I Will Not Suffer In Silence

Q. Who is George?
A. That’s the name my friend’s sister gave her period in high school 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.

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.
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 disease 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 (which was and is the only way to obtain a 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 the stuff out to California.
It took eleven more years, but I finally found a doctor to officially diagnose me with Endometriosis. Read below for more on that.

Q. What 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 misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: each month the tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body through the vagina, but the blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation — and can cause pain, infertility, scar tissue formation, adhesions, and bowel problems.

The cause of Endometriosis is unknown.

Q. What are the symptoms of Endometriosis?
A. Again, from the Endometriosis Association website:

• 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

  Q. Of these symptoms, what are YOUR symptoms? That is, what led the doctor to believe you have Endometriosis?
  A. My symptoms include:

  • 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 the surgery as soon as you moved to California, then?
A. When I got health insurance after moving to California, I saw several doctors over the years, who all 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.

The only other jobs I’ve had since that time were contract positions with no health insurance, and I couldn’t afford to get my own health insurance.

I’m convinced that the surgeon denied me a laparoscopy because I only had HMO coverage instead of PPO.

Q. So what did you do to manage the pain if you couldn’t get surgery to actually diagnose you with something?
A. I started modifying my diet in 1999.
From 1999 to 2005, I cut the following things permanently from 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!).

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 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. In Spring, 2006, a friend recommended me to her gynecological surgeon, Dr. Marilyn Milkman. I saw her in June of 2006 and she promised she’d give me surgery. Finally, after all these years!!

On February 1, 2007, I had the laparoscopy that I’ve been needing for an official diagnosis of Endometriosis.

As a result of that surgery, I got the diagnosis I knew I had: Stage III Endometriosis. Not only that, but it was found that my left ovary was stuck to the back of my uterus!!
The surgeon lasered off what Endometriosis she could find, and unstuck my ovary and put it back where it 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 all of Friday evening and all of Saturday on Tylenol 3 and a heating pad for the pain - just like old times.

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 20+ 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, such as acupuncture, accupressure, yoga, and yes, continued pain medication.