Pregnancy Loss

There are so many reasons for pregnancy loss; from medical issues of the mother such as Celiac, PCOS IgA-D, and Lupus, to issues with problems with progesterone production, or just a non-viable fetus.  However, each one of these reasons may not lessen the pain that comes along with losing a child.  

Emotional Waste

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Having had situational depression, I can honestly say that it is probably the biggest waste of my emotional energy.  The only reason that I say this is that it doesn't help anything.  Depression can be an easy state to fall into when something good or bad happens in one’s life.  When one is depressed they lose energy for everything else.  That also means they are not fixing what caused the depression in the first place.  I have gotten depressed over the loss of my pregnancies, over the loss of friends and sometimes even when something great happens if that something great is life changing.  For me depression doesn't last long.  However, currently I am caught between depression and acceptance for my ectopic pregnancy.  Every time I think I am over it something will happen that makes me realize that I have not let it go.  Knowing that nothing I can do will change the situation it leads back to depression. 

Being Completely Exhausted

A blogging Kat! I find myself funny. (not my picture)

There have been very few times when I have been completely exhausted, my first day in Fiji, a couple of times on my trip to Germany, a few of my 10 days in Orlando, but I am only talking physically exhausted.  There was only a very few times in my life when I was completely exhausted emotionally, as well as physically and mentally.

Emotional impacts of any major diagnosis or life change

Being diagnosed with anything life changing can have large emotional impact.  It doesn't have to be death or a terminal illness to have a response just because there is not a deathly outcome doesn't mean that if does not affect ones emotions.  Going through the five stages of grief can just be the start of handling the situation.  Even situations that have been resolved can have this sort of impact. 

When I was diagnosed with Celiac and with infertility and told of the loss and/or imminent loss of my pregnancies I went through these stages. I also went through this when I was told that I had cancer but it was removed and now I am cured.  During these periods I was lucky enough to have people around me that understood and tried to help, that still didn't make the news any less devastating. 

The five stages of grief are
Note: There is no right way to grieve and it may take some longer than others.   These steps may not be in order or may be repeated.  This is only an overview of what can happen not what does happen. 

1. Denial and Isolation:
This has been called a defense mechanism that buffers the immediate shock.  That thought that the doctor cannot do their job right and has made a large mistake.  Simply a person cannot handle the situation and hides from what is going on.  Some of these thoughts for me included "I just need to find someone who knows what they are doing." "There was a mistake in the blood work" or my favorite "who gave this idiot a medical degree?" This is a temporary response that carries us through the first wave of pain.

2. Anger
Once denial starts to wear and reality re-emerges a person can go through anger. This anger can come out at unreasonable times and be aimed at friends, loved ones, animals, inanimate objects, doctors or complete strangers.  This emotion is created to help deflect the pain.  Inside we know that the anger is misplaced, this can cause guilt at being angry which then turns to more anger.  In my case the anger came out at close friends, family and inanimate objects. Not that I didn't blow up at complete strangers it was just less.  I remember throwing a book I was reading since the characters were doing what I could not.  It took me a few weeks before I could read the book again without wanting to destroy it.  I accused those close to me of not understanding or not caring. 

3. Bargaining
This is a way to try to regain control of the situation.  It can come with thoughts of why didn't I make a bigger deal of those symptoms, why did I trust only one doctor.  These “what if” thoughts can often lead back to anger, as they consistently did for me.  I tried making deals with a higher power in order to be able to keep the baby, have a child, or just be healthy and able to eat normally.  This is almost a second form of denial in the way it is trying to protect ourselves from reality.  Once I found that I couldn't do anything different I would then get angry.  I personally was stuck in these two stages for a while on a couple of different issues. 

