I Will Not Suffer In Silence

I don’t feel like I fully conveyed my sense of frustration and panic over my highly regular cycle throwing me for this much of a loop.

When my period is even a day late, I freak out, since it’s a trigger for me. I’ve been pregnant twice in my life, with the first time being at age 18. I have never gotten over the trauma from that first unwanted pregnancy - I always feel like I’ll be in big trouble, like my life will be over, like I’ve really screwed up this time, etc. The weight of this stress is enough to throw my shoulders and back out. I’m nearly to that point today, and I took a mental health day off work because of it.

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 (catch it here and here), but it’s so hard to LEARN the lesson and just be okay with whatever my cycle is doing - just roll with it.

I get so caught up in knowing where my uptime and downtime is, that if I end up with a little more uptime than expected, I freak out over it. I feel like something is seriously wrong. It’s like I’ve told myself I’m not allowed to go over 25 days between menstrual cycles - that if I do, it means I’ve messed up big time (see above-mentioned trigger).

Now, the last time my menstrual cycle did a huge change on me was 13 years ago, probably as I was settling in from a major life change - moving across country.

Now I’m edging up on the age of menopause, so I should expect that my menstrual cycle is going to start acting funny, and that this will last for years until I stop menstruating altogether.

But it’s not reassuring. I know I have an ovarian cyst, that I’m prone to the cysts, and that if the cysts grows bigger than 4cm, I have to consider cancer testing.

I have an MRI scheduled in two weeks, but I’m not reassured. I called the doctor but they have no openings today or tomorrow, the soonest I can get the MRI is next week, but I’ll be in Michigan.

So it’s the waiting game. I’m in Limbo, that special hell where I wait for either my period to show up or positive pregnancy test or the MRI to confirm Something Bad™.

This morning, I went out back of the house and tried a bit of tetris in the storage unit. It went well, but the exertion left me nauseous, dizzy, weak/trembling. Between that and the fact that my vaginal mucus FINALLY turned slightly pinkish this morning, that’s all I have to go on that george will be here soon.

Normally it’s nothing for me to lift and move a few things in the storage unit…but it’s 30 minutes later and I’m still shakey and nauseous. The nausea is from the damned ovarian cyst.

My cats caught sight of the cat carrier and luggage and made their way quickly to the closet. Now I keep hearing a scratching sound, but I don’t think it’s the cats. At least, it wasn’t when I last checked. Someone next door outside or someone upstairs from me is sweeping or brushing at something, I guess. But it’s driving me nuts because I’m already in a panic state. I turned on Internet radio to drown the brain weasels and the scratching noise. It’s helping a little.

In the meantime, the nerves have flared up in my legs - I’m getting nerve pain down my inner thighs and tops of my legs all the way to my calves. Usually the pain only goes to my knees. The radiating nerve pain is another sign of george.

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. :(

Today I saw Dr. Linda Giudice at UCSF - the same hospital where I had my diagnostic laparoscopy three years ago.

She is every bit the rock star that the World Endometriosis Foundation and endometriosis.org brag her to be. :)

A friend of mine says she told me awhile ago I should go see this doctor. I believe her, and I am kicking myself for not forwarding the email convo with her to a text document I keep with all my endometriosis files, or forwarding the mail to my Living With Endometriosis email account. I really have to get better at sending copies of convos in other sources to myself in an endo-only location where I’ll be sure to see it again and follow up. Part of the issue too is that Dr. Giudice is in San Francisco, and I was certain I could find a good reproductive endocrinologist/surgeon in the East Bay. My stubbornness cost me over a year, and continued let-downs via other doctors.

Learn and move on…

I guess I can say I can’t be curious about those other doctors now, eh?

So, the details of the visit:

I was weighed, measured, BP and pulse taken, and an intake nurse met with me to begin my medical history. Dr. Giudice walked in and said normally she would let the intake nurse do all this but I’d been made to wait 10 minutes already, so she was going to spare me that. I lit up like a light when she walked in and enthusiastically smiled and shook her hand. I couldn’t contain my excitement, hee hee.

We went over my history and Dr. Giudice was totally on the ball, receptive to the medical paperwork I had to offer, asking the basic questions about where my pain is, what it feels like, when the pain happens during each cycle, and all that. She asked what I’d tried for the pain, if I’d try further hormonal treatments, if I’d try the Mirena IUD (no to ANY and ALL further hormonal treatments). She didn’t put up any arguments to my ‘no’ answers.

She had a look at my surgery report and said it looked like stage I endometriosis. It felt like a scene in a movie where a record player needle is suddenly ripped from the playing record, heh, and I told the doctor that per my follow-up interview with my surgeon (and handed her the hardcopy of said interview, as well as color photos of the surgery), I think I really am at moderate or stage III endometriosis.

