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.

I have been trying to score an appointment with a reproductive endocrinologist (RE) for a year, now. For one reason or another, the REs that I’d contacted never got back to me, or I had to cancel the appointments - it’s hard to track back in my calendar why it hasn’t worked out.

But today! Today I began going down the list of reproductive endocrinologists in my area as per Aetna’s website. I found that the first one - Dr. Ryszard Chetkowski - has a record against him. Some kind of public reprimand set in 1997 and not due to expire until March 31, 2010! There’s no way I wanted to book an appointment with him.

NEXT!

I called the office of Dr. Mary Hinckley and Dr. Deborah Wachs. I was told by the receptionist that the REs there will ONLY see patients who are looking to get pregnant!!!
So you have experience as an RE, you know the inner workings of your patients, you have basically what I call the user’s manual to that area of the body, but you REFUSE to help a woman with endometriosis simply because she does not wish to have children?!?!?!

This is the second time I have been given this line. The first time was on February 4, 2010, when the receptionist for Dr. David Adamson - also a RE - told me he does not see patients with endo unless they wanna get knocked up.

I was so triggered by the receptionist at the office of Dr. Mary Hinckley and Dr. Deborah Wachs that I nearly gave up. I felt the rage surging. But I took a deep breath, exhaled slowly, and went on down my insurance list.

I contacted the offices of reproductive endocrinology at UCSF/Mt. Zion, where I’d had my laparoscopy in 2007, and within minutes I scored an appointment with a Dr. Linda Giudice.

I decided to look her up - do a background check - to make sure she would be okay, since the receptionist let slip that Dr. Giudice works in the same office as Dr. Sharon Knight, who saw me back around 2001 and refused to do a lap on me, and whom I filed a complaint against after stage III endometriosis was found by her colleague, Dr. Marilyn Milkman, six years later.

What I found out about Dr. Giudice made me burst into tears.

According to the World Endometriosis Research Foundation, Linda Giudice was appointed vice president of their foundation in October 2006.
Their site says “Professor Giudice is a biochemist, gynaecologist, and reproductive endocrinologist who specialises in endometriosis, infertility, assisted reproduction, and ovulatory disorders. Her research includes environmental impacts on reproductive health, endometrial biology, and placental-uterine interactions.”

According to endometriosis.ca in April, 2008, Dr. Linda Giudice was appointed to the National Institutes of Health (NIH) Advisory Committee on Research on Women’s Health (ACRWH).

According to endometriosis.org in November, 2008, The American Society of Reproductive Medicine (ASRM) gave Dr. Giudice the Distinguished Researcher Award, adding that she has “devoted decades of her career to the study of endometriosis.”

More from endometriosis.org - “Professor Linda Giudice, has spent much of the last two decades studying the human endometrium, including normal and abnormal aspects of endometrial development and the relevance of that development to miscarriage, implantation disorders, foetal growth, and endometriosis.

“As a classic physican-scientist, whose long career of very productive research has advanced the field of reproductive medicine and biology, Professor Giudice is a very deserving recipient of the Distinguished Researcher Award”, said Andrew La Barbera PhD HCLD, ASRM’s Scientific Director. “She is unusual in that she does both basic and clinical research. She has made significant contributions to the understanding of signal transduction in ovarian and uterine cells”, he said, citing her three decades of productive research and her ongoing success in advancing understanding of signal transduction and communication among cells within reproductive tissues as the basis for her selection as the recipient of this prestigius award, which was designed to recognise meritorious research within the previous decade.”

She has no state or federal public actions against her as a medical practitioner.

My appointment with her is April 21. :)

Hopefully today was what my husband calls The Last Gasp - it’s when the pain and bleeding had gone away overnight, but returns with a vengeance the next day. That day was today.

The bleeding had gone away and hadn’t returned after my walk last night, even though the pain had returned a bit, and my legs were wobbly. I went to bed and slept soundly.

I woke this morning to horrible low back pain - enough to make me whimper. I got up around 8:30am and puttered around the house, doing slow stretches to try to loosen everything up.

I was dismayed to find that Chile had a 8.8 earthquake, which set off tsunami advisories and warnings throughout the Pacific region. While I was searching for live streaming info on the web about my region, as well as internet friends in Hawaii, my legs began to feel weak.

I got up off the couch and began massaging my lower back/kidneys. I did some more slow stretches. Then I needed to go to the bathroom. I had a bowel movement, which thankfully wasn’t too constipated.

I went to the kitchen and microwaved some leftover pancakes for breakfast. I poured some YoBaby apple yoghurt on top of the pancakes. I made some herbal tea from my acupuncturist, but I never got to drink it.

While I was eating the pancakes, the pain and bleeding resumed. All night and all morning, I had been dry - no bleeding, and no pelvic pain. I stood up and began doing slow large hip circles. I began breathing exercises.

The pain ramped up.

I started shoveling the food into my mouth so that I could take my medication. By the time I finished my food and was shoving a whole Tylenol 3 into my mouth, I was shaking from the pain. That’s about the time my husband woke up. I was pacing around the house and talking to him with a high pitch to my voice, teeth clenched. Within minutes, I was on my back on the couch, instructing my husband to help me with pressure points.
We couldn’t find the right points in the inner knees, so he tried my ankles, the bottom of my feet, and I held the points on my ears. The pressure seemed to help when my husband held the bottom of my feet. The points in my ears helped, too, but these didn’t help for very long. I told my husband I felt nauseous, but I needed more Tylenol 3. I took a half a pill on top of the whole pill I’d recently consumed.

