I Will Not Suffer In Silence

This morning my husband confirmed that he would be late to work so that he could take me to the DMV to renew my license. I hopped in the shower and made myself all pretty and off we went. We made it in time and only had to wait 15 minutes, thanks to me having made an appointment. That standing around though, first for the fee paying for the new license, and second for the photo, caused a lot of pelvic pain. There literally was nowhere to sit. I was on 1 Soma and a half a Tylenol 3 plus 400mg Advil, so I was sleepy and yet still in pain. The trapped nerve in the neck was behaving, at least.
Once I got through everything, I was told my new license will be in the mail in 2-4 weeks.

My husband had parked a few blocks away because the DMV was so packed - I overheard a woman telling someone that the Hayward DMV had closed down, that’s why the Fremont DMV, usually a quicker adventure, was now looking like Oakland (packed out the door all day long. So my husband had parked a few blocks away. I shuffled along and my husband was impatient and worrying about getting to work, so I told him to go on ahead of me. We agreed to meet at the half-way point - at the Smog Station across the street. I went in and used the restroom, and met my husband outside. We drove back home and on the way, I took another half Tylenol 3 for the pain.

The bleeding had subsided ever since my shower this morning, which I was grateful for, but of course the continuing pain let me know that more gushing will be on the way.

I got home and rested a bit, then got a burst of energy, so I tackled the pile of homework still waiting to be finished. I got five illustrations done! I hope to finish off Binder #4 tonight for my Language Arts class, and do some more work on the Rationale paper for that class. Any homework I have left to do is LONG overdue, but I will eventually finish it and hand it in, and will still receive a grade. I’ve not stopped being anxious and guilty about it but I’ve stopped freaking out over it. I come to accept the fact that I’ll still be proud of myself no matter when I turn the homework in, and that all of their threats to have people turn in homework in a 2 week turnaround were mostly empty threats poorly designed to try to motivate people through fear. Which is hilarious, considering the book Positive Discipline, which is so encouraged throughout our Teacher Practicum seminars. But who says anyone ever listens to their own advice or reason. This training center certainly doesn’t.

Around 1:50pm, I re-upped my medication and took 1 Soma and 400mg Advil. I have not needed the Tylenol 3 since this morning, because the cramps abated, and the bleeding still had not resumed.

The Soma made me sleepy, and around 3pm or so, I took a nap in my own bed. I slept for nearly two hours, and woke from some crazy dreams, which I’m sure were medication-induced. I can’t even remember them, now. I think it had to do with a classroom.
I noticed that the bleeding had resumed, but only by a tiny amount, and I was still free of cramps. The trapped nerve in the neck however was agitated again, but it wasn’t time to take meds, yet.

I made myself some late lunch just after 5:30pm, and have been on the couch ever since, just resting. I am groggy from the Soma. I am still feeling really guilty for having taken today off of work, even though I have been drugged all day and know that without the drugs, I’d be in a lot of pain. The early part of the day, I had pelvic pain despite no bleeding. So it’s still valid and it’s still reasonable that I called off for another day.

What is unreasonable for me is that my body chose to have the calm between the storm in the middle of the day, which means the Last Gasp might not happen until tomorrow. This means I stress out, wondering if I’ll have to come home sick from work tomorrow, too. FOUR DAYS! I have NEVER taken four days off work from this job because of the endometriosis. Ugh. Is it because of the new endo growth? This is month two of really heavy bleeding. Is it due to perimenopause? Is it because of leftover stress from the summer training classes? Four Days!!! I don’t even usually take THREE DAYS off in a row like this. It looks so very bad on the résumé, so to speak, and makes me consider whether I should file for disability again. Bah. I don’t miss 14+ days of work in a month, so there’s no sense in filing. They will reject me again. I really hope this job does not fire me for my increased absences. I cannot afford surgery until spring or summer, so absences will happen every month. :(

Something else I accomplished today - I checked back through my diary to see when the last time was that I took Soma when also dealing with endometriosis cramps, and it seems like it was in 2007.
I also found out from my own Things I’ve Tried page that “Soma dissociates me so nicely from the pain but leaves me moderately to severely depressed after taking it for even one day, contributes vastly to weight gain“.

What was I saying recently about how some things are best forgotten? In this case, it would have done me good NOT to forget. Now I have to monitor myself for further depression. I have already been gaining weight - I’ve gained 6lbs in the past month, and my whole body is feeling it. I don’t know if you can relate but I swear, my FAT hurts in my hips and arse. No joke.

Let’s hope I can undo the trapped nerve in the next couple of days, so I can get off the Soma again. But DAMMIT, it DOES dissociate me so very nicely from the endo pain. Blah.

Lots of TMI.

My period arrived on time yesterday (Monday) morning. I called in sick to work because I expected the pain to ramp up. When the pain did not ramp up, I felt guilty and set to housework. By 11am, the pain and bleeding came full force, and I spent the rest of the day on the couch on Tylenol 3 and Advil gel-caps.

I cannot remember how much Tylenol 3 I went through, yesterday. I want to say it was 2.5 pills. I went through 1,600mg Advil yesterday.

The pain was at times very sharp, and most of the time it was burning and gnawing. The pain was centered in the uterus and the right ovary, though sometimes the left ovary chimed in. I would wager that my pain averaged a 7 to 7.5 on the pain scale yesterday.

This morning, I shifted position in bed and a large gush literally squirted out of me, immediately soaking through everything. I scrambled out of bed before the bedsheets could be affected. The thick pad and liner, my underwear, and my pajama bottoms took all the damage.

