Pain, fun, allergic reactions and trapped nerves

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

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

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

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

steph_badger_clubsurgery09182010_bygeoffreysmith

 

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

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

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

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

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

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

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

What a sucky end to my birthday weekend, though.

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

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

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

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

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

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

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

It’s always something. :(

I don’t know how much more I can take.

My period came yesterday and I’ve been home and bedridden ever since. On top of it, last night my neck/shoulder went out because I slept wrong. I wanted my husband to stay home with me today but he wouldn’t. I hitched a ride to the doctor via my neighbor and got some muscle relaxers. I took a whole Tylenol 3 and shuffled home because I did not have exact change for the bus and can never remember how much it is, anyway. It is a 0.4 mile walk, but a bit harrowing when in pelvic pain and trapped nerve pain in the neck/shoulder.

The thing I’ve been saying to my husband since last night is that I just want to be put out of my misery. I told him repeatedly that I need a caregiver, but he needs an equal partner. I told him for that reason, the marriage probably isn’t working out in his favour. He insists he wants to keep me around, but I don’t see the point. I don’t want to be disabled. I don’t want to be needy. My body is broken and has other plans for me.
He won’t take me out back and put me down, though. I told him he’s selfish for that.

Then again, I’m selfish for wanting him to do the deed. But I won’t do it, myself. I told him it’s a really good thing I’m seeing a psychiatrist, today, because between the trapped nerve in the neck and the ongoing/worsening endometriosis pain alone, I NEED the psychiatric help right now.

My psychologist has ideas about what my diagnosis is, but I’m going to wait til the psychiatrist has also evaluated me before I start educating myself on how to care for myself with yet another diagnosis.

And a large part of me wonders why I keep seeing specialists for all these problems. It does nothing but take my money and insurance, and makes me miss more work because of the appointments, and none of this has actually HELPED or CURED me, anyway. I should just go on like all the other broken people in the world, until I decide like a lot of them that I’m DONE and just hit the reset button on my own, in peace.

So there’s going to be a second surgery.

On Friday, September 10th, I started feeling low pelvic discomfort/fullness. I had the need to ‘check’ myself all day to see if menstruation had begun.

Saturday morning, my husband and I were intimate, and I experienced pain as I often do. :( I noticed bright red bleeding right afterwards. I assumed this was just the little pool of blood that sometimes leaks out from the cervix and sits at the end of the vaginal canal right before menstruation begins. Within half an hour of intimacy, I experienced uterine cramps which lasted all day. However, as I had hoped, the bleeding turned to spotting quickly enough, and then stopped by afternoon. For the pain, I took 600mg Ibuprofen in the late morning, then took half a Tylenol 3 and more Ibuprofen in the late afternoon.
My husband and I went to a housewarming party that night, and I brought my heating pad with me. I did need it. :( I took another half a Tylenol 3 around 9:45pm, and got all the codeine effects – dizziness, fuzzy-headed, super sleepy, heightened sensitivity to light and noise, etc. Those things don’t mix well with a very alcohol-ladden house party. We were home a few minutes before midnight…on a Saturday night…because of my pain. LAME.

The night out, despite the pain, was not too bad. I had my usual bout of social anxiety, and I was a bad girl and took a few sips of whiskey (it had honey it it, how could I not?). As we were saying we wanted to leave, the hostess said she needed to re-introduce me to a friend of hers, who also has endometriosis.

So I talked with another endo sister and stayed awhile longer at the party. ;)
She highly recommends Dr. Cook down in Los Gatos. He’s the guy who only accepts one’s money, not insurance, but the woman I talked to last night is three years post op and says the pain has not returned. She had stage IV endometriosis, and had to have one ovary removed, as well as part of her vagina, her cervix and her uterus. She also had to have part of her bowels resected, because of the endometriosis. Really bad stuff. I asked a lot of questions about the one ovary thing – since I am convinced that I’ll have to lose my left ovary eventually (this is twice now that it’s been pulled by adhesions to my uterus).
She told me that because she had so much removed, her body freaked out. She told me that although the endometriosis pain disappeared, she had to contend with nerve damage on her bowels, and all of her organs trying one by one to shut down on her. She ended up with asthma and skin lesions and extreme fatigue and all sorts of stuff, which took over a year to clear up, and only with the help of some kind of metabolic therapy. She said she was dying a slow death. To this day, three years later, she still has issues with either keeping in or letting out a bowel movement, I forget which.
Despite such horrific issues, she says she’s glad she had the surgery.