The pain was so bad, but when I cried, tears didn’t come out. I went and sat on the toilet, and began moaning through gritted teeth. My eyes went vacant. At this point, I realised I’d hit a 9 on the pain scale.

I came back from the bathroom and tried to engage my husband in conversation to keep me from going mad from the pain. We talked about the tsunami warnings and other stuff. I yelped in pain pretty often, but carried on conversation so I wouldn’t go crazy. I had the heating pads on me, but I couldn’t get comfortable on the couch. I leaned over the arm of the couch with the heating pads on my lower back, until my calves felt like they were going to give out from the standing.

Finally, the drugs kicked in, and I became very tired. I settled onto the couch and my husband sat with me until I fell asleep. Then he went to work on stuff for his band, and eventually had to go to the studio to confer with the rest of the band on the tracks they’ve recorded.

I have spent the day continually drugged on Tylenol 3. The bleeding subsided again around 7pm, and so I decided to take a hot epsom salt bath. But first, I had to scrub out the tub, and I was still in pain, and my husband still wasn’t home.

This is a problem. But yet, I fought through the pain and scrubbed the damned tub, the shower doors and the shower walls, still streaked with husband’s hair dye. Once it was all clean, I was able to take a nice half-hour bath.

After the bath, the bleeding did not ramp up again, thankfully. I’m hoping today was the last of the cycle.

The pain has been really severe this cycle. Two things happened:
#1: Last Sunday night, I took a Monistat-1 treatment for a yeast infection caused by taking antibiotics for the sinus infection. By Monday morning my inner labia had swelled up really badly, and everything in that area burned. I showered and saw a doctor who examined me externally and said I’d have to ride it out. He suggested I soak in the tub. I came home that afternoon and told my husband I needed to soak in the tub, but did not have the energy to do a massive scrubbing of said tub.
Uh, apparently neither did he, and he didn’t care, because the tub did not get scrubbed. I did not ask him directly, “could you be a dear and scrub the tub for me?” - I just assumed he’d be a gent and see that I needed help and do this for me. But after nine years with this man, I should know better than that. I have to ask. Asking hurts my pride. It’s a cycle I need to break out of.

Late Monday afternoon, I began bleeding. At first I thought it was my period, but I had no cramps, and the bleeding and debris was light in flow and colour.

#2: I began taking the specially prepared tea from my acupuncturist - 1tsp up to three times a day. I saw her last Thursday, and she did treatment mainly for my sinus infection, but had also done some cupping on my lower back, which I’m convinced brought on some minor cramping Thursday night and into Friday.

Anyway, the light bleeding and debris lasted until Wednesday, when my actual period, complete with heavy bleeding, clotting and cramping started. I continued taking the tea.

I noticed that the pain this time around feels like a bladder infection. I stopped taking the tea last night and took 600mg ibuprofen on top of the Tylenol 3, and the bladder pain eased.

I resumed the tea this afternoon AFTER I had gone through a really bad spell of cramps this morning, and the bladder pain resumed. Could it be the cattail in the tea?

I cannot say for sure if it’s the tea or lingering side effects/damage from the Monistat.

I still feel gutted. I’m still getting sharp pelvic and bladder pains. I’m worried the Monistat did some damage. I’ll need to hire a new gynecologist this week, because Dr. Lisa Bernard-Pearl just retired from the practice this month, and I’ve not been able to see a new gyn, yet. I’ll just phone up anyone in that office and ask to be seen ASAP.

I keep feeling like today is Sunday. I’m so glad I have another day to recover before the work week begins again.

So far this weekend I missed a mostly sunny day today and two parties tonight because of the endometriosis.

Sour grapes - I didn’t wanna go out, anyway.

Back on January 21, I saw Dr. Streitfeld, who referred me to Dr. David Adamson, who is a reproductive endocrinologist.
I’ve been leaving messages for his office and for a regular endocrinologist named Dr. Grace Eng, who I tried to see in 2009 but for some reason never got to.

Anyway, today I finally got a live person on the phone at Dr. Adamson’s office, and within seconds my heart was broken, my hopes dashed.

“I’m so sorry, but Dr. Adamson is no longer seeing patients with endometriosis - he only sees patients with endometriosis who are trying to have children.”

I was shocked. I thought some sort of cruel joke was being played on me. I could hardly believe what I’d heard was real. I thought, he’s no longer giving endometriosis patients the time of day UNLESS they want babies?!?!?! What the hell kind of slap in the face is that?!

I kept my voice even and as sweet as the secretary’s voice. I asked if there are any other doctors that Dr. Adamson is referring endo patients to.
I was told he refers patients to Dr. Andrew Cook.
Well thankfully, Dr. Cook is on my short list, so I called his office, next.

I was all set to schedule a new patient visit, when the secretary gave me the lowdown:

They don’t DO insurance - they want prompt payment from my bank account or credit card. But they are happy to submit a claim to Aetna insurance company on my behalf for the rest of the money to maybe be returned to me. From their website, “We believe in health maintenance rather than just control of disease. This type of care is not accommodated in the billing contracts of insurance companies that require a rushed schedule. For this reason, Vital Health does not contract with insurance companies. Vital Health Institute specializes in excellence!”
The first visit is a $200 consultation fee, and if my insurance deductible has not been met, then it will be an additional $395 for the office visit. That’s a total of $595 out of pocket for a single office visit. Then there’s the idea of surgery with this guy, also out of pocket. My first laparoscopy was $19,000 and was covered in large part by Blue Shield, our old insurance plan. My out of pocket cost on that was $1,500.

