So there’s going to be a second surgery.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

He DID do his numbers and we DID compare things.

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

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

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

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

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

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

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

Slept 11 hours again

And the cough came back last night, full on with lung gunk. Still coughing a lung this morning. Ugh.

Still super tired but now I’m guessing it’s because I’m still sick, not because I’m catching up on sleep.

This is not the first, second or third time I have had a relapse in an upper respiratory tract infection after spending days bedridden. The reason is that I’m hopped up on a lot of codeine when I’m experiencing excruciating pelvic pain, and the codeine also acts as a cough suppressant. Once I come off all the codeine, the upper respiratory tract infection resumes as it was before.

Despite the fatigue and cough, I am going to spend the day cleaning house and I may attempt a bike ride.

Homework is on hold today and possibly tomorrow. I can’t live in a dusty, mildewy house when I’m sick because I’ll get sicker. The house had no care that I can detect over the week that I was living in a motel for school. It didn’t get cared for at all during the commute days or intermittent motel stays, either. My husband insists he did a lot of housework, but I can only see dishes and laundry and catbox were done. That is not enough. We have severe dust and mold allergies. The bathroom is a nightmare again and hasn’t been cleaned since I last did it a month ago.

The dust and cat hair tumbleweeds threatens to eat us alive.



Sick once again

I was fine around the school kids – I had acclimated to their germs.

It’s the adults coughing and breathing their sickie germs near me that killed me last weekend, and this is NOT the first time.

I’m full on with the gunk and the sea lion cough – the cough started within a day of exposure and keeps getting worse.

Excuse me if I leave a party or event with sick adults next time. Better yet, they should stay home! There were five sickie adults at a dinner party! Ugh.

So once again, I get to go through bedridden menstrual pain hell – with a bad cold.

And people wonder why sometimes I want to torch humanity.

Current treatments

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!).

Pet Peeves

I know people need to make a living. I know there’s a food chain, even and especially where it comes to health care and caregiving.

Knowing this about people doesn’t mean I like or condone their actions.

Ever since being officially diagnosed with endometriosis, I have been seeking out alternative health remedies for my illness, because the surgery did not provide pain relief.

The biggest pet peeve I have regards what I call information hoarders.

Here we are, women suffering horribly with an incurable, debilitating disease that we were born with, and all we want is to find out what we can do to ease our symptoms.

Someone comes along and says, “I have found the secret to what works best and my pain is GONE! Click here to BUY my online book for just $23.95!” No snippet of remedies or anything, just trust this individual and buy the book.

Others come along and hawk their Nattokinase and Lycopene supplements, insisting that for only 49.95 you can CURE endometriosis!
Well get this, buddy, FIRST OF ALL, there is no cure for endometriosis. SECOND OF ALL, I am allergic to tomatoes and nightshades! Take your Lycopene and shove it!!

And yet others will come to you as well meaning, caring, alternative health practitioners. They promise to ease your pain, but really they are promising to rob you blind!
Take for example the “Clear Passage” people – they are using half-assed Chi Nei Tsang and charging people $5,000 to travel to them for a week of treatments! The cost of travel is NOT included in their fee!
I got their brochure awhile back because they’d refused to list any prices on their website. Once I saw the pricing in the brochure, I saw red.

And now, the whole point of today’s rant – it had to have a prehistory to lead up to this, but this week’s “winner” for bringing out the rant is the Qigong/Chi Nei Tsang practitioner who got back to me the other day and sounded urgent for me to come back in for treatments again.

What I didn’t tell you was that she wanted to charge me three times what she was charging me previously. She says she’s changed her sales up and now the detox treatment has to come bundled with two Chi Nei Tsang touch treatments, for a total of $325.

I talked with my husband about it. We looked at my bank account and looked at our joint account (which is supposed to be for my schooling). We couldn’t find the extra money for the treatment. My husband said he didn’t feel comfortable ponying that amount of money to this lady, when he doesn’t believe her previous treatments have helped me. I argued the point, saying I hadn’t seen her often enough to know for sure, and with that, should I also stop seeing the acupuncturist, because I sure as shit haven’t experienced pain relief from that, yet. Or should I increase the visits to these people and see how it goes for a few months?
My husband remains doubtful that I will gain pain relief from these treatments. I called the Chi Nei Tsang lady back and left a message letting her know I could not do the package deal, sorry.
I told my husband however that I refuse to stop seeing the acupuncturist, and that she and I have an open dialogue and are trying to figure out the best continued treatment for me, AND she is keeping her pricing affordable to my situation.

