My name is Carrie and I have been suffering with endometriosis for four years. Here is my story...

My husband and I started trying to conceive back in November of 2009. I was 27 years old and very excited.  About seven months later, I found out I was pregnant. The timing didn't seem right with my cycles, but my blood test came out positive. Since the pregnancy levels were on the low side, I had to go in the next day for another test. Unfortunately, my levels went down and I had my first miscarriage. So, my OB of course said - well, the good news is that you got pregnant.  I went on hoping it would happen again soon.

Two months later, I started having weird pains on my right side. I decided to make an appointment with my OB after several days of pain. When he examined me, he felt a knot on my right ovary. After having an ultrasound, they found a large ovarian cyst the size of a grapefruit. I had my first laparoscopy surgery to remove it and found out it was an endometrioma. The doctor was able to save my ovary, which was great news to me.

A month later, I started having the same pain on the same side - only this time it was worse! My husband took my to the ER where we found out I had another cyst the same size on my right ovary again. The hospital thought I never came in for the first surgery. I was heartbroken. I thought this was taken care of. I went through my second lap and this time, they had to remove my right ovary and fallopian tube because of the damage. My doctor also told me he cleaned out the rest of the lesions and scar tissue from the endometriosis. Everyone kept telling me I still had my left ovary and I should be fine. I couldn't help but feel scared. My doctor put me on the 3 month Lupron shot to try to stop any more growths. I was again heartbroken to hear that I would not be able to get pregnant for at least four months.

My husband and I decided to make an appointment with an RE. I was told during this meeting the only way I would get pregnant is through IVF. Since I had a feeling this was coming, I wasn’t too surprised. Once I got my period after the Lupron wore off, I went in for a follicle count. I had 27 follicles on my left ovary! Great news! Then the bad news - I also had a small cyst. My RE recommended I go in for a third surgery to remove it. We decided to go for it and I had my third lap. Unfortunately, that was a bad mistake.

That summer after my third surgery, we met with another RE to set up for our first attempt at IVF. The doctor was pretty positive that we would have a good outcome because of my age and number of follicles still in my one ovary. We signed all the paperwork and ordered all of the medicine. When it came time for my ultrasound, I was relieved to find out I did not have any cysts. I called the office later that week to make sure everything was okay to start the medicine.  As it turned out, my high follicle count turned into a very low count. I only had one follicle. How did I go from 27 to 1? They recommended I didn't even attempt IVF. I was again heartbroken.  The doctor blamed it on the third surgery and said too much of my tissue was taken. I was so frustrated. We went ahead and tried mini IVF instead (same idea, less medications). During this cycle, I had three follicles, but they were not responding to the medicine. I was devastated and frustrated. In fear of getting another cyst, I decided to go back on birth control.

In the mean time, my identical twin sister was pregnant with her third child - having no problems with any of her pregnancies. When I brought this up to the doctors, they said the reason she had luck was because she started her family earlier. Knowing this was going to be her last, I asked her about egg donation. Of course, she was willing to help me in anyway. I was so fortunate to have her. Five months after she gave birth, we went into a new office and started talks of IVF with a known egg donor. All of the initial tests came back good and we were on our way. Her follicle count was 55. I couldn't believe it! We thought for sure we would get plenty of embryos. The medication wasn’t too bad. The progesterone shots were not great. My husband had a whole song for me before giving it to me. You have to laugh about this stuff some how. My sister did great. After the procedure, they were able to get 32 eggs. Out of the 32, 28 fertilised. On day 3, 2 of the embryos looked good and we went in for an embryo transfer. I got a call two days later that they were able to freeze 2. I know I should be lucky that they were able to freeze any of them, but I just couldn't believe we went from 28 down to 4. This whole process is just a big game.

Two weeks later, I found out we were pregnant! But again, my levels were low. They had me come in two days later only to find out they went down. I was having a second miscarriage. Once again, I was heartbroken. Thank goodness my twin sister was in the room with me when I found out. It took me a couple days to process everything. I just hung on to the hope that the next transfer would work. The plan was to get ready for the next embryo transfer after my next cycle.

In the meantime, I just wanted to escape. My husband and I decided to take a trip to Mexico to get away from reality for a bit. The week before we left, I started getting really bad pains in my left side. I just knew it was another cyst. Since we were leaving in a couple days for Mexico, I made an appointment with my RE. When I went in for my ultrasound, I was surprised to hear that it was actually a follicle and I was getting ready to ovulate. I was surprised to hear that my body was actually working. The nurse told me to get busy. I remember thinking that it was a good thing we were going on vacation. We didn’t think much of it and headed out for our trip. Two weeks later, I got the surprise of a lifetime - a positive pregnancy test! I was in shock. After everything we went through - the shots, the money, the procedures - I was able to get pregnant naturally. The next ten months were nerve racking.

On March 6th, I gave birth to our son.  He was perfect and such a miracle.  

Endometriosis has made my life very difficult. Having to go through infertility is something I would never wish on anyone. It is mentally and physically exhausting. I am so fortunate to have my husband. He has been so supportive through everything. It was and still is so hard feeling broken. And I can’t thank my twin sister enough for what she did for me. We still plan on using the frozen embryos soon. In the mean time, I am trying to conceive naturally again.  

I hate living in fear of my endometriosis. I am so scared that I will have another cyst. I pray and pray everyday that my left ovary stays healthy.

What I want to tell people with endometriosis who are trying to conceive is don’t lose hope. A very well known respected doctor told me that I would never get pregnant. Life is full of surprises and miracles. Always believe.


Thank you for sharing your story Carrie.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.

S.