It’s a F.A.Q. for my period!

It’s a F.A.Q. for my period!

 


 

Q. Who is George?
A. That’s the code word my friend’s sister gave for her period in jr. high school in the early 1980s so she could talk about it with her friends without other students knowing what she was really talking about.

By the time my friend got to high school, she shared her sister’s code word with me and the rest of our friends, and thus was born a tradition.

I went a step further with it and said that george was an angry punk rocker with flaming red hair. He liked to punch and kick me in the stomach. By the time I reached college, I personified george further – he looked exactly like Vyvyan from The Young Ones.

vyvyan-youngones

 
In 2008, I finally began watching the remade Battlestar Gallactica series, after so many of my friends had said how awesome it was. It wasn’t long after that, I began using a similar phrase to Commander Adama; I would say stuff like “The clock resets for 26 days” (like Adama saying “Set the Clock” or some such.

Even more than that, I wrote in September 2008, “But now…now that I know as of this year that telomeres are abnormally long in women with endometriosis and don’t shed like they’re supposed to – they just keep growing and become rogue cells growing outside of the uterus – well that sounds more like a cylon analogy to me than some mean punk kicking me in the stomach for the hell of it. But continuing with the [Battlestar Gallactica] theme, I’d say that since there are many copies of cylons, that the ones inside of me all look like Vyvyan. :p

vyvyan_cylon

 
Q. Why define the code word and clue everyone in – why not just keep it secret like you did in high school? Why do you always talk about George in your journal and in public – isn’t your period supposed to be something private? What makes you think people want to keep hearing about your period?
A. I outed george when I began an online journal in 2002. I had already outed george to any new friends I made over the years, male or female, because I realised by the time I got to college that my periods are not normal. I just felt the need to start bringing awareness to my condition.
It was in 1996 that a male Gynecologist told me about a condition called
Endometriosis, and he told me I hit every symptom in the book for it. I decided to educate everyone I knew about Endo, because I was sure I had it. Thus, I outed George not only to my friends, but to anyone who would discover my online journal – in the hopes that anyone else with this illness who might find my journal could realise that they’re not alone.

 
Q. So a Gynecologist told you that you hit every symptom in the book for Endometriosis, and you began telling people you had it for sure? Isn’t that a bit like hypochondria?
A. It would be hypochondria, yes, if it were not a fact that I have Endometriosis. But this takes explaining.
I knew I had Endometriosis – I just had to prove it. And the doctor who told me I hit every symptom in the book for it is the same doctor who tried to get me scheduled for a
laparoscopy (laparoscopy is the only way to obtain an official Endometriosis diagnosis).
However, I was in the middle of preparing to move to California, so I decided to put off the laparoscopic procedure, because healing time would exceed the time it took to pack up the house and actually haul my life out to California.
It took eleven more years, but I finally found a doctor to officially diagnose me with Endometriosis. I was not a hypochondriac – it was finally proven that I do have Endometriosis. Some people out there are not comfortable with women saying they have Endo before they are officially diagnosed – they believe it misleads the public somehow. I do not share this view. If your doctor says you hit every symptom in the book for Endo, and you’ve been in severe pain from your period from the onset of menses as a pre-teen or teenager, I see nothing wrong with educating yourself and others about Endometriosis. Just be sure to also get that official diagnosis (laparoscopy) so that you know what stage you are at, and so you can start seeking better treatment options for yourself.

 
Q. What exactly is Endometriosis?
A. From the
Endometriosis Association website:
Endometriosis is a painful, chronic disease that affects 5 1/2 million women and girls in the USA and Canada, and millions more worldwide. It occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus — usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity. Other sites for these endometrial growths may include the bladder, bowel, vagina, cervix, vulva, and in abdominal surgical scars. Less commonly they are found in the lung, arm, thigh, and other locations.

“This aberrant tissue contains endometrial glands and stroma. The glands secrete substances that irritate the surrounding tissues, sometimes causing them to bleed. The immune system responds to the release of these substances by releasing inflammatory proteins that rush to the site of disease, causing swelling and inflammation. The disease itself and the inflammatory response to the disease can cause the patient severe pelvic pain and, over time, scar tissue may form and bands of scarring may develop, sticking the pelvic organs together (adhesions). Many patients will find that their symptoms fluctuate during their monthly cycle, with a worsening of pain at the time of menstruation and sometimes also during ovulation. These fluctuations are believed to be due to changes in hormone levels and their effect on the activity of the endometriosis. Endometriosis contains estrogen and progesterone receptors. These receptors modulate disease activity by responding to the levels of estrogen and progesterone in the surrounding environment.”VitalHealth.com

The cause of Endometriosis is unknown.

 
Q. What are the symptoms of Endometriosis?
A. The
Endometriosis Association website lists the following symptoms:

 

  • Pain before and during periods
  • Pain with sex
  • Infertility
  • Fatigue
  • Painful urination during periods
  • Painful bowel movements during periods
  • Other Gastrointestinal upsets such as diarrhea, constipation, nausea.

