One of the questions asked around a suspected endometriosis diagnosis is, “How do I find a doctor who knows how to treat endometriosis?”
This is probably one of the most frustrating dilemmas whether or not you've officially been diagnosed with endometriosis. But where do you start and how do you know what type of specialist you need to help manage your endometriosis?
In this article, we will discuss what an endometriosis specialist is and how to find one in the US.
What is an endometriosis specialist?
There are a few doctors that have made endometriosis their primary focus. These respected authorities on the subject are usually located in larger metropolitan areas or teaching hospitals, although a few can be found in smaller communities.
But while there are some doctors that have lots of experience with the disease, the unfortunate truth is that there is no official standard of care for endometriosis.
That also means that there is no official medical degree that a doctor can get in order to be officially deemed a “specialist” in endometriosis.
Yes, you read that correctly. Despite the fact that 1 out of 10 women has endometriosis, there is no such thing as an 'endometriosis doctor' that has been officially designated as such by the medical community. Any specialist you may come across may have taken additional training, conducted research, and/or has actively pursued endo patients. But, it's important to know how much opinions and levels of relevant experience can differ.
Of course, that means the onus is on you as the patient to find a specialist you can trust and support you based on your goals, your symptoms, and your financial options.
An endometriosis specialist cannot cure your endo
This is probably not what you wanted to hear, but it's true.
We have a long way to go before we have the ability to cure endo entirely. Even the best doctors in the world cannot guarantee that medication or surgery will work forever.
Here is a breakdown of what you may expect after different types of surgeries:
Laparoscopic Surgery: Laparoscopic surgery is the most commonly used surgical treatment for endometriosis. According to studies, the recurrence rate after laparoscopic surgery ranges from 20-50% within 5 years after surgery.
Hysterectomy: Hysterectomy, a surgical procedure to remove the uterus, has been shown to be effective in treating endometriosis. However, the reoccurrence rate after hysterectomy varies greatly depending on the extent of endometriosis present. In general, the reoccurrence rate is around 20-30% within 5 years of surgery.
Excision Surgery: Excision surgery is a type of laparoscopic surgery that removes endometrial tissue with precision. This type of surgery has been shown to have a lower reoccurrence rate compared to other types of surgeries. According to studies, the reoccurrence rate is around 10-15% within 5 years after surgery.
Combination Therapy: Combining medical therapy with surgery has been shown to reduce the risk of reoccurrence of endometriosis. A common combination therapy is hormonal therapy with laparoscopic surgery. According to studies, the reoccurrence rate is around 10-20% within 5 years of combined therapy.
So, even the best doctors can only provide you with options - whether that’s through medicine or surgery - that will help you manage symptoms and stop the progression of endo.
There is no guarantee that any surgery, even a hysterectomy, will completely solve the issue.
What kind of endometriosis specialist do you need?
The type of clinical care that you may need will depend on where you are in the endo journey. We'll break down what you want to look for in a specialist based on whether or not you've been diagnosed and what you've already tried.
And, if you want more support in helping you plan out the next steps in your journey, sign up with ELANZA to get a care navigator.
1. You’ve just been diagnosed with endo or are seeking a diagnosis
The first step in either receiving a diagnosis or getting initial access to medical care will require you to see someone who understands the disease.
Depending on your insurance coverage, you may need to start with your general practitioner (GP) and advocate for your symptoms before getting to see an obstetrician-gynecologist (OB-GYN), gynecologist, or a qualified nurse practitioner.
These clinicians can prescribe medications such as hormonal birth control, GnRH agonists, and pain medication to help manage the symptoms of endometriosis.
IMPORTANT NOTE: Many gynecologists are not adequately equipped or experienced in endometriosis. It is not a requirement in medical school (!!) and if they have not sought out additional training or dealt with a vast number of endometriosis patients, it’s unlikely that they will know how to support you.
It’s because of this that it can take an average of 8 years to get diagnosed and can cause severe mental health issues when doctors dismiss the pain of the disease. We are working hard to change that with ELANZA.
Sign up here if you want to learn more.
2. You’re trying to get pregnant
Reproductive endocrinologists (also called REIs or fertility doctors) are specialists in reproductive medicine and infertility.
Fertility doctors have completed additional training in the diagnosis and treatment of conditions related to the reproductive system, including endometriosis. This is especially important because endometriosis and infertility are often related and a specialist can help advise you on your options based on your symptoms, your medical history, and your family-building goals.
Fertility doctors may work with OB-GYNs to manage endometriosis and provide fertility treatments. It's important to note that most fertility treatments are not covered by insurance, making this option considerably more expensive.
3. You’ve been trying to manage your endometriosis with medications and nothing has worked
In some cases, surgery may be recommended to remove endometrial tissue and thus a surgeon.
OB-GYNs are surgeons who have completed specialized training in the diagnosis and treatment of conditions related to the female reproductive system, such as endometriosis, and in childbirth and prenatal care are technically qualified to conduct an endometriosis surgery.
The type of surgery will depend on the severity of the endometriosis and the individual case.
It is important to note that surgery should not be the first line of treatment for endometriosis and should be considered after other treatments have been tried and proven ineffective.
Finding a true endometriosis specialist can be harder than you think
It is possible that some doctors may gaslight patients with endometriosis, although it is important to note that this is not true of all doctors.