My opinion is: given the choice between knowing the behaviour of my illness and not knowing if I will die from all the pain and suffering caused by a surgery such as described above, I will always choose my illness. Given the choice between a one year recovery and my current illness, I’ll take my current illness because I miss less time off work and thusly less money. Given the choice between possible permanent nerve damage from surgery and my current illness, I might prefer my current illness. Depends on where the nerve damage, is, I guess. I don’t think I would like to have to live with bladder or bowel control issues for the rest of my life. That stuff isn’t supposed to happen until I’m elderly. :p

For over a year now, I’ve been going on about needing excision laparoscopy to properly treat my pain, and now that I’ve talked to a woman in person who has had excision done, now I am chickening out. This is silly. I can easily get just as much nerve damage from electrocoagulation surgery as I can from excision surgery. Hell, I can get organ damage just from the laparoscope going into me. So this fear stuff needs to stop.

…there’s something else. When I did a search on my blog for how many times I mentioned ‘excision’, I read back through my entries and got really mad. You know, the human brain forgets things, and there’s something to be said about that. I feel like had I just left all those feelings forgotten, then I wouldn’t be so angry as I am right now with doctors who wrote me off, with all the time I waste trying to find the right specialist, only to be slapped in the face by people saying stuff like, “DO YOU LIKE BEING IN PAIN? THEN GO GET ANOTHER ELECTROCOAGULATION SURGERY” or “I TOLD YOU ABOUT THIS PERSON A YEAR AGO, WHY DIDN’T YOU LISTEN TO ME”.

If I hadn’t read through my old blog entries, then I might not be so mad as I am right now at my husband. But the thing is, forgetting also destines one to repeat history. And this is recent history – the blog entry I’m referring to is from February – only seven months ago. We’re in a cycle, and it does no good to keep forgetting that the finances issue is a HUGE issue. I DID go to school this summer after my husband insisted that I go, and insisted that our tax return money would cover it. When the tax return money ran out towards the end of the summer and my husband had to foot $1,000 more of his own money, all hell broke loose. We’re still reeling financially and emotionally, and then I get told I must have another surgery ASAP.

Back on February 4, I said I could EITHER have surgery OR go to school because we don’t have enough money to do both. This was before our tax return. Once we got the tax return filed on February 20, my husband said I should go back to school, and I agreed. We both thought at that point that surgery could wait.

Who knew that surgery would be deemed necessary the same year? There was no way of knowing that.

But the same frustrations I expressed about our finances are still at the forefront of our relationship today. We did have that talk back in February, and he did say that he would support and help me and that he would stop being wishy-washy. The one point we did not cover was him also promising not to be grudging or angry when I need money. He never made that promise and his behaviour is still that of grudgingly handing over money when I need it.

Last Wednesday, when I got the surgery summons, I told my husband we needed to talk about finances and planning for the surgery. Friday night, we had that talk. Once again, we got into our modes. He wanted to pledge chivalrous yet ambiguous support for me during and after my surgery. I wanted to run the numbers. I broke out the calculator and my recent timecard and compared it to my earnings before summertime to get an estimate of money that could be saved between now and December, while telling my husband about bills and groceries and things that would need to be taken care of. He sat there, eyes glazed over, zoned out, then began playing a video game on his iPhone.

While running the numbers on my end, and noting his lack of engagement after he initiated the talk, I kept working but did not look at him as I spoke, telling him, “Here’s what I need for you to be doing. I need you to go through your bills and expenses and the last three months of the grocery bills, and tell me roughly how much money you have at the end of the month each month, so that I know what you have to contribute towards the surgery, since you said you would in fact take care of me during and after surgery.”

