I Will Not Suffer In Silence

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.

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.

Today the pain and bleeding have subsided. I have only had minor pain with the occasional stabbing in both ovaries and the uterus. I’m still constipated. I have not had any pain meds yet today.

I’m still sick with a cough and chest congestion. I have not taken any cough syrup for it yet today, because it has codeine in it, which is constipating. I’m just coughing the junk up. Maybe tonight I’ll take more cough syrup.

Today I had an appointment with the pain management shrink, so I checked our financial status to see where I should pull money for the co-pay and parking fees. This is when I got a huge shock; apparently the school decided to deposit two checks at the same time after having held onto them for a couple of weeks. Apparently I had budgeted the money, assumed the checks were cashed, and continued spending money from the account without looking. This is something I always do. I have created lists and lists. I have printed my account balances out. I have tried spreadsheets and checkbook registers….and STILL I do not keep a tight enough mental handle on my money. STILL it flies out the door unchecked.
This time around, I even went so far as to print out the bank statements nearly every week and set it on my husband’s desk so he could provide the ‘checks and balances’ - the oversight - in case I had failed.

Well, he didn’t look at the balances too closely, or didn’t care. Worse, he didn’t keep the printouts with my side margin maths. He thinks he just glanced at the stuff and threw it away. There goes the oversight!

So we are in the hole - the joint account is completely drained, with bouncing checks and overdraft fees. My personal bank account has less than $300 in it (I need at least $300 in order to not be fined each month for falling below balance).

And there’s my credit cards - both are maxed out; one is at $2K and the other is at $6K. Most of that damage happened in May, 2009 for the honeymoon, and the cards were finished off in May, 2010 when we went to Michigan. Payments on those cards are due in the next week.

So now I owe my own husband over $1,000, and I still owe my employer at least $100 for a hotel stay during summer school, and I still owe the training school $325 for the last class I took.

Then there’s the medical bills - I owe hundreds of dollars in co-pays for the MRI, the ultrasound and the Emergency Room visit I had because of a co-worker wearing Chanel perfume to work - who knew I’d go nearly anaphylactic?

The school costs and the credit cards are due ASAP. The medical bills can wait.

I have ongoing appointments with all kinds of medical professionals - acupuncture, the head of pain management, the pain management shrink, and massage. I can no longer afford any of this unless my husband hands me the cash on the spot.

I’m going to make yet another list for him tonight, because he said he will crunch numbers and see what he can offer me.
He’s already paying all of the rent, most of the groceries, and all of the bills. *sigh*

I am not scheduled to return to work til the end of August. I have so much homework that I NEED that time off, anyway.

The financial mess I’ve gotten us into has wrecked me emotionally. I thought I’d planned well enough to avoid this, and yet here we are. I cried at the pain management shrink today, but not about the finances. I cried about my illness necessitating all of these appointments. I skirted around the financial issue and focused on the quality of life issue. I said I just want to go back to ‘blissful ignorance’ and just stop trying to MANAGE this illness, when it just seems that there’s no managing it.
The truth is that I NEED to learn how to manage my stress and my pain, so I NEED these pain management clinics. I just think however that I can get what I NEED for FREE through the dispensaries, thanks to my Prop. 215 certification. So I’ll make out the list of services I need and see if I can get everything I need from the dispensaries, and sadly I will have to fire UCSF because it’s a huge financial drain.

In other news:
Today I am starting the kidney and liver detox diet. It lasts one month. I am not going to do the gallstone flush at the end of the month, because I do not believe it works. I do however still believe in the detox itself. Here are the details:

DETOX WEEK 1

Night before first day - Make kidney tea.
1 Tbs. Tea mix into 1 cup cold water in non-metal pot (enamel or glass)
Heat to boiling point (do not boil) and then turn down to simmer for 20 minutes. Leave out overnight. Can be made a few days at a time, extra to be refrigerated.
Warm (do not boil) before drinking.

Breakfast: (or at any time of day) Kidney Tea: Strain tea. Warm and drink one cup.

Supplements before meal: 2 clove capsules

Supplements with meal:
1 ginger
1 Uva Ursi

Lunch: Supplements before meal: 2 clove capsules

Supplements with meal: 1 ginger

Dinner: Supplements before meal: 2 clove capsules
7 wormwood capsules

Seven Vegetable Soup OR Parsley Tea 1 cup boiling water, steep a few tbs. chopped parsley for 3 minutes, strain & drink (or at any time of day)

Supplements with meal: 1 ginger
2 Uva Ursi

Before Bed: 3 tsp. Black walnut tincture in 1 cup of water

Make tea for following day if needed

Do not consume caffeine in any form (coffee, sodas, teas, chocolate) as it is counterproductive.

