What is Hypothalamic Amenorrhea and why you NEED your period back

If you’re reading this post you most likely are experiencing a loss of period or you want to understand what Hypothalamic Amenorrhea is and why it is important to get your period back. You can check out my video below or read on to hear about HA.

What is Hypothalamic Amenorrhea?

Hypothalamic Amenorrhea or HA for short is a type of secondary amenorrhea. The definition of HA is 3 months absence of menstruation. This means at some point you had your period and have lost it. This looks different for everyone. You may have been on birth control pills and tried coming off and never got your period back or you may have just started having really light periods or maybe the duration between periods started to increase more and more until you no longer have a mentrual cycle. In actuality the absence of periods is merely the absence of ovulation in most situations although you can have annovulatory cycles. The bleeding is shedding your lining because pregnancy didn’t occur. I have a lot of experience with this and the science behind it because I went through multiple IVFs ( 5 for my son and 1 for my daughter).

Either way you are probably starting to get concerned with what is going on. Where the hell is my period? What’s going on? One month passes and it seems like no big deal, one less thing to worry about and then more and more time passes and you begin to get nervous. Or maybe your are thinking no big deal it’s so much easier not having a period. For some, it could be a few months, a few years or even for some decades. The good thing is you are looking into trying to recover and that is the first step.

How is it diagnosed and reasons you may have it.

From all the research I have done and the doctors that I spoke to, HA is diagnosed by way of elimination. What this means is that they need to rule out any other cause of hypothalamic amenorrhea. They need to rule out a pituitary tumor, thyroid issues, any scarring or obstruction or some other ailment that is stopping menstruation.

The typical protocol for doctors is they will do some blood work, they may do an ultrasound and some may do an MRI if you have higher Prolactin levels to rule out a tumor. I would recommend getting a full blood panel from your Dr. That would include a full thyroid panel, Estrogen, Progesterone, Lutenizing Hormone(LH) and Follicle Stimulating Hormone (FSH ). A lot of times they may only check Estrogen and FSH and without the key indicator of LH you may lose the opportunity to see improvements.

The doctor will probably try around of Provera. Provera will induce a period in woman that have a lining and some women may get a bleed which usually indicates a less severe case of HA. If you don’t get a bleed don’t stress yourself out. I didn’t either when I was first put on it. If you don’t get a bleed it’s also a good indication you have HA which if your blood work aligns with it and if you can relate to some of the trends below. This is a great thing because it means it is most likely reversible

If you have gone to the Dr, you may have suppressed LH, low estrogen but for some these are on the low to borderline normal..

Women with HA seem to have some of the following trends:

• Disordered eating patterns
• Have lost a significant amount of weight or been on diets
• Have history of restriction
• May be binge eating
• May have cut out certain food groups or macro nutrients-
• Fatigued
• Showing signs of overexercising or working out too much
• May be an athlete or dancer but not required
• May extremely active
• Low body fat
• High Stress Levels

If any of these sound like you and you haven’t gone to the Dr, I would go to get some blood work done but hear this you need to make sure you are your own advocate. Most likely the Dr. is going to put you on birth control which will actually suppress your hormones. If you go in there and you have done your research prior to the appointment you will feel equipped to ask for what you need.

Why should you recover?

OK so now you may know that you have HA. You’re thinking why do I need to recover? Periods are a pain. Maybe you aren’t trying to get pregnant right now so it’s not a big deal but HA can cause:

• Osteoporosis
• Cardiovascular disease
• No sex drive
• Infertility
• Mental Health Issues (anxiety/depression)
• Perception of poor quality of life-
• Exhaustion
• Skin or hair problems

Please feel free to reach out with any questions or concerns! Proud of you for taking the leap to start recovery!

My Hypothalamic Amenorrhea Symptoms (Can You Relate?)

I have had a number of symptoms when I was at the peak of Hypothalamic Amenorrhea (HA) before I started recovery. At the time, I thought there was just something wrong with me. I thought that my body changed after kids and this was the new normal. Month after month I started to think maybe this isn’t normal.

Now everyone is different so don’t judge whether or not you have HA, by my symptoms but what I do think it is good to hear someone else’s symptoms to know that this isn’t normal and that maybe you do have HA..

The first big flag for me was how cold I was. I have always been cold but not to the extend that I was experiencing. Another big symptom I had was Digestive issues Issues and elevated Liver Enzymes. This goes without saying but libido seriously takes a hit when hormones are off. Sleep and Insomnia was another issue that would not go away. I was exhausted both mentally and physically because of the insomnia and because my body was crying out. I had body pains and recurring injuries that wouldn’t heal.
My brain was so foggy that some days I could’t think of words.