Dr. Giudice had a look at the interview notes and the color photos and exclaimed her thanks to me - that those made the picture A LOT more clear - and she agreed, yes, I do have moderate endo.

Now that I think about it , endo is endo, if I have it, it shouldn’t matter the stage, but for some reason there in the office, I really needed her to really take a look at everything I had. I dunno, would I feel like I’d been telling lies if I was at a different stage than reality dictated? Why does it matter the stage if the pain itself is real?? Why does it matter the stage if two different surgeons can’t agree on what stage it is, but can agree that it is endometriosis?
I mean, seriously. But there I was, afraid I might not be helped perhaps, if I only had stage I endo.

I told Dr. Giudice how I’d met with Dr. Streitfeld and he said based upon my history, my surgery report and the fact that I did not have pain relief from the endo, that I might have adenomyosis. She said it was a possibility, indeed (adenomyosis is where some inner uterine lining is found within the middle layer - the muscular uterine wall. The inner lining has different cells than the middle or muscular layer, and should therefore not be in the middle layer at all. Rogue endometrial growth in this middle layer is very very hard to treat, so said Dr. Streitfeld and Dr. Giudice. In fact, Dr. Streitfeld had said that the only way to cure someone of adenomyosis is to take the uterus out).

Dr. Giudice also told me that based on me telling her that I get rectal bleeding about a week before my period each month, and that I’m always constipated and bowel movements are very painful during menstruation, that it’s quite possible that I have “rectal-vaginal involvement” where the endometriosis is concerned. She says it’s unfortunately very easy to miss during a laparoscopy, and that I should get an MRI.

Dr. Giudice asked if I had pain radiating down my legs, and if I am painfully sensitive to the touch anywhere else on my body. I told her how I get pain radiating down my tops of my legs and inner thighs down to my knees every month up to a week before menses, and said I am only sensitive to touch on my legs in general, but I am sure that with the legs, it’s due to overloaded liver and kidneys.

Dr. Giudice began telling me about nerve inflammation, and illustrated how endometriosis brings its own nerve bundles with it and attaches to existing nerve clusters belonging to other organs, and that’s why we get such radiating pain. She said that even if there is no actual endometriosis on a particular part of the body, the fact that an endo nerve sac had joined up with an existing nerve line - that’s what is triggering the pain on down the line.

My jaw dropped. I looked at the nerve clusters she was drawing for me, and exclaimed something like, “That’s exactly what Dr. Ian Fraser talked about a year ago, and there was no publicity on his findings! I JUST saw this for the first time recently!”

Dr. Giudice looked surprised, then smiled, and said she got to meet with Dr. Fraser in the past three months.

OH MY GOD. THAT IS SO AWESOME! So they’re on the same page! She agrees with his findings or is at least intrigued by his findings and is willing to cite his work to her patients. There is hope. I told her that I’d written to him, that he’d apologised to me, saying ‘we’re not there yet’ - i.e. he has a lot of work ahead of him. I told Dr. Giudice that I told Dr. Fraser I’ll wait and I’m happy to give him all the P.R. he needs. She smiled and even giggled at that.

We also discussed the ideas that some doctors are pushing - neuropathic pain and muscle memory. “Kind of like phantom limb”, said Dr. Giudice. She wanted to know how I felt about seeing a physical therapist and also trying out antidepressants to try to reprogram the brain from continually saying, “OMGWTF I’M IN PAIN OW MAKE IT STOP”.

I told her I’m on board with the physical therapy and the idea of muscle memory. I told her how I try to keep things loose through the wide hip circle belly dance move, and that a masseuse I had in the past also knows a lot from experience and training about muscle memory vs. endometriosis.

But the antidepressants, I told her, I’m not so sure about pursuing that right now. She nodded and said it’s not really her area, anyway - she just wanted to put it out there.

We then went to the exam room - I consented to a transvaginal ultrasound and a pelvic exam, and mentioned I’d been having right side ovarian pain for at least the last two menstrual cycles, and was worried about another ovarian cyst.

Dr. Giudice let me watch the monitor and explained everything to me as she worked. Her speech cadence and body language informed me that my uterus does not look normal to her, and she described it verbally and on the ultrasound report as “globular”.
Fascinating.
I had warned her before putting the scope in me that I have a tilted uterus and to go slow, and she did the best she could. She confirmed for me that my uterus is tilted backward a bit (retroverted), and said that with the uterus being “globular” and the cervix not being where it is supposed to be, that it could account for some of my pain, and more importantly, it is commonly seen in women with adenomyosis. :(

Dr. Giudice moved on to my ovaries, starting with the right side, and immediately found a black spot. She marked it on the screen and said it appears to be a 0.9cm endometrioma, a.k.a. chocolate cyst on the ovary.

