Is there a cure? 

No. Right now, there is no cure for endometriosis. However it is highly treatable! For many women one proper excision surgery along with lifestyle choices is enough to never need surgery again. In our book this is close to a cure. There are many ways to help manage and treat the disease.

Is it an autoimmune disease?  

No. It is similar to autoimmune disease, because your body
is under a constant state of inflammation. But by definition,
an autoimmune disease is when your body's immune system attacks healthy cells in an abnormal way. With that said, a lot of women with endometriosis may experience other autoimmune diseases. 

Why does it take so long to get diagnosed?   

Generally endo patients symptoms are overlooked, dismissed, and not taken quite seriously enough. They are told "it's normal", "it's just a period", "this is just part of life". It can also be a very confusing diagnosis. There's a misconception that endometriosis patients will always have painful heavy periods. That's not always the case. People may have symptoms that are not related, in their minds, to their period (see What is Endometriosis? page for symptoms). If you do not have the "period symptoms", it's very easy to overlook your other symptoms related to the disease.  

Will I be able to get pregnant? Or do I just have to "wait and see?"    

40% or more of patients with unexplained infertility will have endometriosis. Endometriosis definitely causes subfertility (reduced fertility). We don't know for sure what causes this subfertility. We do know that endometrioma in the ovary suppresses ovarian function. We do know that adenomyosis in the uterus can cause higher-risk of fertility problems. However, it is possible to get pregnant with all of these things. Undiagnosed and untreated endometriosis will decrease your fertility. It's important to consider to be proactive about your fertility. This may mean meeting with a fertility specialist and making sure to get proper endometriosis treatment and a management plan in place. It's worth a conversation and being proactive about your fertility. There can be options. 

My doctor told me getting pregnant was a treatment for endo.    

No, this is incorrect. This is not treatment for endometriosis. Getting pregnant can help symptoms, because there will be a cessation (stopping) of your period for a year or longer with pregnancy and potential breast feeding. Some women will feel better with their endo while pregnant. But it does not make the disease itself go away. 

What's the deal with surgery?   

Endometriosis excision surgery is recommended over other surgical methods that are considered inferior due to their destructive nature. Other types of surgeries, laser ablation and electrical fulguration, are ineffective because they don’t remove all of the endometriosis. With these surgeries, most patients have their pain return in less than a year. What makes endometriosis excision surgery the most effective way to treat endometriosis is that it doesn’t zap out the tip of the disease, as laser surgery does. It doesn’t burn the tissue either. Rather, it removes the inflammatory tissue down to its roots by bringing deep layers of the body into the surgeon’s view. The surgeon not only removes diseased and damaged tissue but also skillfully reconstructs organs and restores their functionality.  

*At this time, excision surgery is not covered by insurance and not unattainable for all people with endo. Many endo advocates and activists are working to change this.

Do I have to be on the pill?

No. Birth control does not treat the disease. Birth control can make symptoms less, but most women will still have symptoms (in addition, to mood changes). The jury is still out on whether the long term use of birth control or IUDs for endometriosis benefits outweigh the risks in terms of disease progression and potential cancer risk. These issues are still a big discourse in the medical community. For patients awaiting surgery or that don't have access to it- birth control can help lessen symptoms.

* Beyond The Pill by Dr. Jolene Brighten and This Is Your Brain on Birth Control by Sarah Hill, PhD are two incredible resources to learn more about this topic.

What are the long-term effects of prescription painkillers? 

Numerous. Addiction and dependency are by far the biggest. Narcotics are addictive and once dependent on opioids, you have increased the amount of pain receptors in your body. This makes it much harder to control pain. In addition, we as physicians, are concerned with your safety. Medication interactions and overdoses are common with opioids and something we as providers never want to see happen to our patients.  
  

What's the deal with drug-hormone therapy like Lupron or Orlissa?

These are recognized as a treatment for endometriosis, but it does not treat or get rid of the disease. Patients may experience a dullness of symptoms while on it, however, the side effects can be significant. Patients will experience temporary menopause while taking it, which may or may not be permanent. It might also cause bone loss, vaginal dryness, and menopausal symptoms they might not tolerate well, especially at a young age. It's not ideal. The long-term safety use has not been evaluated. It's our belief they should be used in select cases. The best treatment for endo is proper excision surgery and using lifestyle tools.   

Will a hysterectomy stop my endo pain and symptoms forever?  

No. A hysterectomy, alone, by a general gynecologist may not get rid of your endometriosis. It will only get rid of your period and your bleeding. If there is still endometriosis disease left behind during the hysterectomy and it is not excised, those implants will still respond to hormones. We see many patients that have had hysterectomies, but still experience pain because the endo was not excised properly and needs to be treated. 

Will my endo go away with menopause?   

It may get better with menopause, because you have less hormonal stimulation, but it depends on the severity of disease. If you have significant bowel damage and bladder involvement, you may still have destruction of tissue and inflammation that doesn't just disappear. Most endometriosis patients will do much better with menopause, because they have less hormonal stimulation. As always, it's important to pay attention to your lifestyle: a low-additive-hormone diet, exercise, and keeping your heart and body healthy. 

Why am I so bloated? I literally look pregnant.  

Endo can cause significant gastrointestinal (GI) side effects. Many times patients can have inflammation of their appendix, colon, or the of lining of the abdomen that can cause bloat, swelling, reactions to many foods, and stressors in their life.

Is it ok to workout with endometriosis?

It's encouraged. Cramping can be lessened with adrenaline and a good workout. Even if you don't feel your best, a light weight exercise, walk, or restorative yoga can make you feel much better. We do encourage all people to exercise, but especially patients with endometriosis and inflammatory diseases. But if you have significant sharp pain during certain times of the month with exercise, you should see your doctor. You may have an ovarian cyst or something else happening. 

I have a lot of bathroom issues (diarrhea and GI side effects?). Why? 

The things that immediately surround the uterus and ovaries are the bowel and the bladder. Frequently they are involved because they are the next of kin. When disease causes scar tissue and inflammation, it's going to cause problems for its neighbors as well. Oftentimes bowel symptoms can be a sign of endometriosis. It can cause serious GI irritation and side effects. It's important to track these symptoms and see when they happen in your menstrual cycle and see if there is a correlation. Getting a period tracker and keeping a journal to write down the symptoms when they're happening can be extremely helpful for your doctor. 

Is there a link between endo and depression?     

There can be significant stress, pain, and emotional weight involved with endometriosis. Often patients feel hopeless and misunderstood. It can cause significant problems with school, work, and relationships.It is a significant cause of infertility and women may go through many years of fertility treatments. All of these things are huge stressors that can lead to sadness or even, depression.  

How do I explain to a significant other that sex can be painful with endometriosis?

Try to explain the disease as well as you can. If you can't explain it yourself, there are great resources to help, including the Endometriosis Foundation of America website. Pain might not be experienced every time you have sex, but it may require a more gentle approach to intercourse and an open conversation with your partner about what works for your body. Relaxation techniques, coconut oil, and even pelvic floor therapy may help.

I think I have endo. What should I do now?   

It's best to talk to your gynecologist. Talk to them about your symptoms. If you don't feel like you are being heard or given good guidance, you may need to seek out an endo specialist. This disease is best managed by someone that treats it everyday. 

How can we better educate doctors and women about this disease? It doesn't seem like this is being talked about enough.    

The best way is word of mouth. Patients with the disease have to become advocates to help educate everyone, even if that means their own doctor, family, friends, and teachers. Don't be afraid to speak up! With the current powerful women's movements of today we shouldn't be afraid to talk about the menstrual cycle!

Have more questions?

Check out the Know Your Endo book.