Endometriosis & my infertility story
After seven years and two miscarriages, I asked my husband, Anthony, what we should do. Do we stop trying? Or do we continue this journey of infertility?
My reproductive issues began when I was 25 years old. My periods up until then had been fine. I was living with my friend, Jenny, when I first experienced the pain. It was an intense, searing, stabbing pain along my lower abdomen. It felt like my insides were going to burst. It was debilitating. I was scared, and so was Jenny. We thought I had appendicitis, so she called 911. At the hospital they gave me drugs to dull the pain, did a bunch of blood tests, and did an ultrasound. It was not appendicitis, and the ultrasound determined that both my uterus and ovaries were within normal limits. Everything seemed fine. Still, I wound up in the hospital twice more for that same pain. The second time I was hospitalized it was suspected that there might be an ovarian cyst on my right ovary. I was told taking the pill would help the cyst go away. But I didn’t like how the pill made me feel, and I wasn’t concerned about a possible cyst. So I took pain meds—a lot of them. I was a Pamprin junkie. I was young, single, and having fun. I wasn’t concerned about starting a family.
Of course that changed once I met Anthony a few years later. I started to worry about why I was still in pain. I wondered if the pain I had been in for the last 2 years was going to be an issue getting pregnant.
After Anthony and I were married, we didn’t actively try to get pregnant. We just decided to stop being careful and let whatever happen, happen. But then nothing happened. I thought getting pregnant was supposed to be easy. The fear of getting pregnant in high school was imbedded in me. I thought as soon as we stopped birth control I would instantly be knocked up! It seemed to be working for all of our friends and family. Why not us? We were in love, we had a house, we had jobs, and we had a great support system. I worried that something was seriously wrong.
A few years after nothing happened and the pain persisted, I started seeing an acupuncturist who had experience with infertility. She helped with the pain, which I believe helped us to get pregnant. It took a while, but after 4 years we were pregnant. I remember being so excited but also nervous. I started to have dreams about blood. I knew something was wrong. I miscarried at 6 weeks. I became depressed. After waiting for so long I thought that this was it. A lot of people told me that many women miscarry the first time, that it was normal, and that they go on to have a normal pregnancy. Nothing anyone said made me feel any better. In the back of my mind I knew that my pain wasn’t normal and that might be the reason why it was so hard to get pregnant in the first place. I felt like I didn’t protect my baby. I felt like I could have done more. But the reproductive gods were working against me.
I was facing a laundry list of fertility problems including a low ovarian reserve, extremely low progesterone, endometriosis, a genetic mutation MTHFR, a possible ovarian cyst, and a tilted uterus. I went to acupuncturists, naturopaths, nutritionists, fertility doctors, pelvic pain specialists, an iridologist, chiropractors, herbalists, massage therapists, Reiki healers, and even a few psychics. Physically, I thought that my body wasn’t cut out for this. Emotionally, I was unhappy and discouraged.
After each specialist failed to solve my fertility problem, we would place all our hope in the next specialist. But that’s not to say I didn’t find solutions to some of my issues along the way.
The naturopath determined I had a low ovarian reserve and low progesterone. Having a low ovarian reserve sounds like an ovary death sentence. In my mind my ovaries were hunched over walking around with canes, which to some extent was true. I was in my early thirties, but my eggs were a lot older. The naturopath put me on some supplements and said, “Don’t worry, all you need is one good egg!
I found another acupuncturist, who continued to help with my horrible cramping pain. Which, I later learned, thanks to the fertility doctor, was due to an ovarian cyst that had been suspected years back when I was hospitalized. Oh, and I also had endometriosis. Unfortunately, I had to have laparoscopic surgery to find that out. I was told that the ovarian cyst took over my right ovary, causing my left one to do all the work. And that endometriosis, which is an awful, painful, chronic disease, has no cure, and they don't know where it stems from. Imagine someone telling you that you have a disease that has no cure… that it may or may not have something to do with having a miscarriage… and that if I had only done something when I first started having that pain all those years ago (instead of masking the pain), maybe things would be different. Maybe I could have stopped the endometriosis, maybe that cyst never would have grown and taken over my ovary, and maybe I would already have a baby by now.
All of this was discovered AFTER taking 5 rounds of Clomid and HCG shots, which did nothing but make me feel like crying. While on these medications, I had to get ultrasounds all the time. Vaginal ultrasounds. That might be why I always felt like crying. My va-jay-jay was constantly getting played with and not in the fun way!
MTHFR, which I lovingly refer to as the “motherfucker” gene, was also discovered by my fertility doctor. Having MTHFR means that my body doesn’t absorb folic acid, something that can be helped by taking methyl folate. This may also be why I have endometriosis. Hence the nickname, “motherfucker.”
Doctors say that after treating endometriosis you have a better chance of getting pregnant. And a year later we were! But at 7 weeks I miscarried, again. Why me?! Why does a teenager get pregnant when she’s trying not to, but I can’t get pregnant while trying everything? I was the healthiest person I knew. I changed my diet, I exercised, I took my supplements—I did everything I was supposed to do. The next steps were more fertility drugs and doing an IUI.
When Anthony suggested maybe trying the IUI, I took a moment and then, surprising myself, said no. I was done. I was in my late 30's, and I wanted to live out my remaining fertile years without being a lab experiment, without having to schedule everything around my fertile window. I felt guilty after I said no. I felt like I was letting Anthony down. He told me that he loved me and as long as I was healthy and happy he would be okay with whatever I felt comfortable doing. Even if that meant stopping the fertility treatments and letting fate take its course.
The thought of going back to the fertility doctor made me want to cry. It made Anthony want to cry thinking of giving me hormone shots again. On the other hand, it’s a blessing those treatments exist. I know a lot of women who have had great success with them. We just weren't sure those treatments were right for us.
I was fortunate to have a couple of years where my periods were "normal". Minor cramping, and the occasional PMS were a blessing compared to what my body goes through every month now. The"endo belly"( see before and after pics below) and the sharp, stabbing pain are back. I see an acupuncturist, a mayan abdominal massage therapist, take an arsenal of supplements, and do a lot of castor oil packs in the hopes of not having to have another surgery.
Living with Endometriosis has taught me patience, to listen to my body and to accept that while there is nothing I can do to make it go away for good, I can continue to fight for myself and others on having a voice about it. Hopefully, one day soon there will be a cure.