Testing, Testing, 1-2-3 {A Journey Through Infertility}

{Editors Note: This story comes to us from Erin, a doula whose story we reshared on the blog not long ago. Her story of being a doula with infertility can be read here. Here she has shared with us her journey through medical testing to get to the point where she and her husband are now – knowing that IVF is their only option for conception.}

I have never been, by medical standards, “regular.”  Since I can remember, my menstrual experience has been nothing close to what my friends had described.  I never knew when it was coming or how long it would last, but I did know 3-5 days was not in my cards, 7-10 was more like it.

Over the years I have been encouraged to go on birth control pills just to make me “regular.” The last time I took a birth control pill was around 2000. I was taking them to straighten out the menses and to lessen my discomfort.  They worked back then.  But then one day I was walking around my college campus and noticed my foot and ankle were incredibly swollen and tight but not sore… that is what led me to now. 

I went to the doctor and they thought I twisted something, but I had no pain like you would expect with a twist.  A few days later, with the swelling still present, I was sent from specialist to specialist. 

When a Vascular Surgeon asked if I was on birth control and then told me they wanted to check me for blood clots, as that is a risk, I freaked out to say the least.  The next day I was at school I took those pills right back to the health office and gave them all back.  I have not taken one since.

After being passed all around I was told I had Lymphedema in my left leg. During this time I was in a car accident that totaled my car. I started physical therapy a few times a week as well as wrapping my leg each day in mounds of gauze and ace bandages and foam.

I was advised not to go in extreme temperatures, not to do anything on my feet, elevate my legs, don’t shave for risk of infection…depression started to set in.  I could not manage keeping the wrapping going although I did for a very long time. The wrappings would slip down and take 30 minutes each time to redo. 

I realized I had to go forward in a way that made me feel better rather than worse.  I shaved, I went into snow and desert climates and I still worked and walked the dog. I still listened to not doing too much on my feet because that I had a direct effect – tons of swelling that made my leg uncomfortable. 

In 2004 I went to see a Specialist after a couple years of no support.  I have not had health insurance since around 2002.  The specialist upon walking in the room immediately said that other practitioners had misdiagnosed me, she could tell by looking at me. 

I did not believe her and thus she suggested a $1000 test that my previous doctor had never even mentioned. It would specifically check my lymphatic system.  That is where I see the start of my current medical journey.  That test came back showing a clear lymph system but with the understanding that it something could develop because of what I was told I do have – Lipedema.  The doctor cried with me when I told her about my experiences. 

To put it into layman’s terms, Lipedema is a condition where your body stores dead fat cells from the waist down.  Those fat cells cannot be shed with diet and exercise.  What can be done?  Well, according to medical professionals, liposuction is the answer.  I am just not ready for that.  So I continue to get bigger.  When I diet, I get thin on the top and my pant sizes don’t change.  I get disproportionate. 

Fast forward.  The Lipedema is still here and my body is increasing.  The HCG diet I did in 2008 helped my upper body but overall not my lower.  In 2011, the Women’s Clinic I was going to was once again concerned about my irregularity.  They started mentioning all these pills they wanted me to take to have a period more frequently, which to me in reality sounded like hell. 

So, in early November I went to Acupuncture and asked them to help me get my cycle naturally to avoid all the medicines. Within a week a cycle came.  My cycle lasted a long time.  I say that I bled for the next 6 months.  In reality I was bleeding 22-25 days each month for 6 months. 

So, in April 2012 they give me pills to make the bleeding stop.  I gave in at this point, knowing how backwards all of this was.   I was referred from the clinic to the County Hospital to proceed with figuring out my mysteries. The bleeding stopped and at that point they wanted to test me for PCOS.  This is when my feeling of being broken began.

As a doula, I have accompanied women to ultrasounds. I get to see their amazing miracles swimming around and sucking their thumbs.  I know that ultrasounds are often a part of the journey to motherhood. 

I went in for a vaginal ultrasound to look for Polycystic Ovaries.  I had not realized what my emotions would do, but when they were monitoring internally and looking for possible cysts, which thankfully they did not find, I basically lost it. 

There I was in a dark room alone with this tech, looking in my empty womb and I could not help but think about how it may always be empty.  I may never have that experience of an image being filled with joy, showing a life and the little heart beat that accompanies it. 

As a doula I have felt that ultrasounds are often over done and perhaps unnecessary, but right now as I type this, I hope someday to have my womb filled and to be able to get an ultrasound to heal that scar, to see that I am not broken… that I am not empty.