She spotted two follicles on the right ovary; one being the endometrioma, and moved to the left ovary. The left ovary contains four follicles and no cysts or endometriomas. Dr. Giudice looked puzzled and asked me my age. When I told her I am 38, her face relaxed and she said it made sense, then. She thought I was younger, and now it made sense - she said that with age, women produce less eggs, and she told me she is seeing a “diminished ovarian follicle reserve”. She was quick to add, “I’m not saying you’re going into menopause tomorrow…” and I told her that’s okay, it may sound aweful but I’m really looking forward to menopause in the hopes that it burns the endometriosis out
(during menopause, there is a severe lack of estrogen being produced by the body. Endometriosis needs estrogen to thrive and grow).
Dr. Giudice nodded emphatically at my hopes.

She then said she’d like to do a rectal exam, because of what we’d talked about earlier with the whole possible rectal-vaginal endo issue. I winced and groaned. My legs stiffened even tighter right there in the stirrups. It had already been painful enough to get the transvaginal ultrasound and the pelvic exam, because I’m so tight, small and tender in there to begin with. I warned the doctor that I have painful hemorrhoids and to please be as gentle as possible. I consented to the rectal exam because I know why she needs it, and I have known for years that I have rectal-vaginal involvement, even if the first surgery missed it. And eight months ago, Dr. Kate O’Hanlan also insisted upon a rectal exam for the very same reason. Of course, Dr. Giudice asked me FIRST and didn’t proceed until I gave her permission.

Sadly, the end result was the same as last time - I got hot, shaky, weak, quite nauseous, and totally emotionally rattled.

Dr. Giudice finished up her exam, told me an MRI was definitely warranted, and took off her gloves to come stand by my side and hold my hand because she saw me gripping my fists and clenching my teeth. A tear spilled from my left eye. I began babbling about how I’ve had these stupid hemorrhoids since college, when there was a lot going on in my life; my brother was facing prison time, I got knocked up and chose not to keep it and was told by my doctor I’d probably miscarry anyway…plus a full college load to deal with. Dr. G reminded me to breathe, and asked if I’d ever tried psychiatric counseling. I told her oh yes, a few times, now. I told her I’d seek it again.

The doctor and her assistant left me alone in the room to take as long as I needed to collect myself. A nurse came in to ask if I needed a pad, a drink of water, or anything. Once everyone left, I began sobbing. I cried and cried. I shook like a leaf.

I wondered, what was I upset about, aside from a painful rectal exam? Is that all it took to break me?

Or is it the fact that I now have to consider adenomyosis and rectal-vaginal endometriosis on top of my original endo diagnosis? Or that rectal exams seem to be part of the package, now? Or that even Dr. G admits to not being able to really do much for me, but she’s trying and she cares? Or am I having a problem knowing consciously that I’m getting old and that due to decreased egg output, menopause will start in a few years? Or, hmmm, am I really beginning to wonder if I should *gasp* have children before my well dries up?!
Seriously, I am a confused bundle of emotions right now. Not being able to pin exactly what was making me THAT upset, especially when I didn’t sob *during* my last rectal exam, made it all the more necessary that I just shrug and go with it, and let the tears pour forth.

I needed ten or more minutes on top of that in the waiting room to collect myself. The right side ovarian pain had set in again, and I took 600mg Ibuprofen and washed it down with the nice warm water that the nurse had given me. Warm liquids good, cold liquids bad where pelvic pain is concerned.

I called my husband the moment I got back to my car, to tell him how it all went.

I called work the moment I got back into my town at 1pm, and took the rest of the day off.

And it wasn’t until 6pm tonight that I was able to start journaling about my doctor’s visit.

And only now, at 10:55pm, I am finally able to finish my journal about my experience today.

*big sigh*

Hopefully I’ll be able to sleep tonight.

I am immensely, immensely happy to have finally sought out Dr. Giudice. She was there the whole time - referred by a friend even - and I finally found my way to her.

I have a lead for a physical therapist (my last GYN gave me some leads but they didn’t work out - scheduling/timing problems I think), and I have a script to get an expensive MRI, and all of this has to be done in the next two months, during which time I’m also shelling out money for a visit back to Michigan (it’s been six years since I’ve been home), and also shelling out money for school (to get my Montessori head teacher degree).

But it has to happen this way.

And after that, probably another surgery. We’ll see.

I have to stay brave. I still have lots of options to try out. I haven’t exercised everything, yet.

I’m kinda terrified of coming to the end of all available options, including menopause, with no pain relief. The idea of having gone through 24 years and having 20+ years to go with this pain if nothing continues to work - yeah I think that’s the crux of my emotions right there.

