Infertility: Endometriosis, Blood Clots (Factor V Leiden), Low Progesterone

I was 14 years old when I first learned that having children could be difficult for me.  I was having extremely painful abdominal cramping anytime during the month, not just during my period. It was incapacitating- I would be curled up in a ball unable to move, making me miss both school and work.  I had very heavy periods, always lasting 7 or more days. I was lucky that my first job was at an OB/Gyn’s office, and that my mother worked there too; because of this others were able to recognize that something was abnormal. 

To check to see if anything was amiss I was given a vaginal ultrasound. For a naive 14 year old being told how the ultrasound was going to be done was intimidating, but my mom was there to reassure me.  In no time at all it was obvious that I had severe ovarian cysts.  A laparoscopy was scheduled for the following week. 

Laparoscopies are used as a diagnosis tool for endometriosis- which is uterine cells having attached themselves outside of the uterus.  If anything is found amiss during the surgery it can be fixed using a laser to burn away the bad cells, and to drain the cysts.  It was discovered that I did in fact have endometriosis. I was told that the best thing to keep it at bay was taking birth control pills and skipping the placebo and going right to the next month without having a period.  This sounded super awesome to only have to have 1 period a year. I was also told that there was a chance that it would be very difficult to get pregnant, but being a young teen this wasn’t a giant concern for me.

 

I was married at 21. My husband and I decided to hold off children for 1 year, since we had only known each other a total of 4.5 months.  I told my husband, before we were married, that it may be difficult for us to conceive, and he was happy with the fact our family may have to come from adoption. We had decided if we had to start a family through adoption we would do an open, and always tell our children, “you were always ours, Mommy’s body just couldn’t get you from Heaven so we used some help.” 11 months after we were married it looked like we wouldn’t have to worry about going that route, it was my first month off birth control and I had a positive pee pregnancy test. The next day I started bleeding. This would be the first of 8 known times, there are probably more, that this would happen to me. I had a blood test after that and the OB/Gyn said that she doubted that I was ever actually pregnant, and I that I had a rare false positive, since the hormone levels were so low it did not look like I had been.  That period was unusually heavy, with lots of blood clots, she might not have thought I was but it defiantly seemed like I was to me.

 

Fast-forward a couple of years with nothing happening but the single day positive tests. I was very good about getting my annual exams, and it was during this that we discovered a second reason why my fertility was less than ideal. When filling out the annual paperwork I had put something down under Cardiac that I had previously not. That my Mom, and all of her Brothers and Sisters, and recently been diagnosed with Homozygous Factor V Leiden. Three of the ten of them had had blood clots in the last year, so they all got tested. My doctor looked at that, and said “I will be right back,” she had to grab one of her books just to know the test to order to see if I had it.  She explained that what may be happening is that when I break the odds of getting pregnant with endometriosis, that as soon as the blastocyst tries to implant, my body fights it to remove the “blood clot.” I was tested and it was discovered that I was heterozygous, but it is an autosomal dominant condition, so even carriers show signs of the disorder. For my Mother the odds of a blood clot are 1 in 13, for me they are 1 in 125. I now had two confirmed strikes against me.

 

Every couple of years, both before and after I was married, I would have to have a laparoscopy to clean up the endometriosis. I would get to the point that I couldn’t move, I would call for a pain pill prescription, and schedule a surgery.  I wouldn’t even bother scheduling an appointment with the OB/Gyn that I used for my surgeries (yes I used different ones for different things), since it was already known what was going to happen, and why. I was told that a lot of women with endometriosis would get pregnant right after having a laparoscopy.  I was very hopeful and scheduled an appointment to discuss trying to conceive (TTC). I was told I needed to get a baseline blood test for progesterone on day 21 to see where we were with my ovulation. If you are TTC you want your progesterone to be between 15-25, over 20 is ideal, mine… 2.5- strike three- some tests don’t even go that low. I was told to call on day one to get a prescription, I did and the nurse on-call never ordered the prescription. I took it as a sign that I wasn’t going to TTC then.

 

I started planning my hysterectomy when I was 14.  I would get it after I had 4 kids, or when I turned 30, whichever came first. It was at our 8th anniversary when my husband and I were discussing the surgeries that we would be getting over the next year- DH would get his laser eye surgery, and I would get my hysterectomy. DH had is eye surgery in January since there are lots of discounts for getting it at the first of the year. My hysterectomy would be in December- my birthday, Christmas, 9th anniversary present.