4. Depression
This can happen in a few different ways, it can be sadness and regret that lead us to separate ourselves from our loved ones and from normal activities.  This is the type I generally go through.  I would lock myself away in my room and fall into fantasy worlds where I didn't have to deal with anything.  I would put myself in front of the computer and hide in Facebook games, stupid things with no real bearing on anything real.
There is a second type of depression that is quieter, those people that look and act fine but haven't cried openly.  Those that keep going to work and seem to handle everything fine, this can sometimes be the more dangerous of the depression since it can last a lot longer and perpetuate it's self.  Thoughts like "why doesn't anyone notice how I real feel?" can occur, if this is the case please try to talk to someone.   In both cases sometimes a hug can really help.  It is not a permanent fix but it can be useful to help a little of the depression not feel so lonely, even if you made the loneliness yourself.   

5. Acceptance
This is the hardest stage to reach, and often you can be stuck in one of the other stages for a very long time.  This stage is shown by calm and withdrawal as you deal.  This is not happiness and often can be mistaken as still being in the depression state.  It is only after this stage that you can start to real deal with everything that has happened.  I am only now just starting to get to this stage after my ectopic pregnancy.  I was stuck in anger and depression for a long time.  I would start into acceptance and then fight against it. Coping with any large change like a diagnosis can be hard, and no one can really understand what you are going through since each person deals differently.  The only advice I can give is hypocritical since I don't follow it, that advice is to allow grief to take its course, try not to fight it.  However, I personally know how hard if not impossible that advice can be.  

With my celiac and immunoglobulin A deficiency it took me a few weeks to come to grips with everything.  The depression stage was short but I real held on to the anger.  Why me and why not others, what did I do wrong? Those thoughts kept me angry since I didn't want to deal, I just wanted it to go away.  I went through many tests and kept hoping that each test would say that the others had made a mistake and I was fine.  However, when I was found to be IGA-D (immunoglobulin A deficient) that was all diagnosis the doctors really needed.  Further testing was to see how far along I had progressed not to prove that I had Celiac. 

Knowing what the stages of Grief are doesn't make it any easier to deal with.  Never let anyone tell you that you cannot be going through those stages simply because they don't think you should.

Living with PCOS

In previous posts I have mentioned PCOS also known as poly-cystic ovarian syndrome.  If you have no idea what that is then this is the technical definition from pub med health

"Polycystic ovary syndrome is a condition in which a woman has an imbalance of the female sex hormones. This may lead to menstrual cycle changes, cysts in the ovaries, trouble getting pregnant, and other health changes."

 What this means in the real world?

  

 It means that I don't have periods even though I go through everything for them and I live with pain at the weirdest times.  I have often been told that you cannot feel your ovaries by doctors.  I wish this was true.  To give one an idea of how it feels, I had an ectopic pregnancy and I didn't know. I should have known but I was so used to the feeling of pain in that area that I couldn't tell when something was very wrong. 

Other effects that this can have are mood swings, this is not I am happy now I am mad types this is the now I am happy now I want to rip off body parts type.  Not fun, also I think my husband should be allowed to put himself in for an award for not killing me.  

On top of everything else most of those with PCOS gain weight, not a little weight a lot of weight, I worked out constantly and couldn't ever lose a lbs for more than twenty four hours.  That meant that I had only lost water.  This can get really frustrating and makes a person want to give up.  

I do not have any of the male like characteristics that can occur with this, however, that is me personally.  I know others who have every sign. 

The idea behind this issue is to control it with medication for me they use metformin. Even going on this stuff is no fun.  If you haven't yet developed diabetes then the side effects from this medication can seem worse than the disease.  However, I promise it will start to even off after a few weeks.  Also you might want to strongly avoid over eating carbs, they can set off a reaction with the medication.  The idea of this is to help control the hormone shifts.  with the control of the hormone shifts it helps to control the mood shifts.  It does help, but only slightly, what it really does for me is to make it so that I don't get worse.  It does not help with the periods or the weight loss.  

The only thing that really helped me out was being on fertility drugs.  I think it added to what I was missing in my system. 

The worst part about this is that there is no clear reason WHY this occurs.  All of the medical knowledge that we currently have, and they still can't tell me what is wrong with my body or why this is happening to me. 