So here we are, two days before my next period - a.k.a. my next bedridden vacuum of lost time, lost fun, lost sunny warm days. It’s supposed to be in the 70s for the next several days!

But let’s go back a few days to get caught up again. I last wrote on Sunday. I was able to be intimate with my husband that morning! Amazing, after the really bad pain I was in the day before. I hung out with my husband Sunday afternoon, since he skipped band practice. It was lovely, warm and sunny outside.

Monday night, my husband and I went out dancing! We’d been looking forward to this, as it was the 17-year anniversary of our favourite goth club. It was packed and the music was good. I danced until every bone in my body ached, which didn’t take very long, and then I danced some more. What a workout!
It was about an hour into our night out when the right side ovarian stabby pain returned. I thought the night would be over, but I pushed through it. The pain was intermittent, though. Just a bit of tightening and stabbing for a few minutes every now and then. We got home sometime after 3am. I showered and went to bed, and I was up for work by 7am, because I’m insane. I only do this once a year, trust me.

Yesterday at work was painful in the sense of sleep deprivation, but I had no pelvic pain at all. Of course, I’m in all kinds of joint pain, especially my knees. I am officially diagnosed with osteoarthritis and chondromalacia patella (as a child, I was not allowed to perform certain gym activities, including any where I had to sit on my knees or bend the knees back for too long a time). The joint pain and knee pain is nothing compared to an ovarian cyst, and an ovarian cyst is similar but still not as bad as endometriosis.

There have been discussions on LiveJournal (see the comments to this post). I want to keep the discussion going, because we endo patients really do have a skewed sense of pain compared to the ‘normal’ population.

When I got home from work just before 4pm, I went to bed and didn’t get up until 9pm. I watched the latest episode of LOST with my husband at our neighbor’s house (cuz we don’t have cable, satellite or regular TV hookup by choice), and came back home and crawled right back into bed. I read for a bit before falling asleep again.

Woke up this morning in a lot of joint pain, with the added pelvic pain again. I had taken a Tylenol 3 before bed, and this morning I’m already on 600mg ibuprofen and rocking back and forth to get limber for the day. I’m doing large hip circles to loosen up the pelvic region. The pelvic pain is not ovarian - it is uterine - because I’m due to menstruate in the next 48 hours.

We’ll see how it all turns out…

Yesterday was the worst pain day, yet. I took a total of 2 Tylenol 3 plus 1,400mg Ibuprofen to get through the day yesterday. The pain was stabby and sharp at times, continuous and gnawing all of the time. I would estimate the pain was at a 7 on the pain scale all day yesterday. I had moments where it spiked to 8 on the scale. I had low grade nausea for much of the day.

Still, not wanting to have my warm sunny weekend taken away from me, I ventured out of the house to go to the post office and to the bank. Within the first 200 feet, I was grunting from the pain. Every single step was painful, but I pushed on to my car and drove to the errands I had to do. On a day like this, I should be riding the half mile to the post office and the bank, but I was in such pain that I had to drive it. When I came home, I was near tears from the pain, and that’s when I began the serious medicating for the day.

My husband drove us wherever we needed to go for the rest of the day. I did NOT want to stay indoors and lose another sunny day - I lose too many per year from chronic pelvic pain.

We went to a local dispensary to see what free services I could get under my Prop 215 card, since the cannabis is not working to lessen the pain. They have Reiki, acupuncture, hypnotherapy, and other stuff, but most of the classes are booked up, so I had to get on the waiting lists.

I think it was while we were on our way to the dispensary I suddenly realised that all this pain is likely due to an ovarian cyst, because the pain has been so focused on the right lower quadrant of my pelvic region, and has been stabby, and I had been nauseated all day.

Then we went on to our favourite coffee stop (Peerless - as opposed to Julie’s our favourite coffee and tea house - where we would actually be able to sit and stay awhile), then we went to the AT&T store to finally activate the iPhone my husband gave me so long ago. From there we went to Ikea to look for a bed frame but that was a bust. While we were at Ikea, I saw so many people in wheelchairs, and I REALLY wanted mine at that moment. Other pedestrians in the store were impatient by how slow I was walking, and would brush past me quickly. This made me want to cry, or worse, shout at them that I’m in a lot of pain and to leave me the hell alone.

I have a wheelchair but I refused to bring it with me yesterday because I’m still too proud to use it unless I’m in crying pain. Of course, when I’m in crying pain, I don’t actually leave the house, heh…so I have GOT to learn to not be embarrassed to use the wheelchair when I need it. And yesterday I really needed it.

After Ikea, we went to Endgame, then came back home, ate some dinner, and then went to a friend’s house for impromptu game night. I sat in the most comfy chair I could (a computer chair), but still was in a lot of pain, and had to get up and move around a lot.