I told the secretary I’d have to talk it over with my husband and give her a call back.

When I got home, I also remembered that Dr. Streitfeld had said he thinks I could have adenomyosis, which could be detected on a MRI or a PET scan. If I want to skirt around seeing Dr. Cook in the short term, perhaps my current GYN can just send me for a MRI or a PET scan…so I logged into Aetna’s website and looked up the pricing. I did not see PET scans being offered, but MRI is. For in-network, a MRI will cost $1,772. Of that, I am unsure how much my co-pay will be. I had a echocardiogram in 2009, which cost over $4,000. There were two or three insurance adjustments made, and I ended up paying around $470, which is still a lot of money, and took me a year to pay off, because I only make $11/hr and my husband doesn’t like shelling out his own money, even after he assures me he will (but that’s a whole other can of worms).

I sulked.

Here I am, trying to do the best thing for my health; I am trying out alternative therapies, which are costly and out of pocket. I am trying to find a new gynecological surgeon so I can get surgery number two after the first one three years ago never gave me any pain relief, and now I find out that the type of surgery I am interested in (excision vs. cauterisation) is also going to be an out of pocket experience.

On top of that, I have been at my recent job for 10 months with only partial training for the job. This keeps me at assistant status, which keeps my pay low. I need to shell out $1,700 for classes THIS SUMMER, which will bump me up to head teacher, which will increase my salary.

The dilemma is this: stay on the job and take the courses, but continue to miss work each month due to the pain, OR start seeing Dr. Cook, save every penny I can, and get surgery number two, which will require me to take weeks off work to recover from the surgery. When I get back to work, I’ll be playing financial catchup for a year or more.

I even mentioned my financial frustration to my husband in chat when I got home from work.

Me: i’m beginning to feel the reality - i can EITHER start on a new path with a new surgeon and get that second surgery in hopes of long term pain relief, OR i can go to montessori teacher training.
Husband: at least for now?
Me: right
Me: this year
Me: those are my choices
Husband: well, there is the lottery…:/

This exchange left me feeling not only frustrated, but mad.

Before you even think to ask me about credit cards, yes, I have two, and they are already maxed out since our honeymoon in May, 2009, and my having to live off of them since that time because my husband doesn’t like to spend his money to support me. Even though he says he’s fine with it, the money is not there whenever I need it. I had an acupuncture appointment last week, and forgot about it til the last minute. I asked my husband for financial assistance ($50) the night before the appointment, and he got real upset with me. He grudgingly wrote out the check.
On Friday, I asked my husband if it would be possible for him to withdraw up to $100 in cash on Saturday so we could look at what the dispensaries had to offer me in the way of alternative medication. He said yes, and seemed to not have a problem with this. He patted himself on the shoulder that day for supporting Prop 215 “by putting my money where my mouth is”. We got inside the dispensary and I priced out a few items. I wanted to try the butter, the mocha mix and a tincture. The cost would come to just under $60.

My husband told me I could EITHER get the butter OR the tincture. His face went grey with how expensive each was (about $22 and $36 respectively).

So for a man “putting his money where his mouth is”, he withdrew $100 for me to get what I wanted to treat my pain, and then only permitted me to use $28 of it.

This is a man who makes $65,000 MORE than me each year, and he’s suggesting I try the lottery to cover basic needs of raising my income via schooling, and surgery to alleviate or minimise chronic pain.

We have a joint bank account. It has been empty since the honeymoon.

We’ve had several talks - or rather the same talk over and over. Nothing is changing.

He pays all of the rent on our apartment, and he often helps pay for my expensive groceries (see my list of allergies and whatnot). He has taken over the long distance phone bill and the land line bill.

I pay for my cell phone, my auto insurance, some groceries, my two credit card balances, the DSL connection, our renter’s insurance and earthquake insurance. That alone takes up most of my paycheck every two weeks.

My husband is on his way to band practice right now, and I will be asleep when he gets home, so I emailed him, requesting that we have yet another financial talk. If I could only get official confirmation that he will not support me financially, instead of this wishy washy bullshit, then I can formulate a plan to care for myself.

If I am on my own financially, 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.

Today was my first day back to work, after having missed Monday and Tuesday.

It is my intent each month to give a “postmortem” or summary of what I went through, and my thoughts on what I went through. I don’t always remember to do this - let 2010 be the year I begin remembering this crucial type of blog entry.

The bleeding subsided by yesterday evening. Residual cramps pestered me throughout the night and into today, but it was minor enough that last night I was able to go to a friend’s house and watch the season premier of LOST, and today I was able to work a full day with minimal to moderate pain. I did have to take 400mg Advil gelcaps once today.

I cannot recall if I have laid out exactly what my job entails, so let’s do that now - I just created a page called A Work Day In The Life Of Steph.

When I got home from work, I threw off my work clothes and got into my pajamas, and tucked myself in bed with the laptop and some heating pads for the rest of the evening. I so need the extra rest.

Reflecting back on this past weekend, it was pretty scaring emotionally. If I had my way, I’d never touch marijuana again. I had gone into the weekend expecting that my new medical marijuana ‘card’ would bring some sort of good alternative treatment into my life.
Although I have misgivings about the last two times I tried marijuana (I smoked it and the pain grew worse), and although I’d read one study which showed that in vitro, “THC exerts palliative effects in cancer patients, but produces adverse effects on the endocrine and reproductive systems“, I was still hopeful that cannabis edibles could still help me relieve some of my pain.

