There is no short answer that is correct for all patients and all situations. The answers and opinions on this page are from Dan Martin, MD, EndoFound Scientific & Medical Director, and do not represent all opinions or possibilities. Your provider may have different answers or opinions that are also reasonable.
The opinions may not reflect the beliefs of EndoFound, the Endometriosis Foundation of America. EndoFound does not believe that this information can replace patient-centered treatment. Do not use this information as a substitute for discussing your situation with an experienced provider. Before attempting new management or treatment options, please consult your provider to ensure your management and treatment plan fits your case.
Abdominal Wall & Umbilical Endometriosis
Q: Hello, I wanted to ask about umbilical endo... how is it different from any other endo? Could it be difficult for one to get pregnant having umbilical endo?
A: Ecker et al. found that only 50% of women with umbilical endometriosis had previous surgery compared with 96% of women with abdominal wall endometriosis other than umbilical. They did not clarify how many with umbilical endometriosis also had pelvic endometriosis.
If you have not had surgery before, the umbilical endometriosis may be isolated with no other endometriosis or effect on fertility. Exam, imaging, and laparoscopy are needed for a better answer to the question.
Ecker AM, Donnellan NM, Shepherd JP, Lee TTM. Abdominal wall endometriosis: 12 years of experience at a large academic institution. Am J Obstet Gynecol. 2014, 211(4):363.e1-363.e5. doi:10.1016/j.ajog.2014.04.011. PMID: 24732005
Added 1/17/2021. Revised 1/19/2021.
Colors of Endometriosis
Q: Why are there different colored lesions of endo?
A: The colors are related to the size, vascularity, inflammation, fibrosis, and probably other factors. Exceedingly small lesions of a few mm or less commonly look clear or slightly translucent whether they are endometriosis, endosalpingiosis, psammoma bodies, granulation, or other diseases. Histology is needed for a diagnosis for early endometriosis. As they vascularize, they become pink or red. When surface lesions bleed, they create a brown surface on peritoneum due to the brown pigments of the hemosiderin released by degenerating blood. When the bleeding is trapped in scar, it creates a dark blue or blackish appearance with white scar surrounding the old blood. The dark scarred nodules and hemosiderin incorporated peritoneum are called powder burns. Dark scarred nodules are endometriosis in greater than 95% of cases when seen at first surgery. But they can be less predictive after previous surgery when old suture material, carbon or other residual can look like endometriosis. Fibrosis (scar) looks white like old scar on your skin and can hide the appearance of old blood. Examples are at https://www.danmartinmd.com/files/lae1988.pdf.
Q: Could the different colors cause different symptoms?
A: Vernon et al. found that Petechial implants produced twice the amount of prostaglandin-F (PGF, the prostaglandin that is associated with menstrual cramps) than intermediate implants, which in turn produced more PGF than powder-burn implants. In my experience, petechial lesions on the surface secreted into the peritoneal cavity causing more diffuse symptoms that included diarrhea. The dark scared lesions had fibrosis that trapped blood and secretions and caused more focal pain and tenderness. Moreover, tenderness can be found where no lesion is seen. Demco found tenderness up to 27 mm from a recognized endometriotic lesion. Whether Demco’s findings are due to microscopic disease, hidden retroperitoneal disease, inflammation, nerve sensitization, or another cause is not known.
Demco L. Mapping the source and character of pain due to endometriosis by patient-assisted laparoscopy. J Am Assoc Gynecol Laparosc. 1998 Aug;5(3):241-5. doi: 10.1016/s1074-3804(98)80026-1. PMID: 9668144.
Martin DC. Laparoscopic Appearance of Endometriosis, 2020, Resurge Press, Richmond, https://www.danmartinmd.com/files/lae1988.pdf.
Vernon MW, Beard JS, Graves K, Wilson EA. Classification of endometriotic implants by morphologic appearance and capacity to synthesize prostaglandin F. Fertil Steril. 1986, 46(5):801-6. PMID: 3781000.
Added 1/17/2021. Revised 1/19/2021.
Epigenetics/Genetics
Q: How does epigenetics affect endometriosis?
A: My open access papers on genetics and epigenetics are at https://www.danmartinmd.com/resurge_press.html.
Added 1/17/2021. Revised 1/19/2021.
Imaging - Ultrasound (sonogram) and MRI
Q: Where can I get an MRI? How effective are they?
