Once the initial shock wore off I plunged into research head first. The more articles I read on Premature Ovarian Failure, the more depressing it got. With every page I'd find phrases like, "No treatment" and "donor egg" staring back at me as if to say give up. No way. I look at it this way... They say that 1% of women get POF, and women with POF have a 6-8% chance of getting pregnant... Well if I'm one of the 1% who got this horrid disorder, aren't my odds even higher to get pregnant?? I don't know, I've never been a Math whiz, but it sounds to me like I stand a chance, however small it may be.
Meanwhile a friend of mine recommended a Traditional Chinese Medicine Dr. who helped her conceive when fertility clinics told her it couldn't happen. (Different diagnosis, but lack of hope just the same). So I immediately made an appointment and got in the same day. Hey, I'm willing to try anything! I immediately shifted my research to TCM for POF and for the first time since my diagnosis felt a glimmer of hope. I found actual success stories of women with my condition who after TCM (some in months, some in a year or two) who went on to get pregnant naturally. It was then I knew I made the right decision to make the appointment. Besides, what did I have to lose?
My appointment with Dr. Fu was interesting. She was extremely thorough with the intake, asking me TONS of questions. She asked me what my hormone levels were and I looked in my phone for the saved email from the fertility Dr. who sent me my numbers upon request. They read as this:
FSH: 133 Estrodiol: <20 AMH: 01.6
When I read them off to Dr. Fu she looked puzzled. She said for AMH 1.6 isn't THAT bad. But if it was 0.16- that is a different story. It made me wonder why the Dr. wrote in that zero the way he did, and before I got too excited I knew I'd have to contact him and double check on that.
Dr. Fu spent about 45 minutes talking to me during the initial intake. After listening to my situation and thoroughly looking over my intake form, she gave me a diagnosis from an Eastern Medicine perspective. Kidney Yin Deficiency and Stagnant Blood Qi (pronounced "Chi"). She then went on to explain the difference between Eastern and Western medicine philosophies. While Western looks at each body part individually, Eastern uses a much more holistic approach. Therefore she considered my Premature Ovarian Failure as a symptom, not the cause. She also explained that "Kidney" in Chinese Medicine does not mean the single organ as it does in Western terms. It refers to an entire system, one of which the reproductive system is a part of.
What really blew my mind was how all these other random issues I've had over the years were apparently connected! (Frequent urination, especially at night- which I actually had checked years ago and they came up with nothing; body running hot all the time; tinnitus- ringing in ears; insomnia; excessive thirst at night; quick pulse; trouble concentrating-I've always had severe ADHD; occasional night sweats... all of these issues I've always dealt with on and off thinking they were separate things, but combined they are symptoms of Kidney Yin Deficiency! Throw in irritability; anxiety; poor circulation-cold hands & feet; and amenorrhea-lack of menstruation... and there lies the Stagnant Blood Qi, which is stated in TCM can be brought on by long-term use of oral contraceptives. Ummm 17 years much?
At this point I was floored. This brought my diagnosis into a whole new light. All the things Dr. Fu was saying made sense, as if she was holding a missing piece to my puzzle. The next step was the acupuncture. As I laid down on the table, she went into detail how acupuncture works and what role it will play in my treatment. First things first, the goal shall be to get my period back. Because before I can even think about getting pregnant, I have to ovulate in order for that to be possible. Acupuncture works in the way that the tiny prick of each little needle stimulates just below the surface of the skin, triggering blood cells to swarm to that area. It gets the blood circulating. So with one needle at the top of my head and forehead, one in each hand and foot, and several over my reproductive area, the blood with be stimulated to flow throughout my body with a focus on the part that is stuck. She also added a heat lamp shining over that area to promote even more circulation and let me know she'd be back in about a half hour. She shut the light, left the room, and I almost instantly fell asleep. It's rare for me to fall asleep that easily, but I think I felt some sort of peace and comfort being there.
After 30 minutes Dr. Fu came back and took the needles out (which the needles don't hurt at ALL, btw). She had mixed a special concoction of lots of herbs- specifically for my condition with the aim of getting my body to begin producing its own hormones again- to be taken mixed with water three times daily. Right-o! I'm all about natural stuff over pharmaceutical crap any day!