How I deal with it:

Dealing with PCOS can be a challenge.  I have issues with my weight, my period and my moods.  The only answer for this birth control and metformin, I wish I could do more but I can't.  I go away when I feel myself getting overly hormonal and I work out and sometimes watch what I eat.  However, even with all of the extra junk food I eat I still consume around 2000 calories or less a day.  One would assume that I overeat and I don't.  So working out, keeping my calories down, and learning more control are what is left.  I hope to be started on some hormone supplements while I wait to save up money for IVF.  

Note on the IVF: Murphy hates me; we had managed to save 1000.00 out of the 7000.00 required for IVF.  However, the house we had to rent out had issues with the roof and with the AC.  So a house we can't live in due to military orders falls apart.  There goes the 1000.00.  We will be starting to save all over again. 

Ok the fun stuff, here are the symptoms of PCOS if you are unsure if you have it or not.  If you are a male, I am sure you do not have this.  

Symptoms of PCOS include changes in your period (menstrual cycle).  Some changes are:

No period after you have had one or more normal ones during puberty (secondary amenorrhea)

Irregular periods, which may come and go and may be very light to very heavy

PCOS can cause you to develop male-like characteristics. This is called virilization. Symptoms include:

Body hair growing on the chest, belly, face, and around the nipples

Decreased breast size

Enlargement of the clitoris

Thinning of the hair on the head, called male-pattern baldness

Voice gets deeper

You may also have skin changes:

Acne that gets worse

Dark or thick skin markings and creases around the armpits, groin, neck, and breasts

 IF you have these symptoms please go see a doctor, there are some bad things that this can lead to if you don't get help. 

Fertility Issues

Fertility Issues:

Sorry for the delay, my blog decided I was spam.

Ok I have talked about Celiac Disease before this but that was not the only purpose of this blog.  This post is about fertility and my struggles with it. 

My husband’s lifelong dream is having a child.  It is one of the main reasons he joined the military since we could not afford fertility on our own.  It took me a while to want a child I wasn’t ready, however, about the age of 23 my husband finally convinced me that that it would be a good thing.  So we started trying.  We tried for a year with no success and then I went to the doctor where I was told I had Severe PCOS (Poly Cystic Ovarian Syndrome), as well as Endometriosis.  We took a good long look at what it would take for us to have a child and found we simply couldn’t afford it.  So when I was 24 and he was 27 he joined the military. 

Once we arrived at his first permanent duty station I got myself into the OBGYN clinic on base.  The only thing they could do for me was Clomid or letrozole.  We gave Clomid a shot for 3 months at largely increasing doses.  Not only did that not work, it made my moods very unpredictable and it made being around me hard to handle. They preformed my first HSG or hysterosalpingogram and found that I had a no blockages but something showed up weird.  A MRI later and we knew that I also had a uterine septum.  Having done everything they could do and they sent me to a specialist. 

The new Doctor was horrible.  He convinced me that I had Diabetes even through my Glucose tolerance test clearly said I did not.  He put me on a no carb diet and informed me that the reason I was so large was because of my eating habits, and that I needed to lose weight before he could do much.  I spent years working out with little to no weight loss and I ate just over 1000 calories a day prior to this but I did go carb free also I did lose the amount of weight required for him to perform the surgery.  The surgery lasted over 5 hours; I went in for a simple septum removal and ended up having seven surgeries in one.  Including one that most likely saved my life, yes I knew I had endometriosis, but I didn’t know that it could turn into cancer. I remember clearly sitting across from the Doctor and him telling me that he had good news and bad news, the bad news is that I had cancer, the good news is that I am cured and I no longer have it.    