With an ovarian cyst, the large hip circles don’t really work - in fact, I think they cause more pain.

When I got home, I had shooting pains on the left side, but higher up - like above the ovary or further. I used the bathroom and when I wiped, I found a dime-sized amount of bright yellow mucus.
This morning when I woke, I had clear, thick, abundant vaginal discharge, and I am no longer in any pelvic pain.

For me, I think this means I really did have an ovarian cyst, and it ruptured late last night.

Here’s hoping the pain is done and I get a few pain-free days before Friday, when my period is due!

It’s been a long weekend. Hell it’s been a long week. I have experienced severe pain and mild nausea every other day since last Monday. I missed work every other day last week. This is not normal for my cycle. Someone asked me if perhaps I have another ovarian cyst on top of the usual menstrual cycle - I would not be surprised if this is the case.

Let’s recap: spotting on Sunday Sept. 27 until Thursday Oct. 1.

Moderate flow developing to heavy flow on Oct. 1. Bedridden Oct. 1 as of 8:30pm and all day Oct. 2.

Heavy flow on Oct. 3 but pain stayed around 4.5 on the pain scale for much of the day, spiking to 6 a couple of times. I spent that day in class (I’m taking a Teacher level Montessori Practical Life class through the end of this month) and forced myself to make it through the entire day.

The pain and bleeding subsided by around 6pm on Oct. 3 and I felt well enough to consider going out dancing, if you can even believe that. I decided to take it easy and not mess with my good fortune, and went to a movie with my husband and a friend, instead. We saw Zombieland - haven’t laughed that hard in awhile. :)

The pain and bleeding never returned for the rest of the night.

I woke to pain on Sunday morning around 10am. The bleeding returned in a gush, as did the nausea. I forced myself to eat something so I could take the Vicoprofen I just got on Friday.

The pain hovered around 6.5 on the pain scale, but I decided to take only a quarter of the Vicoprofen and see how that would affect me, since when I tried half a pill on Friday, it knocked me completely out for hours.

A quarter of a pill did nothing for me even after half an hour, so while riding in the car with my husband to run errands, I took another quarter pill and waited.
Again a half an hour went by, and by this time I was crying from the pain, so I took another quarter pill. That one finally kicked in with the other quarters and I was dizzy and stoned.
My husband dropped me home when I could no longer stay upright, but I could not sleep. I was antsy and headachey and my eyes hurt and I was moody and had the nesting MUST CLEAN air about me. I cleaned the counter top in the kitchen, the bathroom sink, and THEN passed out for half hour to 45 minutes.

I got up after my husband went off to game night with his buddies. The bleeding had subsided again, but my head and eyes still hurt. I made myself dinner and felt comforted by the lovely smell of cornish hen cooking in the oven. I ate that entire hen. ;)

Immediately after eating, the pain returned once more, but the bleeding hasn’t ramped back up. I didn’t want to chance it, though, so I took half a Vicoprofen and inside of 20 minutes I was stoned. I had just enough time to type up this journal entry before becoming too stoned to carry on.

Someone had suggested a few months ago that I try Vicoprofen instead of Tylenol 3 - for two reasons: 1) My liver enzymes were really high in January 2008 and the doctor thinks it’s from taking Tylenol 3 every month for the past few years. 2) The FDA wants to ban opioid/acetaminophen combos because of the danger of liver damage/failure in patients.
So last week I called my gynecologist and asked to try Vicoprofen. Curiously, she said she’d never heard of the stuff before. She’s the same doctor who has let me run the gamut of meds to treat the endometriosis pain, so of course she said yes to the Vicoprofen.
I was bedridden on Friday but my neighbor was nice enough to go pick up the prescription for me.

The test run with Vicoprofen so far has vague similarities to when I was taking Darvon back in November/December 2007 and Codeine Sulfate back in February, 2008; in the past two days I have experienced headaches, jaw pain, heart palpitations, and anxiety leading close to panic attacks. I knew better than to take a whole pill at once, otherwise I’d have also experienced the feeling of being drowned/suffocated as hydrocodone is wont to do to me. I would like to note that although I’ve had strange dreams, I have not had horrible nightmares while on this medication.

I really hope all the pain and bleeding is over by tomorrow, because I need to go back to work or else the axe hangs ever closer regarding attendance issues again. I have not been threatened on this job for missing work on account of my illness, but it’s a constant fear that it’s only a matter of time. I’ve been with this school for 5.5 months. I’d like to make it to a year and start feeling comfortable and secure in my job placement.

