Sunday, December 13, 2015

Premature Ovarian Failure/Primary Ovarian Sufficiency

Premature Ovarian Failure (POF) or also known as Primary Ovarian Insufficiency (POI) is a loss of normal function of your ovaries before the age of 40. 

"If your ovaries fail, they don't produce normal amounts of the hormone estrogen or release eggs regularly. Infertility is a common result.


Premature ovarian failure is sometimes referred to as premature menopause, but the two conditions aren't exactly the same. Women with premature ovarian failure may have irregular or occasional periods for years and may even become pregnant. Women with premature menopause stop having periods and can't become pregnant." - Mayo Clinic
"Signs and symptoms of premature ovarian failure are similar to those experienced by a woman going through menopause and are typical of estrogen deficiency. They include:
  • Irregular or skipped periods (amenorrhea), which may be present for years or may develop after a pregnancy or after stopping birth control pills
  • Hot flashes
  • Night sweats
  • Vaginal dryness
  • Irritability or difficulty concentrating
  • Decreased sexual desire" - Mayo Clinic
NIH has really good information on POF and they conduct studies. http://www.uptodate.com/contents/early-menopause-primary-ovarian-insufficiency-beyond-the-basics#H1 <--- click there for more info on it.

Causes for POF/POI are believed to be either a genetic cause, auto immune disease, or toxic causes (including cancer treatments such as chemo and radiation). I have also read that sometimes when a person is under chronic stress (fight or flight mode), that it may cause their reproductive system to crash; that's one less thing it has to maintain and fertility is not a necessity. 

In May 2014 I was officially diagnosed with POF, the believed cause is auto immune as I've had Hashimoto's. I also think the stress plays a huge factor me, as I've lived my entire life basically in fight or flight.

Let's back up. I became pregnant with Macie in June 2010. From the start, that pregnancy was completely different from my pregnancies with my boys. Yes, I know every pregnancy is different. I was also older with her (but still only 22!). I was overweight when I became pregnant with her. I was working full time and looking after two young boys. My marriage was a mess. These could've all been factors. I guess we'll never know. 

After the birth of my boys, I instantly felt better. In my pregnancies with Asher and Macie, I had sciatic nerve pains, but after Ash was born, it instantly went away. It did not go away after Macie. I still felt pregnant after she was in my arms. My body did not feel right. I just cannot describe it. And my hormones were INSANE. I remember the day we left the hospital, we left around lunch, and so I hadn't eaten. It was about 1 p.m. when we got into town and I was SO HUNGRY I started crying. CRYING FOR FOOD, people. I've never done that before! The feeling was so strong and all consuming. Craziest thing. And so, it was just all these different feelings and hormones were so strong. I had never experienced anything like that before.

I exclusively nursed Macie for 19 months which is when she self-weaned. With my boys (who were also nursed), I had my period back by month 5. But not with Macie. And yes I know many women go without a cycle while nursing, but that just hadn't been my norm. I remember asking my midwife when Macie was about 9 months old, and she said if I hadn't gotten it back by now, I probably wouldn't until she weaned.

January 2012 I got my period. Macie was 11 months old. But then February came and nothing...I blamed stress because Macie had been hospitalized for a few days at the end of January. I think in March-April I spotted a little. A little more in May-ish, I believe. Maybe this was my body trying to get going again? By June 2012 I was having hot flashes. I didn't realize that's what they were at first, afterall, it was summer time in Georgia. MISERABLE hot. I knew sometimes nursing mom experience hot flashes...but over a year into nursing? This didn't seem right. I asked a doctor or two, they said it's hormones, probably due to nursing. In July I went to an endocrinologist where I found out I had Hashimoto's. Hot flashes blamed on that. Macie weaned that last weekend in September, in October the nodule was found (did experience light spotting that month - I thought maybe it's my body trying to get back in order since Macie weaned?), November biopsy, by December knew I'd need surgery due to thyroid cancer. So hot flashes were blamed on that. 

January  14, 2013 was my surgery. I remember having some awful hot flashes post surgery. I was screaming for them to turn on the AC. But then in February something amazing happened...I got a period! An incredibly HEAVY one. Almost scary and dangerous how heavy. But I was all, YAY! My body is working again! That would be the last natural period I would have. In March, my endocrinologist said my FSH/LH were elevated...they thought maybe it's pregnancy. Test was negative. They said something about Premature Ovarian Failure and there being no cure for it...but my naturopath doctor said nonsense! I'm too young for that; it's just my body trying to adjust from my thyroidectomy. 

At this point, I was doing my cancer detox with the naturopath. My diet was very restricted, I was taking lots of natural supplements, weekly saunas and foot detoxes, and then 7 weeks of colonics. During that time, my hot flashes went away, my energy increased, hormones improving. Though I had no period, I was feeling SO MUCH BETTER (the best I had felt in a long time). My FSH/LH even with down 20-30 points. (They were originally in the 40s & 70s.) I credit these positive changes to my healthy lifestyle. I even lost some weight.

But then my doctor got crazy & even though I had a bad feeling about it, scared-me went along. I wrote about it in more detail in a previous blog, but basically after my detox, at the end of July, she took me off my thyroid meds and put my on "natural" alternatives (y'all, I was taking Nature-Throid at the time which is pretty natural!), I ended up gaining maybe 40 or so pounds, nerve/joint/mucscle pain, retaning water, something was wrong with my back as I couldn't stand for more than a few minutes and those were painful. My legs would lock tight and I would cry. I can't even explain it. I was constantly tired, falling asleep behind the wheel. And that was my life from August through end of Dec./early January which is when I went to a new doctor after we moved who discovered I was NOT getting any thyroid hormone, and my TSH was well over 100. Ever since then, I have not been the same.