He stopped playing his game, stared at me for a moment while I continued to work without looking at him. Then he got up in a huff and stomped off to the computer room to run his numbers in angry silence.

And this is how it always goes. He’s all talk and then when it comes time for action, he gets his panties in a twist.

He DID do his numbers and we DID compare things.

The end result of my own assessment was that I cannot afford to save money for surgery to cover the co-pay (up to $1,400 out of pocket) AND any post-op care, AND bills that will still be coming due after surgery while I’ve been off work without a paycheck.

My husband’s assessment showed that he was left with just over $200/mo out of his paycheck, if he had to continue to cover all of the groceries, cat maintenance, and all of my bills post op.
I asked if my husband could set aside money out of his paycheck every payday from now until mid-December in order to have that padding available – to cover all the expenses for up to 2 months post-op. He shared that he has about $1,476 left over after bills are paid each month. I asked if he could carve out $400/mo from now until mid-December (leaving him with $1,076 total in the bank each month, but saving $1,200 to cover me), since my bills due on top of everything else are about $316/mo ($632 if he had to cover me for 2 months).
He replied that he could logically swing it, but would feel uncomfortable doing so, in case other emergency expenses came up. He said it would be cutting it too close.
The end result of his assessment is that he cannot afford to save money now to cover me post-op in December.

This pushes my surgery out to either spring break, which is one week optional work in March, 2011 (holiday daycare week), or sometime in the summer 2011, which is a fixed amount each employee can work during the summer, anyway, due to low enrollment.

At first, I was silently very angry with my husband’s refusal to save $400/mo from now until December. But I calmed down and realised that yes, $1,076 really is in fact in the red for two people, should any tiny emergency crop up. It’s just not doable, and I have to accept that.

After doing our assessments on Friday night, I did not feel any better about how we both emotionally handle things related to finances. I still do not trust that my husband will make good on his word to be there for me. It’s all on me to save the money towards the surgery co-pay and taking care of myself after surgery. I have to start saving now.
When we got married, we agreed to keep finances separate. We only got the joint account to pool money for the honeymoon. That was the only reason we got that account. And even then it didn’t really work out so well – I still put a bunch of shit on my credit cards, and used my money, and he still used his money. The fact remains that he is very guarded over the ginormous amount of money he makes in a year, and is resentful that he has to foot all of the rent and groceries. He makes roughly sixty-five thousand dollars more than me each year, and so when he has to split his income in two to support both of us, he gets pissy.
I make sixty-five thousand dollars less than him each year, so when I easily run out of money and need something, I get all pissy when he won’t just provide the money. I don’t look at it as a spoiled princess or entitled bitch thing. I look at it as a fracking charity thing.

Another thing I found out from my assessment is that missing two or three days of work each month loses me roughly $4,000 every year at the current pay rate. At my highest earnings in the dotcom days, I was losing up to $7,200/year of my paycheck because of missing work due to endometriosis. I posted a study about this on the main Living With Endometriosis site back in April, 2010. My personal cost is much higher, but I don’t know if their costs were net pay or gross pay. My assessment was gross pay.

I still feel the same as I did back in February: “I think it’s best that I just go back to pretending that this is what all women go through every month, and stop trying to treat something which ultimately probably can’t be treated, anyway. I won’t die from my condition. No matter what I’ve tried in the last 23 years, nothing has worked anyway, so why bother to continue trying to fight it. I don’t have anyone but myself to help me financially and emotionally, anyway. Same as it ever was.”

My brain is spinning

The right side ovarian pain has been intermittent and mild throughout today as well.
This morning I had my follow-up appointment with Dr. Giudice, my ‘new’ GYN. She had a new nurse who wanted to make sure she had my history correct, so we went over the notes. I love how the nurses and doctors prepare themselves before speaking with the patients, it’s pretty awesome. Even if they only just read my history a few minutes before entering the room, they do a great job of putting off like they’d spent lunch hour or the night before poring over my file. It makes me feel respected and valued – imagine that! So far, Dr. Giudice’s office is three and a half to four star in my book (Not five star? Communication issues sometimes are the problem).