I left feeling good. In positive spirits. The first thing I did though was email the fertility Dr. to double check on the AMH number that was written weird. Sure enough I got an email back the next day saying my AMH was 0.16 ...so it wasn't actually 01.6, it had been a typo. A misplaced decimal point. For a little dot it sure makes a big difference, certainly enough to knock the wind out of my
sails a bit. I called Dr. Fu to let her know the error. Unlike other Dr.'s offices, I was able to talk to her immediately. She said, "oh, that's very low." My heart sank. But she ended by saying we will still try and let's focus on getting my period back. That there are no guarantees, but it is still possible.
And with that I felt a little renewed, determined to make it happen.
Some links to info on TCM for POF:
http://www.acuforconception.com/Conditions/Medical_Research/Medical_Research_POF.htm
http://www.ncbi.nlm.nih.gov/m/pubmed/12956293/
http://ezinearticles.com/?Overcome-Infertility---Premature-Ovarian-Failure-In-Traditional-Chinese-Medicine-Perspective&id=3186728
January 20- The Diagnosis
After a few torturous weeks, it was time for my appointment to get the results of my bloodwork. From what the Dr. had told me last time I saw him, I was expecting to go in and get started on the estrogen he suggested, followed by the progesterone, all to summons my dearly departed Aunt Flo. I brought the hubs with me this time so he could be a part of the whole process. While we were sitting in the waiting room for a while we started picking up random pamphlets and reading them, discussing the information in them just because. At one point we saw one for Donor Eggs and both immediately said we would NEVER want to do that, as it would be half someone else's baby. Not that it was an option at the time, just merely for the sake of conversation. Besides, we had already determined the worst case scenario would be needing IVF. As time went by, we noticed that people who came in after us were going in before us, continually leaving us the only two on the waiting room. What the hell?!
Once I complained they moved us to the Dr's office to wait for him. Didn't think much of it, as I assumed we were just going to find out everything checked out ok and we'd get the prescription and be on our merry way. You know what they say about assuming. Time kept ticking, and it had now been an hour and a half since my appointment time and we were pretty damn antsy. We could hear the Dr. with a patient in the room next door, laughing and joking like there was a party going on while we were in there sweating it out. I couldn't help but notice my patient file glaring intently at me sitting atop the Dr.'s desk. It was so tempting to grab it and look at it, but I was sure that's exactly when he would walk in. Ultimately, temptation got the best of me and I leaned over to open and read my file. I quickly scanned through the test results, trying to decipher them. Just a bunch of abbreviations and numbers but most of them had ranges next to them and from what I saw, everything was within healthy limits. When I got to the last page, it was different. This batch of numbers and letters had no range next to them. Curiosity was desperately knocking, so I immediately had the hubs call upon the Google to get me some info, stat. I randomly picked one of the test initials... "Ummm look up FSH. What is it and what's the range?"
Follicle Stimulating Hormone.
Menstrual 4.7 -- 21.5 mIU/ml
Perimenopausal Higher than 30 mIU/ml
Menopausal Higher than 50 mIU/ml
Postmenopausal 50 - 134.8 mIU/ml
My FSH was 133. With a crack in my voice I said, "what?? POST MENOPAUSAL?!? That can't be right." As if on cue, the Dr. walked in the door. And he did not bring the party with him.
He apologized for keeping us waiting; that he purposely rearranged the order of patients so we were last, giving us more time with him because he had bad news. "Very bad news." He went on to say that my ovaries aren't working. A condition called Premature Ovarian Failure. That my FSH was so high because my brain keeps sending signals to my ovaries to do its job and when they don't respond my brain thinks it needs to send more. He also dropped the bomb that I have diminished ovarian reserve with an AMH of 0.16, meaning there's a shortage of eggs in my Easter basket. My husband chimed in, "but the number isn't zero right? I mean, if there are even a few left can't you just get them out and do IVF or something?" Wrong. Apparently the only way to retrieve eggs for IVF is to stimulate the ovaries to release them. Clearly mine wanted nothing to do with stimulation or any work at all for that matter. They had taken a proverbial dirt nap. As the Dr. continued talking, my brain was desperately trying to comprehend what he was saying. I was just staring at him, THROUGH him, relentlessly biting on my nail and I could FEEL my husband staring at me with what I could only imagine was sheer terror at the thought of what must be going through my mind and how I was going to handle this. But I couldn't look at him. I couldn't avert my eyes or move a muscle. I remember quite vividly sitting in that office, staring, biting... The fact that we were in there an hour blows my mind. The Dr.'s mouth was moving during that time, but his voice was distant in what I imagine it would be like to hear after being close to an explosion and my body felt numb. Somewhere in the midst of it all I heard the words "only option would be a donor egg" and I immediately thought of the conversation I just had in the waiting room and how impossible this was because we had said worst case scenario would be IVF. We had no contingency plan for something WORSE than that. No, I wasn't ready to accept that as the only way and pleaded with the Dr. if there is anything else we could do. He went on to tell me there is always the possibility I could conceive naturally, but that my chances are one in ten million. One in ten million?!? I needed to get out of there before my head exploded.
