Hypothalamic Amenorrhea Success Story: Lisa

Hey guys, Ashley here! I have another story to share with you from Lisa about her hypothalamic amenorrhea story. She is still going through her experience with it, so I wanted you to read a different perspective. Thank you so much for sharing, Lisa! Have a great weekend and I’ll see ya Monday!

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#thestruggleisreal

Hello! I reached out to Ashley because I wanted to share a side of the H.A. journey that is still in the works. It’s always great to read other’s success stories, but sometimes it is nice to know you still have those in the same boat as you..let’s raise our glass!

In 2009, I was settling into college as well as a new fitness routine. I began to become interested in not only my fitness, but also what I consumed. This healthier lifestyle caused me to fall within a unhealthy weight range for about 3 ½ years. It was something I didn’t realize because I was eating extremely healthy and so called “clean” and wasn’t exercising excessively or anything. I decided to go off of the pill in May 2013 just to take a break since I had been on it since I was 16. I was just graduating and felt like my body needed a break from all of the hormones.

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Nothing had happened by September 2013, so I went to my obgyn for some simple blood tests. The results were less than comforting; my estrogen was a little low yet not alarming and all of my other results, FSH, LH, and TSH, were within normal levels. My obgyn seemed to turn to the usual answer that I knew was coming which was that I was too thin for being 5’9 and exercised too much. At the time I was running about 20 miles a week with weight training 3 days a week. I cut back the running to about 10-15 miles and the weight training to light weights. This was what I hung on to because exercising was the thing I loved most. My calories also increased during the time being as well. (Winter was a great time to do this J) I added more healthy fats like peanut butter and increased my portions of the foods I was eating as well. Also, I tried two rounds of Provera which only left me with 10lbs of water weight and one discouraged girl..without my monthly cycle.

I was so confused and hurt because I felt like I had gained the necessary weight, yet no signs of being able to produce my own cycle again. Over the next few months, I reached out to many bloggers who shared their stories about H.A. which helped keep my hopes up. My mother was also my biggest supporter, going to appointments, listening to me talk about the worst scenarios, and constantly reassuring me it will be okay.

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At my appointment in January 2014, my obgyn seemed lost as I was maintaining a healthy weight, yet still had no signs of spotting. I was put on a low dose estrogen pill for a month, but decided to go off because I wanted to know what was wrong and not keep pushing this under the rug. The good thing that this showed was that I can produce a cycle while on birth control!

I got engaged in February of 2014 to my boyfriend of 3 years and began to worry again even more about my cycle. I once again went back to the obgyn who brought up the idea of seeing a fertility specialist. After bringing up the idea of PCOS, she ran an ultrasound and let me know that I have a cluster of cysts on one ovary, but the other seems fine. At this time, she still isn’t sure why I cannot produce a period on my own, but I am in the process of going to see a specialist.

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I just want you ladies to know that doctors may not always have the answer; they are people too who just have to keep working with trial and error. What may work for one girl may not for another. However, I will get this figured out and if I cannot have children of my own, then that isn’t anything that will change IF I have children. They will be children and I will love them the day, they may just not be blood related. I am healthy with an extremely loving family and that is what matters.

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Comments

  1. says

    Thanks for sharing your story Liz! I’m in the same situation as you – Progesterone didn’t work, I’ve cut back on exercise and eating more, and gained weight…but still nothing. My gynecologist is pretty lost! I’m thinking I may head to a naturopath if I don’t see anything within the next month or two. Fingers crossed we both see results soon!

    • Nicole says

      Hi there,

      I’d just like to add my two cents since I’ve been there too. After stopping birth control I didn’t have my period for a whole year. It wasn’t until I COMPLETELY stopped exercise and ate a LOT of calorie dense foods (mostly unhealthy foods actually and I put butter, coconut oil, and almond butter on evvvvverything) that I was able to get mine back. It was very, very uncomfortable, and I felt like I was stuffing myself to the gills, but after 2-3 months of doing this, I got mine back. I took a course in Sports Nutrition and we learned a lot about the Female Athlete Triad. The science is pointing towards a calorie deficit for women with HA. Yes, for some females extra adipose tissue is needed, but they’ve found it’s really convincing your body that it is no longer in a calorie deficit. When we’re in a calorie deficit, the body turns off bodily processes that aren’t necessary for survival. Letting your body know that you’re going to keep giving it enough energy…then it will turn those bodily processes back on (i.e. a period, enzymes need to digest food, etc.).

      Hope this helps! :)

  2. says

    Lisa, thank you for so bravely sharing your story! When struggling with this, my conventional doc didn’t think my issues were that big a deal; he didn’t help me much. I took it upon myself to pursue more drastic measures (stop exercise for a few months, eat a lot of food). It did take a few months for my body to start functioning normally again, but it happened. I don’t think I’d be where I am today (healed and pregnant) without doing the (very difficult) things I did.

  3. says

    Thanks for sharing Liz! I’m in the same boat too, girl. Coming up on a year off the pill, reduced exercise, healthy weight gain…still no cycles. I’m learning to cope better and have a “go with the flow” attitude, and relax, and trust that my body will take care of itself. All bodies are different! Keep staying strong, and congratulations on the engagement!

  4. says

    Thank you for sharing your story, Liz! amenorrhea), the doc kept telling me to gain weight. When I did, nothing happened. For me it was all about stress–I had to learn how to de-stress properly, and manage my stress better. After meeting my incredible husband (then just a guy I knew), my period came back 2 months into dating him. He was perfect for me b/c he de-stressed me! That is my story–but just wanted to share! Because not all docs are right–exactly. :) You gotta do what is best for you!

