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Endometriosis can cause chronic pain, discomfort and even infertility. Here, a Delaware expert explains symptoms, treatments and when to speak to your doctor.
Dr. Barbara McGuirk, MD, is the Director of Reproductive Surgery at RADfertility and a local endometriosis specialist. She’s aided many women through their diagnosis, helping them to manage symptoms, conceive children or simply live a more comfortable life. Along with her work as a reproductive surgeon and endometriosis specialist, she is also an advocate for awareness.
Endometriosis is still largely a mystery. No one knows the cause, and the condition often goes undiagnosed. Dr. McGuirk encourages women to advocate for themselves and not allow medical experts to dismiss their pain if they feel it’s abnormal. Here, Dr. McGuirk answers some of the most frequently asked questions about endometriosis and offers insight on when to talk to your doctor.
What is endometriosis?
Endometriosis is a serious health issue that occurs when cells similar to the lining of the uterus (called the “endometrium”) grow in other areas of the body, such as the pelvis, ovaries or abdomen. Over time, the irritation caused by these cells can create scarlike tissue called adhesions that can twist and tie the organs into unnatural positions, causing severe pain and, in some instances, infertility.
What causes endometriosis?
The cause of endometriosis is unknown – no one knows. However, there may be a genetic component to the disease and there have been multiple studies to support this. If you have a family history of endometriosis–if your mom, sister, grandmother has endometriosis, for example–you have an increased risk of having the disease. What I find is that a lot of patients coming to us with chronic pelvic pain is that when you talk to their moms, they will tell you they have had the same symptoms; however they have not been diagnosed.
Unfortunately, this creates a problem where young girls speak to their mothers and express their pain. The mothers say “you’re just like me,” so the girls are made to believe their pain is normal; however they are really suffering. Unfortunately, the mothers suffer just as much. Individuals with endometriosis are often prescribed birth control, IUDs, etc. by their physician to help ease their pain. However, birth control may not treat the endometriosis because the cells are progesterone-resistant and may not respond to the high doses of progesterone.
How common is the condition?
Endometriosis impacts roughly 11% of individuals assigned female at birth, although the incidence of the disease is likely much higher since it often goes undiagnosed.
Individuals often experience pain and other endometriosis symptoms for many years before receiving a proper diagnosis. It’s been found that it can take five to 10 years before a proper diagnosis is made. Unfortunately, women who experience pelvic pain are often either afraid to speak up or have had their pain dismissed when seen medically.
Who’s at risk?
There are two types of endometriosis:
1. Fibrosis (tightening) of the peritoneum and causing pain
2. Endometriosis that is inside the peritoneum
All women are at risk (because you’re ovulating and have a uterus), but individuals with a family history are at an increased risk.
What symptoms and warning signs should women look out for? When should they bring concerns about endometriosis to their doctor?
Pelvic pain associated with heavy or irregular periods are a few symptoms typically associated with endometriosis. However, depending on where the endometriosis exists in the body, it can impact the type of symptoms the patient may experience.
Individuals with endometriosis may also have nausea, vomiting, pain when urinating and/or when having a bowel movement, urgency to urinate, painful intercourse, constipation, diarrhea, infertility, nerve pain/sciatica and more.
Younger patients often present with typical symptoms of regular, very heavy and painful cycles, causing them to miss school and use nonsteroidal medications. Many of these girls know their school nurse by name as they frequently visit to address their cyclical pain.
Oftentimes, by the time a patient would come to an endometriosis specialist like us, they have seen five to 10 physicians (which may include many gynecologists, psychiatrists, gastroenterologists, pediatricians, urologists, general surgeons, etc.).
If you’re having pelvic pain, know that this isn’t normal. It’s important to advocate for yourself and share your symptoms with your physician. If you’ve tried this approach and you’re not getting the help you need, it’s time to get a second opinion.
How is endometriosis diagnosed and treated?
Endometriosis is a chronic disease; there is no cure as of this date. However, there are ways to help manage the symptoms of the disease.
Our goal is to relieve our patients’ pelvic pain so they can progress in life. Many of these patients feel stuck and are not capable of moving forward with daily activities due to the pain. Many of these patients also have anxiety and depression due to the missed diagnosis or lack of a diagnosis at such a young age.
There is currently no blood test for endometriosis, but there are many studies looking for one. While laparoscopic surgery is often described as the gold standard for confirming endometriosis, an experienced doctor can make a diagnosis of “clinically suspected” endometriosis by asking detailed questions and consider less invasive forms of treatment depending on the patient’s goals (reducing pain, pregnancy, etc.).