This morning we caught up to the present pain, and the nurse typed up everything for Dr. Giudice:

“38 year old with history of endometriosis and chronic pelvic pain presents for follow-up. worried about growth of endometrioma. increasing pain on Right ovary intermittent, stabbing. walking, heating pad not work. severe dysmenorrhea is stable, but patient reports worsening debilitating pain 1 week before her period which is new (similar to pre-surgery 2007). tylenol #3 and ibuprofen not work. during menses – bedridden, around-the-clock (ATC) meds. pain currently Right side, but can be on both sides.

2 visits with UCSF pain management psychologist – insurance stopped covering. sees psychiatrist (new appt next week), psychologist, alexander technique pain management (less movement)

4/21/10 – patient referred for pelvic MRI to rule out adenomyosis. Referrals for chronic pain clinic and pelvic physical therapy were given. She declined Mirena IUD, Lupron, presacral neurectomy.

6/23/10 – patient returned to review MRI. MRI revealed 1.4cm Left ovary endometrioma vs. hemorrhagic cyst, no evidence of adenomyosis. patient declined GABA cream hormonal treatment, or antidepressants. Patient is interested in surgical resection of endometriosis. The decision was made to defer surgical intervention.

Since then, she has called the clinic several times regarding nausea (7/2), passage of thin grey tissue during menses (7/26), and a heavier than usual menses (8/20). Her pain is currently controlled with Tylenol with codeine and Ibuprofen.”

That’s a pretty good history – I didn’t expect them to have preserved notes on my calls to their office! So cool. The only thing I take issue with is the “GABA cream” – perhaps the nurse got it wrong, I dunno. But during my visit to the pain management director in May, and my visit to Dr. Giudice in June, the word “cream” was not used to describe Gabapentin. It was called Neurontin and Gabapentin interchangeably, and was told to me that it’s usually prescribed as a seizure medication.

That aside, everything was ok with the notes/history. Dr. Giudice came in and we talked about my current pain, went over the available treatments again, and it was suggested I try an aromatase inhibitor. Dr. Giudice was under the impression that I was offered and had refused this treatment before. I find no reference to it in this journal, and I knew in my head that I had not had the conversation with her, so I asked her to expound. She told me that a lower dose would be used for me than for breast cancer and ovarian cancer patients, and that she’d have to add a progestin sidecar so that my ovaries won’t go into overproduction or further estrogen dominance.
I might have been sold but for the fact that progestin was mentioned. I told her why I’m reluctant to even use the Mirena IUD, which contains progestin, and told her that on Levonorgestrel, I get severely depressed. Granted, the dosage is much higher in what I’ve taken (Plan B) than in the Mirena IUD (controlled release), but I don’t want to take the chance after what’s happened to me in the past.

I told Dr. Giudice that I’m seeing a psychologist who strongly suggests I be put on mood stabilisers, and I will be seeing a psychiatrist next week who will see if that’s really the case. After I’m put on psych meds, I told Dr. Giudice, then I might consider the aromatase therapy. She was totally satisfied with my idea/request.

Next, we went to the exam room, and I underwent my second transvaginal ultrasound of the year. I know the routine now so we got right to it. I prepared myself a little better this time by taking 1mg Ativan before my doctor visit, and even though I still experienced pain from the procedure, I was a bit more calm this time around, and not traumatised at all.

The ultrasound revealed bad news: I now have endometriomas on BOTH ovaries, and I still have the damned free fluid (which means it’s likely pools of blood from the endometriomas) around the ovaries. My left ovary has also become reattached to my uterus…all within five months, since my last ultrasound and MRI scans.

So begins the Twenty Questions:
Did the stress of going to school over the summer hasten my illness? Or is it just progressing this way on its own? Is it my diet? Is it not enough exercise? Or is it just the illness, no matter what I do or don’t do?

I suffer emotionally with the 20+ questions, and I suffer physically with the pain.

After the ultrasound, Dr. Giudice made her recommendation – she wants to schedule me for a laparoscopy.