On Saturday, while medicated on Tylenol 3 for the pain, my husband drove me to the local smoke shop, where I priced some vaporizers in case I wanted to try that route again. He then drove me to a medical marijuana dispensary, where we registered ourselves, toured the facility, and checked out some tinctures, powdered mixes and butter. That day, we bought an undetermined cannabis blend put into a peppermint mocha mix, and a blend of butter called “Kush”. A friend had told me to get a strain called Indica to treat pain, but I forgot to ask specifically for that while we were at the dispensary, and it didn’t seem that the labels on the edibles stated directly whether something had indica or not.

Saturday night, I tried the butter around 11:30pm. I only had about a teaspoon’s worth on a gluten-free waffle. It took over half an hour to kick in, and the high kicked in first, but what I remember is that for about an hour and a half I was completely pain-free. Now, this could just be as simple as my cramps abated on their own.
Or there was something to the butter. But after an hour and a half, the cramps did return, and I was still uncomfortably high from the butter, so I did not want to consume more.

On Sunday around 1pm, I tried 1tbsp medicated mocha mix to ease the pain, and mixed it with a cup of hot goat milk and 1tbsp Trader Joe’s sipping chocolate. I did not want to gulp it all down at once, because I was unsure of the dosage. The mocha mix was a single serving, but I know my body better than that, and eased way off, only digging out one of the estimated three tablespoons available in the “single serving” pack.
Again, it took too long for the medication to kick in. Once it did, the high hit me and I went on a 7 hour bad drug trip, accompanied by a pathetic pain dissociation attempt. I bled like a stuck pig all day. I experienced maddening gnawing uterine and pelvic pain, which led me to agonising choking sobs twice that day. I could not take any other pain medication for fear of getting even higher than I already was, which was very uncomfortable for me. I did not experience any pain relief until after 7pm - when I consumed 800mg of Advil gel caps.

On Monday and Tuesday, I stuck to Tylenol 3 and Advil all day and was made much more comfortable. As I stated of the Tylenol 3 on Monday, February 1, “I knew when my body was in pain, because the top of my skin would twitch, or my whole body would jump. Then it would take up to three full seconds for my brain to register that the twitch meant huge stabby pain was happening. But by the time it got to my drug addled brain, all my brain had as a message to give to me was a faint recording of a scream, if that makes sense.” The pain dissociation was full and complete compared to the medical marijuana’s lame attempts.

I looked up the word my friend had told me - indica - to find out more about it. According to Urban Dictionary, “Indica is not slang for marijuana, but one of the three species of marijuana; Sativa, Indica, and Reduralis. Sativa is more of a skinny, tall, lanky, and less yielding plant that produces a mind high. Whereas Indica is more of a small, broad, and usually a higher yielding plant that gives you a couchlock body high.”
MarijuanaStrains.com pretty much says the same thing.
I agree with my friend, I need the Indica.

I looked closely at the packaging for the medicated mocha mix and found no info whatsoever as to the blend of medical cannabis in it. LAME.
I examined the package for the butter and could only find the word ‘Kush’, so I looked that up. According to wikipedia, “Kush refers to a subset of strains of indica cannabis”. Over at MarijuanaStrains.com, they say that the Kush blend gives a cerebral high.

Alright, lesson learned. Ask more questions about what can give the best “body high” or dissociation, and make it abundantly clear that I do not want anything that is not Indica.

And then we’ll go for round 2 of medical marijuana treatment. As I said earlier, if I had my way, I’d never try medical marijuana again.
Alas, I am also sick and tired of people constantly asking me, “have you tried…?” down to the finest detail. So my answer for “have you tried medical marijuana?” is incomplete, until I can, with authority, say YES I HAVE TRIED BOTH SATIVA AND INDICA STRAINS.

In the alternative medication department, this coming Sunday, I have a phone appointment with my acupuncturist to discuss further herbal remedies for endometriosis. On Sunday January 31, I stopped taking the herbal pills she’d prescribed for me in early December, because I was upset with the side effects that were manifesting.
Throughout December, I was only taking one pill a day, when I remembered at all.
Starting mid-January, I finally started remembering to take two pills twice a day, and according to which blend I needed to be on during my menstrual cycle. This is when I began to notice the negative side effects - first I started getting manic-depressive. I attributed it to the New Moon. Then I got manic again, around the Full Moon. Instead of blaming it on the moon, this time I became consciously suspicious of the herbs.
I normally do not suffer from mania, you see. The last time I did, I was on Yasmin.
Now, here’s another problem - I told myself I would research the herbs before taking them, but then I felt pressured by my acupuncturist to start taking the pills NOW, because she wanted me to start getting better NOW.
It’s not her fault I felt pressured. I wanted to start feeling better NOW, too. So I threw aside the research I had started and just took the damned pills, hoping for pain relief.
What I got instead was manic-depression, to the point of being super hyper and anxiety-ridden to sobbing uncontrollably within the span of a few hours. And it happened on more than one day. And then my fingers started splitting open and bleeding again. I checked my diet - nothing I could think of to be causing this allergic reaction….

…except maybe the herbal pills.

So I emailed back and forth with my acupuncturist last weekend, and just stopped taking the pills altogether on January 31. She says her supplier told her that the pills are both gluten and yeast free, but something is triggering the atopic dermatitis, because my fingers cleared up perfectly within 24 hours of stopping the pills.