I forgot to make the tea so I’ll do that this afternoon. I forgot to take the 7 Vegetable Soup out of the freezer, so I just did that now and it should be ready for me by tomorrow night.

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

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

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

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

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

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

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

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

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

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

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

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

ADHERE!

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.

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

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

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

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

My current treatment plan:

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

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

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

I’ve been going back through the past year of my endo blog in order to get as much detail as possible into MyMonthlyCycles.com, an online symptom tracking tool which will print out nifty data and charts for me to take to my new GYN. My second appointment with her is on June 23, and we’ll go over the MRI results and talk about my treatment options.

In going back through my blog, I found the following, which made me cringe:

“Because I took a new job, I can no longer make my appointment with the gynecological oncologist or my endocrinologist. I had to cancel both because they are during working hours. Of course, they do not offer weekend or evening appointments, so I will be forced to take time off work. I’m going to see if I can get the appointments on Friday, may 29 - the day after I return from our honeymoon.” - April 16, 2009

Earlier this year, I was feeling slighted by someone on the web who admonished me for not seeing a reproductive endocrinologist yet. I wrote, “I’d tried in January and again in April 2009 (last year) to see an endocrinologist. I forget why the appointments fell through.” - January 25, 2010.

When I finally did get in to see a reproductive endocrinologist (in San Francisco) in April, 2010, a friend wrote me to say, “I told you last year you should go see that doctor!”

Of course, the mail conversation we’d had about our doctors was in a shell-based email account that dreamhost was in the process of screwing me out of, and I’d lost my inbox, containing the past year’s worth of email, including the above doctor conversation.

I did see the gynecological oncologist like I said I would - I saw her in August, 2009. I don’t like her personality, her treatment of me on that visit, or her choices for me to consider, so I will not be seeing her again.

I am acknowledging that the delay of a year in getting to a reproductive endocrinologist was caused by me.

It was initially caused out of fear of losing a newly acquired job.

It was secondarily caused by me wanting to see a specialist in the East or South Bay rather than having to cross the Bay Bridge and navigate San Francisco. At this point I tried to see Dr. Adamson and then Dr. Cook, and was told by Dr. Adamson’s office that he’s only treating endometriosis patients who also want to get pregnant. I was told by Dr. Cook’s office that I have to pay out of pocket for all visits, because they’re too good to deal with insurance companies. This of course delayed me further, until I went back to my insurance book and went down the list of reproductive endocrinologists (R.E.) there, and accidentally stumbled upon the one my friend wanted me to see a year earlier.

I had been saying I didn’t know why it took so long to get in to see an R.E., so now I’m admitting it was because of myself.

Mind you, getting in to see an R.E. even a year later than stated goal is better than not getting in at all. I want people to know that even with seeing an R.E., I could continue to live with this debilitating pain for another year, five years, twenty years, etc.

People act like I’ve wasted my time and went through unnecessary pain for a year longer than I should have. People make it out like I’m some dumb hick who doesn’t know better for her own self.

The reality is that the R.E. I saw in April 2010 might not be able to help me, either.

I saw an R.E., okay?

She (Dr. Giudice) offered me gabapentin, which everyone I talk to who has taken it or who has a degree to study it (note: three friends and one biopsychologist), plus many more acquaintances on the Internet endometriosis forums who have been on the stuff…. ALL SAY it turns you into a friggin zombie. And there’s also the fact that it makes you twice than the ‘normal’ population to become suicidal. Which, I dunno if you’ve been following along at home, but I’m already diagnosed Major Depressive and I wrestle with suicidal ideation as par for the course in battling chronic pain for the last 25 years.

Dr. Giudice also talked to me about another surgery, understands that I will not undertake further hormonal treatments because I became suicidal on the last two (yasmin and loestrin), and from there she ordered an intravaginal ultrasound and an MRI to have a clearer look inside of me. She also told me point blank that my refusal to try out further hormonal treatments and my hesitancy at trying gabapentin limits the scope of what she can do for me.

Not getting to Dr. Giudice a year earlier has not shaved off a year of my life expectancy.

I am defensive because of the person back in January who gave me such shit. I am defensive because of all the doctors who continually tell me to Just Try It, despite me being right in every instance that shit won’t work out for me, because my body is so sensitive to “medications”.