I asked her what changed her mind between her decision a few months ago NOT to give me surgery, and today. She said that there’s obviously more growth going on, and she does not doubt for an instant the pain I am in, based upon what she saw on the ultrasound in April and then today. She’s seeing the growth in progress. She asked me how soon I could schedule surgery. I told her next summer would be best, since I could take part of the summer off to recover. She asked if I could do end of December. I told her I’d have to check with my school, but I’d need more than 10 days this time around for recovery, since I’m not at a desk job like last time around. This time around, I’m chasing after preschoolers all day.

I asked her, if she has to take at least one ovary, what would that mean for me – what adjustments would my body have to make? She looked at me funny and said that apart from the endometriosis and a routine biopsy at time of surgery, she wouldn’t think of taking my ovaries. She said it’s always a risk to do so, since the ovaries, fallopian tubes and uterus are all so closely connected via ligaments and such to the bladder and bowels. It’s tricky stuff, she said.
Hah. That’s quite a change from my visit to Kate O’Hanlan a year ago!

Dr. Giudice told me to think about scheduling surgery soon, and said she’ll have her scheduler give me a call.

I got copies of the ultrasound and today’s notes, and then called my husband and told him the bad news.

We were JUST talking over the weekend about going to Yosemite for Christmas break, and now I am pressured to have surgery at that time. :(

I told my husband we’ll have to have a big talk about finances, and that likely we won’t be able to swing December, anyway, since we’re still clawing our way through debt incurred this summer when I went to a teacher training course.

If I have the surgery on summer break, then I can go to Yosemite in December, and I can fly to Michigan for my promised annual return in the summer, after I recover for a month and a half after surgery. That is, I can have my cake and eat it, too.

Then the doctor asked what most doctors have asked me, “How long are you willing to suffer with the pain?” i.e. “do you LIKE being in pain? Get in the surgery room now!”

It’s not that simple, dammit!! I can’t just drop everything and run to surgery. The last surgery, under a different insurance, still cost me $1,500 out of pocket in co-pay stuff, plus eleven days without a paycheck. I have a different insurance, and I make $8/hr LESS than I did last time I had surgery. I have to check with this insurance, and I have to pay back existing medical bills and other bills FIRST, and also talk to my husband to see how he’s catching up financially, before we jump into the whole surgery in December thing.

Blah.

When I got home, I reviewed the ultrasound paperwork, and compared today’s imaging and round of notes to the last ultrasound, as well as to the MRI.
I found that things got really spinny at that point – it seems that all of us – me and the doctors – have been referring casually to both ovaries as the one which has the endometrioma on it.

In January, March and April, 2010, I experienced debilitating RIGHT side ovarian pain, per my iCal. In mid-March and again in mid-April, it felt like I was experiencing an ovarian cyst rupture on the RIGHT side, I was in so much pain.

On April 21, 2010, the ultrasound revealed the following: Possible endometrioma on the RIGHT ovary, measuring 0.9cm. Nothing on the left ovary.

On May 27, 2010, I went for an MRI, which revealed the following: The RIGHT ovary is NORMAL.
The LEFT ovary has a 1.4cm mass, “which, given the clinical history, likely represents an endometrioma.”

I didn’t pay attention to left or right. I only thought OH MY GOD THE ENDOMETRIOMA IS CONFIRMED AND IT’S GROWING.

In reality, what happened was that Dr. Giudice found an endometrioma on my RIGHT ovary, and the MRI people found an endometrioma on my LEFT ovary. One didn’t just pop out overnight in time for today’s ultrasound.

So in reality, I have had two endometriomas – one on each ovary – for gods know how many months.

The endometrioma on the LEFT ovary was 1.4cm as of May 27, 2010 at the MRI visit, and on September 8, 2010, that endometrioma was visualised on the ultrasound to measure 1×1.1cm. So it is shrinking ever so slightly…possibly.