 
In addition, many women with endometriosis suffer from:

  • Allergies
  • Chemical sensitivities
  • Frequent yeast infections

     
    Of these symptoms, I match the following:

    • Pain before and during periods
    • Pain with sex
    • Fatigue
    • Painful bowel movements during periods
    • Other Gastrointestinal upsets such as diarrhea, constipation, nausea.

     
    And I also suffer from:

    • Allergies
    • Chemical sensitivities
    • Frequent yeast infections

 
Q. Why didn’t you get a laparoscopy done as soon as you moved to California? What took you so long to get officially diagnosed?
A. When I got health insurance after moving to California, I saw several doctors over the years, some who concurred that it was likely that I had Endometriosis, but they couldn’t schedule me for surgery because I didn’t have enough insurance coverage to pay for the surgery. Most jobs I had from 1997 to 2006 were HMO insurance, which is preventative health care insurance and doesn’t cover someone with an actual ongoing health condition. But I didn’t realise that’s how insurance worked for a long time. I figured insurance was insurance.

In 1999, I finally got a full time job (i.e. not a contractor position), and so I set off to see doctors about surgery again. A referral to a surgeon was arranged by 2001, and off I went. But the surgeon, after interviewing me for a few minutes, vetoed the plan for laparoscopy right there on my consultation visit with her, saying I only have Dysmenorrhea. She didn’t hesitate to take a cervical biopsy though, which came back negative for cancer. Shortly after that, my job laid me off, and my medical benefits went with it. I’m still bitter about my dealings with her. I’m convinced that the surgeon denied me a laparoscopy because I only had HMO coverage instead of PPO.

From 2001 to 2006, the jobs I held were contract positions with no health insurance, and I couldn’t afford to get my own health insurance. In 2006, my then fiancé landed a job which gave him and I the insurance I needed for the surgery – PPO insurance. A friend recommended a good surgeon, I went to see her, and she put me on the fast track to surgery. I was diagnosed with Stage III Endometriosis on February 1, 2007, thanks to Marilyn Milkman at UCSF.

 
Q. So what did you do before 2007 to manage the pain if you couldn’t get surgery to actually diagnose you with something?
A. I ate a lot of Ibuprofen and Tylenol 1, and any narcotics offered to me. I also started modifying my diet in 1999.

From 1999 to 2005, I cut the following things out of my diet:

  • cow meat
  • pig meat
  • bird meat
  • deer meat

 
And since 1999, I’ve tried to severely limit the following things in my diet:

  • cow milk (i’ve failed repeatedly at this one in the form of ice cream)
  • MSG (i’ve failed at this one on and off in the form of ramen soup or Cheetos or Doritos)
  • cheese (i often fail at this one)
  • partially hydrogenated crap (added this to list in 2004, holding steady)
  • corn syrup (added this to list in 2004, finally got it 99.9% eliminated by 2005 – inadvertent ingestion continues to occur well into 2010 because it’s in everything)

 
By 2005, I started to do a major overhaul of my diet. Yet another doctor had a clever idea as to what was REALLY causing my pain. She thought I had Irritable Bowel Syndrome (IBS), and perhaps NOT Endometriosis. So, to humour her, I eliminated beans and bell peppers from my diet, and re-eliminated dairy. My digestive tract noted improvement, but the menstrual pain continued. The doctor gave up and told me to try chiropractic to manage the menstrual pain. So I fired her, too.

It was in 2005 that I realised that the vegetarian diet in general was not preventing the pain from recurring, so I reintroduced bird meat in November of 2005.

In Spring of 2006, I decided to eliminate sugar, wheat and yeast for a couple of weeks. A friend had told me about yeast overgrowth back in 2004, so I decided to see if that was part of the problem. While I was at it, I’d been wondering if wheat and gluten were also a problem, so I eliminated that, too.
When I reintroduced wheat and yeast, all hell broke loose in my body. I developed dermatitis on my fingers, and suffered horrible hypoglycemic attacks. My bowels were a mess and I wondered if I really DID have IBS after all. I researched online and found out about gluten intolerance, also known as Celiac Disease.
I went to an allergist and a blood test turned up negative for Celiac Disease, but the allergist said I do have a marked sensitivity to gluten.

So, since April of 2006, I have eliminated wheat and yeast from my diet, which basically means no breads for me. I don’t technically eliminate all yeast, since I still eat sugary stuff once in awhile, and natural yeasts in the digestive tract feed on sugar, which can lead to yeast overgrowth again.
Just by eliminating wheat and yeast (no pastas, no breads), I lost 30 lbs (14kg) within three months.
In November of 2006, I reintroduced cow, pig and deer meat to give myself better dietary options, since I was basically on a diet similar to Atkins and felt like I was starving (and I was sick to death of bird meat as my only meat option!). By 2009, I again cut cow meat out of my diet, followed by pig meat in 2010.
A study in 2004 says that red meat and ham are bad for women with endometriosis, so I stay away from it.

I have, since mid-2006, found a lot of gluten-free pre-packaged food options, so I don’t feel like I’m starving, anymore.

But here’s the rub – even going on a gluten-free, red-meat restrictive diet didn’t stop the menstrual pain.

