Diagnosed at Age 30

I created this blog four days after my diagnosis at age 30, to share my story, connect with others and to share whatever I learn about premature ovarian failure (and/or insufficiency, depending on future diagnostics).

Thursday, May 5, 2011

Newly Graduated and Hopeless

Been hitting it hard these past few weeks - lots of work, lots of socializing, booze, caffeine, little sleep, and wouldn't you know it..., no sign of a period. My FSH is back near 100 just like that.

I haven't been looking for a job. I've been so focused on running on 'E' and building relationships with people who I may never see again. I haven't been properly taking care of myself. Who knows if I can have a kid. And so I ask myself, "Is this it?" I didn't find my life's passion in B-school. What else is there if no kids? Where do I go from here?

Sunday, March 13, 2011

So tired

It's been a while since I blogged. In December, I had my first "period" in seven months. It was extremely light and barely what I would call a period, but there was blood nonetheless and I took it as a win. The doctors (naturopath and acupuncturist) recommended we wait and see what happens in the next month. Next month, more blood at two different times that month. Since then, I've been bleeding at LEAST twice per month, though only one of those times has felt like a real period. This month, month three of the return of my period, the breakthrough bleeding rolled right on into what I would call a real period. Does this mean my FSH is finally dropping? Does it mean that soon enough my body will hold onto a lining for my eggs? Does it mean my body still has eggs? If so, how many? How long have I got?

My acupuncturist thought that since I was having a period again, I could stop treatments. However, my FSH is still too high, so I am now seeing an acupuncturist closer to my home. Last week's treatment was AWFUL. I was super sensitive (thought I was going to vomit at one point), most likely because my real period was about to start. I've been in a funk ever since. My yintang point (the one between the eyes) bled, which has happened once before. Both times I wept deeply on the table out of some deep pain that I didn't know I would experience until treatment had begun.

I have concerns that my fertility will return for a short amount of time during which I will not have found the guy I want to be the father of my children. The concern continues: once I find him, infertility, this time irreversible, will return.

Friday, November 26, 2010

Family

Yesterday was Thanksgiving - the first holiday in nearly seven years I celebrated single, though not alone. I am blessed with a large and functional family. In the spirit of family, I came home last night and caught up on a seriously funny sitcom called "Modern Family." I then became engrossed in "Parenthood" since everyone I know raves about the show. Now, I want a family more than ever. My ex, who has been without immediate family since his father passed away nearly 15 years ago, has it right, the holidays are tough without one. I would like to be a parent. I hope the naturopath and accupuncturist can help.

Friday, October 15, 2010

Traditional Chinese Medicine

Yesterday, I went to the Southwest College of Naturopathic Medicine & Health Sciences to begin acupuncture and chinese herbology treatment (because, as a school they offer a discount if you allow a student to practice on you and as a full-time student, they further discount your visit). The appointment began with several questions (refreshingly exhausting compared to my other doctors). Then, they asked me to stick out my tongue, at which point the four (one certified doctor and three residents) jumped back and exclaimed, "Oh!" at the same point. Guess my tongue is a bit redder than it should be. Additionally, they felt my pulse, which they described as watery and slippery, but strong. What came next was the worst (and hopefully best) thing to happen in my life.

They stuck needles at the top of my head, in between my eyes, the backsides of my hands near my thumbs, in my pelvic area near my ovaries, on both sides of my knees and on both sides of my ankles. I hate needles and thought that I was either going to have a coronary or pass out while on the table. It was probably the most grueling and traumatic experience I have yet to experience, but I hear that my panic attacks should lessen over time and that the pain should also lessen.

If you've never had a nerve pierced, I'm not sure how to describe the feeling. It's the feeling sense's equivalent of fingernails clawing a chalkboard, I guess. I really do not like it. However, I guess my body responded very well. It grabbed those needles tight. The doctors-in-training were quite impressed. Can't wait til next week.

Additionally, I was prescribed two herb mixes: "The Snake & The Dragon" and "Eight Righteous." The Snake & The Dragon is expected to clear heat from my Liver and Gallbladder systems. The Eight Righteous is also expected to clear heat, but I think was prescribed to me on account of my recently acute UTI's (which were the main focus during this visit).