I will continue to report on any side effects I may have with the Vicoprofen. Right now on half a pill, I can still feel the low back pain clearly, but the pelvic pain has subsided. I can still feel pain in my eyes and head. I’m very tired, getting shaky and dizzy because of my refusal to go lie down when on this medicine. So I’m gonna quit now and go lie down.

Oh…wait… before I forget - last month two different people suggested things for me to try to quell/cure the endometriosis pain. One suggested I go to Lourdes, France and bathe in the healing waters. Another suggested I try biofeedback. As you know, I keep a list of things I’ve tried to combat the pain of endometriosis, and I keep this list not just for me but to show others who ask “have you tried” that yes, more than likely I have in fact tried it. However, I won’t be able to afford a trip to Southern France anytime soon, so Lourdes isn’t feasible. Nor am I Catholic, nor do I believe in ‘miracles’, so Lourdes isn’t believable.
The biofeedback thing though has merit - in Susan Lark’s Fibroid Tumors and Endometriosis Self-help Book, she talks about the aid of biofeedback in managing pain.

So I’ll motivate myself to try that and add it to my list.

Suggestions are always welcome. Check my list first before suggesting I try this or that remedy. Some suggestions may be refused - with explanation as to why.

I really gotta go fall over now. Good night.

I forgot to follow up on the disability thing. I tried to file for state and federal (Social Security) disability on March 16 and 17 respectively. I was turned down over the phone by state and got a rejection letter in the mail from federal after being grilled for an hour and a half by phone by them.

I am not shocked, nor surprised.

Today was the New Moon. I spent the day cleaning house (cuz even housecleaning stopped happening in the past month) and only putting healthy food in my body. I moved about calmly and deliberately and tried to remember to breathe and not feel so overwhelmed by life in general.

In general, I’m really bitter right now that I’m having pain again, not just pain mind you but continual pain. Before my surgery, I experienced moderate pain and fatigue up to two weeks before menses every month. Surgery brought that down to a few days before menses. This gave me back a week and a half of my life every month for two years until November 7, 2008, when complications from a bad ovarian cyst took hold, which left me debilitated for all of November. I experienced nine good days in December (not consecutive), then had a much better month both in January and February.

Now, something’s up again. Something is wrong. It’s not ovarian pain. It’s not a cyst.

At time of surgery, some endo was found right near the bladder. It was cauterised instead of cut out because the surgeon was afraid she’d puncture my bladder. Cauterising the surface tissue does nothing for the disease that’s deeper in. I know the endometriosis is growing and spreading again.
On top of getting pain two weeks before menses again, I’m now getting lots of bladder issues (frequent need to urinate but can’t, feeling of urinary tract infection (UTI) coming on). I’ve only had six good days this month (not consecutive). If a UTI were coming on, I’d have had it already. I used to get them all the time as a child (now known by endo experts as a possible early warning sign of endometriosis).

My annual gyn visit is in one month. I’m sick of doctors telling me I’m too pre-emptive with stuff, even though it turns out I’m usually right. But I’m going to wait on this one. I’m going to keep gathering evidence over on ReliefInsite.com and through my calendar and journal, and present it at my appointment, and demand my urine be checked for blood to rule out endo perforating the bladder. I’m going to get it definitively on paper how far my uterus is tipped (an ultrasound tech in December told me I have a tipped uterus but didn’t note it). I’m going to get it ruled out if possible if either A) endo pulled my uterus that way like it had done to my ovaries and/or B) the tipped uterus accounts for some of my pelvic pain (depending on how far tipped it is). If the discomfort worsens or doesn’t otherwise improve, I’m going to first rule out UTI and then demand Interstitial cystitis (IC) be ruled out, too. This means I will have to go for a cystoscopy and will have to have my potassium levels checked. My friend, who has IC, says he is confident that I do not have it. This of course reassures me greatly.

I spent time today reading about pH Balancing, and decided after seeing several websites advertising supplements for balancing, that I should just go down to the local hippy store and see what they have on tap. I came home with some pH strips and supplements for pH balancing. My first urine strip at 8pm came out to 7.5, which is in the high end of the normal range. I forgot to do the saliva test so I’ll do that later.

I also bought more goat milk yoghurt and flax oil, and will be starting up the Budwig Diet again (I let it lapse because I got tired of putting effort into food prep, but I must accept that’s my life, now).

Last night, I got to meet one of my husband’s high school friends whom he just reconnected with (it’s our 20-year anniversary this year, so classmates are popping up all over the place). She’s a physical trainer, and showed me some pelvic strengthening exercises.

Today I set calendar alerts on my cell phone to remind me to take my supplements, because I’ve fallen behind on that again, too.

I need to also set calendar alerts to remind me to do Qigong and Chi Nei Tsang every day, and the exercises my hubby’s friend showed me. I’ve been doing it when I remember, it’s not like I’m not doing it at all, but still.