 
Q. So after all that, the diet modification didn’t work. Why not just go back to what you were eating before if it didn’t stop the pain?
A. Because the diet modification revealed other health issues – namely a gluten sensitivity. So I remain on a gluten-free diet despite the fact that it didn’t stop the menstrual pain.

 
Q. What now, then?
A. As a result of my surgery in 2007, I got the diagnosis I knew I had:
Stage III Endometriosis. Not only that, but it was found that there was a 1cm implant of endometriosis on the thin layer of tissue between my uterus and my bladder (called the bladder reflection). Since it was so close to my bladder, the surgeon did not attempt to remove it. In the surgical world, a 1cm implant is pretty big. On top of that, my right ovary was stuck to the pelvic sidewall, and the left ovary was stuck to the back of my uterus!!
The surgeon lasered off what Endometriosis she could find on the uterus, ovaries and pelvic cavity (leaving the endo on the bladder reflection), and unstuck my ovaries and put them back where they should be.

After surgery, I was told I should go on synthetic hormones to suppress the disease from returning. I was told to start my first pill on the first day of my period.
The pain on that period was worse than the pain I usually experienced with my monthly period, because the area was still healing from surgery.

The hormone I was put on is called Yasmin.

People who know me well know that I did NOT want to put synthetic hormones in my body. I’d tried this once back in 1990. I took Loestrin for 3 months and quit because I was such a raging psycho hosebeast on the hormones, and this was the lowest dose available at that time.
But after surgery in 2007, I felt I had no real options left. The disease is 100% guaranteed to grow back, and can grow back anywhere from a few months after surgery to a few years. I can either wait for it to grow back and get back on pain meds, and then get another surgery, or I can try taking hormones to supress the disease from growing back.

I decided I’d try the hormones, especially since my first period after surgery was more painful than periods before surgery. I’m told that Yasmin is the lowest hormonal dose available today.

I started Yasmin on February 19, 2007 and was told to stay on it without a break for one year.
I started having all sorts of side effects from the Yasmin (see March 4, March 14, and basically March 21st through April 6th, 2007). The most devastating side effect was the mental depression, which rapidly spiraled out of control in March, leading up to plans for suicide and a near 51-50 hold when I went to the doctor about the suicidal ideation.

I fired the Yasmin on April 4, 2007 – the same week that my innards started sloughing off the scabs from surgery and I was getting breakthrough bleeding of old blood and clots (which is normal and a relief that my body is still healing normally post-op).

Going off the the hormones means George was back again. And with George was the same old pain. I spent days off of work on Tylenol 3 and a heating pad for the pain – just like old times.

Three years after my first surgery, I saw a second surgeon at UCSF because my pain was increasing. The left ovary was stuck to the back of the uterus again, and I had endometriomas on both ovaries. The surgeon (Dr. Linda Giudice) was confident she could excise the endometriomas and laser off other endo lesions and leave me feeling better. I asked if she would take my ovary if she could not excise the endometrioma, and she responded confidently that she would not take the ovary.
Once she got inside, however, the medical instruments bumped into my bowels, causing a huge bruise and swelling. On top of that, she was not able to excise the endometrioma. And she did not take the ovary, even though we had discussed it, because of medical liability – she had not given me consent forms to sign.
So once again I had no relief from surgery. Imagine my bitterness.

 
Q. Can’t you just get a hysterectomy to cure yourself of endometriosis?
A. I won’t get hysterectomy because as stated above, I have endometriosis on the bladder reflection. Taking the cervix, ovaries and uterus won’t remove the endo on the bladder. Putting me on Hormone Replacement Therapy (HRT) after hysterectomy will continue to flare the endo already on the bladder, since endo FEEDS on estrogen.
Oh and there’s that other small issue of me going
completely effing insane and suicidal every time I’m put on hormonal treatment.

Hysterectomy is not an option. End of subject.

 
Q. Oookay… so uh…what is this “last gasp” thing you’re always talking about?
A. The term “
last gasp” stems from the idea that someone or something is making one last big effort to do something to prove a point. Many years ago, my ex-spouse noticed how nearly every month, my cycle will be really bloody and painful, then it will ease up, then it will attack again so to speak, then it will ease up so much that I’m spotting, and then WHAM! 24 hours later, I’m suddenly bleeding like a stuck pig again and howling in pain for another whole day before it’s finally really all over with until the next cycle. The ex dubbed this George’s Last Gasp.

 
Q. Can you die from Endometriosis?
A. Not officially, but having the disease makes me not want to live with the disease, if you get my drift. Also, taking pain medication for 30 years does quite a lot of damage to one’s digestive tract and thus opens one up to other illnesses which can turn severe if not treated properly.
I don’t know what else to do but continue trying new pain management courses including continued pain medication and surgeries…but NO MORE LASER surgery! It’s useless for me. I will ONLY seek out excision specialists such as Dr. Andrew Cook and Dr. Ken Sinervo. And of course, they don’t take insurance, so I’ll have to save up for it while hoping that natural menopause begins soon, and eases my pain.