It’s getting too late tonight to do it, but I would love to go meticulously through the ingredients list for each brand of herbal pills - both the Unicorn Pearl and the Harmonizing The Moon - to try to root out the dermatitis. I already know the ginseng and/or the dong quai is what brought out the mania. And I find it quite interesting that those two herbs, which are touted to acupuncturists as being ‘warming’ and ‘good’ for gynecological problems, are listed as BAD elsewhere.
For example, MedicinePlus says “Avoid use of ginseng in patients with hormone sensitive conditions, such as breast cancer, uterine cancer, or endometriosis.” Also noted on that website for side effects of ginseng:
“heart palpitations, rapid heart rate, leg swelling, nausea/vomiting, or manic episodes in people with bipolar disorder”.
I’ve never been diagnosed as bipolar on my own - but I did exert bipolar tendencies when I was put on SSRIs back in 2000-2001. It is thought by later psychologists that the meds pushed me from my official Major Depression diagnosis into bipolar territory.

But the ginseng made me bipolar.

Good thing I saw a new psychiatrist today.

Regarding dong quai, MedicinePlus says, “It remains unclear if Dong quai has the same effects on the body as estrogens, if it blocks the activity of estrogens, or if it has no significant hormonal effects. It remains unclear if Dong quai is safe in individuals with hormone-sensitive conditions such as breast cancer, uterine cancer, ovarian cancer, or endometriosis.” Also noted as a dong quai side effect on that website is skin rash. Same with ginseng.

In the physiological department, I am still spotting this evening and will likely continue to do so for another day. I am constipated from consuming the Tylenol 3, and I still have moderate low back pain. I am super tired like I always am after having spent a few days writhing in pain and medicated to the gills.

Oh, and my gym membership card is ready to be picked up - I need to give the personal trainer a call and see if Monday February 8 is a good time to get together. Hopefully she can work well with me and my mobility issues, both with the osteoarthritis and with the endometriosis.

Today I am super tired, have mega pms cravings, and low dull uterine and ovarian cramping. Doom is due by Sunday at the latest.

Yesterday I allowed myself to feel slighted by some stranger on IRC. I felt like she gave me a bunch of shit about my pain issues, and basically wrote me off because I have not yet seen a reproductive endocrinologist, nor will I try further hormonal treatment for my pain issues.

The whole conversation on IRC started with medical marijuana questions - I wanted to know if Prop 215 had worked out well for anyone locally. I did get some good advice, but this one person stuck in my craw.
She asked what my pain issues are. I told her I suffer from stage III endometriosis. What happened next is what often happens - people ask me the same tired old questions - “have you tried this for the pain?” YES. “have you tried that remedy?” YES. “have you had surgery?” YES.

Honestly, people, do you really think I would live with this illness for 23 years and NOT try all the basic shit in the books, first, then surgery, then go from there?

Then she asked if I’d seen a reproductive endocrinologist. I told her no, I’ve not been to one, yet. This is where she got all huffy with me and basically wrote me off as some ignorant wretch.
I looked back through my records - I’d tried in January and again in April 2009 (last year) to see an endocrinologist. I forget why the appointments fell through.
The person on IRC seemed like she was telling me that I obviously didn’t try hard enough and therefore I must be happy to be in pain all the time.
I told this person that I’ve seen other specialists in the past 12 months, but she stopped talking to me.

I wanted to yell at her and say IF I HAD THE INSTRUCTION MANUAL TO MY BODY, I’D HAVE READ AND IMPLEMENTED IT.

Why did I feel so slighted by someone I don’t even know?

The answer is that I’m in defensive mode with the world at large over my illness - all the time.

People range from well-meaning to outright abusive towards me with regards to my illness. The people in question range from absolute strangers online and on the street to co-workers, friends and family. All. the. time.

I can tell the same people what I’ve tried and what I’ve not tried, what I’ve been through with what treatment - several times - and still get the same questions asked again and again. This is precisely why I started blogging about my pain, the what I’ve tried, the doctors, the vitamins, the diet in general. I’m always repeating my story to people, and therefore I’m always defending my rationale for trying or not trying this or that treatment. Everybody’s got an opinion. Everybody thinks they know best. Hell, it seems like everybody thinks I must be a total fracking idiot, living with endometriosis and not doing a damned thing about it.

Even presenting all this information on my website goes unnoticed it seems. People still ask me the same tired old questions. I copy and paste a url to them. They don’t care. People just want me to shut the hell up and be healed already. They want me to quit my whining. They want me to stop bringing them down.

This same type of write-off I get from people extends to my doctors and specialists. They all get tired of me after awhile and cast me off. That’s why I’ve seen 15 doctors in 9 years and am now on my 16th and counting. My current gynecologist lost her patience with me about a year ago because I wouldn’t get another cauterisation type laparoscopy by a different surgeon - I want an excision laparoscopy and I need to be sure of the doctor before I go and get the surgery. Also, I work very hard for miniscule money - I make $11/hr the expensive Bay Area of California, and I have a very expensive diet, no thanks to all of my damned food allergies. Also, I cannot take time off work just like that. I need 11 or more days off work to recover from surgery. It took 11 days and I was still in a heap of pain upon my return last time, and that was a desk job. I have a preschool job now. Also, there’s the co-pay. It cost me $1,500 out of pocket last time, but I was making $19/hour. I have different insurance now and it’s a different surgery that would be performed compared to last time. The co-pay could be much more. It doesn’t matter though - my gynecologist thinks I can easy peasy just take the time off work and get that “minor” surgery taken care of anytime! Oh and you know, I was not told about in advance, and did not ask for those hideous stretch marks I got from being inflated with carbon dioxide for the laparoscopy.