I have a sneaking suspicion that after about three days of all these alerts going off, I’m going to become Edie in AbFab, throw the phone out the window, and scream GIVE ME BACK MY LIFE!!!

Stay tuned…

George arrived on Sunday, March 8 at 6:48pm. I’d been cleaning the house all afternoon in preparation for george, and documenting it for YouTube.

I’d been documenting different parts of the video all day as ideas and the script came to me, and getting excited as to how all the parts would fit together at time of edit. This was the first video I was creating that would have a soundtrack and voice over parts, and my confidence level was high - I would figure out how to put it all together in iMovie.

I was in the bedroom, photographing the stuff I would use to entertain myself with while bedridden, when suddenly my face and ears flushed. I felt stingingly hot and winded. I went to the bathroom and there was george - a day early. There was bright spotting at first, and the pelvic cramping returned. I immediately popped 600mg ibuprofen, dropped everything I was doing around the house, and zoomed off to the store to finish grocery shopping.

By the time I returned home an hour later, the pelvic pain was at 6.5 on the Mankoski Pain Scale. I can’t recall but I think I took Tylenol 3 before bed that night.

On Monday, I went from bright spotting to dark brown spotting, and then it turned bright red by evening time. I note this because all through 2008, I had dark brown coffee ground type material on my first two to three days of menses before the heavy bright red flow set in. And then it was November 7, 2008 when I was diagnosed with a 4cm ovarian cyst, which left me very ill throughout the month of November. I went on a detox diet for liver and kidneys that month, and by the end of November, the cyst had shrunk to 1.6cm.
I’ve had dark brown spotting on and off since November. I’ve only had one month so far that menses started off bright red and stayed that way throughout.
A healthy menstrual cycle is supposed to be nice and bright from day one of menstruation. The dark stuff means something not right is going on inside, such as a cyst. So I keep track of the colouration every month, now.

Going back further in time a bit - after my last day working over in Daly City, on Friday, March 6, I went to a health food store I always frequented when I used to live in that area ten years ago. I picked up some liquid iron supplement, and also purchased iron supplement pills. I spoke at length with the dietician running the register, and he told me that for my condition, my doctor would probably put me on 1,800mg “of the harsh stuff”, meaning the really constipating iron tabs. He sold me stuff that’s supposed to be much more gentle on the stomach and intestines. I’ve been taking the iron since Saturday, March 7th: 100mg per day of the capsules and 4tbsp (20ml) per day of the liquid stuff.
That is to say, I’ve been taking three times the recommended dosage of the capsules, and two times the recommended dosage of the liquid, because I lose so much blood every month, and because a year ago last April, when I was in the emergency room, I was told I may need a blood transfusion with all the blood I’d lost (I declined treatment, I just wanted to go home cuz I’d had a horrible hospital experience).

Tuesday is when the cycle got very heavy and painful. That day was the Full Moon. My pain level was at a 7-8 all day on the pain scale. I went through a lot of Tylenol 3 that day. So much in fact that I’d wager to say I overdosed a bit, because by evening time I had mild hallucinations and found it difficult to breathe. Despite having taken so much Tylenol 3, I was highly productive on Tuesday. Being that high allowed me to dissociate from the pain and work on my YouTube video quite a bit.

On Wednesday, I woke from a medication-induced nightmare which left me on edge for much of the morning because it involved friends disowning me. The pain and bleeding was moderately heavy, but it fluctuated all day. I ranged from a 4 to a 7.5 on the pain scale for much of the day, but despite that, I was very tired and listless all day. I refused pain medication for much of the day because I didn’t like how much I’d taken the day before. It wasn’t until around 9:30pm that I resumed taking Tylenol 3, because the pain and bleeding ramped up again. I went to bed feeling 8 on the pain scale.

Thursday is when I had my Terrible, Horrible, No Good, Very Bad Day.
First off, I woke up from another medication-induced nightmare in which tornadoes, my father, my husband and some friends were involved.
But I fully expected to feel better after having two heavy pain and bleedy days. This was not the case. If you can believe it, the bleeding was even heavier than the previous two days. I was soaking a pad an hour, I was dizzy, off balance, disoriented. I took my pain meds and considered whether I should go to hospital emergency. Every time I stood up or adjusted my position, I soaked a pad.
I had just stood up and had picked up my bottle of orange juice, when the lid popped off and the bottle fell from my hands, splashing all over the place. It wasn’t even 10:30am yet. I wrote about it after cleaning everything up, but my bad day didn’t end, there. After cleaning up the mess, my pain got considerably worse of course, what with all the stooping, bending and mopping I had done. I took my rice heating pads to the kitchen to heat them up in the microwave, and shrieked.

Ants!