Gaslighting is a form of manipulation in which one person makes the other doubt their own perceptions and memories. In the case of endo, many doctors are not equipped with the tools or experience to identify and validate the pain people feel from endo.
There have been numerous reports of patients with endometriosis being dismissed or not taken seriously by their doctors.
When we asked the ELANZA community about their experience with healthcare providers and here are some of the things they said.
I wish doctors would have believed me about the severity of the pain I was in.
I wish someone told me my pain WAS NOT normal.
I wish my gynecologist had listened to my concerns.
I wish someone had taken my complaints seriously.
I wish someone took my pain seriously and looked at my body holistically.
There are countless stories about doctors that dismiss a patient's symptoms as being "all in their head," or may suggest that their pain is not as severe as they claim. This can be very damaging and can lead to a lack of trust between the patient and their healthcare provider.
If you feel like you are being gaslighted by your doctor, it is important to speak up and advocate for yourself.
You know your own body and experiences better than anyone else, and it is important to trust your own instincts.
If you feel like your doctor is not taking your concerns seriously, you may want to consider seeking a second opinion or finding a new healthcare provider who is more attuned to your needs.
How to find an endometriosis specialist
Consult with your primary care doctor
Your primary care doctor can provide recommendations for endometriosis specialists in your area. They may also be able to refer you to specialists at larger hospitals or medical centers, which may have more resources and experience in treating endometriosis.
Certain types of insurance may not cover an appointment with an “out of area” doctor, so you may have to pay out of pocket.
If the means are available, you may want to consider traveling to see an expert, especially if you live in an area that doesn’t have access to an endometriosis specialist.
Research specialists in your area
There are several online resources that can help you find endometriosis specialists in your area. The Endometriosis Foundation of America maintains a database of endometriosis specialists, including gynecologists, reproductive endocrinologists, and pain management specialists.
Once you identify a few, see what may be covered by your insurance.
See what others have to say about that specialist
In addition to the clinical community, see if other people have had experience with that doctor. Please like the endometriosis support group can be a good place to cross-check if others have undergone treatment or surgery and what their success was.
Other online forums, blogs, and newsgroups can also provide a wealth of information.
However, proceed with caution. Many people have polarizing opinions that aren't always aligned with your needs, symptoms, or goals. That is, before you rule a doctor out based on a negative review in a support group, ensure that you do a little more research and perhaps a consultation.
Don't be shy about getting a second opinion
In an ideal world, every individual with endometriosis would have their pick of several specialists. If you are in this advantageous position, narrow your choices down to two or three doctors.
Then ask each doctor to review your medical records and outline a treatment plan. There may be a charge for this service, but it is well worth it.
Checklist for vetting potential endometriosis specialists
Does the doctor have a particular interest or experience in treating endometriosis?
Even though the response to this question should be obvious, it isn't. Many individuals believe that all gynecologists are specialists. endometriosis specialists are all gynecologists, however, not all gynecologists are endometriosis specialists.
It's important to look for someone who has a lot of experience treating the condition. This is especially important if you are seeking treatment for fertility issues, as endometriosis can be a complex condition to treat in this context.
You can ask your potential specialist about their experience treating endometriosis, or ask for references from other patients they have treated. Another key element here is doing the doctor work cooperatively with other specialists who have a history of caring for endometriosis patients (ex. GI doctors, pediatric gynecologists, psychotherapists, etc.)
What is the doctor’s attitude about your role in your health care?
Are they open to hearing your suggestions? You need to have faith in your expert.
However, only you are familiar with your body. You can determine whether or not something is good for you based on your prior experiences or even your intuition.
What is their approach to treatment?
Different endometriosis specialists may have different approaches to treatment. Some may focus more on medication and pain management, while others may be more inclined toward surgery. It is important to find a specialist whose approach aligns with your preferences and needs.
Does the doctor have experience with related conditions?
This might imply IBS, problems with the kidneys or bladder, or appendicitis, to mention a few. The more information they have on these illnesses resembling endometriosis in terms of symptoms, the more likely they won't misdiagnose you.
Again, don't be afraid to get a second opinion: If you are not comfortable with the specialist you have been referred to, or if you feel like you are not getting the answers you need, it is okay to seek a second opinion. This is especially important if you are considering a major treatment such as surgery.
Prepare yourself for an appointment with an endometriosis specialist
Start by getting as much information and medical history as possible.
You can request your medical records from any clinicians you have seen in the past, especially if they hold relevant information about your pain history, medications, or prior surgeries related to endometriosis.
Make sure to bring these to your appointment.
Consider filling out this “Personal Pain Profile” and bringing it to your appointment.
This can help you be specific about the types(s) of pain you’re experiencing.
It’s worthwhile to chart out your symptoms and pain over time, too.
How much pain do you have on an average day, and how often? Is there a time of day when the pain is worse?
Does the pain often coincide with certain times of the month such as your menstrual cycle? Have you found any ways that help alleviate that pain?
But also, try to think about the way those symptoms affect your life and what type of outcome you’re looking for, in specific terms.
Does it interfere with your job, your personal life, or your relationships?
Do specific activities trigger your pain? Does pain interfere with your daily activities or personal routine?
Overall, finding the best endometriosis specialist for your needs will take some research and effort.
However, it is important to take the time to find the right specialist, as this can make a big difference in your treatment and quality of life.
Want help finding a specialist?
Our care navigators are here to help.
Learn more about getting access to specialists and get support to navigate through the endo journey, no matter what.