She actually used phrasing suggesting I liked being in pain because I would not schedule a second surgery.

She actually gave me an ultimatum of January 2010 to find pain management and other specialists, because she will not be refilling my Tylenol 3 prescription anymore.

Goodbye, Dr. Lisa Bernard-Pearl. You worked so well for me in the beginning, but in the end you turned out to be just as mean as the rest of them, casting me aside, giving up on me. You gave up on me. You threw me away.

On January 6, 2010, I had an apointment to see a pain management doctor. I was on my way there when traffic got snarled. I phoned to say I would be a few minutes late, and the receptionist told me to just turn around and go home, because the doctor would not see late patients. I told her I left work on time, but there was unforseen construction holding up traffic. She asked me if I had the new patient paperwork. I asked her WHAT PAPERWORK.
Apparently paperwork is usually snail mailed to new patients, but a particular receptionist at that office emailed it to me. I told the person on the phone I never got it.
I came back home in tears and looked through my email. I found the email - it had been sent in an unprofessional manner - it looked like spam because it had no subject line, was from a stranger’s first name only, and contained an attachment. OF COURSE I never opened it. I called the office back to complain about the woman, and they did apologise. However, there was no seeing that doctor again - it was her last day in that office - she’s moving to an office 50 miles north of me. They told me another doctor in that office would call me but that never happened. In the meantime, I’ve been too angry to call that office back, and too apathetic to find another pain management specialist this month.

However, on January 21 I saw gynecologist Dr. Streitfeld, on January 23 I saw Dr. Ellis, and on January 29 I will see Dr. Fredian. Today I put in a request to see Dr. David Adamson (referred by Dr. Streitfeld), who is a reproductive endocrinologist, and I also put in a request to see Dr. Grace Eng - the same endocrinologist I tried to see last year around this time.

All of this costs money. Most of this takes time off work. Both are difficult for me, because I miss enough work as it is by being bedridden, no workplace I’ve ever been with wants me to also miss more work on top of that for doctor visits, let alone recurring surgeries.

You know, the record on repeat is enough to make me spit. Really. I was sick of it three years ago. I was tired of it five years ago.
Just go back through my entire journal. I’ve got diary entries dating to the 1980s. Have a good read. And don’t offer me any more insight, suggestions or advice about endometriosis and treatment options unless I ask for it.

Postscript ~
I felt damned near homicidal tonight. I spent all night writing this blog entry. I stepped away to do laundry and grocery shopping, and ported over some more really old diary entries. I took half a Tylenol 3 to medicate against the rage. Rage is the best way to describe how I felt all day today and still feel to a degree even now while drugged.

Yesterday I saw Dr. Roger Stephen Ellis, also known as the Pot Doc. - January 2010. My husband’s friend referred me to Dr. Ellis on January 16 as we both sat talking about our pain issues at a mutual friend’s birthday gathering.
She swears by this doctor, who advocates for medical marijuana patients. She says he’s the only doctor the California Medical Board certifies as above-board with his paperwork and patients. I guess this is supposed to make me feel like the local police and the federal Drug Enforcement Administration (DEA) would leave me alone if I started using marijuana.

Anyway, a week later, on January 23, I had an appointment with Dr. Ellis, and he took one look at my surgery report and diagnoses and wrote me a prescription for medical marijuana, good for six months. I have to provide ongoing documentation which states I still suffer from the pain, and in six months I can re-up on a year-to-year basis. It’s one more thing I will try officially, on the record, and note whether or not it has worked for my chronic pain. I have yet to get the prescription filled at a local pot club.

I would like to note for the record that I have in the past self-medicated with marijuana during my period, and both times, the cramps got worse until I was crying in agony. The first self-medication was sometime in 1997 or 1998 with street-bought pot. The second self-medication was sometime in 2004 or 2005 with medical-grade pot that a friend had. Both times, I smoked it.

Someone told me on January 24 that marijuana use elevates estrogen levels in the body. Endometriosis feeds off of estrogen, so that could be why my pain got worse. I found one study which corroborates this, but I need to read up on the issue a lot more.

I’m feeling bad for myself today.

I saw a new GYN today - his name is Dr. Hank Streitfeld and he was referred to me by two of my co-workers. We went over my surgery report, all the doctors I’ve seen for endo, my diet and herbal remedies, other specialists I’ve seen, my expectations, and what he does, can do and can’t do.

Basically, he thinks both cauterisation type laparoscopy and excision laparoscopy has its place. He prefers Lupron as his drug of choice for fighting endometriosis. He agrees with me that I can’t be on hormones or Lupron to treat the endometriosis; he is able to cite enough studies where women are as sensitive as me to drug therapies and went cuckoo. He agrees with me to steer clear of the Nezhat brothers. He had good things to say about Dr. Andrew Cook and Dr. David Redwine, and he also mentioned a Dr. David Adamson who also does excision surgery - said I should definitely see both him and Cook to get all my questions answered.