I was originally mad at myself when I read my old journal entry today. Now I’m back to just being mad and frustrated in general.

Endometriosis sucks. Immune Deficiency sucks. The Industrial Revolution and Automation and the discovery of how to create Plastics and Chemicals sucks. The 20th century ruined my life. Read Silent Spring, by Rachel Carson. I’ll be glad to leave this poisoned planet when the time comes, anyway. Stupid people for killing the planet. Stupid humans.

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

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

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

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

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

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

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

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

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

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

Of course.

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

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

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

Anticonvulsant drugs tied to increased risk of suicide

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

Common Migraine, Epilepsy Drugs Linked to Suicide Risk

Certain Anticonvulsants Linked to Increased Risk for Suicide, Violent Death

Yeah uh… how ’bout no.

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

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

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

Learn and move on…

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

So, the details of the visit:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*big sigh*

Hopefully I’ll be able to sleep tonight.

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

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

But it has to happen this way.

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

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

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

I was just entering phone numbers into my hand-me-down iPhone my husband gave me, and I got to my Qigong practitioner. I did a web search on her to make sure I had an updated phone number, and wondered if she had a new website out yet.

Boy was I disappointed when I found a meetup group she’s formed. It’s called Law Of Attraction. On her meetup group’s homepage, my Qigong practitioner lists herself as a member of “The Oakland Law of Attraction / The Secret / Abraham Hicks Group”.
Yep, it’s the same “Law Of Attraction” I’ve ranted about before. This bullshit comes from the book and film called The Secret, which came out four years ago (in 2006).

I was SO pissed off when I first saw that film. I think it was in 2008 - that’s when I began ranting about it in my journal - because in the film, there’s this “metaPHYSICIAN” who goes on about how all of people’s complaints - including medical complaints - are created by the individual against oneself (minute 15:22 and minute 23:52 in the video).

After viewing that film, an experience I had a year earlier, back in 2007 or early 2008, made a lot more sense to me.
While I was attending The Business of Metaphysics classes at the local coffee house, I met a Qigong practitioner who described what she does for a living. I was so excited based upon her job description - I wanted to see if she could help me with pain management.

However, upon talking with her after class, she was openly hostile towards anything I told her about my endometriosis pain.

She kept correcting me whenever I said ‘my illness’, for example. She dismissed me right away and told me she could not help me because I refused to see that basically I was to blame - I had manifested the idea that I am sick (a.k.a. she belongs to the “Law of Attraction” cult), and she said that in reality I am not sick at all. I proceded to start calling this woman but she never called me back. I became really angry at this person and at any person who would tell me that even before I was born, when the genes were being passed to me via my mother, that I was somehow responsible for the endometriosis that would rear its ugly head once I began to menstruate at the age of 14.

But I continued reading up on Qigong and really liked what it was about, so I became determined to find another practitioner, telling myself that the first woman I met is seriously flawed as a human.

I found another woman - the woman I saw for the next year or so. I was really happy with her services, and wished that she wouldn’t be so flaky - she offered Qigong workshops but it never lasted long. I attended what I could, but then she’d be out of reach again - after awhile, I stopped asking her when she thought her next workshop would be. I did go to her house to get Chi Nei Tsang treatments, however. It was during one treatment - it might have been my last treatment - where she gently suggested that I had created the endometriosis because of a traumatic experience I had with a boyfriend when I was 18 years old. I had told her no, that I’d been vomiting from severe pain from endometriosis for 3-4 years previous to that. She kept trying to impress upon me though, during the Chi Nei Tsang treatment, that I likely was the cause of my own illness, and that all of my negative experiences in life, all my sadness and woes since birth had eaten at my ovaries and uterus, as that is where emotions gather in a woman and create illness, she said.

Since I had enjoyed her services for several months, I basically brushed off what she was telling me. I was in denial. After all, she wasn’t being rude or hostile at me like that other Qigong woman. But after the session and from then on, it did stick in my craw a bit that she’d say those things to me.
As it turns out, I really couldn’t afford her services after that, anyway, but I guess it’s for the best, since she’s one of THOSE people.

And now she’s fired.

I’d like to remind the world that one is born with endometriosis, one does not acquire it - especially by negative thoughts. Oh but that research came out in January, 2009 - three years after The Secret appeared. I guess the charlatans and the medical community at large haven’t caught up with the times.
Ah but doctors are still telling patients to have a baby; that getting pregnant will cure endometriosis, too.