A: Ultrasound (sonogram) and MRI imaging are generally effective at 1 cm (marble size) but only rarely effective at less than 5 mm (pencil eraser size). That is contrasted with laparoscopy where 0.2 mm lesions can be seen in real time and 0.008 mm seen on magnified surgical pictures. Examples of small lesions are at https://www.danmartinmd.com/files/lae1988.pdf.
Most hospitals have MRIs. Many offices have ultrasounds.
Added 1/17/2021. Revised 1/19/2021.
IVF & Ovarian Endometrioma (chocolate cyst)
Q: I have a chocolate cyst. Does it need to be treated before IVF?
A: At present, there are many ways to look at the data; providers have different answers but for someone who can afford in vitro fertilization (IVF), particularly if 35 or older, IVF with or without drainage appears most reasonable. If you cannot afford IVF or are under 25, surgery may be better.
Before IVF, the options are excision, cyst exploration with limited inner wall coagulation or vaporization, drainage, and observation. It is best to discuss this with your IVF provider
As an additional note, some chocolate cysts are hemorrhagic corpus luteum cysts rather than endometriomas. Repeating the imaging in 2 to 3 months can show if a corpus luteum cyst is smaller and resolving. Complete resolution of a corpus luteum cyst can take six months.
Added 1/17/2021. Revised 1/19/2021.
Surgery - Margins
Q: How wide should the margins be?
A: There are surgeons who have that conclusion and other who point out that there is no prospective data for that conclusion. Vessey Buttram (1934-2020) said margins were needed for satellite lesions. When applied to peritoneal lesions, this is commonly reasonable. That is contrasted with the unrecognized deep endometriosis that Dr Wattiez discussed in his video on 16 January and Dr Redwine (2018) published. Many patients (40% per Dr Wattiez) who have deep unrecognized disease left behind do well and do not need repeat surgery. Attempting to remove all lesions near or on vital organs or in unseen locations may increase the morbidity more than it improves pain relief or decreases future surgery. Martin (1990) and Roman (2021) point out that some unrecognized lesions may be better found at laparotomy than laparoscopy.
Martin DC. Recognition of endometriosis. In: DC Martin (ed). Laparoscopic Appearance of Endometriosis Color Atlas. Memphis: Resurge Press, 1991, pp. 1–10. Open access: https://www.danmartinmd.com/files/coloratlas1990.pdf.
Redwine DB, Hopton E. Bowel invisible microscopic endometriosis: Leave it alone. J Minim Invasive Gynecol. 2018 Mar-Apr;25(3):352-355. doi: 10.1016/j.jmig.2018.01.017. Epub 2018 Jan 31. PMID: 29373842.
Roman H, Merlot B, Forestier D, Noailles M, Magne E, Carteret T, J Tuech J-T, Martin DC. Nonvisualized palpable bowel endometriotic satellites. Human Reproduction, [online 9 Jan 2021] deaa340, doi: 10.1093/humrep/deaa340. PMID: 33432338. Open Access:
https://academic.oup.com/humrep/advance-article/doi/10.1093/humrep/deaa340/6085832
Wattiez A. Excision Without Mutilation: It’s Possible! 2021. presented at Reoperative Endometriosis, Endometriosis Foundation of America https://www.endofound.org/keynote-excision-without-mutilation-its-possible-arnaud-wattiez-md, 13 Jan 2021, accessed 19 Jan 2021.
Added 1/17/2021. Revised 1/19/2021.
Surgery - MOHS
Q: Can MOHS surgery be useful for endometriosis?
A: The possible use of MOHS for intraabdominal surgery is an interesting question. One problem in endometriosis is that is multifocal and can be hidden behind peritoneum, muscle, or adhesions as much as 6 cm from a recognized lesion. Research on that could be interesting.
MOHS is used for vulvar and other skin endometriosis.
The cosmetic advantages of MOHS on skin are not a general concern for peritoneal, retroperitoneal, ovarian, or bowel endometriosis. The anatomy of many of those is not what MOHS does best.
Added 1/17/2021. Revised 1/18/2021.
Surgery - Repeat
Q: What is the average number of surgeries? How often does endometriosis come back?
A: After deep infiltrating bowel endometriosis is diagnosed, the median number of surgeries is one, but the average is higher as 10 to 40% need repeat surgery. It sometimes takes one or more earlier laparoscopies and occasionally laparotomies before it is diagnosed. That answer is specific for deep infiltrating bowel endometriosis which can be seen on MRI and at surgery.