We’ve been having trouble with ants for the past few weeks, and have tried several remedies. The ants always find a new way into the house. In the two and a half years we’ve lived here, we’d never had ant invasions until this year. Because of the recurring ant invasions, I’ve come to scrutinize any room I enter before going about my business in that room. This means that I had just been in the kitchen less than an hour prior to my re-entry, and there were no ants. And yet here they were now, a full busy highway of them. They had found my cats’ water dish but surprisingly not their kibble. They were having an all out pool party in the water bowl. Miscellaneous ants crawled about the kitchen, checked out the liquor shelf, and cruised alongside the bottom of the refrigerator. The source of their entry was through an opening in the cabinets below the kitchen counter. This is the area - that entire back wall of the kitchen - in which the ants have been trying to come in through various sources for weeks, now. They’ve even tried coming in through light switches.

Upon entering the kitchen and seeing this, I put down my heating pads and sobbed. I had to clean up this mess NOW, or else I’d go mad, and the ants would be in the cat food and in the fridge within minutes.

Good thing I’d already popped a second Tylenol 3.

I set to work with the ‘Bugs R Done’ orange spray. After coating the kitchen in that stuff, I opened windows to air out the house, and mopped up ant carcasses. To the latest entry point, I applied ‘Ant Eater’ brand anticide, which contains diatomaceous earth and clove oil. I then stripped down and took a nice hot shower. While showering, several ants streamed out of the towel rack in the shower and began running up and down the shower wall.
I sobbed and sobbed. Depression set in full force at this point.

My husband came home early from work, bringing peppermint and cinnamon oils in tow. He moved the fridge out, cleaned up under it, and we applied soaked cotton full of the oils to various potential ant entry points around the kitchen.

I went to bed early last night - around 9:30pm - as the bleeding tapered off. I laid in bed first listening to progressive relaxation tapes, then reading The Witching Hour - a book I first fell in love with back in 1995. I had three heating pads on various parts of my body. I finally was able to get to sleep around midnight.

We’ve not had any further ants and hopefully it’ll stay that way.

Today I am feeling better. I’m back to spotting again. I have mild to moderate low back pain. The problem today is that around 9am this morning I had black, bloody stools. This is important to note in relation to my iron supplement discussion above, because it is a sign of iron toxicity. Insofar as symptoms go, I also have metallic taste in my mouth, and a headache. So I’ll be laying off the iron supplements altogether until I see my doctor. I have an appointment today at 2:45pm.

Tomorrow, I’ll be up in Calistoga for an all day spa event for a bride-to-be. I’m a bridesmaid in her wedding next month, and so we are treating ourselves and the bride to massages, swimming, relaxing, and dinner. We’ll cap off the night with a girly slumber party and then come back home on Sunday.

This Monday, it’s the 16-year anniversary of a local nightclub, and so my husband and I will be heading out to that.

Coming up this Tuesday, I have an appointment with Social Security Disability Insurance, which will likely be a waste of my time. I set up the appointment yesterday in the throes of my depression, because I am feeling unemployable again due to the fact that I have just missed another week of potential work, and I can’t shake it from my head that the last job might have continued had I not been out sick for nearly a full week every month, and the daycare agency never called me back when I asked to be reinstated (that’s the same agency that told me “I knew it! Every time I need you you are not available!” in August, 2008, because they seemed to only call me on a monthly basis, and when I was bedridden).

I talked to state disability yesterday. They told me that per their rules, they can only pay out a maximum of 55% of one’s paycheck, which means one must be inable to work for more than 14 days out of each month. Because I can work 23-26 days out of each month, I do not qualify as disabled per their requirements. So although I am potentially unemployable due to my health conditions, I fall through the cracks for state assistance. I was referred by state to federal. I know that will be a joke, too, but at least they’ll take time to interview me rather than just deny me outright.

This Tuesday, I also have an interview for a nanny position. I know I will ace the interview because I am confident in my skills and educational background. But I am not confident I will get the job once they find out about my health condition. I go back and forth on the issue of whether or not to divulge my health condition.
We’ll see how it goes.

Next Saturday, I’ve got an appointment to get my hair coloured. I’ve not done anything colour-wise with my hair since the wedding five months ago. I’ve been letting all the colour and length grow out so I can get the copper and red tones I originally wanted before that one hairstylist screwed up my hair just weeks before our wedding last year. The woman I’ll be seeing next Saturday is the miracle worker who fixed what the other hairdresser had done to me.

Well holy shit. I thought the spotting before my period, with dirty blood, started sometime around September 2008. I am wrong!

It’s been going on since at least January, 2008. The ovarian cyst may just have been an extension of that. What else is going on with me?

Yeah you guessed it, now I’m all worried again.

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…