Then he told me that due to the lack of pain relief from surgery, I should consider that I might have a condition called adenomyosis. I’ve seen the word mentioned in the endo forums, but never researched it. According to the Mayo Clinic website, “Women who have had prior uterine surgery, such as a C-section or fibroid removal, are at greater risk of adenomyosis.” Well does laparoscopy count as prior uterine surgery? Did I have adenomyosis before the laparoscopy or do I have it as a result of it? Did it just come on naturally in addition to the endometriosis?
Dr. Streitfeld said that adenomyosis may be detectable on an MRI - so that’s something I can consider - cuz the only other ‘real’ diagnosis of adenomyosis comes through removal of the uterus and dissecting it to find whether adenomyosis is present.

Dr. Streitfeld was every bit the cool doctor my co-workers said he would be. I liked his no bullshit demeanor, his relaxed and calm style and his staff. I’ll totally recommend him to people. I’m just sad he couldn’t be the doctor for what I need.

I’m at T-minus 11 days until the next bedridden. Even though I got good referrals out of Dr. Streitfeld, it’s just the idea that I’m still going doctor to doctor, trying to find help for the debilitating endometriosis, and on top of it, now I’m told I should consider the idea that I might have adenomyosis on top of the endometriosis. And so the fighting spirit is drained. I’m crying like a scared child; “Mama, I don’t wanna go to that bad place again!!! Why can’t anybody help me mama?”

On Sunday, December 13, I had started taking the Chinese herbal medication specifically prescribed by my new acupuncturist for the endo pain.

On Monday, December 14, I woke up with pain roughly at a 4 on the pain scale, and pushed through it emotionally to get ready to go to work. I wanted to see if I could make it through a day of work on the Chinese herbs and Ibuprofen alone.

Before work, I lifted TWO mattresses - we had two stacked on on top of the other, and we’ve been wanting to get rid of the old mattress underneath the new one, but have had nowhere to keep it until Bay Area Recycling could come and get it. I needed to get to the mattress below the top mattress, and stand it up on end so that it could be moved out of the house.
My husband raced into the bedroom after I’d already moved the mattresses, and in a panic he cried out, “I was going to do that!!!” I told him it was alright, and went off to work. I really did not want to leave him to do all the work. He still had to get the danged thing out of the house on his own.
After having moved the mattresses, the pain ramped up to a 5 on the scale, but I pushed through it, because I’d already taken the herbs and Ibuprofen.

While at work, a four-year-old boy threw sand in another boy’s hair, and when I asked him why he’d done that, he refused to look at me and kept playing in the sandbox. I told him, “You may leave our (outdoor) classroom and go back to your class, now.”

He ignored me.

I got right next to him and said his name, and repeated myself. He stopped playing in the sand and turned his back on me.
I said, “Either you can walk back to your room or I can carry you.” He folded his arms, so I picked him up and carried him in my arms like a baby back to his class. I set him down outside his door, and said, “Ok, go on in”.
At this point, he had a meltdown and began screaming that I would not pick him up again. He bent double and refused to go inside the classroom. His teachers obviously did not hear him outside the door wailing, so I picked him up again and carried him inside the room. He fought this time, kicking and screaming, so I got him into the room and set him down right in front of a pillow chair. He crumpled down into the chair head first and wailed. I explained to the assistant teacher what happened and she gave me a look that said, “ah yes, this happens all the time” and I left the room as she walked away from the boy, not even speaking to him (probably letting him get it all out before she addressed him - the teachers are not mean).

I relay all this info about my day to shed light on the fact that I lifted a child not once but twice, after having lifted two mattresses earlier in the day, all while menstruating. The pain level of course increased after lifting the child, but not enough to be debilitating.

A half an hour later, I was scrubbing tables and closing up the outdoor classroom. Another half hour later, I was on lunch duty. The pain ramped up while I was on the playground supervising children at recess. I did not pick up children. I did not run after children. I did a lot of kneeling and bending to talk to children between lunchtime and recess, though, and this is what really set off the pain.

What truly stirred the hornet’s nest however was the cleanup after recess, in which I was left with the sweeping. Go on, go get a broom right now and start sweeping. Pay attention to your sides and pelvic muscles. Seriously, that did me in. After sweeping, I collected my things, told my co-teacher in a shaky voice that I was leaving early, would not be holding afternoon outdoor class, and would likely not be in on Tuesday, either. She told me she would close up the rest of the room for me and I thanked her. I notified everyone else who needed to be notified of my leaving, and the secretary and financial director grilled me about my mental condition before letting me leave. They wanted to make sure I was not incoherent from the pain. They watched me swallow half a Tylenol 3 to allay their fears that the pain would claim me before I got home. I promised I would call them when I got home.

Every step I took walking the block and a half back to my car was excruciating. I called my husband to let him know I was coming home early, since he was already working from home, anyway. My voice was shaky and I was rapidly losing coherent thought. I got to my car and made it safely home, and called work to let them know I’d made it.
When I got home, I took the second half of the Tylenol 3, and spent the rest of the day bedridden and napping. Every time I got out of bed, the pain and bleeding ramped up.

I did manage to place calls to a pain management specialist and a gynecologist, in order to get that scratched off my list, because my current gynecologist has made it abundantly clear in the last 12 months that she is done trying to help me medicate for endometriosis, and has given me til January or February to get a pain management specialist to help me, instead of calling her for Tylenol 3 refills every couple to few months.

My husband went to the grocery for me and even made dinner for me. We watched some TV together and then I tried to go to bed and couldn’t, because I’d napped on and off all day. I uploaded some pictures from a weekend trip we’d just taken, and then went to bed.