Do any of these symptoms sound familiar? Watch the video I made where I go into detail on each one of my physical symptoms.

Leave a comment if you shared some of these same symptoms and if and when they started to go away.

5 Tips to Start Hypothalamic Amenorrhea Recovery

Hi Everyone!  It’s been a long time I have posted and 3 .5 years after my last baby was born I am dealing with a new type of infertility.  Hypothalamic Amenorrhea!  The irony of never wanting my period to arrive and now I am praying to get it back.

I am currently working on recovering from HA (4 months all in) and I wanted to provide some tips if you are just starting your recovery journey from HA or your periods are starting to get sporadic.

I created a YouTube video on this topic if you would prefer to watch it here!

The first tip I have for your is to do your research:

I highly recommend Nicola Rinaldi’s book No Period Now what. The link to her site is here.  This book is the HA bible. There is no one more passionate with helping women get their cycles back than Nikola. She has a YouTube channel where she has a few videos and she has been on multiple podcasts. She has dedicated her life’s work to assisting and supporting women to get the periods back. I would be cautious with information overload when first diagnosed. It’s important to know that there is a lot of information out there that can be misleading or even damaging if you aren’t careful. Pay attention to the source of this information and make sure they are qualified to speak to it. I know that I turn to Dr. Google often but it can be slippery slope and you can end up spending hours obsessively looking for an answer or a quick fix.

Tip #2 Understand the Cause(s)

The second tip to start with recovery is to understand why you lost your period and when it happened. If you don’t know why you lost your period then it’s going to be really difficult to change the lifestyle behaviors to get it back or to understand the areas you need to work on. As I mentioned I don’t want to go into super detail in this video but the underlying cause will be some type of stress on your body. This stress is most likely related to an energy deficit caused by restriction on purpose or accidentally, it could be overexercise where your not fueling body and/or extreme stress added to the mix.

Tip #3  Don’t Compare

The third tip I have for you to start your recovery is DO NOT compare! This one is a non negotiable. I do think it is helpful to read stories about others that have gone through the same thing and got to the other side but I would be cautious because you can begin to hyper focus on how long it took others to recover, weight they put on to recover, how much they had to eat or if they could exercise to get it back. If you compare you are going to set yourself up for failure. You will look at those woman that only took 3 weeks to get it back that didn’t have to cut out exercise and only had to put on 2 lbs and you are going to beat yourself up when it takes you a lot longer or when you have to put on more weight and have to cut out all forms of exercise.

Tip #4 Find Support

The fourth tip I have for you is to find support. Support can look different for many people depending on your personality and where you are in life but I would recommend starting out with the HA support group that Nicola created.  If groups are triggering for you then drop out of it and consider some one on one support. If you need more you help on an individual basis you can sign up for coaching through Nicola and others like Kersten Kimura who I worked with.  There are also dietitians and counselors that can help you.

Tip #5 Create a Timeline for Going All In

I want you to create mini goals for yourself if you aren’t ready for the all at once approach. It may not be for everyone but I do think it can be helpful if you aren’t ready to jump all in or you are like most of us where the unknown of when you will get your period back will drive you crazy. What this is is if you aren’t ready to cut out exercise then give yourself a date when you will try to recover or slowly drop out days until your are “all in.

If you like these tips and would like more on HA or anything related make sure to sign up for updates.   What steps are you taking to recover?  Are there any other tips you have for newbies in this journey?  Good Luck.

Strong Enough

Infertility Woes

I have good days and bad days.  Sometimes I manage to get through a few days with no tears.  Some days I wonder how I will ever get through this? Am I strong enough?  I ask myself am I selfish for feeling the way I do or for sheltering myself away from my friends with children?   Will I regret this?  I am only trying to save myself from pain.  It is a way of self preservation like that video said I posted about awhile ago.  I just got invited to two baby showers last week which I will have to regretfully decline the invite.  No one wants the lady who cries in the bathroom at their shower.   I could probably hold myself together but really all those onesies and baby talk will feel like another twist of the dagger.  Infertility has changed who I am.  For one thing I never used to cry.  Now I am happy if I week goes by with no tears.   It has made me stronger and weaker at the same time.  It has made me put myself first and to stop caring what other people think about certain things.

We had a wedding last weekend.  I have never felt so left out. There were about 5 babies there that were under the age of a year.  Topic of choice was pregnancy and everything baby related.  You can imagine me the infertile sitting at the end of the table pretending to do something on my phone while the ladies all conversed about their pregnancies.  No one looking my way because why would they? I don’t fit in.  I feel singled out.  Even my mother in law said something like “Isn’t their baby so cute?” and then apologized and said she needs to stop saying that stuff in front of me.  I am happy she understands but then on the other hand I am sad as it reminds me of what I don’t have and that we are different.