However, for all types of endometriosis (superficial, deep, ovarian), the number is higher. For studies examining all types of endometriosis (superficial, deep, ovarian), the chance of repeat surgery is age dependent. The earlier it is diagnosed, the more likely it is to recur and possibly the more surgeries. I have data for recurrence rates but not for the average number of surgeries.
The studies for David Redwine (1991), Shakiba et al. (2008), and Patrick Yeung (2011) are similar and correspond with my experience.
Laparoscopic cases by age range
Age Range | 2 Year Reoperation | 7 Year Reoperation | |
---|---|---|---|
Yeung 2011 | 12–19 | 47% | |
Shakiba et al. 2008 | 19–29 | 36% | 72% |
Shakiba et al. 2008 | 30-39 | 12% | 56% |
Shakiba et al. 2008 | ≥40 | 14% | 24% |
Laparoscopic cases for all ages
2 Year Reoperation | 6.5/7 Year Reoperation | |
---|---|---|
Redwine, 1991 | 21.7% | 55% |
Shakiba et al. 2008 | 20.5% | 55.1% |
Yeung 2011* | 47.1% |
*Note Yeung is for ages 12-19 while Redwine and Shakiba are generally adults.
Redwine DB. Conservative laparoscopic excision of endometriosis by sharp dissection: life table analysis of reoperation and persistent or recurrent disease. Fertil Steril. 1991 Oct;56(4):628-34. doi: 10.1016/s0015-0282(16)54591-9. PMID: 1833246.
Shakiba K, Bena JF, McGill KM, Minger J, Falcone T. Surgical treatment of endometriosis: a 7-year follow-up on the requirement for further surgery. Obstet Gynecol. 2008 Jun;111(6):1285-92. doi: 10.1097/AOG.0b013e3181758ec6. Erratum in: Obstet Gynecol. 2008 Sep;112(3):710. PMID: 18515510.
Yeung P Jr, Sinervo K, Winer W, Albee RB Jr. Complete laparoscopic excision of endometriosis in teenagers: is postoperative hormonal suppression necessary? Fertil Steril. 2011 May;95(6):1909-12, 1912.e1. doi: 10.1016/j.fertnstert.2011.02.037. PMID: 21420081.
Added 1/17/2021. Revised 1/19/2021.
Ovarian Cyst and Infertility
Q: I am trying to get pregnant and my endometriosis may be coming back. What is the best thing to do?
A: There are different approaches. Some surgeons would suggest trying to get pregnant first. Old data suggests the hormones of pregnancy will suppress endometriosis during pregnancy and for 36 months or so thereafter. Other surgeons would suggest immediate surgery.
Added 1/17/2021.
Raman Spectroscopy
Q: Is Raman spectroscopy useful in endometriosis?
A: Raman spectroscopy is being studied in many medical fields to improve medical screening and diagnostics. Notes on 2019-2020 research are below.
Parlatan U, Inanc MT, Ozgor BY, Oral E, Bastu E, Unlu MB, Basar G. Raman spectroscopy as a non-invasive diagnostic technique for endometriosis. Sci Rep. 2019 Dec 24;9(1):19795. doi: 10.1038/s41598-019-56308-y. PMID: 31875014; PMCID: PMC6930314.
Open access: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6930314/
The Raman spectra of 94 serum samples acquired from 49 patients and 45 healthy individuals. It was found that kNN-weighted gave the best classification model with sensitivity and specificity values of 80.5% and 89.7%, respectively. This is the first demonstration that the Raman spectroscopy technique combined with PCA and a classification algorithm could be a good candidate as a non-invasive diagnostic method for endometriosis. To further improve this study, one might classify particular spectral bands of the serum spectrum that correspond to the suspected biomarkers of endometriosis.
Ralbovsky NM, Lednev IK. Towards development of a novel universal medical diagnostic method: Raman spectroscopy and machine learning. Chem Soc Rev. 2020 Oct 19;49(20):7428-7453. doi: 10.1039/d0cs01019g. PMID: 32996518.
The work since 2018 on using Raman spectroscopy and machine learning addresses the need for better screening and medical diagnostics in all areas of disease.
Added 1/17/2021. Revised 1/19 I/2021.
Recognition at Laparoscopy
Q: Can you see endometriosis?
A: I could see 0.2 mm laparoscopically and have magnified surgical pictures of 0.008 mm that could not be seen at surgery. Those are on images 20, 20b, and 20c at the Laparoscopic Appearance of Endometriosis. That contrasts with imaging which is effective at 1 cm (marble) but rarely less than 5 mm (pencil eraser) size.
