This remains a scary cycle

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

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

It never died down yesterday.

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

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

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

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

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

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

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

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

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

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

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

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

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

alliebroshpainface8

 

But when I woke at 7am this morning, still bleeding heavily and passing big clots, I became even more scared. I kept saying to myself, “The bleeding is supposed to have tapered off by now.” This put me in the Allie Brosh pain scale graphic of:
alliebroshpainface7

 

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

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

Scary moments with endometriosis

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

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

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

I’m on the line calling my GYN now.

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

Called the local doctor and also left a message.

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

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

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

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

I am a can of mystery meat

I had it in my head that I have been experiencing nausea for the past month, even when I am not on my menstrual cycle, and that this must somehow be a new development.

Then I got word of the MRI results, saying I have cysts in my liver, kidney, cervix, and I have an endometrioma on my left ovary. I thought for sure the nausea had to be tied to one or more of those, but fixated on the endometrioma, because I recalled being pretty nauseated in the past when dealing with ‘regular’ ovarian cysts.

So yesterday I’d had enough of the nausea – it got so debilitating that I could not read my homework anymore. Friends on facebook asked if I’d contacted a doctor about this. Uh..no, I haven’t, heh! So I did.

My local doctor’s office – the on-call doctor of the day – called me back after 9pm last night, and I asked him if he could prescribe Cesamet, which I heard about through a Canadian endometriosis buddy a couple of years ago.
He said no, his office doesn’t touch the stuff. He went on to say he did not think my nausea is being caused by the endometrioma or the liver or kidney cysts. He said he has never heard of nausea being brought on by an ovarian cyst, and says he’s been practicing medicine for many years. He was condescending and talked down to me and was authoritative, and suggested something else is going on that I should get checked out for. He said I should come in for a checkup. In the meantime, he suggested I try taking peppermint tea or ginger tea for the nausea. I told him I’ve already done that to no avail. He then sent in a prescription for Phenergan. I looked it up and decided the side effects were once again worse than the problem, and so I will not chance taking the stuff. Remember that I am the person who hallucinates on Tagamet and could only handle 6-8mg of any SSRI medication at a time without severe side effects, and over the long term, I am *still* trying to recover from the two years I spent on SSRIs.

ANYWAY, so Phenergan is out.

This morning, one of my gynecologist’s minions assistants called me back, and I talked to him about the nausea. He was MUCH more diplomatic than the local asshat doctor. He said that their office does not have experience with prescribing Cesamet, and so he unfortunately could not help me with that. He also said it seemed unusual that I should be experiencing nausea with an ovarian cyst. He told me that he felt the endometrioma was way too small to be causing problems for me at this stage. He also doubted that the liver and kidney cysts could be stirring up nausea, but he suggested I speak with a gastroenterologist if I am still concerned. I thanked him for his time and we hung up.

Gastroenterology, eh? Well I’ve already ordered the liver and kidney detox supplements, and they’re on their way. So I’ll try that first, before hiring on yet another specialist.

Today, just to say I have covered all my bases, I contacted one of the two Cannabis dispensaries I am registered with under Prop 215, but they would not speak to me by phone, and said I’d have to visit in person or send an email. So I emailed both dispensaries to ask if they carry or can get Cesamet. No one is available to take me to the dispensaries today, and I’m in no shape to go out on my own.

I do not have confidence that the dispensaries can get Cesamet.

This leaves me wondering about the nausea. So I searched my own blog, and was frustrated to find that I had posted about this 98 times throughout the life of my journal! I went back and made a category for this one keyword, to make it easier for me to search next time. Ugh.

So what does this mean?

This means that the nausea is nothing to be alarmed by, whether it’s on cycle or off. I usually had this only on cycle, but apparently having nausea between cycles – it’s just part of living with endometriosis.

Go me.

I am truly frustrated and feeling at my wits’ end by having to continue residing in this meatsack. I feel I am reaching the bottom of the emotional pit this month. I hope that means that after today, the pain and bleeding will ease up, and I will be able to emerge once again from the Underworld.

Each month that I must pass through the Underworld, I grow weary of ever making it back out alive again. I fear that one of these days, I’m just going to give up and make it my permanent home out of sheer exhaustion with having to battle this illness.

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.

Another wasted weekend

So I was right on Friday – I was about to start any second. I began spotting by around 9:30am, and was surprised to see george two days ahead of schedule. I hadn’t had some of the other warning signs, such as change in mucosa or increased cramping.

The spotting was thick, sticky, and really dark reddish brown. Could be a by-product of the ovarian cyst, or it could be due to all the sugar and caffeine I’ve ingested since my trip to Michigan on May 14 – 23. The caffeine addiction was rekindled during the trip, as is often the case when I’m traveling, and so it was hard to break when I got back to California. I was able to transition from coffee to tea within a week, but I was still consuming caffeine. I had also been eating a lot of chocolate again, and my forehead and temples are paying the price as they always do; I look like a teenager again with all the zits. :(

Friday was unusually sunny – I thought it was supposed to rain, but the sun kept poking through the clouds and fog in large doses – enough so that I got sunburned on the face and neck again. I’ve been refusing to wear sunblock because the only tube I can find in the house has been some Neutrogena stuff that dries and flakes within minutes and makes me look nasty. I just read today that sunblock is pretty much useless, anyway.