So once all that happened (being taken off my thyroid med starting in July-August 2013), hot flashes returned with vengeance. In April 2014 I went in for a physical. My estrogen was less than 5, my LH and FSH were elevated again. She referred me to an OB/GYN. I also had an ultrasound which showed my ovaries were normal size. The linning of my uterus was on the thin side of normal. When I saw the OB/GYN in May, he officially diagnosed me with Premature Ovarian Failure. In June I saw a reproductive endocrinologist who gave me a 3% of ever conceiving a child of my own and said that women with POF have great success using donor egg(s). She prescribed me Hormone Replacement Therapy (HRT) and said it's a good thing I had my kids so young. 

Since then, I have tried various types of HRT, TCM (traditional Chinese medicine; herbs & acupuncture), natural supplements, essential oils, and to be honest, the only time I really felt like a difference was being made in the sense of symptoms is when I was doing TCM. Financially, that's just not a possibility for me right now. At this moment, I'm on HRT again after months of doing essential oils all to no avail (this time, though, the HRT isn't working as well as I'm still hot flashing 2-3 times a day; doctor says it's because my thyroid level is hyper). If I can ever get my act together, I'd like to clean up my diet again and take supplements again. I would love to go back to TCM, and once it's financially possible, I plan to.

The thing about POF is, it's so much more than infertility. And trust me, the infertility aspect is SO FLIPPIN' PAINFUL, even for someone like me who has been blessed with kids. I do not take them for granted. & also, it's crazy how I miss my period, and how I feel less like a woman now. :(

Aside from infertility, with POF, your life span is lessened. You're are greater risk for osteoporosis, heart disease, cancer, premature aging, as well as a slew of other health conditions. I use to fall asleep easily and sleep through the night, now it's hard to fall asleep and I wake up continuously. I go about each day exhausted and irritable. I'm still retaining water and I feel like it's worse when I'm on HRT.

I just don't feel well. Hot flashes are awful. It's like this raging fire that starts at your core and radiates to your outside. Some are minor, you breathe through 'em, some are long and you tense, and the heat angers you. Hot flashes are one of the most worst superficial things about POF. Sometimes I only get them a few times a day, but typically, if I'm not taking anything, I would get A TON throughout the day; back-to-back-to-back. I cannot describe to you the misery of hot flashes. Just awful. I now have brain fog. There have been times - and I'm not exaggerating - I'll be driving down the road then all of the sudden freak out, "Oh-my-gosh, where am I? Where am I supposed to be going?" Just like that I forget. I have a hard time remembering things from the day-to-day. I have a hard time concentrating. I used to be known for my incredible memory. Now I can't remember what I did yesterday unless I sit there and really think hard... I'm easily irritated, low patience tolerance, emotional. 

Menopause is a natural process for women to go through at the right age (American average being 51 years old). It's not meant for women my age. Whenever I hear someone complain about their cycle or conceiving or trying to prevent conception, I just want to shake them; be thankful your body is working the way it was designed to at your current age.

The progesterone supplement makes me sort tempered and angry. I hate that I can't lose weight, or that it's such a struggle. One of the reasons I refused radiation was because I didn't want the risk of infertility that came with it. How ironic that radiation can cause POF and I ended up with POF anyways. I hate that my 27-year-old body thinks it's an 80-year-old one. It is hard not to ask why...to not be angry...to not be bitter. But alas, I know those thoughts and feelings won't change it, in fact, those negative things can become toxic to my health. I know that God is my true healer. I believe He can heal me, so be it His will. I know there's always hope. I need to change my perspective and attitude. I need to give thanks in all circumstance.

It's a big deal me sharing this. I find it embarrassing and painful to speak about. It's crazy I've been in menopause essentially since I was 22-23. It's crazy that my 40-something year-old co-workers are having monthly cycles, and I'm essentially in menopause. I can relate more to grandma than those my own age. My crazy emotions, the sickness that consumes my body, none of my friends understand or can relate (thankfully for them!). It's a lonely condition. It's just so hard. Thankfully, I've joined a couple POF Facebook groups and that helps. Only about 1% of women have this and so it's extremely rare. It also doesn't help that every doctor has a different opinion on it and it's treatment.

In case someone reading this has POF or knows someone who does, I want to share a lady's blog who has it and was able to conceive twins naturally without medical intervention. www.one-in-ten-million.blogspot.com I read her entire blog in one afternoon, it's inspiring.

The doctor I see now believes that the fact I had undiagnosed Hashimoto's for years strained my adrenals causing adrenal fatigue which essential put added stress on my ovaries which made them crash and burn. I have been able to see first hand how one hormone can offset the rest. When addressing my adrenal issue, I see how it improves my thyroid levels. Maybe she is on to something? Some months I'm able to take all the supplements I ought to be taking, and other months I don't. It's all because of finances. As I'm typing this, I can't help but think how I need to pray more about this, and intentionally try to budget for it.

So that's my story, folks. Be blessed. 

EDIT: I should add that some doctors like to clarify that POF is not truly menopause as you can still conceive in the off chance and also, can go into remission.

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