I've felt extremely exhausted and hungry since my visit. I woke up with intense back pain and a headache in the back of my head this morning, not sure if it was related to the treatment. Will keep updating if anything new happens.

Monday, October 11, 2010

The Questions

First, let me begin by saying this sheet is very helpful: http://www.runmyclub.com/IPOFA/ClientFiles/FAQ.pdf

Nonetheless, I have many questions that I assume will go unanswered my entire life...

What caused this?
Is there any linkage to the Pill?

Is it because autoimmune disorders (though none listed that are linked) and degenerative disorders run in my family?

Was it that weird virus I had in 2007 that caused gigantic lumps on my arms and a fever?

Could it linked to my having had amoebas back in 2000?

Is the POF linked with whatever it is that causes my nails to curl up or my pinky fingers to be freakishly long?

Not that I'm superstitious, but during one Easter, I learned the "dangling pencil trick" that is used to determine the sex of a child. Not only does it tell the sex of a child, but it can tell the sex of previous children, and their birth order. When my mom was tested, my circle was much, much larger than every other circle we saw that day (there were six other circles). Does this tell me something about my genes? Is it linked to the POF?

Is there a chance that the bad kidney infection I suffered at 9 months old have anything to do with this?

Relationships
When will my mom quit blaming herself?

Will people who know I have this be selective about sharing information about their pregnancies and/or children?

Where's the line between openness and too much information?

Why does nearly every female I tell immediately respond with, "You can have one of my eggs!"? Thanks, it's too soon for that discussion.

Since every man I have ever met seems to want children, is there any point in dating if my currently supportive boyfriend and I split?

Day-to-day
How do I make time to read about PFO and meet with doctors while in graduate school?

How do I incorporate a healthy lifestyle into my life (without it becoming my entire life) when being expected to work 60+ hours a week?

Can I take a week off to do nothing but weight train, research and SLEEP?

What will give me the greatest chance of recovery?

If I do begin to ovulate again, should I have a child, knowing that if it is a girl, she may inherit this?

How can I become part of the solution if the problem has not been exactly identified?

Why don't governments do more to eliminate toxins from our air, water, soils and consumer products and adopt the ways of "cradle to cradle" design?

Symptoms
Does my lack of vaginal dryness imply that I still am producing (some) estrogen? If so, does that mean I have a better than normal chance of this problem reversing?

When will the hot flashes stop?

The Doctors

Through the sniffles and the worries, I feel there are some doctor visit stories worth sharing - some humorous, others that you can likely relate to or expect...

The Caring, though Ignorant General Practitioner
This is my favorite story, because of the humor that resulted from my doctor's genuine support. Wednesday, I received diagnosis from my gynecologist. The next day, I had to follow up with my general for another reason that is most likely unrelated. Since returning from China about two months ago, I have had blood in my urine. I had recently finished prescription #2 (nitrofurantoin) and was awaiting my doctor's finding - still blood. As he began to talk to me about scheduling an appointment with a urologist, I started crying. He immediately grabbed the nearby box of tissues, carefully threw away the top one, handed me the next two, and asked, "Is it the ovary thing?" a concerned look in his eyes. He then encouragingly and hopefully stated, "You know, maybe they can figure this out, what's causing it and fix it." I had done enough research at this point to know that most doctors don't know much about POF and therefore, guided the discussion back to why I should continue to take antibiotics when my recent lab work indicated no bacterial growth. I intend to provide his office with information about POF during my next visit. Though, thankfully, it was his due diligence that discovered the problem, in the first place.

The "Dude" Gynecologist
Until meeting my new gynecologist, I had yet to see a doctor with semi-large gauged ear plugs. I'm not judging, it was just new to me. During my follow up to discuss treatment options, he began to tell me the clinical applications of my high FSH levels and then quickly jumped into, "Were you planning on having children?" which is when I broke down. He obviously felt uncomfortable with my emotions, apologized and told me my condition was rare and he thought that I should talk with an endocrinologist. What I love about him is that he knows his limitations and how to manage them. However, he was quick to leave the room and hadn't given me any prescriptions. When I consulted the nearby nurse about hormone replacement, she asked me what type of hormones I was speaking of. Unfortunately, I hadn't brought any of my research and said, "I'm familiar with the term 'hormone replacement therapy,' but I don't know which hormones the therapy consists of." After which, I heard her consult the doctor and his answer was, "What does she want? Birth control?" After following up with the endocrinologist, I plan on following up with this office as well.