See “Recognition at Laparotomy” below for unseen but palpable endometriosis.
Martin DC. Laparoscopic Appearance of Endometriosis, 2020, Resurge Press, Richmond, https://www.danmartinmd.com/files/lae1988.pdf.
Added 1/17/2021. Revised 1/18/2021.
Recognition at Laparotomy
Q: What can be missed at laparoscopy but found at laparotomy?
A: Hidden (retroperitoneal or intramuscular) lesions as large as 5 cm (Moore 1988) and as small as 2-mm (Roman 2021) can be palpated.
Moore JG, Binstock MA, Growdon WA. The clinical implications of retroperitoneal endometriosis. Am J Obstet Gynecol. 1988, 158(6 Pt 1):1291-1298. doi: 10.1016/0002-9378(88)90359-6. PMID: 3381857.
Roman H, Merlot B, Forestier D, Noailles M, Magne E, Carteret T, J Tuech J-T, Martin DC. Nonvisualized palpable bowel endometriotic satellites. Human Reproduction, [online 9 Jan 2021] deaa340, doi: 10.1093/humrep/deaa340. PMID: 33432338. Open access: https://academic.oup.com/humrep/advance-article/doi/10.1093/humrep/deaa340/6085832
Added 1/17/2021. Revised 1/18/2021.
Scar versus Endometriosis
Q: How do I know if I have scar or endometriosis causing pain?
A: Unfortunately, that is often crystal ball question unless imaging (ultrasound, MRI) give an answer. If you knew it was endometriosis and not adhesion or scar causing the pain, then surgery can prevent some complications. If it is adhesions or scar, then surgery may increase complications. Until we develop a way to know that without surgery using imaging or blood tests, it is a difficult problem as the questions do not have a direct answer.
Added 1/17/2021. Revised 1/18/2021.
Size of Nodules
Q: What size endometriosis is painful?
A: Ripps and Martin found that larger fibrotic nodules were more likely tender than smaller ones, but the relationship does not appear to be linear. Endometriosis as small as 0.08 mm (0.003 inches) can be associated with pain while endometriosis as large as 4 cm (1.6 inches) may have no pain. Also, Demco found tenderness can be up to 27 mm (1.1) inches from a visible lesion. A problem with analyzing the size of small lesions is that they are associated with larger lesions. Walter et al. found unrecognized microscopic endometriosis on random only in patients who also had recognized endometriosis. Examples are on images 20, 20b, and 20c at Martin DC. Laparoscopic Appearance of Endometriosis, 2020, Resurge Press, Richmond, https://www.danmartinmd.com/files/lae1988.pdf.
Demco L. Mapping the source and character of pain due to endometriosis by patient-assisted laparoscopy. J Am Assoc Gynecol Laparosc. 1998 Aug;5(3):241-5. doi: 10.1016/s1074-3804(98)80026-1. PMID: 9668144.
Ripps BA, Martin DC. Correlation of focal pelvic tenderness with implant dimension and stage of endometriosis. J Reprod Med. 1992 Jul;37(7):620-4. PMID: 1522570.
Walter AJ, Hentz JG, Magtibay PM, Cornella JL, Magrina JF. Endometriosis: correlation between histologic and visual findings at laparoscopy. Am J Obstet Gynecol. 2001 Jun;184(7):1407-11; discussion 1411-3. doi: 10.1067/mob.2001.115747. PMID: 11408860.
Added 1/17/2021. Revised 1/18/2021.
Spread
Q: Can endometriosis spread?
A: Thank you. That is a question that worries all who study endometriosis. We are more concerned about expansion and growth than spread, but both may occur. The answer is also commonly theoretical and related to the observation that some women with endometriosis get better without surgery, some stay the same, and some get worse. We need markers (blood tests) that can separate those to answer your question.
Added 1/17/2021.
Tubal Blockage
Q: My tubes are blocked. How can they be fixed?
A: For fertility, that depends on what area is blocked. Tubes that are blocked by endometriosis may work after repair in 3 to 60% of women depending on the type of blockage. Cornual blockage can respond to hormonal suppression, antibiotics, surgery, or in vitro fertilization (IVF). Mid tubal blockage and distal blockage can be treated surgically or with IVF. Sometimes blockage is an artifact and not present when a hysterosalpingogram is repeated.
Added 1/17/2021. Revised 1/19/2021.