What does your endometriosis mean about future fertility?
As we wrap up #endometriosis awareness month, I hope that many men and women have learned a lot over these past few weeks about this common (1 in 10!), yet poorly understood, condition. The chronic, and sometimes debilitating, pain that is often the hallmark of endometriosis is one of the symptoms for which we certainly need more awareness, but also better treatment options. There are a multitude of pelvic pain specialists that can offer a variety of solutions beyond popping pills. However, as if this weren’t enough, endometriosis can also impact fertility. Many of my patients have learned over the years how to manage their pain, only to belatedly realize the impact the disease has had on their plans to have a family. This shouldn’t happen! We need to get more information out there, to decrease the delay in diagnosis and treatment, and get women the counseling they need. So let’s get to it.
First of all, let’s review a bit. Endometriosis is essentially when cells similar to those that typically line the inside of the uterus grow in other locations. Most common spots include the ovaries, Fallopian tubes, the tissue lining the inside of the abdomen and pelvis (i.e. peritoneum), but sometimes it can travel to faraway places like the chest cavity!
The “gold standard” way to diagnose is via minimally-invasive laparoscopic surgery to find actual endometriosis, which can be confirmed by a pathologist’s examination of that tissue. However, our clinical suspicion — based off of painful periods, for example — is often enough to trigger some further evaluation or treatment. There are lot more scientifically-accurate patient-oriented facts to be found here, in English and en Español.
But given our focus today, one of the big questions is: does endometriosis always affect fertility? Thankfully, the answer is no. BUT, the rate of achieving pregnancy/month trying is reported to be lower in women that have endometriosis (2–10%, rather than 15–20% in healthy young women)*. Essentially, this means that some women will still get pregnant without issue, but the most likely to conceive will be those are that younger, have milder disease and no other fertility diagnoses.
There are many theories as to why or how endometriosis can impact fertility. Certainly, we know that these endometriosis implants can block Fallopian tubes, scar the ovaries or tubes into distorted positions, eat into normal ovarian tissue and release pro-inflammatory chemicals. There may be other subtle hormonal changes as well that impact the ovaries or uterine lining. Even in the context of IVF, eggs retrieved in the setting of endometriosis develop into embryos at lower rates and more slowly.
So, for many women, the diagnosis will have fertility ramifications. I wish that this information was readily available so that women have the opportunity to plan ahead. We can all agree that no one likes to be surprised with bad medical news! When we think about treatments, though, only in certain cases do they seem to improve fertility. Medical therapies (of which there are many!) can improve symptoms and pain, but have not been shown to improve fertility. Indeed, all of the hormonal treatments prevent ovulation (release of the egg), so they cannot be taken while trying to conceive. This is incredibly frustrating for many of my patients who struggle with the thought of being off therapy and dealing with pain during the months it may take to get pregnant.
Surgical treatment is another option. I remain wary about how much over-surgery we convince women with endometriosis to undergo, and I encourage every woman considering this option to make sure they understand the specific indications and goals for her case. I have taken care of a lot of women who are completely asymptomatic but have had multiple surgeries “to clean them out”. There is not evidence to support this!
The highest-quality scientific literature suggests that for mild endometriosis, the live birth rates might go up a little with one surgery. In actual numbers, it would take a gynecologic surgeon about 12 cases of actual endometriosis to help one additional live birth happen. Because we can often be wrong with our clinical suspicion, and so many women who go to surgery don’t end up having endometriosis, if we consider all women who go to surgery for this indication, it would more likely mean 40 surgeries to help create one additional live birth!
For more severe cases, one surgery to remove all visible endometriosis can boost the chances of a pregnancy. However, with severe cases, the actual surgery is more difficult and carries a higher complication rate — and, if an ovarian cyst needs to be removed, may result in some loss of normal ovarian tissue as well. So for the asymptomatic patient, surgery should really be postponed until someone is getting ready to start trying. If the tubes are then confirmed to be open, and they are still not successful within 6 months or so, I would recommend further fertility evaluation and possibly treatment.
Honestly, though, real-life situations are usually more complex. You may need multiple surgeries if you develop recurrent pain years after an initial procedure. If you’ve had an in-depth conversation with your surgeon about why the surgery is indicated, how the timing aligns with your symptoms and reproductive plans, and what are your next best steps afterward, then you are good to go! Many women come in to get a second opinion on whether they should go for surgery, and I think that’s a smart thing to do if you’re unsure!
So. Let’s say you’ve got endometriosis, or you love someone who does. There are preemptive pro-fertility steps to take. First and foremost is to take care of yourself. Find a doctor who listens to you and can get your diagnosis confirmed. On average, it takes nearly 10 years and multiple doctors before women get an explanation for their symptoms, and we can all help spread awareness and reduce these delays to treatment. Once you get a diagnosis, try your best to find a regimen to control symptoms and be healthy (aside from the medical resources I already linked, I think this blog is an amazing first-hand guide!).
Keep in mind that hormonal treatment masks your normal period, so it may be hard to know if your normal cycle is changing (suggesting in some cases that the ovaries are aging a bit faster than they should). Particularly if you have ovarian endometriosis (often times comes with something called a “chocolate cyst”, basically a collection of old, brown blood that can start taking up too much real estate in the ovaries and crowd out the healthy ovarian tissue), you may want to have a reproductive endocrinologist on board to help you keep track of your ovarian reserve (essentially our methods of quantifying how many eggs are still present). If it seems likely you may need IVF in the future, you might even consider whether freezing eggs or embryos ahead of time is an appealing and plausible option for you.
If you are ready to try to conceive, you could consider that specialist consultation early in the game to check out whether your ovarian reserve and whether your tubes are open. If you’d rather wait, and 12 months of unsuccessful trying goes by (6 months if you’re 35+), come on in to get the information you need.
For me, the toughest consultations are the ones where my patient feels that she would have made different decisions in the past if only she had had all the information then.
Trying to decrease the rate of that situation occurring is largely why I started this blog! With endometriosis, there are so many frustrating angles, but fertility may be one that many women aren’t given the opportunity to plan ahead for. Rare cases (like Lena Dunham)in which the uterus is removed (or the actual definitive treatment, which removes uterus and ovaries) might mean re-conceptualizing a path to parenthood (if one wants it!), that may include donor eggs, a gestational carrier, fostering or adoption. There is never a wrong decision, but having the knowledge and empowerment to choose — ahead of time — the one that is most right for you is what matters most! So get out there, and #fightlikeagirl for your health and happiness! Good luck!
*Unless otherwise mentioned, the synthesis of data presented in this article is drawn from the American Society for Reproductive Committee Opinion on Endometriosis and Infertility.