The Political Gastroenterologist
Fairly older, my gastroenterologist began the exam by asking me several questions about my background, which considering the speed at which most doctor visits occur, I welcomed. However, the conversation took a turn when he found out I had been working for a wind turbine manufacturing company in China this last summer. Apparently, he's not a fan of wind power, for whatever reason. Anyway, he said that due to my age, he wasn't going to do more than check for parasites (I'm playing down the implications of this comment for reasons you understand if you've ever had to dug in your own poo in the name of a parasite test). However, given the fact that menopause, or something similar to it, isn't supposed to occur until the lower 50's, I asked him a few questions and now have a colonoscopy scheduled for 11 days from now. As much as I don't like tests and medical procedures, I'd rather suffer for about 6 days (I can't have fiber in my diet for 5 days prior to the test!) and know that I'm healthy than be left unsure.

The Business Savvy Urologist
Is technically a "classmate" it turns out, except that his work is paying him to take Corporate Learning classes at Thunderbird, while I am paying for a Traditional MBA. He really wants to stick a camera up my urethra. His rationale - you should never see blood in your urine. He says things like, "If it takes longer than 30 seconds, you can do it to me," and "Let me put it to you in business terms, if it was painful and you told people I hurt you, I'd be out of business." I don't want to get this done because I don't see the need. However, my appointment is scheduled for 11/16.


The (Reproductive?) Endocrinologist
The gynecologist is checking into which (reproductive or general) my insurance will cover and will be sending me his recommendation tomorrow. No idea how quickly I'll be able to schedule an appointment with this specialist. I'm guess the appointment will involve blood work. Scheduled appointment for 11/9.


The Chinese Herbalist
I found a way to get acupuncture and Chinese herbs at a discount - go to the School that teaches the stuff and be seen by students (Southwest College for Naturopathic Medicine). Dr. Deng is the head of the group and sees me for all of 1-2 minutes/visit. I lived in Beijing this summer and find comfort in his broken English and culturally different way of communicating. The two students who administer the acupuncture are phenomenal - very comforting (one with humor, the other with empathy). However, the acupuncture is painful and frightening as all get out, which I am told, means it is working.

Innovative Primary Care
So far, I've been seen by a GP named Dr. Parr - amazing. Though, new doctor, new tests. I now have an MRI (with and without contrast) scheduled of my brain (focusing on the pituitary gland) next Tuesday. I will be meeting with one of the staff Naturopaths who wants to delve deeper into my hormone levels - of primary concern will be my "unbundled T4." I'll be learning what the significance is in a few weeks. Also, Parr tells me I have TMJ, though after reading about the disease, it sounds as though many other diseases are diagnosed as TMJ, which probably means more tests...eventually. However, as the condition is not curable and currently not life-inhibiting - this is at the bottom of my list. Unfortunately, Dr. Parr put things in perspective for me when she said she hoped it was a brain tumor that could be removed so that my ovaries could recover. Without the POF/POI being related to something curable, I have a very low likelihood of ovulating ever again.

National Institute for Health
I received word that my paperwork was received today, however, I need one more FSH blood test before I can schedule my appointment. If I hurry, I may be seen as early as late January 2011.

Sunday, October 10, 2010

Diagnosis via Voicemail

I always thought my first blog would be about some unique travel adventure, if not about my favorite places to hike, camp and visit in my beautiful home state of Arizona. But those things have been, somehow, easier to postpone sharing compared to the recent diagnosis I received via a voicemail message four days ago.

Background
I noticed something was wrong a few years ago (age 27) when I decided to stop taking the Pill as part of a bi-annual cleansing ritual I often performed. I was off the Pill for three months without my period returning. I was suffering night sweats and hot flashes. When I discussed these issues with my OB/GYN, she said that these symptoms occurred regularly with women who had been taking the Pill for many years and told me that I needed to get back on birth control (unless I wanted to conceive - at that time, I did not). At this time, I had never heard of Premature Ovarian Failure and wasn't investigating things on my own.