The ultrasound came back clear. However since I had just finished bleeding for 6 months they were very concerned about how thick the lining of my uterus was.  So much so that the first thing that they decided from that test was that they wanted to do a biopsy for uterine cancer. One thing after another – when would it end?

In the mean time I have another cycle, which is similar to what I had in the past. 7-10 days.  I decided to let them know this time about how much blood loss I had. Thank goodness for being a menstrual cup user. I let them know that over that cycle I lost about a pint of blood.  When I find out that a normal cycle is about 2-3oz over time I got more concerned. 

So I go in for the uterine biopsy. It sucks but I get through it as they collect samples.  I just want clear news.  Results came back – no cancer – but because my lining stays so thick I am at a higher risk. 

From this point on, the talk of Fertility really gets going.  I was told that in order to get pregnant, I would need a regular cycle. Knowing pregnancy was in my future plans as our wedding was around the corner they put me in the schedule for a Hysterosalpingogram (HSG). 

On the day I started a cycle I had to call the hospital and in 10 days they wanted me to come in for a test.  So I called on the first day of my next cycle and my tenth day would land on a Saturday. I am told to try again next cycle as a Saturday appointment is not an option.

At this time she also says, “Can you please also give me some information…. Ok this is just in case we can not get you in over the next year we have to submit forms.” Um, a year?  At the start of the next cycle I call again, they get me in – thank goodness.  Meanwhile we are now married. We had an amazing honeymoon and came home NOT pregnant. 

The HSG is scheduled and all they say is to show up.  I get some warnings from friends that I may want to take an advil before the test.  Some say the test was uncomfortable and some say it is barely noticeable. 

My best friend drove me to my appointment where we waited a couple hours, which is normal for every appointment I have at the County Hospital.  I finally get in the room and undress.  They have me lay on a narrow table suspended rather high with a large machine above me. (It actually reminds me of my lymph test by the looks of it). I thought, oh this might be like my lymph test, that was not so bad… oh was I in for a surprise. 

The Dr. has me on my back, which is not actually my back because my butt is so big I am arched and they have no way to help that, and they have me bend my knees at the edge of the table.  The Dr. goes in through my Cervix and begins to inject liquid dyes. 

At first I feel cramping and within a minute I literally feel a loss of breath. Sweat drips down my face and neck, my body shakes and my insides feel like I am going to explode.  I cannot even control myself any longer, I can’t be laying down, she needs to stop. I ask her to stop and she reminds me to breathe, I try using my doula tricks the best I can and in my head I am thinking “F-THIS!” 

As the torture continues, the only other words from the doctor’s mouth, other than “Just try a little longer,” are, “That’s interesting, everything is just shooting right back out, it is not even going in at all.”  WHAT DOES THAT EVEN MEAN!?

I am in tears, I have never been in so much excruciating pain, pain I was not prepared for at all, and forced in an awkward and awful position.  I finally go out to my best friend who hugs me and drives me home.  The fact that I have also had so many blood panels done, I have been poked all over with needles, and had bruises on my arms from the multiple tests and the biopsy, they had nothing on the HSG. 

The results came in. The HSG has shown that my Fallopian tubes are blocked. They are sealed shut and the likelihood of even a surgery being successful is close to 0%.  My eggs are trapped and dissolving back into my ovaries.  Nothing can get in or out and they say it is likely scar tissue from possible endometriosis. They have no intentions of doing surgery to see or treat endometriosis unless I am in pain from it. 

After they tell me these results, the doctor hands me a business card for a local Fertility clinic and says, “There is nothing else we can do for you here, call us for your next pap smear or when you are pregnant.”  And with that I am sent on my way.  I am a mess, physically I feel insufficient as a woman, and emotionally I am exhausted and lost.  

During the past five months, since those results, I have been working on me – self-care, healing and moving forward.  My husband and I attended a Fertility Conference. I have returned to acupuncture to ask for clarity, mental well-being, and overall fertility health. I have attended restorative yoga and visited an Osteopath doctor. I have had scar-remediation therapy, to work on those fallopian tubes from an emotional place of knowing I did something to make them feel better, not exactly to make them free of scarring. 

We met with a fertility doctor and we are just starting the next part of this journey.  My journey to self-care is continuing, I am seeking more ways to strengthen my body and my mind, to let go of the things I can not change and be present.  I am nervous but hopeful.  The next major steps in this personally is learning more about the effects of pregnancy on Lipedema and how to further treat my condition and cope during gestation and then to go forth and hope our IVF works.