Today was very heavy all day, tapering slightly in the evening, and now after 11pm, I am back to another surge - my body is trying to pass a clot at the moment. OW.

I also woke with a trapped nerve, because I slept on one instead of two pillows last night. The reason I slept on one pillow is that the Tylenol 3 makes it hard for me to breathe sometimes, and I felt like my chin was trying to touch my chest with two pillows. And on Sunday, my Alexander Technique instructor was telling us not to walk with our heads down, since a human head weighs as much as 20lbs and can hurt the spine if drawn forward all the time. So even while prone, I thought about this, and put my head back a bit on just one pillow so it would not be tilting forward.
That was an unfortunate mistake on my part, because I have bulging disks in my neck from a car accident many years ago, and anytime my head leans back even the slightest bit for too long, it impinges upon the nerves. So I woke with a trapped nerve.

As I wrote earlier, I wanted my husband to stay home with me today but he wouldn’t. I texted a neighbor and didn’t hear back. I went and knocked on their door but they didn’t answer. As I was about to walk to my car, dreading the drive, another neighbor pulled up to say hi on her way to the gym. I hitched a ride to the doctor with her, and got prescribed 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. I got home and the other neighbors returned my call and offered to take my muscle relaxer prescription to the pharmacy.

Due to snafu between doctor and pharmacy, my script was not filled til 2pm, so I was in burning nerve pain the entire time (in the neck/shoulder/arm), on top of the endometriosis pain.

I had by this time convinced my husband to come home early from work, and he picked up the muscle relaxers for me. I took one on the way to my psychiatrist appointment, which my husband dropped me off for. I was sedated and loopy throughout the appointment, but had notes ready and got out everything I needed to for the psychiatrist to make a decision.

She does not think I fit easily into the bi-polar category, but agrees I have some sort of mood disorder and wants to start me on Abilify right away. I told her I would research it, first.
This jives a bit with my psychologist - she IS convinced I have “bi-polar 1″ and wants me on Lamictal right away. I did not share this with the psychiatrist - I want her to see me a few times before I let the two start talking to each other.

I was miserable today, between the two painful conditions. I estimate the pain hovered at 8 all day. Even right now as I type, I am waiting for the latest dose of Tylenol 3 to kick in, and I’m whimpering in pain.

I have had 2 Soma pills today and I think I took 1,200mg Advil. I think I took 3.5 Tylenol 3 pills today. I didn’t take more than that for sure. I’ve been on heating pads all day. I’ve been laying around uncomfortably all day. At least the trapped nerve and the endo pain take turns. Right now the neck/shoulder/arm feels alright but the pelvic pain is hateful. Earlier I was able to nap a bit in a reclined position on the couch, but then my neck and shoulder started hurting again, with pain radiating down my arm again. So I got up and had some energy for a bit - which only means I could be in a sitting position for longer than 4 minutes - walking around still sets off more pelvic pain.

Now it’s back to pelvic pain. I’m going to warm the rice and corn heating pads for the 987543208573246th time today and try to go lay in bed. Here’s hoping I can sleep through the night.

I have called off work again tomorrow - I just know my body is not done with the heavy bleeding and pain, yet. I have a DMV appointment in the morning, anyway which cannot be cancelled. They sent me notice a month before my license was to expire, and the soonest I could get in for an appointment was two days before my friggin birthday. How lame. I have heard horror stories of people without appointments waiting 5+ hours to be seen at the DMV, and I’m in no condition to do that right now. So I kept the appointment and felt extremely guilty for taking time off work, but now it looks like the pain will keep me home, anyway.

My husband has developed some compassion and said he’ll see how I’m doing in the morning and may drive me to the DMV appointment. How nice of him.

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.

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.”

Five days ago, on the same day I got bad news from my ultrasound, my sister-in-law had an emergency laparoscopy for a 6cm ovarian cyst. I didn’t find out til my Ma called, two days later. Ma still doesn’t really understand what all a pelvic laparoscopy involves, but she did go over and see her daughter-in-law to help out, since she only lives a mile away.

I gave my sis-in-law a call Saturday morning, and we talked about the surgery and how recovery is going for her. Apparently while under the knife, the doctor found endometriosis and ablated what he could. She still doesn’t know what stage of endo she is at - she says the doctor talked to my brother (her husband) after the surgery. It kills me that my brother never shares what he’s told, even with his own wife…in this case about her own body. I dunno, maybe the doctor didn’t stage her. Mine just told me I was ‘moderate’ and I had to go back and confirm whether she meant ’stage III’ or not (she did).
We talked about endometriosis, and how this unexpected label might affect her from here on out. She never thought she had endo - she knew the first day of her period was always very bad, “but not like what you go through”, she told me.

You know, I really am uncomfortable with all the women who have pelvic pain who tell me, “but it’s not like what you go through.” Here is a woman who was diagnosed with the same condition as me for cryin’ out loud, so how can she still sit there and say, “but not like what you go through”?
I had to remind her that her pain is very real and valid, and it doesn’t matter if she can work through it or has to take time off work for it, even for one day, it’s still bad pain and NOT NORMAL.

I haven’t been able to feel that anyone out there has really understood that, yet.

She’s hoping she won’t have any further pain or complications, and that the ovarian cysts won’t happen again. She declared herself all fixed up and good to go. I rejoiced with her, because I want to think that she and the doctor is right.

Her own mother had a string of pelvic surgeries for chronic pain and complications in the 1980s, and ended up getting a hysterectomy years before menopause. Here’s hoping the same does NOT happen to her daughter.

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 1×1cm, 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. :(

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 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.

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:

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:

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.

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.