What Is Deep Infiltrating Endometriosis (DIE): Causes, Symptoms, and Treatment Everyday Health MenuNewslettersSearch Endometriosis What Is Deep Infiltrating Endometriosis Causes Symptoms Treatment and More This type of endo requires expert care, especially when preserving fertility is desired. By Beth LevineMedically Reviewed by Kacy Church, MDReviewed: February 12, 2020Medically ReviewedDeep infiltrating endometriosis, shown in purple, occurs when adhesions on the outside of the organs grow into tissue.Lauren Shavell/Getty ImagesEndometriosis, a chronic disease in which endometrial-like tissue grows outside the uterus and on other organs, is difficult to diagnose because it can present with several kinds of symptoms and stages. In superficial endometriosis, adhesions appear just on the surface of organs; deep infiltrating endometriosis (DIE), on the other hand, is invasive, straying more than 5 millimeters into the peritoneal tissues of the pelvic organs. There is also the presence of chocolate cysts (benign cysts filled with brown fluid, also called ovarian endometriomas). “We most commonly categorize it into four different areas,” says Noor Dasouki Abu-Alnadi, MD, an assistant professor in the department of ob-gyn and minimally invasive gynecologic surgery at University of North Carolina Health Care in Chapel Hill. These areas are:Uterosacral ligament (supports the structures that keep the cervix and uterus in the pelvis)IntestinesBladderVagina RELATED: March Is Endometriosis Awareness Month Sponsored Advertising Content When Period Cramps Are Too PainfulIf you have painful periods or pain during sex from endometriosis, it can be treated. Here’s what to know.Learn more DIE Invasion Can Create a Frozen Pelvis Dr. Abu-Alnadi calls a frozen pelvis a surgeon’s worst nightmare. It means that the endometriosis has created so much inflammation and scarring that the organs appear to be locked into place, and often in incorrect positions. “It makes surgery very complicated. How do you remove the disease without harming the surrounding structure?” she says. “It can sometimes look like a bomb went off, so much so that it’s difficult to find the fallopian tubes or ovaries during surgery. They can become indiscernible from adjacent pelvic structures,” says Nicole Noyes, MD, the system chief in the department of reproductive endocrinology and infertility at Northwell Health in New York City. “Your organs don’t just sit in one place. In reality, they share close quarters and need to be able to move around in order to properly function. With a frozen pelvis, the capacity to rotate is often lost, and that can be painful, particularly around ovulation, when the ovary is swollen with its egg and follicle, or during penetration intercourse, or around the time of the menstrual period.” RELATED: Celebrities Who Speak Publicly About Endometriosis DIE Is Not the Same as Adenomyosis Adenomyosis is related to endometriosis (and often is present at the same time), and can be as difficult to diagnose. It occurs when endometrial lining grows into the actual muscle of the uterus. DIE describes a different phenomenon: when endometrial-like tissue on the outside of the uterus grows into adjacent tissues. What Are the Signs and Symptoms of Deep Infiltrating Endometriosis As with all endometriosis, disease stage does not always correlate to pain levels. You can have very few adhesions with unbearable cramping pain; you can also have DIE and have minimal symptoms, but that is not the norm. Research published in Human Reproduction found that DIE lesions tend to enter places that are rich in nerve fibers, causing irritation and pain. Abu-Alnadi notes that you should be on the lookout for:Chronic pelvic painDysmenorrhea (pain with menstruation)Dyspareunia (pain with penetrative sexual activity)Bloody or painful bowel movementsPain with urinationVaginal bleeding after hysterectomyInfertility Diagnosis of DIE is usually made through laparoscopic surgery and imaging. What Are the Causes and Risk Factors for Deep Infiltrating Endometriosis A study published in BMC Women’s Health in December 2019 found these factors in women who were at higher risk for developing DIE:MarriedOlder ageHad siblingsHad a prior pregnancyLonger time since age at menarche on the day of visitMenstrual and ovulatory disordersHaving had any surgical instrumentation of the uterus such as dilation and curettage (D&C), abortions, and myomectomy (fibroid removal) Can Deep Infiltrating Endometriosis Be Treated “Management of DIE depends on where it is and how badly the organs are affected or