The Chi Nei Tsang lady called me back and offered her condolences, and said that if I still wanted to come see her in the future, she could give a discount. She didn’t offer anything for the here and now. She didn’t offer to cut out the Chi Nei Tsang sessions and only give me the supplements for the detox diet. I began to suspect her so-called caring and sincerity.

So I decided to find a way around the Chi Nei Tsang lady’s road block. She’s previously given me the ingredients list of the detox diet, now all I have to do is hunt the ingredients down, right?
I found a few old bottles of supplemental pills that still have not reached their expiration date. Looks like I could buy some vegetarian pill capsules and fill them with clove for example, like what I’m seeing in the bottles.

I examined the bottles closely.

Well look at that! I thought I’d examined the bottles before and hadn’t seen a web address, but this time around, I found a web address! I think I’ll check it out!

And lo and behold, the entire detox ingredients list is to be found, supplemental pills and bulk tea treatments and all – FOR HALF THE PRICE I WAS BEING CHARGED – on a website called Self Health Resource Center (

Again, ladies and gentlemen, my pet peeve. Here I am, trying to get honest advice and treatment for my debilitating, chronic pain, and instead of being told to check out a website called Self Health Resource Center, where I can buy some supplements, I am instead given the idea that she works with some supplier somewhere only for practitioners such as herself, and that I can’t get this on my own, and more to the point, she blatantly marks up her prices to make a profit off of MY suffering!!!


Now, here’s a thing…
That website is also known as “The Original Dr. Hulda Clark Products Manufacturer.”

Who the hell is Dr. Hulda Clark?

Apparently she was a quack and a charlatan!

You can read about her here, here, and here.


Why is my Chi Nei Tsang practitioner, who supposedly is schooled through the Chi Nei Tsang Institute (, buying products from another school of medicine, so to speak?

I looked up the person who founded and runs the Chi Nei Tsang Institute – his name is Gilles Marin. I have always taken issue with this Gilles guy, because in the detox diet instructions, there is a recipe for 7 Vegetable Soup, where it says, “This is an old family recipe that has been passed down to Gilles’ grandmother from her grandmother who was the witch-doctor of her native village from Southern Provence in France.”

Riiiiggghhhht. I wanna see a genealogical workup on this guy.

Instead, I will look him up on the Internet.
Gilles Marin has written a book called Healing From Within With Chi Nei Tsang.
This book cites “The Cure for All Diseases” by guess who?

Hulda Clark.


I was also curious as to whether Gilles Marin shares my Chi Nei Tsang practitioner’s idea that I have manifested my own illness – that it’s all my fault that I have endometriosis and other autoimmune disease. I wanted to know if she learned this from him or if she thinks this independently of him.

According to an article on Open Exchange, Gilles Marin is quoted as saying, “The spirit revolts in an attempt to bring us to our senses, in a fit of rage or act of rebellion, sometimes without a cause or apparent rational meaning. This rebellion can manifest in our behavior but also as physical symptoms and illnesses. From this perspective most chronic illnesses are an attempt from the spiritual body to make us pay attention, heal, and change. These illnesses are healthy reactions to unhealthy situations. Without such reactions from our spirit, we fall off the way (Tao) that serves our life purpose. Enthusiasm disappears. When we live a dispassionate life, there is only senseless depression with its inner message saying that since we are not enjoying life, we don’t deserve to live!

So let me get this straight. I began having chronic urinary tract infections from early childhood. I started my period late, at the age of 14, and from the very first year, I was in debilitating pain, often vomiting from the pain. But it is I who brought this upon myself? I caused endometriosis?

Gilles Marin also talks on the Daily Om about negative emotions creating disease. Again my argument stands – my illnesses came to me in utero, assholes.

So now here I sit, knowingly just having spent money last night on the Dr. Hulda Clark website to obtain the same supplements for far cheaper than my Chi Nei Tsang practitioner was charging me for them, and I have to wonder:

When I went on the detox diet in November, 2008 – did my 4cm ovarian cyst shrink back to 1.6cm within a month because I was taking those supplements, or because my body just naturally began reabsorbing the cyst?