I thought for sure that once the spotting started, the pain would begin ramping up, but it didn’t. I made it a goal to finish the entire work day, since I’d left early twice this week already (on Tuesday it was because a co-worker’s perfume put me into respiratory distress, and I went to ER, and on Thursday it was because I was running a 99.9°F temp and feeling really severely tired). I had to pop 600mg of Advil on my lunch break when the cramps ramped up to about a 4 on the scale, but I held fast to my goal and made it through the entire day, even working a half hour later than usual because they were short-staffed by one person.

When I got home from work, my husband, who had been home sick all week with some kind of chest cold, indicated he’d like to get out of the house for a bit. I suggested we take a trip to Costco. I was disappointed to see that they’re still not up on the gluten-free foods thing, yet.
Upon our return home from Costco, we grabbed some dinner at Everett & Jones (eh). When we got home, we were both worn out. I declared crippling fatigue, took a shower, swallowed 600mg of Advil and went to bed by 9pm (1,200mg consumed on Friday).

I woke around 5am with cramps, then went back to sleep til sometime after 7am, until I could sleep no longer. I’d had enough sleep and the pain was ramping up.

I suffered with nausea again this morning. I force fed myself a bowl of cereal with bananas, and the nausea increased.
I didn’t eat again until about 3 hours later.

Today I was able to load the dishwasher and manually wash some dishes that can’t go in the washer, and I was able to reassemble one box fan that I’d taken apart yesterday to clean. I drove us to Berkeley to get my sweetie some gluten-free cupcakes, but before we even got to the freeway, the cramps set in and ramped up. We made it to the bakery and back again, but I had to take half a Tylenol 3 and 600mg of Advil on the road for the pain, and I felt every damned bump in the road. I clenched my fists and gritted my teeth a lot.

When we got back home, I found out that the reason the pain ramped up is because the spotting finally turned into flow. It was still dark reddish brown, with lots of clots.
I took a full Tylenol 3 and spent the rest of the afternoon on the couch. I spent a bit of time today folded over a big pillow and the arm of the couch, as that was the best position for me. Same thing this evening, with heating pads added. Today’s rule has been; Sitting Good, Walking Bad.

I have ingested 2.5 Tylenol 3 pills today and I think 1,600mg Advil. Either 1,200 or 1,600, I’m not sure. I should always remember to write each dose down as I take it.

The pain has been at a 7 for much of today.

My brain is antsy but I’m forced to sit in one place. My joints are aching like hell, possibly from all the ice cream I’ve been consuming. I wonder if that’s contributed to my pain level today. I’m not normally so bad to myself, but the cow’s milk ice cream craving has been out of control this week. I have lactaid pills I take with it. Sure, the lactose intolerance is helped by the pills, but the overall damage done to my body by continuing to consume cow’s milk products is not worth it. By this afternoon, I finally convinced myself to stop eating the ice cream I’d bought.

Tonight, my friends Chase and Jason stopped by to say hello. We’ve not hung out in awhile, so it was good to see them, and they were the first visitors I had right after my laparoscopy, so they know what I look like when drugged and in pain. Plus, their sister suffers with endo (and maybe worse), so we talked about what she’s going through and her upcoming surgery this September. I hope my body cooperates so I can be there for her recovery. I feel terrible that I wasn’t there for my friend Patricia’s last endo surgery, because my body wasn’t cooperating. I was bedridden the week she went to surgery.

We also talked about neurontin, which my new surgeon Dr. Giudice wants to put me on. Jason has been on neurontin for the nerve damage in his neck, and it made him a total zombie. Another ‘NO’ vote. So far it’s been a resounding NO from everyone I’ve talked to. It’s the whole “treatment is worse than the condition” thing again.

I’m stupidly tired from all the medication, and well I’ve been up for 17 hours, so I’m going to bed again. I say ‘again’ because although I’ve been up all day, I haven’t been mobile enough to feel ready to go back to bed. I’m a medicated tired, not a ‘had a full day’ tired. So frustrating. Hence, the ‘wasted weekend’ feeling.

Tomorrow is already Sunday, but it will only be Day 2 of actual flow, and I’ve not even had a heavy flow, yet. I’m assuming I’ll miss Monday and possibly Tuesday unless I bleed like a stuck pig from dawn til 11pm tomorrow. Missing work this week is Not Good™, because it’s the last week of school, which basically is an all hands on deck sort of thing. I want the opportunity to see all my kids go through graduation (there’s one to two class/grade graduations per day this week). I’ve now worked with every single class; the 3-year-old room, the 4-year-old room, the 5-year-old room, the Kindergarteners, the 1st/2nd grade class, and the 3rd/4th/5th grade class.

My body needs to cooperate, dammit.

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…

The Waiting Game – part II

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.

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. :(

Visit to a new surgeon today

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.

T-minus 2 days

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…