The endometrioma on the RIGHT ovary was 0.9cm on April 21, 2010 as visualised on the ultrasound, and on September 8, 2010, the endometrioma on the RIGHT ovary grew to 1x1cm, also as visualised on the ultrasound. The MRI did not find an endometrioma on the RIGHT ovary back on May 27, 2010.

I asked my GYN to confirm the size of each of my ovaries – I guessed 3cm. She said just under 3cm. So a 1cm endometrioma is eating a third of each of my ovaries. She didn’t see it that way – she said that the endometriomas are small. But in relation to the total size of the ovary, I’d say the endometriomas are BIG.

In either case, she had already made her suggestion that I get my ass into surgery ASAP.

You know I’m TOTALLY having a pity party right now. :(

Set the clock: about 21 days

My husband had woken me up about two hours after my last journal entry, to say he was going to take off to game night, unless I needed him to stay with me. I pleaded with him to stay. He said he would, but that he just didn’t know what to do if I was going to spend the rest of the day sleeping.
I told him that made me feel guilty – that he should just go to game, then.

It was clear he didn’t want to leave me alone, but he didn’t want to not be with his friends. It took me about 20 minutes or so to rouse myself out of my pain and pain medication stupor, but I told him “why don’t I just go with you to game, then?”

He liked that idea.

We collected my heating pads, my meds, the laptop in case I wanted to blog or attempt any homework, and two books; one for school and one for pleasure.

We got to our friend’s house and to my dismay, it smelled like smoke. I have a smoke allergy/chemical sensitivity. I was grouchy at my friend C – “WHY DID YOU SMOKE IN YOUR HOUSE.”
C replied, “Yeah but that was hours ago.”

I resigned to my fate – I was stuck here. My husband was already setting up the kitchen table for game night.

I was told where I could make myself comfortable, and I was told that a friend J, who lives in that house, was downstairs with a burst ovarian cyst. I didn’t want to disturb her unless I heard her crying out in pain, so I stayed upstairs in my own little world of pain.

I tried to heat up my heating pads, only to be reminded that they do not have a microwave in that house. I was directed to a big heating pad and was allowed to use that.

The offending smoker friend also helped set me up on his wireless network, but the moment I was set up, I was suddenly exhausted again and so I put the laptop away. I couldn’t even keep my eyes open long enough to hold conversation with anyone, watch TV, or read a book.

A third friend, also named J, who lives in that house, was also not feeling well. He sat in the living room on his laptop the entire night. He’s had spinal cord injury and had surgery after surgery to cauterise nerves. He thinks nerves are growing back or something, and is in a lot of pain again. I gave him one of my Tylenol 3 because he did not have any Norco on him.

At one point, around 8pm, the stabbing right side ovarian pain returned. I ended up on the floor, moaning in pain, rocking to and fro, with the heating pad. I was on all fours, then on my back, and then I settled into an arm chair w/ ottoman for the rest of the night. Their crazy cat October decided to be nice for once, and curled up on my tummy and purred all night. I was told she only likes women, and likes women best when they are in pain – that is the ONLY time that cat is nice.
Crazy cat.

So, the pain I had on Sunday lasted through until after 10pm, despite the fact that the bleeding had subsided again. My abs and ribs still felt bruised all that day.

I got home, showered, changed into my bedclothes, and went to bed.

Woke up Monday morning pain-free and got ready for my first day back to work. I was still spotting a little. I decided to try riding my bike to work, but as I went out the door to go to work, the pain set back in, and so I abandoned the bicycling idea and drove the measly one mile to work, instead. Glad I did. I needed my energy at work to move stuff around and help set up for the new school year.
I required a total of 800mg Advil to get through the day.

Got home and was very tired, but went on to my psychology appointment. I’m seeing a shrink again ever since I had a major depressive episode at the end of July. I’m still trying to figure out if it was JUST all the stress I have been under from school and finances, or if the Cannabidiol I tried for pain management set off an even worse episode of pre-existing stress and depression.
I evened out by August 18, but that was three weeks of pure hell from one menstrual cycle right up into this next menstrual cycle, which started on August 19. I am still on anti-anxiety meds (ativan).