I can’t really do a control test – I can go through another month of the supplement detox diet, and then ask for another ultrasound in August to see if my ovarian endometrioma has gotten any bigger, but the thing is, an endometrioma on the ovary is NOT a regular ovarian cyst. It’s a mass that doesn’t reabsorb.
But it can’t hurt to see if the growth is staved, right? My GYN and my primary care doctor both say there’s nothing I can do about the endometrioma but watch it to see if it gets any bigger.
It grew .5cm in a 36 day period. Gods knows how much bigger it’s grown since the MRI on May 27th.
Once it gets to 5cm, I need to go get a cancer test. Which will of course come out flagged, because I have endometriosis, which always sets off a flag on the CA 125 test.

My choices are:

  1. Sit back and wait (i.e. do nothing)
  2. Modify my diet again NOW
  3. Start the detox supplement diet in addition to modifying my diet.


I am going to choose #2 and #3.

And I’m also going to practice calming the hell down and forgiving all these damned charlatans out there for using me and abusing me.

Hind sight

I’ve been going back through the past year of my endo blog in order to get as much detail as possible into, 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.


Only three people responded to my LJ query on the gabapentin, and two out of three replies were negative, saying it does little to nothing for the pain. Two out of three replies said you can feel very drowsy/drunk, which is what everyone else is saying, too. Even taking it at night, one will wake up quite groggy the next day, so said Dr. Pham herself at my meeting with her last week.

Several people have said you cannot take gabapentin casually – you must ramp up slowly and taper off very slowly or it can cause seizures and other negative side effects. Several people noted zombie-like traits.

I even talked with one of the parents at the school I work for, cuz she’s a neuro-something professor at a local university. She also said one must taper very slowly off the stuff, and that the two big issues with it are suicidal ideation and heavy fatigue.

And then on Saturday, I went to a friend’s birthday party and found out his girlfriend just started taking gabapentin for cluster migraines. She was a total zombie and her boyfriend looked forlorn over it, but nothing else was stopping the cluster migraines, which were landing her in the E.R.

I read again about all the suicides associated with gabapentin, and I’m terrified of this damned drug.

At work today, I mentioned the drug to a co-worker who had suggested I try valium for the pain. I told her I’d tried that and also muscle relaxers to no avail. She asked if most of my pain was actually nerve related and I said yeah, my doctors think so, and they want to put me on neurontin. She thought this was a great idea, and balked at my reasoning for not wanting to try neurontin.

She didn’t know about the suicide risk but after I told her she shrugged and said to stay positive and Just Try It, See What Happens. I think she said she’d taken neurontin before, and it didn’t work out for her, but not for the reasons I was stating.

Ya know, I’ve been down that road.

First of all, she has a *totally* different condition than I do – it’s brain-based, not chronic pelvic pain-based.

Second of all, I’ve done the Just Try It, See What Happens bullshit at the request of parents, doctors, well-meaning friends, acquaintances and strangers alike.

It doesn’t turn out well for me.

But let me tell you why.

I’m diagnosed with Major Depression and have become suicidal on antidepressants and hormonal treatments alike. I’m not going to try out epilepsy medication (neurontin) or another antidepressant (cymbalta) cuz ya know, I think I already know how it will turn out. I need to go to school this summer. I need to have my own mental faculties in place – I can’t afford to be a zombie or a suicidal freak right now. Sorry. I’d rather live and suffer with endometriosis than die a wretched death due to medicinal side effects. In case you hadn’t noticed, I have tried a lot of medicine and treatments in my 25 years of dealing with this illness. I have learned to recognise MY gut feeling on a course of pain management, and I have not always trusted my gut feeling, and I have suffered for it. My gut feeling is usually correct. Other people’s suggestions on my course of treatment are usually incorrect.

After ending my convo with my co-worker (who incidentally has had this attitude with me before, when I was going through repeated sinus infections), I felt angry.

I know she means well. I know she has no idea what I go through. It’s not her as a person that I’m angry at. It’s the ignorance and acting as an authority on a subject one really knows nothing about in all circumstances that really sticks in my craw. It’s a trigger, a button, a pet peeve.

To quote from O-Ren Ishii in Kill Bill:

The price you pay, for telling me what to put in my body, or telling me with authority how to successfully treat this illness in my body, and expecting me to blindly obey is,

I collect your effin head.

Now if anyone has got anything else to say, NOW’S the effing time!

Thank you.

Pain Management doctor

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.

The Qigong practitioner is fired.

I was just entering phone numbers into my hand-me-down iPhone, 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.

Still trying to find a new GYN/surgeon

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.