 

My mother and husband both asked me to try fertility drugs, since I had yet to try them in years past. My husband and I agreed that we would give it a few months try, that we wouldn’t go as far as IVF (we couldn’t afford it, and it isn’t covered by our insurance), and if nothing happened we would be happy. If something did happen we would be happy. It was 10 months before my 30th birthday when I met with a third OB/Gyn who specializes in infertility. He asked some questions, I got my annual Pap smear.  My husband had a prescription written to get his sperm count done; I was given  one for 3 months of Clomid at its lowest dose. I was told how to take the Clomid, and we were sent on our way.

 

Getting a sperm sample is quite the giggle inducing event. We were at a fertility clinic, brought back into a little room that had “absolutely no children allowed in this room” placard on the door. Handed a collection cup, and where given instructions on the many options on how to collect the sample. Now my husband and I are LDS and always have been, so some of the collection options were not things we had done before. Plus the thought that people knew exactly what we were doing in that room caused a fit of giggles that you would not believe. In my psychology class this semester one of the class discussions was on fertility drugs, IVF, surrogacy, and egg donation. Many people in the class were talking about how impersonal it must be I had to step up and give very detailed descriptions on how it isn’t impersonal and that it can still be a romantic couple’s event. We eventually were able to get a sample. We had planned to meet my mother for lunch afterwards, but there was no way we were going to do that now. We had a nice lunch just the two of us and headed home.

DH’s sperm count was and I quote “super, awesome and amazing, he clearly is not the source of the infertility.” Thanks dear I am glad my three sucky reasons are the only ones we have… I sort of hoped at least a little of it would have been on his shoulders.

 

At the time that we were going to all of these doctors’ appointments I had just hit my 5 year mark with a company. I was a store manager; I had just gotten an award for my store being 5th in the company, which was impressive since it was in the bottom 5% when I took it over 10 months previously. It was a very, very high stress job. I would work an average of 70 hours a week. During the Christmas rush- it is a video game store- I had had my most resent miscarriage. It was March when I was starting my first round of the drugs, I was fired almost to the day that I found out I was pregnant, because one of my employees was working off the clock without my knowledge. This would be a blessing in disguise, since it let my body get the rest it needed, and reduced stress.

One month on the Clomid and I was pregnant. I set up an appointment with the OB/Gyn that I get my surgeries with, since because of the Factor V Leiden I am considered too high of risk for my regular maintenance OB/Gyn, and the fertility OB/Gyn doesn’t deliver babies. I had my first appointment at 5 weeks, since I have such a bad history of miscarriages before 6 weeks. Blood tests were ordered to make sure my hormones were increasing. I had to get on low dose aspirin to help prevent blood clots. Ultrasounds were ordered for that day and at week 6 to check that everything was as it should be given my miscarriage history. I have a family history of twins and being on a fertility drug we needed to check for multiples right away too. The first ultrasound couldn’t see anything, the second ultrasound had one little sac. I was actually surprised there was only one, but happy, somehow we knew it was a boy right away too.

 

A mostly uneventful, text book pregnancy and I finally got to be a mom.  I knew because of my difficulties getting R2 that I would start trying again as soon as I could. Fast forward 15 months, and my first period postpartum- thank you breastfeeding. I scheduled appointments right away to start fertility drugs again. Six months of progressively increasing doses of Clomid later and I am still not pregnant. The last two months the week after my period I had the same mental fog I did during my postpartum psychosis. I have been having emotional, psychological, and physical roller coasters that have left me an empty shell. On Friday I was told that my day 21 progesterone was 1.5, even on the Clomid. I have been given the choice to try something called superovulation, which entails many ultrasounds, intense Clomid dosing, and potentially artificial insemination. I have come to terms with the fact that I will probably only have one child, and am planning my hysterectomy in January. I am considering doing two months of the superovulation, so that I can say “well at least I tried,” but I am so emotionally drained I don’t know if I will. I have about a day left to decide, any prayers of support would be much appreciated. Thank you for listening to my trials, and I hope it lets someone else know they are not alone as they go through similar trials.  For those women who have experienced the pain of infertility, my prayers, and positive vibes go out to you.