degraded,” says Dr. Noyes. Laparoscopic surgery is still the gold standard of care, even though the surgery may be complicated. The surgeon will need to excise lesions and scar tissue without harming the structure they have infiltrated. In some severe cases, this cannot be done laparoscopically. The surgeon must make an incision. If you are one of the rare women with DIE who have minimal symptoms, and you aren’t concerned with fertility, physicians may recommend a watch-and-wait approach, according to a paper published in OBG Management in May 2018. RELATED: What Is Silent Endometriosis? Treatment Is Complex Find the Right Surgical Team Because the surgery can be so complicated, Abu-Alnadi stresses the need for patients to seek out expert care: “Most general or gynecological surgeons are not trained enough for this kind of operation. You really need to find someone who is highly specialized in this type of surgery.” Without expert care, you up the risk of repeated surgeries due to recurrent disease or an incomplete resection. “I would say that the overwhelming majority of patients that I see tend to be back because of an incomplete resection rather than recurrent disease,” she adds. Noyes says she has seen DIE patients who have needed four or five surgeries. “They get symptomatic medical relief for three or four years, and then need to do it again. If the patients want to preserve fertility, we can only resect. But at some point, most patients give up and ask to have a hysterectomy.” A hysterectomy, or removal of the uterus, is considered a last resort by many experts. RELATED: Hysterectomy: Do You Really Need It? Women Advocate for Yourself Abu-Alnadi urges women with DIE to be their own champions. “Patients really should advocate for themselves to find the answer for these symptoms. They should know that there are specific specialists who are out there who are knowledgeable and willing to develop a holistic and comprehensive approach that is targeted to their goals. If their physician seems to not be listening or not have the right qualifications, they should feel like they can step up and just say, ‘Send me to someone who has more training.’ There is someone out there, waiting to improve your symptoms and quality of life.” You can start your research with these resources:Endometriosis Foundation of AmericaEndometriosis.orgEndo-Resolved NEWSLETTERS Sign up for our Women' s Health Newsletter SubscribeBy subscribing you agree to the Terms of Use and Privacy Policy. The Latest in Endometriosis FDA Approves Myfembree for Endometriosis Pain in Premenopausal Women Doctors were already prescribing the drug to manage uterine fibroid–related heavy menstrual bleeding, and now the medicine will be immediately available...By Lisa RapaportAugust 9, 2022 Endometriosis May Raise Risk of Stroke Study FindsWhile the overall risk is low, the link between endometriosis and cardiovascular disease is worth paying attention to.By Kaitlin SullivanJuly 25, 2022 New Study Finds Link Between Endometriosis and Early MenopauseWomen with endometriosis may have fewer reproductive years than those without the condition, especially if they’ve never had children or taken the pill...By Becky UphamJanuary 28, 2022 Does Low Testosterone Cause Endometriosis A new theory may change diagnosis and treatment of the disease.By Beth LevineMay 28, 2021 Everyday Health s Endometriosis Twitter Chat Here s What You MissedAdvocates and experts took to Twitter to discuss challenges, tips, awareness, and more in honor of Endometriosis Awareness Month.By Brianna MajsiakApril 13, 2021 Does Endometriosis Up Your Risk for Developing Rheumatoid Arthritis There’s a connection between endo and RA, according to a large study.By Beth LevineJanuary 19, 2021 Managing Endometriosis During the Coronavirus Crisis FAQsAn expert answers frequently asked questions from women with endo By Beth LevineApril 2, 2020 Model and Advocate Alaia Baldwin Aronow Opens Up About Her EndometriosisThrough advocacy and sharing vulnerable images of her ‘endo belly,’ Aronow wants other women to feel less alone.By Brianna MajsiakMarch 31, 2020 Together Against Endo Kari and Ryan Anderson Help Raise Endometriosis AwarenessFacing the disease as a couple helped Kari and Ryan Anderson persevere and start a family.By Michael DolanMarch 26, 2020 Experiences With EndometriosisAn open, honest, and raw conversation about what life with endo is really likeBy Kerry WeissMarch 19, 2020 MORE IN Why Your Risk for EPI Goes Up After Pancreatic Surgery What Is a Ruptured Appendix Causes Treatment and Complications Surgery for Cataracts