When I was pregnant for the first time, one night very early on in the pregnancy, I had a dream that my baby was going to be a little boy with blond hair and blue eyes, a little mini version of my husband. Eight years and six miscarriages later, I did give birth to a little boy, and oddly enough, the consensus is that he looks just like my husband. Those eight years before our son was born were filled with emotional highs and lows, and I still ask myself: why did I, and so many women like me, end up with so few answers about my miscarriages?
Recurrent miscarriage, defined as more than three consecutive pregnancy losses, affects about one percent of women. Although there are some known causes (the most common is antiphospholipid syndrome), which have effective treatments, for 50 percent of women with recurrent miscarriages, all diagnostic tests are normal and no cause can be found. In this group of women with unexplained recurrent miscarriage, the prognosis is fairly good, as many of these women will eventually have a successful pregnancy without any treatment. However, research suggests that the group of women with unexplained recurrent miscarriages may actually be made up of two groups. In one group, the miscarriages are due to chance alone, and women in this group have an excellent chance of eventual success. In the other group, there is an underlying problem that is not identified by current clinical investigations, and this group has a much poorer prognosis.
During the time I was trying to have a baby, I saw four different doctors (three gynecologists and eventually, a reproductive endocrinologist). I had many tests, and they all seemed normal. I was a relatively healthy 28 year old. I was told that if I just kept trying, I might eventually be successful. Although that approach is understandable given the potentially good prognosis for some women, it was difficult for me to believe that it was true, and it was even more difficult to consider getting pregnant a fourth time without trying some sort of treatment. Instead of trying to get pregnant again, we decided to adopt, and my husband and I were lucky enough to adopt two newborn girls, 15 months apart.
As the girls got older, we decided to try to get pregnant again, and see if my doctors could offer any new approaches. It felt to me that if I at least tried something different, that I could have some hope for a different outcome. My doctors tried various fertility treatments with the rationale that perhaps just increasing the number of embryos would result in one that could “stick.” I never got pregnant on fertility treatment despite a seemingly good response to it. Because I had always had painful periods that were worsening as I got older, I asked every doctor I saw about endometriosis and every time was told: “Endometriosis causes infertility. If you are getting pregnant, you don’t have endometriosis.” During that time, I had three more miscarriages.
Eventually I made my way to a reproductive endocrinologist. She agreed with my other doctors that there was no apparent reason for my miscarriages. However, by that time I had a large mass on my ovary, and I had laparoscopic surgery and was diagnosed with endometriosis. According to the scientific literature, there is insufficient evidence for a link between recurrent miscarriage and endometriosis, although it’s possible that many women with recurrent miscarriage have undiagnosed endometriosis, due to the assumption most doctors make that women with endometriosis are always infertile. My doctor did not think that my endometriosis was related to my miscarriages. However, she did decide to treat my miscarriages with a “cocktail” of medications: heparin injections, progesterone, low dose prednisone, and low dose aspirin. The rationale was that there was probably some undiagnosed problem causing the miscarriages, and the cocktail could cover a range of potential causes such as hormone imbalance, autoimmune issues, and thrombosis (which is known to be associated with recurrent pregnancy loss, through antiphospholipid syndrome).
The month after my endometriosis surgery I was pregnant again. I immediately started taking medications once I found out I was pregnant. Two days before Christmas we saw the baby’s heartbeat by ultrasound, but on Christmas morning I started bleeding. Six long weeks of watching and waiting began—I had a subchorionic hemorrhage, bleeding between the gestational sac and the uterus. Although this is not uncommon (3.1 percent of pregnancies), with my history it was worrisome, and I was on limited activity or bedrest until it resolved at 13 weeks. I could barely believe it when my son was finally born, healthy and full-term.
My doctors said that the endometriosis surgery had nothing to do with the fact that I finally had a successful pregnancy, even though the coincidence of having success only immediately after that surgery makes me wonder. Or perhaps my success was due to one or more of the medications I took during the first trimester—the recurrent miscarriage cocktail prescribed by my doctor. Having been diagnosed with a bleeding disorder recently (see my story here), five years after that pregnancy, I now realize that the heparin and aspirin were exactly the wrong medications to give me and probably exacerbated the subchorionic bleeding. But maybe the prednisone or progesterone, or both, were helpful. Or maybe it is just that I ended up being among the percentage of women with unexplained recurrent miscarriages who will eventually succeed without any treatment.