The first line of medication to consider is birth control pills. Often, by the time a patient comes to me, she has already been on four to five types of birth control for treatment of symptoms. The patients who do not respond to birth control pills need to consider a second-line treatment.
At RADfertility, we consider three pillars for treating endometriosis:
Initially, endometriosis is clinically diagnosed by going through a patient’s symptoms and asking them key questions. Many patients have been on several types of birth control that unfortunately have been ineffective. Research is demonstrating that endometriosis cells are rogue and not acting like normal endometrial cells. It has been found that these cells are progesterone-resistant and not responding to the birth control pills.
If birth control pills have not controlled the pain, there is a secondary form of treatment. There is a new class of oral medication that recently came out to address progesterone resistance and help shrink and decrease the inflammation of the cells. Their job is to hormonally stop the growth of these cells. These medications are a gonadotropin-releasing hormone (GnRH) antagaonists. They are an oral medication and therefore easy to administer. Many treatment plans give low-dose estrogen and progesterone with the GnRH antagonist to prevent bone loss.
Traditionally, the second line therapy commonly used were GnRH agonists. These medications were injectables, and Lupron or Zoladex were commonly used. Since the advent of oral medication, they have been much easier to administer and a simplified treatment for our patients.
If a patient responds well with medication and their symptoms improve, for example, they are out of pain – then treatment may be complete. If however, a patient is medically treated and unfortunately continues to have pelvic pain, at this point it is prudent to move forward with a diagnostic procedure. This would be an outpatient laparoscopic (keyhole) surgery to diagnose and surgically treat the endometriosis in the hope that their pelvic pain will cease.
I’ve seen the profound impact that gluten and dairy have had on my endometriosis and chronic pelvic pain patients, which I suspect might be linked to the consumption of genetically modified foods. What we are trying to do is eliminate foods that will negatively impact our gut microflora. A few tips I generally tell my patients to follow are:
- Reduce your intake of inflammatory foods (i.e., gluten and dairy)
- Initially, I tell my patients to stop eating gluten and dairy and slowly reintroduce it one product at a time. Once the patient introduces it back in their diet, if they experience extended or sharp stabbing pain, their gut microflora is telling them that’s not so good.
- Be mindful of processed foods with many long ingredients in the foods and/or drinks you consume.
- Another tip I share with my patients is to make food from scratch and look for organic fruits and veggies.
- Avoid the “dirty dozen” (12 fruits and vegetables that have high doses of pesticides that may negatively affect your gut and microbiome).
- Inflammation and high levels of estrogen can make endometriosis symptoms worse; there are certain foods that can influence both factors. I also recommend the Mediterranean diet for patients with endometriosis.
3. Surgery (if needed)
If the symptoms persist after suppressing pain with medication and after changing their diet, then we will talk about doing a laparoscopy, which as explained earlier is a way to diagnose and surgically treat the endometriosis. Laparoscopy is outpatient surgery with general anesthesia that uses keyhole incision sites. The purpose of the surgery is to look, make a diagnosis, and then treat the disease hoping to relieve the pain.
During pre-op, we’re trying to assess where the patient’s pain is. What is interesting about endometriosis is that my patients will tell me exactly what I need to do in surgery. For instance, 95% of patients have lower back pain. This implies that the side walls of the pelvis are tight causing pressure on the ureters and nerves causing their pain. Alternatively, if they express having chronic nausea or IBS symptoms, that signifies to me that they have a structural bowel issue. Every symptom they speak of will provide information and help with my surgical approach.
Once the surgery is completed, if all goes smoothly my patients can return to their normal lives quite quickly. Most of my patients take only a few days off of work to recover!
What is the link between endometriosis and infertility? If a person has endometriosis, can they still have children?
Studies have found that 30-50% of women with endometriosis are infertile. Generally speaking, individuals with stage 1 or 2 endometriosis are the most likely to conceive on their own.
Individuals who have a higher stage 3 or 4 endometriosis are more likely to require in vitro fertilization (IVF) to conceive due to higher structural damage. This often impacts the fallopian tubes and their ability to move freely and capture the egg because of the endometriosis that is surrounding the ovary or the position of the tube in the ovary. On a molecular level, inflammation of the uterus may prevent pregnancy.
Most importantly, I always tell my patients that we need three things to get pregnant:
- We need to have eggs.
- We need to have sperm.
- We need a healthy uterus.
Where can women learn more about endometriosis or schedule an appointment?
To learn more or schedule an appointment with Dr. McGuirk, please visit radfertility.com/barbara-mcguirk/. If women are experiencing chronic pelvic pain, they should take our endometriosis assessment to receive a personalized response from one of our endometriosis experts.