  5. sarah says

    hey lisa- i feel your pain! i had a year without periods after going off the pill. i was told i had to gain weight and reduce exercise, despite being in the normal range. i had multiple workups which show i don’t have pcos or anything. had one unsuccessful provera round and then one successful one. by now, 1.5 years later, i have gotten a few cycles, but they’re really long and still irregular. i also tried accupuncture, which may or may not have helped me get my very first cycke. and currently i’m seeing a homeopathic doctor. so i completely feel your struggle! my husband and i are trying to get pregnant, but with so few chances, it’s tough. i’m staying positive though and hoping it happens on it’s own. but we’ll see… the journey continues. keep up the good work :) hopefully things will straighten out for you!

  6. Whitney L says

    Hang in there! Fertility specialists misdiagnose HA as PCOS way too often (it happened to me – the doctor actually laughed in my face when I suggested this even though I was severely underweight and had suffered from an eating disorder most of my life). I conceived my first baby with the help of fertility drugs (thanks to aforementioned doctor) and my period still didn’t return after birth and weaning from breastfeeding when he was 13 months. I knew I has to get serious. I gained weight (and it’s going to require MORE weight than “normal”) and took it easy on the exercise. I second Annette’s advice. Hypothalamic Amenorrhea is a brain issue. Stress and your body’s fear of restriction/over exercise play a huge role. Just things to consider. It is possible – I conceived again (naturally!) the first time I ever truly ovulated and am expecting my second baby in September!

  7. Alaina says

    Lisa, thank you for sharing your story! I first want to say that you should not even worry about not having biological children. I had a very similar circumstance as you, but probably a bit more severe, and even after maintaining a healthy weight for about 8 months or so, had no sign of a returning cycle and still low estrogen. However, given that my husband and I wanted to try for a biological baby, we saw a fertility specialist who ran a few tests and ultimately, my husband and I went through IVF to get the most bang for our buck. I am happy to report that I responded beautifully to the medications and had success the first try. I am now the proud Mother of a 6 week old boy who is my pride and joy, and have 7 frozen embryos for later use. Do I think I will ever get my period again? I’m not sure. Do I care? Nope! I am done worrying about if it will ever return. I have learned from my HA experience that even if I don’t have a period, maintaining a healthy, non-restrictive lifestyle is what really matters and a not having a period will not prevent you from achieving a dream of becoming a Mother. :D If you have any other questions, please feel free to reach out to me! I am on Facebook and friends with Ashley on there, as well, so I am easy to be found!

  8. says

    I think that’s great you are going to a fertility specialist as they can look much deeper into things that an OBGYN! I know weight (whether you’re below or above the ideal weight for your height) can definitely influence one’s cycle; however, many women have trouble conceiving when they do get it back. My husband and I are in the midst of fertility treatment (currently using Clomid) after suffering a missed miscarriage at 3.5 months last year. I’m doing everything in my power to keep my body healthy and my stress levels low (difficult for me!). I hope you get some answers soon- if you have any questions regarding fertility treatment, feel free to reach out!

  9. Sj Dc says

    Hey Lisa, I hope these few words help..I feel like I have been in your shoes..especially knowing what it’s like to be constantly told that you’re too scrawny or that you must not be eating..Especially when it is not the case..

    docs were suspecting both PCOS and HA with me as well and reading from what you have written my case was similar and it was finally narrowed down to HA.
    I don’t know how much weight you have gained (not counting the side effect water weight) or what your BMI is at but what my doc told me was that I need to keep increasing weight till I reached the higher end of the healthy BMI for my height and wait and avoid any hormonal medications all along. In the meantime she also suggests counselling as gaing weight was definitely not easy for me mentally and also accepting my changing body. It is a constant struggle and I hope you find your strength and are able to have as many babies as you desire! Congratulations on your engagement. Wishing you the best.

  10. says

    Try acupuncture!! It works wonders on regulating hormones. Give it a good 6 months ( 1-2x week apt) with a well trained acupuncturist (preferably someone who studied at a top school in China). I have a different hormone related condition and acupuncture makes a huge difference for me.

    Hope that helps!

  11. says

    This sounds so much like me! I went off the pill last year at the same time I was prepping for a figure show (talk about bad timing). Well its been 8 months and still nothing! I went to an OB endocrinologist and they told me same thing my estrogen is low, ovaries look fine, thyroid is fine. Didn’t give me anything to go off of except to go back on the pill which I said no. I called the clinic and asked them to send me my results so that I could look at them and I was shocked to see that yes my Estrogen and Prgesterone were low, but my FREE T3 and T4 were “within” normal limits, but the very LAST number that is accepted. SO here I am with “normal” but extremely low thyroid levels and all of the signs and symptoms of hypothyroidism and at a loss for what to do next!

  12. EKA says

    I have a very similar story as well! I got off the pill almost a year ago and still have yet to have a period. I gained about 5 pounds and only do gentle exercising such as yoga and walks. I eat a Paleo diet with lots of healthy fats, veggies, protein. I just started acupuncture and herbs about a month ago. I am really hoping that the acupuncture helps because my husband and I would like to start trying soon! I also saw a Naturopath who put me on some herbs as well to no success. I am meditating daily to reduce my stress and hoping that acupuncture works! Thank you ladies for all of your stories :)

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