In all, I had ONE Tylenol 3 pill total on Monday, and I took my Chinese herbs TWICE. I took Ibuprofen TWICE.

I tend to forget about journaling when I’m NOT in pain… I noticed that the last time I journaled here was 16 days ago.

Well! I am happy to report that for 10 straight days, from November 23 to December 3, I ranged from pain-free to low intermittent pain! Yay!
I must note that I’ve done nothing drastically different with my diet. This of course gets a yay and a boo, because I keep holding onto the idea that my diet is what exacerbates a lot of my pain. I’ve been eating chocolate, cheese, refined sugar, caffeine … all “forbidden foods” … and no pain resulted.

I did have about half a cup of champagne - maybe less - on November 28, and two days later, I experienced intermittent shooting pains in the front uterus/bladder region. However, that was also day 7 of the new cycle, when I ovulate, and will often experience mittelschmerz. So even consuming booze can’t likely be directly linked to causing pelvic pain in that instance.

This leaves me feeling that there’s nothing causing this good health aside from the endometriosis WANTING to behave. I had not embarked on any new medical treatments until December 3rd.
I’m getting as much exercise as I normally do. There’s no new medications or supplements in my diet, but I have been a bit more regular with taking evening primrose oil and niacin.

While I am ecstatic for having a nice run of pain-free living, I am absolutely furious because I cannot say for fact that I MADE myself pain-free via diet/excercise/medication/supplements/etc etc. It seems that it’s only because the bastard disease wants to behave right now.

But throughout those 10 straight pain-free/low pain days, I smiled, breathed and enjoyed each minute of healthful living.

On December 3, I went to a new acupuncturist. According to my calendar, I’ve not been to an acupuncturist since June 12, 2008. I had given up on acupuncture for awhile, because I didn’t feel the Chinese herbs were helping, and the Chinese male acupuncturist didn’t make an effort to try to see me regularly. This new acupuncturist is female, anglo redhead, and wrestled with endometriosis for years. I was referred to her via a friend. So I think I’m off to a better start this time around.

After my acupuncture session, my husband and I went to our friend’s house for dinner, and they were getting into the wine and whiskey (not together mind you, some had wine, some had whiskey!) I took a small sip of a nice whiskey, and I drank two shot-sized glasses of port with our friends.

The next day, on December 4, I experienced right side ovarian pain, which was stabbing intermittently throughout the day.
Today, I experienced (and am still experiencing) ovarian pain on BOTH sides. The feeling is of stabbing intermittently, with continually low dull pain in the ovaries, including the lower front uterus. Low back pain is also noted, and all day I have had moderate pain radiating down the outer hips to my outer thighs. There is occasional stabbing pain in my hips/thighs when I bend forward or sit.

Is it because I drank a small amount of alcohol Thursday night? Or is it just that my period is due in one week?

I’d like to note for the record, according to my calendar, that in 2008, I did not consume ANY alcohol for 77 straight days. Five days later, I ended up in the emergency room because my cramps were so bad that even I was scared.

So I’d like to officially NIX any idea that consuming alcohol recently is what brought on my cramps, and make the motion that my cramps have set in simply because It Is Time - I’m one week out, and this for my body is normal to be getting cramps.

The cramps in question this time around have been hovering at 4 - 5 on the pain scale.

Still, I’d like to give up cow’s milk-based cheese and ice cream for a few months straight and see if that has any effect. It’s the only cow’s milk-based food I still consume directly.
Indirectly, whey is in a lot of foods, and so I know I still consume cow’s milk indirectly on a regular basis. I’ll go with omitting the direct ingestion (cheese, ice cream), first. I rarely eat cow’s milk-based ice cream anymore anyway, so that should be easy enough.

I have a lot of pessimism in this - I firmly believe that any lack of pain is simply due to the illness behaving itself, and therefore the blame game on my part emotionally just really needs to stop already. I was born with this illness for cryin out loud. It has a mind of its own. I don’t think anything I do will influence it without adding side effects and/or consequences to the rest of my system.

This doesn’t mean of course that I’ll go out and get smashed, gorge myself on ice cream, and eat 50 pizzas. I still have allergies out the wazoo to contend with, and a desire for overall healthfulness in general.

I am so thankful for the 10 straight pain-free days I was able to have this month. I hope that once I emerge on the other side of the coming cycle, that my body can meet, if not exceed that record.

Oh - one more thing - I cannot remember if I told you where I’m at on the medication front. I spoke to my gynecologist by phone last week, and she expressed disappointment that I wanted yet another Tylenol 3 refill. The vicoprofen just wasn’t working out for me - I was getting dangerously depressed on the stuff after just a couple of doses during my period. I go through about 10 Tylenol 3 a month, which exhausts my 30-day supply in 3 months. So I call my gyn every 3 months. She told me she thought I was going to see a pain managment specialist. I told her I’d not been able to find one to see me in the evenings or on weekends, because as a teacher, I NEED to be at my job at my scheduled time Monday through Friday. She didn’t care for my answer. So She’s given me a deadline - no more refills after this one. Come February/March, I’m on my own, she’s done prescribing for me. Yet another doctor who thinks I’m drug seeking. This is totally common for women suffering with endometriosis to be treated in this fasion by their doctors, and it’s pathetic.

I told my gyn I had an appointment with an acupuncturist, but she didn’t count that as “pain management”. Many doctors still consider acupuncture as folk remedy. Whatever. I’m giving it another shot. I’ll of course also be contacting her pain management and surgeon recommendations.