Back on the Pill, my periods resumed so I figured everything was normal. They were, however, pretty scant, short-lived and darker colored than I remembered them. I was considering returning to the doctor when they nearly dried up last year while still on birth control. However, I changed my diet a bit, wanting to try Dr. Weil's "anti-inflammatory" diet and my periods became healthy and persistent, almost wanting to start prior to its designated times. I should state now, that I've always been healthy and health-conscious. I was anorexic my junior-senior year in high school and since then, have been conscious about healthy amounts of body fat, nutrition and exercise. However, despite my health consciousness, I'd say I've always been more prone to sickness than most.

Back to last winter, things seem to be going really well for me, I'm eating an anti-inflammatory diet (though I've always needed a candy bar or cookie a day), exercising nearly daily (P90X), my periods are persistent, my school work (I'm a grad student) is enjoyable though intense, and then, in March 2010, I left for Beijing, China. There, my healthy diet was replaced by copious amounts of 7-11 stir fry, white rice and MSG in everything, including the dried fruit and nuts. My exercise routine also stopped because of a bad chest infection and an inability to sleep at night. Planning on returning to the US in May, I took just enough birth control prescription to get me through the trip. However, instead of returning home in May, I stayed for a summer internship and was unaware that birth control was available over-the-counter, so I took a break from the prescription. Of course, my period never returned.

Diagnosis
Back in the US and four-and-a-half months later, I begin going to the doctor. At that time, I had several complaints, lower back pain, blood in my stool, and no period for nearly five months. Additionally, the doctor found blood in my urine. He sent me to a sonographer for an abdominal and pelvic ultrasound. The sonographer could not find my ovaries and after several minutes of searching, gave up. Which again, I had still not heard of POF and thus, was a bit miffed at her lack of determination - I knew I had ovaries.

About a week later, I had my OB/GYN appointment and told him about my ultrasound. He explained to me that my condition was common of a woman in menopause because ovaries don't appear on an ultrasound - follicles do - a woman in menopause does not have follicles and thus, the sonographer cannot find her ovaries. So, he drew my blood to test my Follicle Stimulating Hormone (FSH) levels to make sure I wasn't in menopause. At that time, I thought the discussion was funny and the condition curable, so I told all my friends, "My doctor says I could be in menopause - at 30! Ha!"

The following Wednesday, I called for my test results. The practitioner was unavailable, so I authorized her to leave a voicemail, since my class schedule was intense. Of course, as soon as I noticed I had a missed call, I snuck out of class, expecting to hear that I was fine. Instead, I heard an apologetic voice telling me that my hormone levels revealed that I was in menopause. She suggested I make a follow up appointment to go on hormone treatment. That night, I began to research the condition and to learn about its gravity.

The Plan
That was four days ago and I'm starting to accept it, though, admittedly, I have not yet started my new hormone prescription  and I have begun eating anti-inflammatory meals, once again. I recently read that Traditional Chinese Medicine has helped reinstate ovulation in some women. I haven't been able to speak to any professionals who understand the condition to know if I fit into the category of women who sometimes, and seemingly miraculously, conceive. I recognize that my hopefulness and self-determination may be masking my acceptance a bit. I am excited to learn, research, perhaps become a test participant for a National Institute of Health study, such as this: http://poi.nichd.nih.gov/vcc.html (if I have POI, at this point, I don't know if I'm in failure or insufficiency). Also, I will be attending this: http://www.scnm.edu/womens-wellness-clinic-m.html on October 23rd to discuss Traditional Chinese Medicine, and specifically, what I have found here: http://www.acuforconception.com/Conditions/Medical_Research/Medical_Research_POF.htm Also, I will have an appointment with an endocrinologist (hopefully one that specializes in reproductive endocrinology) at some point in the near future. And, of course, I need to investigate health care issues - what's covered, what's not, is there a gap insurance I should look into? Any advice, comments, inquiries are welcome!!