I spent the rest of Monday evening hanging out with my husband, making and eating dinner, and watching TV. No homework got done on Monday.

Today is a new day – I start the clock so to speak – I have 21 days til next bedridden. Today I will go to work (not sure if driving or biking yet – it’s supposed to be in the 90s today so I guess biking would be better on the ozone), and when I get home, I will force myself to do some more homework.

In about 8 days, I will have Mittelschmerz – so the middle of next week – the first week the children are back to school. Hopefully it will go easy on me while I navigate my first week in the classroom.

One last thing – about last week sometime, I developed a cough again. So this is the second virus / cough since July 18 that I have caught. And now I’m going to enter a new school year with preschoolers. I expect to be sick continually in one form or another until December. I am pounding Vitamin C and Zinc and all the rest of my supplements, and will be back in the gym by no later than Thursday this week, once the heat wave cools down. Today is Day 2 of the first heat wave of the Northern California Summer.

The last gasp – let’s hope

The pain and bleeding stopped overnight, so this morning I got up, made breakfast with my husband, ate, got dressed, and went to the weekly Alexander Technique pain management class today at the dispensary.

While in class, we are told to stand up, sit down, stand up again, sit down, etc. We are showed how to move our body in more natural alignment, rather than moving always in protective or preemptive mode because of the pain.

I had just sat back down, and I felt a trickle. I’d been in class for about 15 or 20 minutes at this point. I did not get up and rush to take any medication, however, because the instructor hates pills and the whole purpose of this class is to show us how to move in ways that lessen the pain. So I sat there, and the pain began to ramp up.

And well, I was sobbing within 10 minutes of the trickle.

No position the instructor could put me in would help. I laid on my back, and the instructor showed the whole class – they all (there were six of us plus the instructor today) had to lay on their backs.
What is interesting is that everything he was showing them, I was already doing on my own; open up the shoulders. Open up the pelvis. Put both legs down on the ground. Make the back touch the ground fully. Release those muscles.

The tears streamed down my face when the next pain flare hit. The instructor came over to me again and tried to help me by taking my left leg, bending it, and pushing it up towards my chest, very slowly. I told him that hurt a lot in the pelvic region. He then showed me how to put my right leg up, left leg back down, and roll over onto my left side. Then he had me get to all fours, then bring the left leg forward to use to push myself upright. I wailed and tears flew, and he helped pull me gently to my feet and let me sit in a chair for the rest of the session.

After the class, he said it is rare to have someone in that much pain coming to his class. I told him I’d been bedridden this weekend, and knew that today would be a respite for a few hours before the next pain wave hit. He told me ‘ahh so you took a chance’. He told me I was brave. He thanked me for coming out despite the pain, and said he hoped to see me again next week.
I thanked him for being nice and caring and helpful.

I got outside to my car and called my husband, but he was not answering his phone. I assumed he either left the house without his phone or was in the shower. Either way, though, it made me upset, because I needed him.

I stood there for a few minutes, gathering myself, and then slowly got into my car and slowly drove myself home. I experienced the usual burning sensation of pain in the pelvis, and occasional stabbing pain which made me grit my teeth all the way home. I sat hunched and to the right side because of the pain. Every time I tried to lean back in my chair and open up my shoulders and chest and straighten up, the pain was worse.

When I got within three blocks of home, my husband called me back and apologised; said he’d been in the shower. I asked him to meet me out front to help me get out of my car, and he did. He asked if the pain had come back during the class. I said yes, and he gave me a big hug.

I got in the house and was medicating with 1.5 Tylenol 3 and 600mg Advil, when the next wave of pain hit. It was knifing and in the right ovary. I nearly dropped the bottle of Tylenol 3 into the sink. I clutched the bottle and the sink and sobbed. Tears poured from my eyes. My husband stood there over me to support me. He took the medication from me and steadied me. He opened up the Advil so I could take that medication.

After several minutes of sobbing, the pain eased off, and I said I needed a moment alone in the bathroom. I knew I was passing something. Sure enough, several thick, dark clots had come through. The colouration was nearly brown, the red was so dark.