As a scientist, I wouldn’t normally be inclined to agree to the sort of treatment I ended up receiving for my miscarriages: they were hit or miss treatments, some of which were untested for safety during pregnancy (the prednisone), and all of which had no proven efficacy from clinical trials for treating unexplained recurrent pregnancy loss. However, as a woman with six prior pregnancy losses, I probably would have tried anything I thought had a hope of helping, as long as the risk seemed minimal. More research into this area is critical, so that other women don’t have to decide whether to choose treatments with unknown side effects and effectiveness, or no treatment at all, with the emotionally devastating risk of another miscarriage. Unfortunately, such research does not seem to be a high priority for our society.
Your story is very touching. I have suffered from 2 miscarriages with heartbeat, 3 D&C scrapings and severe endometriosis (a huge lump on my left ovary). Last year I had 3 D&C (one had to be redone due to infection) and one laparoscopy for my endometriosis. It has been an emotional roller coaster for me and my husband. My doctor claims he cannot find a reason for my miscarriages and advises to keep trying.
On my own initiative I asked to have a hysteroscopy and they found an apparently “insignificant” polyp. I also went to see a hematologist and did very extensive blood tests which resulted in the discovery of trombofilia. According to another doctor my blood test also shows that I might be having polycystic ovaries.
I am now on my third pregnancy (8 weeks) with a lot of fear of having another miscarriage. A new doctor has given me a similar cocktail of medicines. I am taking daily Clexin injections, progesterone supplements, Glucophage, aspirin, vitamin D and acid folic. I don t know if it s luck or one of the medicines but it seems to be holding so far. Fingers crossed!
My main advise for you is that if your doctor can t give you reasons for your recurrent miscarriages go and look for answers yourself. Question your doctor and go and see other specialists. Don t leave your fate in only one person’s hands. Hope this helps.
Good luck with your pregnancy Astrid! I hope it goes smoothly. I know how stressful it can be to be pregnant again after multiple miscarriages.
Thank you for sharing your story. The more stories like this that are told, the greater chance our system will change!
Thank you for your comment Dr. Braverman. This is definitely something that any endometriosis patient with recurrent pregnancy loss should consider.
I have done extensive work in this area. It is clear that endometriosis is a symtpom of underlying autoimmune disease. For those that have miscarried with endometriosis you should visit this page on my website.
Kelsey, I have heard the same thing. I think there is some decent research suggesting that endo can cause implanation failure for IVF. But the effect of endo on pregnancies conceived naturally hasn’t really been studied.
Courtney, I am very sorry for your losses. It is heart-wrenching. When they told me after my second miscarriage that I needed to have one more before anyone would do any tests, I just about threw a fit!
I’m sure you know this but fibroids can cause pain and heavy periods, and can be treated without a hysterectomy. Also, hysterectomy is not always helpful for endo. It is very important to get your endo excised by a skilled surgeon at the time of hysterectomy (or, just have endo excision surgery without a hyst) in order to get relief from endo pain–a hyst alone will not help endo.
Yes! Someone finally said what I’ve been thinking. I’ve been pregnant 9 times and have 3 children. I also have fibroids, endometriosis and who knows what else. I never had problems getting pregnant and none of the specialists (reproductive end, allergists, hematologists, etc) could give me answers as to why I kept losing my babies. It was heart wrenching. Even worse, it takes a few miscarriages for doctors to take notice. Finally, my reproductive endocrinologist gave me the same “cocktail” plus some and told me if this didn’t work, he had nothing else for me. Thank goodness something must have worked…now I’m contemplating a hysterectomy due to such painful,heavy,long periods accompanied by headaches, nausea and/or IBS. It’s so frustrating that there is research and all kinds of meds for things like male erectile dysfunction, yet so little research and meds for whatever this is…
I’ve actually heard from some doctors that endometriosis can create a toxic environment, which could impair implantation, and some women I know who have Endo suspect that it contributed to their miscarriages. We certainly need to do more research. Thanks for sharing your story!