FET #2 Update

I started Provera Sunday and am only on 5 days of it.  So good old AF should be showing soon.  Tomorrow is my birthday and I would consider it a birthday gift if AF arrived because I know that transfer is that much closer!  We also got the letter approving the FET from insurance so another plus.   I wrote the first part of this post a few days ago.  I am actually feeling better today.  Things should be looking up. This one will work…..it just has to!  Or else I may go off my rocker!

Weekend

We have another Wedding this weekend but this time we are not staying over.  I may have over-served myself last weekend on both Friday and Saturday night.  I am still getting over my hangover!  This is why I don’t drink anymore. Hangovers from hell.  Since we were away the whole weekend I missed out on my early morning gym trips.  I did go early last Friday because I had it off.  There was a beautiful sunrise.  How can you not feel good going into the gym when you see this….

I should be able to make it this for an early morning session this weekend  or at least on Saturday.  I may even try to get the hubby up to go with me.  I have cut back on cardio this week and may continue to do so.  I don’t want anything to ruin my chances for a BFP this cycle!

The “Inbetweens” and a short week

FET #2 Update

I have pulled myself away from blogging the past few weeks.  Hell I have pulled myself away from everything and everyone I know.  I don’t even want to be around myself some days.  I am frustrated, sad and just ready for this journey to have a happy ending.  I think the “inbetweens” are some of the hardest times.  By “inbetweens” I mean inbetween IVFs and inbetween test results.  Is this a word? Probably not but that’s OK I am allowed to use it.  I find not preparing or planning for something is the hardest for me.  I find myself feeling a lot more depressed about IF then at other times.  I also find myself affected more by all the little things like the pregnant woman heating her food up next to me at work, the pregnancy tests on the end of the shampoo aisle or the fact that every time I  log onto facebook it’s another pregnancy or birth announcement. The past few times we have jumped into birth control to get ready for another cycle right after a failed one.   This time because of the testing I chose not to take them.  When I am not actively doing something I feel anxious and find myself thinking more about our failures.  Even if I am just on Birth control pills it feels like I am doing something.  Now there’s just a dull lull. Waiting…waiting…..

Source

Well the good news is I finally got some results back.  Both me and my husband’s karyotype test came back normal.  The biopsy…normal.  Now the question is then why does it keep on failing??? Also since this month was my first month taking nothing in six months guess what happens? nothing.  No ovulation and I am on day 30.  I have called the clinic and they will be putting me on pills to start my period and then we will be going into our FET cycle.

What I am looking forward to

Enough of the depressing stuff.  Good News is that I have a short week this week!  It has been a rough couple of weeks at work.  Very busy but we had Monday off for the holiday and I took off Friday. Yay Me!

 

 

Meds are Ordered

Freedom Fertility Pharmacy called me yesterday to let me know my clinic called in my meds!  I am just one step closer to starting IVF #2!  We are still unsure how much it will be since I switched to Doug’s insurance.  She said if we have to pay out of pocket the meds will be $3,500.  Ouch.  Last time  it was about 3K that we ended up spending.  Meds are shipping out to me Tuesday and hopefully my clinic calls me today to let me know the game plan.  I am praying that insurance covers these meds and we are only paying less than 1K for the meds.

Dinner

Dinner was pretty good and healthy last night.  I have not particularly been in the salad mood lately but have been feeling guilty with the fact I bought a bunch of salad stuff and it would go to waste.

It was pretty tasted and included fresh tomatoes and cucs from our garden, spinach ,romaine, avocado, chicken, salsa and blueberries.  I have been digging Newman’s Light Sesame Ginger dressing.

Woke up this morning feeling pretty unrested so not sure how much I will be working out today.  Did 25 minutes on the elliptical this morning but I think my body is telling me to rest!

Speaking up about infertility

Every day on this infertility journey is a roller coaster ride.  One day I am laughing and extremely positive and the next I am a basket case ready to rip someone’s face off.  The hardest part is keeping myself together and our struggles hidden from most people.  We made the decision to keep our IVF and infertility journey under wraps and not to tell everyone.  Why is infertility and IVF so “taboo”?  If it is a medical condition why are we afraid to speak out about it?  The video below is something I found that is really moving.  For someone dealing with infertility it is a tear jerker.  It describes how we feel and what we are going through.

Empty Arms

On a more positive note I did a killer interval workout on the elliptical.  Doing 1:1 ratio with 1 minute sprints with 1 minute rests.  Burned 249 calories in 35 minutes which isn’t bad at all if I do say so myself.  Another good thing?  Tomorrow is Friday!!!!!