A few weeks later I underwent my second HSG just to make sure there was no scaring in my tubes from the surgery and we moved to letrozole since Clomid hadn’t worked. During this time I went to my primary care doc who took a long look at everything I had been told by my fertility doctor.  She had them draw a lot of blood tests and when I came back a few days later she informed me that my cholesterol was so low that I was going to end up killing myself on the diet I was on.  That I was not diabetic and that the reason I was overweight was not my eating habits (she had me explain them) but was because my hormones were messed up from the PCOS.  Also, that I was skinny for a person with Severe PCOS.  It was one of the times I got to listen to one doctor yelling at another doctor.   Back on a normal diet and continuing my treatments I started Letrizol.

 

The letrozole worked and I became pregnant for the first time.  I was excited when the test finally read pregnant, I had worked now for nearly a year with fertility doctors and I had my first positive pregnancy test.  The only person I told was my husband since he was leaving in a few days for a seven month deployment.  On the day that he left I started bleeding heavily.  For Women looking to know the signs of a miscarriage it included heavy cramping as well as heavy bleeding, however it can feel like a heavy period.   I went immediately back to the doctor who told me I was “Fine” but just to be sure they took a blood test.  My HCG results came back under 5 and I was told that I had lost the baby.  I was told it was a “missed pregnancy” which was his way of saying a chemical pregnancy since my period was due the day before I started bleeding.  I was devastated, not only had I lost the child but now I was alone to deal with my grief.  Fertility stopped while my husband was deployed since the military will not pay for artificial insemination. 

Seven months passed and homecoming arrived.  I was so excited to see my husband we both had slowly healed from getting our hopes up.  We went back to the OBGYN at the base to go back into privatized fertility.  This time we asked for someone else since I didn’t want to constantly be told that I was diabetic.  We were given our assignment and went to our first appointment.  The doctor not only did the consult but was able to get me started on a fertility regiment right away. After an HSG, I was on letrozole as well as menopur and ganirelix with an HCG trigger shot.  The first time I was able to get pregnant.  Again those lines showed up on the test and so I went in for blood confirmation.  Yes my numbers were doubling very well.  About half a week passed after my period was due and nothing was wrong.  I was gaining a lot of weight but I thought that might be normal since a lot of web sites said it was normal. I was afraid to tell even my husband about the baby since I didn’t want to lose it.  Well that came crashing down when I had to go to the ER, I couldn’t move I was in so much pain.  While in the ER, they did a basic pregnancy test and I couldn’t hide the results from my husband who was with me.  He looked so happy as well as worried.  By this time I was more than 30 lbs heaver than when I started the pregnancy and I was only four and ½ weeks in.  For anyone who has had this issue they know exactly what it is.  I had Ovarian hyperstimulation syndrome, Not only that but I had a really bad case of it.  I had gained too much weight too quickly.  I had almost 30 lbs of water weight in pockets of my abdomen. 

A nurse at the ER took me back for my first ultrasound to see what was going on.  They did both an internal and an external ultrasound.  At some point in the ultrasound she stopped asking me about my “baby” and started talking about how my “pregnancy” was going.  This confused me, but it didn’t take me long to figure out that I had more than one whatever she was looking at.  Since they couldn’t do a draining procedure at the hospital I was in, I was sent back to my fertility doctor in order for him to drain me.  That was the only reason I didn’t get to stay in the hospital for a couple of days.  After I was drained the next week or so went well.  I was happy and we even told my parents as well as my in-laws that we were expecting a baby. 

On the Wednesday before Easter I started to spot, I called and was told that I was fine and that sometimes that happens.  On Thursday I started to spot red, they brought me in for a blood test and after a few hours wait time I was told that everything was fine and to rest.  On Friday I was lightly bleeding bright red so they scheduled another blood test for Saturday.  I came in and they took the blood as well as did an ultra sound.  I was more than six weeks pregnant at this time and was excited to hear the babies’ heart beats.  My world came crashing down when they couldn’t find any heart beat at all.  All I could do was sob, knowing that once again I had failed, that something I had done or something that I had not done had destroyed the little lives that I was holding inside of me. I held out hope that the HCG levels would come back good and that the tech was just incompetent.  The HCG numbers had dropped. They figured that the pregnancy went wrong on that Wednesday.   I started the physical miscarriage on Easter Sunday. Everyone else was so happy and celebrating life and I was dealing with death.  I passed one overly large placenta with two separate parts to it.  I had lost Twins.  This was later confirmed by the doctor who said that I had two dimples in my lining which indicates two placentas, that they had merged was not unheard of.   