The conversation shifted to other health implications that come with this diagnosis.
There would be more bloodwork I'd need to get done to see if there are any life-threatening conditions behind all this, although he assured me no matter what the tests find out I shouldn't get my hopes up because there is no reversing my condition. On top of that, since my body isn't producing estrogen or progesterone, I would soon be getting menopause symptoms, will age prematurely and be at a high risk for osteoporosis, heart disease and VAGINAL ATROPHY I'm sorry what?!? He suggested I get back on birth control to put the hormones in my body to which I said no way! I just got off birth control, that would totally defeat the purpose. To me it's like waving the white flag, and as far as I was concerned I'm just getting started!
When the Dr. left the room to write the 'script for my blood tests, it was the first moment I was alone with my hubs after the news. I knew I couldn't even begin to talk about it there and just said, "I need to get out of here" because I knew a meltdown was coming. They moved me to another room to wait for the lab order for what seemed like an eternity. I'd finally reached my limit and I knew I couldn't hold it in any longer. With tears brimming, I looked at my husband with desperation asked what was taking so long, that I needed to get the eff out of there. Without hesitation he ran and got it taken care of and the next thing I knew we were heading out the door to the elevator.
The walk to the car seemed to take forever, and it took all I had not to collapse onto a curb. When we finally got in the car, I let it all out and literally exploded with grief. We sat in the car for an hour, both of us crying our eyes out trying our best to hold each other between the front seats. Between sobs, I choked out a few words like, "I want to be a mommy," "I want to make a baby with you," and "I'm broken." It was awful. My hubs finally got it together enough to drive home. The rest of the night was a blur. We laid in bed crying on and off, mustering up the courage to call our parents with the news. With me being an only child and my parents being older, I knew they would take it hard, especially my mom. Her and I are like sisters and I knew how badly she wanted to be a grandma and she knows how much I wanted a family of my own. She was at work, so I told my dad first who was positive and strong. When I got a call from my mom sometime later, I knew she knew. She was also positive and strong, although I know it was all a show, as I could hear her voice crack behind the brave front. We called our bosses to briefly explain why we needed some time off work, which we really did need time to pull ourselves together. It's funny how something like this really puts things into perspective of what's important and what's not. Suddenly posting on FB or watching our favorite shows seemed so petty and insignificant.
We held each other and cried ourselves to sleep.
When I woke up the next morning I thought for split second that it was all just a very, very bad dream. It was not... But I vowed from the moment on that I am going to be that one in ten million.
Once I complained they moved us to the Dr's office to wait for him. Didn't think much of it, as I assumed we were just going to find out everything checked out ok and we'd get the prescription and be on our merry way. You know what they say about assuming. Time kept ticking, and it had now been an hour and a half since my appointment time and we were pretty damn antsy. We could hear the Dr. with a patient in the room next door, laughing and joking like there was a party going on while we were in there sweating it out. I couldn't help but notice my patient file glaring intently at me sitting atop the Dr.'s desk. It was so tempting to grab it and look at it, but I was sure that's exactly when he would walk in. Ultimately, temptation got the best of me and I leaned over to open and read my file. I quickly scanned through the test results, trying to decipher them. Just a bunch of abbreviations and numbers but most of them had ranges next to them and from what I saw, everything was within healthy limits. When I got to the last page, it was different. This batch of numbers and letters had no range next to them. Curiosity was desperately knocking, so I immediately had the hubs call upon the Google to get me some info, stat. I randomly picked one of the test initials... "Ummm look up FSH. What is it and what's the range?"
Follicle Stimulating Hormone.
Menstrual 4.7 -- 21.5 mIU/ml
Perimenopausal Higher than 30 mIU/ml
Menopausal Higher than 50 mIU/ml
Postmenopausal 50 - 134.8 mIU/ml
My FSH was 133. With a crack in my voice I said, "what?? POST MENOPAUSAL?!? That can't be right." As if on cue, the Dr. walked in the door. And he did not bring the party with him.