After that, I got the heating pads and sat in the hard kitchen chair. My husband was close to me the whole time, hugging on me, braiding my hair, talking with me.

In all, the horrible pain lasted roughly an hour and 45 minutes.

I’m doing better now that meds kicked in and I have two heating pads on me. I am still bleeding moderately and passing clots.

I was in less pain bleeding profusely on Friday and Saturday. Today is easily the worst of the pain – I definitely hit 9 on the pain scale today.

And now the meds are taking me under. I must sleep.

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.

Day 3 in the Underworld

Today is heavy and painful. After 7am, I woke with severe low back pain that left me hunched over further than I normally am when I get out of bed or a chair in pain. I could have scraped my fingertips on the ground, it seemed I was bent over so far.

I ate some cereal and almond milk, and consumed a whole Tylenol 3 pill first thing this morning. I went back to bed with a heating pad on my lower back, and alternated between the cat/dog and the cat/cow yoga poses on the floor and on the bed. I whimpered a lot.

Then I went back to the kitchen and reheated my corn and rice heating pads. I sat down in the kitchen chair while waiting, and my pain dissipated. So I’ve been in this same chair ever since, reheating the pads as necessary. That’s about 4 hours now I’ve been in this chair, but the pain is manageable. The moment I get up and walk to the bathroom, the pain starts again. So here’s where I’ll stay, like I should have done yesterday.

I’d also like to point out that my pain was managed well by the Tylenol 3 for the past four hours, and I have been coherent and rational, albeit moderately sleepy.

It just sucks that a synthetic pain relief pill which eats my kidneys and liver works better for pain management than a plant growing in nature, which will not kill my kidneys and liver but will put me in a vegetative state for 8 or more hours.

I’ve tried Sativa. I’ve tried Kush. I’ve tried Indica. Now I’ve tried CBD. All make me incredibly high, even on low dose, with minimal pain relief.
Actually, the Indica, Sativa and Kush INCREASED my pain.

Bleh.

I am currently on round two of medication for the day: 400mg Ibuprofen and half a Tylenol 3.

Gonna try to get some homework done.

6:48pm edit:
Around 4pm I took my third round of medication – a full Tylenol 3. So it was about 8am, 12pm, 4pm.
At 6:48pm it became suddenly hard to breathe. Maybe didn’t drink enough water today. Chugging water now and going to lay down. I am happy to have gotten about six hours of homework done!

8:07pm edit:
I do not understand why, for two days in a row, I’ve become full on high as a kite on medication taken hours earlier. Today it was nearly three hours after I had taken my last dose of Tylenol 3, and suddenly I was high as a kite and it was hard to breathe. I had the codeine suffocation like I’d taken too much of it. When I went to lay down, I began getting piercing pain in the abdominal wall, just to the left of my belly button.
And then the coughing fit started. I spent 20-25 minutes coughing violently while in bed. I coughed til my throat bled. Every breath in itched. This could have been a dust allergy interacting with the upper respiratory tract infection, I dunno. The news says there’s a Pertussis outbreak. I am supposedly vaccinated against it, but my immune system is non-existent so who knows.

My coughing fit did not calm down until I applied eucalyptus chest rub to my chest and inhaled it off of a cotton ball. I am so glad I spent the cash on that stuff at the hippie store.

Two last things: #1 the weather has been mild and sunny for the past two days and I have not seen any of it due to the pain and medication haze.
#2 I forgot to mention that I had called my GYN about the greyish clot I found two days ago, and I heard back from the doctor’s office yesterday, just as I was fighting the last bits of coherency as the cannabidiol took me down.
The person I spoke with said it’s entirely possible that my endometrioma ruptured and that could be what I am seeing what with all the grey and dark brown blood and debris. I expressed worry over what my innards must be covered in, if this is diseased material that ruptured inside of me. She told me there’s no way of knowing what, if any damage has been done. She wrote off my worry. Stupid human.

This is where it gets interesting – I Wait For It and find out just how bad the pain gets as new growths and adhesions start to take root…if in fact the endometrioma did rupture.

Go me.

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.