I hated myself and my life for a few months, I couldn’t handle much of anything, I went through the motions and told myself that it was ok, really it was not.  How could I have done anything different, what could I have changed that would have made the difference.  What was so wrong with me that I couldn’t give my husband and myself one simple thing that everyone else could have without even trying?  We had to inform those that we had told about the loss, and were expected to move on. 

When the time came to try again, we did.  For more than a year we tried again and again every month or every other month with no results.  Then my husband left for an about an eight month deployment.  When he came back it was time to try again.  After the threat of yet another HSG, I was pregnant.  This time there was bleeding from the start and we had decided that we were going to lose it.  Well I did lose one, but my numbers came back saying that I was still pregnant.  They were able to shove me on estrogen and progesterone quickly and it saved the baby.  My numbers kept rising as a steady pace.  I was still bleeding but that was from the hormone supplements, right?

 It came time to listen to the baby’s heart beat and we had told no one that I was pregnant.  I told my husband but that was it.  Once again there was no heart beat, but the numbers had risen that day like normal.  We were well above the numbers that mean the baby should be able to be heard.  Then I was given the devastating news that it was probably ectopic, they wanted to know what I had eaten or drank that day.  Since the appointment was early I was honest that I had only had part of a glass of water.

 By two PM I was in for surgery for a possible ectopic.  When I woke up something was very different: I was listening to the nurses’ talk around the room for a few minutes saying how everything was perfectly formed they can’t guess why it happened the way it did.  The first words out of my mouth were asking about the baby.  The nurse looked at me sadly and informed me that it was an ectopic pregnancy and that they had to take the baby as well as my right tube.  I had kept hope that everything would have been fine however; the bleeding was not the hormones that they had put me on but the ripping of my fallopian tube.  I had bleed so much that my uterus and tube were full of blood, in a few days I would have died from internal bleeding.  I really couldn’t stop crying.  They moved me from recovery to a room to finish waking up for the anesthesia.  All I wanted to do was to go home.  My husband was in the room or out of the room letting everyone know what was going on.  When we got home my husband kind of shut down, he played his video game and left me alone.  All the help I got while recovering came from the other people living in the house.  Once again I shut down and went into a depression.  We had thought we had saved one of the two and it turns out that it would have been better to just let it die.  Then I berate myself for even thinking that, that yes I had lost part of my body but I had also lost my baby.  As hard as fertility was before, it was now harder since I had only half the chance. I was told on the surgery follow-up that the pathologist had ruled that nothing was wrong with my fallopian tube, it was a freak thing that had the baby catch their instead of the uterus.  It should never have happened.

 However, in terms of medication, the Doctor had finally figured out what would work in order for me to keep a child.  It was not that I wasn’t getting pregnant it was that nothing was sticking, most times not even long enough to get more than a lightly positive pregnancy test.  Well we had to move, so no we are in a different area for our military health care and were told that they will not send us out to a specialist.  They also will not give me injectables; I am too high a risk.  My only option is to do IVF or In vitro fertilisation; however, they will not pay for it.  So we are looking at a $7,000.00 bill that has to be paid up front.  Again we are in a bind where we cannot afford it and now there are almost no other options. 

As it stands right now I am doing the workups and desperately trying to find the money.  I just finished going through another HSG and we are taking it one step at a time.

For those that have never had an HSG let me explain a little bit.  They HURT, I mean really hurt.  Not only that I know I don’t have my right fallopian tube so there is no point in looking to see if it is open.  Also since they will no longer work with me and I have to have IVF why did they need another HSG?  Anyway, that is where everything is currently sitting.   That is a light overview of my fertility back story, and I do mean light, but now any further fertility posts should make more sense.