He apologized for keeping us waiting; that he purposely rearranged the order of patients so we were last, giving us more time with him because he had bad news. "Very bad news." He went on to say that my ovaries aren't working. A condition called Premature Ovarian Failure. That my FSH was so high because my brain keeps sending signals to my ovaries to do its job and when they don't respond my brain thinks it needs to send more. He also dropped the bomb that I have diminished ovarian reserve with an AMH of 0.16, meaning there's a shortage of eggs in my Easter basket. My husband chimed in, "but the number isn't zero right? I mean, if there are even a few left can't you just get them out and do IVF or something?" Wrong. Apparently the only way to retrieve eggs for IVF is to stimulate the ovaries to release them. Clearly mine wanted nothing to do with stimulation or any work at all for that matter. They had taken a proverbial dirt nap. As the Dr. continued talking, my brain was desperately trying to comprehend what he was saying. I was just staring at him, THROUGH him, relentlessly biting on my nail and I could FEEL my husband staring at me with what I could only imagine was sheer terror at the thought of what must be going through my mind and how I was going to handle this. But I couldn't look at him. I couldn't avert my eyes or move a muscle. I remember quite vividly sitting in that office, staring, biting... The fact that we were in there an hour blows my mind. The Dr.'s mouth was moving during that time, but his voice was distant in what I imagine it would be like to hear after being close to an explosion and my body felt numb. Somewhere in the midst of it all I heard the words "only option would be a donor egg" and I immediately thought of the conversation I just had in the waiting room and how impossible this was because we had said worst case scenario would be IVF. We had no contingency plan for something WORSE than that. No, I wasn't ready to accept that as the only way and pleaded with the Dr. if there is anything else we could do. He went on to tell me there is always the possibility I could conceive naturally, but that my chances are one in ten million. One in ten million?!? I needed to get out of there before my head exploded.
The conversation shifted to other health implications that come with this diagnosis.
There would be more bloodwork I'd need to get done to see if there are any life-threatening conditions behind all this, although he assured me no matter what the tests find out I shouldn't get my hopes up because there is no reversing my condition. On top of that, since my body isn't producing estrogen or progesterone, I would soon be getting menopause symptoms, will age prematurely and be at a high risk for osteoporosis, heart disease and VAGINAL ATROPHY I'm sorry what?!? He suggested I get back on birth control to put the hormones in my body to which I said no way! I just got off birth control, that would totally defeat the purpose. To me it's like waving the white flag, and as far as I was concerned I'm just getting started!
When the Dr. left the room to write the 'script for my blood tests, it was the first moment I was alone with my hubs after the news. I knew I couldn't even begin to talk about it there and just said, "I need to get out of here" because I knew a meltdown was coming. They moved me to another room to wait for the lab order for what seemed like an eternity. I'd finally reached my limit and I knew I couldn't hold it in any longer. With tears brimming, I looked at my husband with desperation asked what was taking so long, that I needed to get the eff out of there. Without hesitation he ran and got it taken care of and the next thing I knew we were heading out the door to the elevator.
The walk to the car seemed to take forever, and it took all I had not to collapse onto a curb. When we finally got in the car, I let it all out and literally exploded with grief. We sat in the car for an hour, both of us crying our eyes out trying our best to hold each other between the front seats. Between sobs, I choked out a few words like, "I want to be a mommy," "I want to make a baby with you," and "I'm broken." It was awful. My hubs finally got it together enough to drive home. The rest of the night was a blur. We laid in bed crying on and off, mustering up the courage to call our parents with the news. With me being an only child and my parents being older, I knew they would take it hard, especially my mom. Her and I are like sisters and I knew how badly she wanted to be a grandma and she knows how much I wanted a family of my own. She was at work, so I told my dad first who was positive and strong. When I got a call from my mom sometime later, I knew she knew. She was also positive and strong, although I know it was all a show, as I could hear her voice crack behind the brave front. We called our bosses to briefly explain why we needed some time off work, which we really did need time to pull ourselves together. It's funny how something like this really puts things into perspective of what's important and what's not. Suddenly posting on FB or watching our favorite shows seemed so petty and insignificant.
We held each other and cried ourselves to sleep.
When I woke up the next morning I thought for split second that it was all just a very, very bad dream. It was not... But I vowed from the moment on that I am going to be that one in ten million.
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