe this cycle. Two things happened:
#1: Last Sunday night, I took a Monistat-1 treatment for a yeast infection caused by taking antibiotics for the sinus infection. By Monday morning my inner labia had swelled up really badly, and everything in that area burned. I showered and saw a doctor who examined me externally and said I’d have to ride it out. He suggested I soak in the tub. I came home that afternoon and told my husband I needed to soak in the tub, but did not have the energy to do a massive scrubbing of said tub.
Uh, apparently neither did he, and he didn’t care, because the tub did not get scrubbed. I did not ask him directly, “could you be a dear and scrub the tub for me?” - I just assumed he’d be a gent and see that I needed help and do this for me. But after nine years with this man, I should know better than that. I have to ask. Asking hurts my pride. It’s a cycle I need to break out of.

Late Monday afternoon, I began bleeding. At first I thought it was my period, but I had no cramps, and the bleeding and debris was light in flow and colour.

#2: I began taking the specially prepared tea from my acupuncturist - 1tsp up to three times a day. I saw her last Thursday, and she did treatment mainly for my sinus infection, but had also done some cupping on my lower back, which I’m convinced brought on some minor cramping Thursday night and into Friday.

Anyway, the light bleeding and debris lasted until Wednesday, when my actual period, complete with heavy bleeding, clotting and cramping started. I continued taking the tea.

I noticed that the pain this time around feels like a bladder infection. I stopped taking the tea last night and took 600mg ibuprofen on top of the Tylenol 3, and the bladder pain eased.

I resumed the tea this afternoon AFTER I had gone through a really bad spell of cramps this morning, and the bladder pain resumed. Could it be the cattail in the tea?

I cannot say for sure if it’s the tea or lingering side effects/damage from the Monistat.

I still feel gutted. I’m still getting sharp pelvic and bladder pains. I’m worried the Monistat did some damage. I’ll need to hire a new gynecologist this week, because Dr. Lisa Bernard-Pearl just retired from the practice this month, and I’ve not been able to see a new gyn, yet. I’ll just phone up anyone in that office and ask to be seen ASAP.

I keep feeling like today is Sunday. I’m so glad I have another day to recover before the work week begins again.

So far this weekend I missed a mostly sunny day today and two parties tonight because of the endometriosis.

Sour grapes - I didn’t wanna go out, anyway.