Transcript of Previously Broadcast Live Event
Endometriosis Q&A with CEC Medical Director & Excision Surgeon, Dr Ken Sinervo
Hosted on 5 March 2015 by The Endo Challenge Team
The CEC thanks all 568 attendees who took the time out of their evening to join this event, with a special thanks to the Endo Challenge team for hosting Dr Sinervo and planning, moderating and executing the chat. Though Dr Sinervo was unable to address many questions due to time constraints and the sheer volume of questions posted, we have followed below with the Q&A dialogue that took place. Thank you so much again to all attendees, and to the organizers for letting us participate in this fun and informative event!
Q1: Many of our followers are well educated on the CEC and your many accomplishments, but for those who are new to the endo community, could you briefly introduce yourself?
A1: I am the medical director at the CEC or center for endo care in ATL – Our practice specializes in laparoscopic excision of all endo within the body for management of pain and restoration of fertility when appropriate. We have treated almost 5000 patients with great long term results.
Q2: With so many women in the world having endo, why do you think endometriosis has not been taken more seriously by the medical community? Why are there so few specialists? Why is it that we still don’t have a cure?
A2: Unfortunately, I think it is many factors that result in poor medical treatment. We have been trained that there is no difference in how endo is treated, but there is a huge volume of literature to support excision over ablation – in fact, in Europe, they recommend excision whenever possible. When docs predominantly try to destroy endo, they universally have poor results – 80% having recurrences. However, with excision, we have less than a 7% recurrence rate (which is probably even lower than a few percent based on pathologic analysis). So docs don’t even want to offer something with such poor results. Specialists have to have an interest in it – too many do not want to deal with “whiny” (not my words) patients because they are labor intensive and learning to perform advanced laparoscopic surgery and require large volumes to get better. No cure since we are still trying to figure out the mechanism by which endo occurs.
Q3: We know that endometriosis can run in families; realistically, how much should a woman with endo fear passing it on to her daughter?
A3: If you have a first degree relative, the risk that daughter will have it is about twice the risk in the general population – so if 7-10% overall; it would be about 15-20% risk. Even in identical twins only between 35-40% of both twins have it.
Q4: What advice can you give to women who suspect they may have endometriosis or are struggling to be taken seriously by medical professionals? How can patients advocate for their own healthcare without being seen as rude or discrediting their knowledge?
A4: Unfortunately, most women see way too many docs and sub specialists before they are diagnosed with endo – probably takes about 7-12 years to get diagnosed. I think that you have to show them how your symptoms have progressed and affect quality of life. ‘Bad cramps’ don’t keep you out of work, especially if you have tried NSAIDs and birth control. Bad periods, in association with other symptoms – backache, painful intercourse, painful bowel and bladder symptoms, on the other hand, there is a very high likelihood of having endo. Trying more than one type of birth control has not been shown to be of any better outcome and there is no rationale to try more than a 6 month course of them, and if no better a scope should be next. Excision should be offered. If not move on. Medical treatments should not be tried till after confirmation with scope and best treatment.
I’m too blunt to ask about how not to “hurt” your doctor’s feelings. Getting early diagnosis and effective treatment are the most important things.
Any doc that says you will likely need repeat surgeries every 6-12 months is a quack and you should leave immediately. 82% of our patients only need one surgery, 2-4% need a 3rd.
Q5: If a doctor suspects endo but doesn’t want to do a lap to confirm, what would you suggest for the patient? Can a patient get a diagnosis without surgery?
A5: Really need a surgery for confirmation of diagnosis. Usually recommend ruling out other diagnoses at the same time if not done before (IC, Adenomyosis, adhesions, etc.). Endo can be suspected by history and physical, and ultrasound may confirm if you have severe endo but most do not have endometriomas.
Q6: Many doctors claim to be endometriosis specialists or excision experts but are not. How does a patient really know if she is dealing with a specialist?
A6: Tough one. Most gynes say they treat endo, but how do you know they perform excision. I would ask if they excise, what energy they use to do it, how do they treat endometriomas, what would they do if there was endo on the bowel or bladder that was invasive. Have they ever performed bowel resection, bladder resections? How often do they open up patients (our rate is less than 1 in a 1000 surgeries). Ask them about surgical volume. Very few can do both obstetrics and be an excision surgeon. I operate 4-5 days a week and could not deliver a baby if I tried – too busy.
Q7: Are there any limits or prerequisites for surgery with a specialist? For example, can a teen be too young for excision? Do you need a confirmed diagnosis before seeking excision?
A7: Excision can be done on all patients with endo from teens to post menopausal. In fact, I recommend excision in all patients because if we can minimize the amount of unnecessary surgery that would be good for all especially the patient. Risk of recurrence may be a few percent higher in a very young girl but if we can prevent the majority of severe cases by early intervention, that would be HUGE. About 25 %of our patients have never had a scope before, but less than 1% don’t have endo found.
Q8: Do you have any recommendations or advice for patients who must travel for excision surgery?
A8: HG – Traveling to an excisionist is a very broad question as each patient’s needs are different, however, in general – working with the center’s local resources e.g. hotels, etc. on discounts can help, working with the healthcare providers involved on various payment or discount options to reduce costs if necessary, fundraising efforts, etc. etc. can all be helpful, but again it’s very broad and based on need.
Q9: For those who cannot afford excision or do not have access to a specialist, what would be your suggestion for treatment? Are there any alternative medicine remedies that have been proven to be helpful for endo sufferers? Are Lupron and hysterectomy effective treatments? If not, why do so many doctors suggest them?
A9: Ultimately, excision is the desired treatment but when not possible, I would recommend treatment with birth control (whether pill, nuvaring, depo-provera, Mirena etc.) to buy time. May need to see pain specialist to manage pain till surgery an option. Could try ablative surgery to buy time but this is usually only ok for months up to 2 years if lucky). Not a big lupron fan due to many side effects, suggestion that much of their literature was made up leading up to trials, and seen too many severe side effects. If may be an option for some, but probably the last in my book (and not cheap – better off saving the money from lupron and getting insurance and saving deductible to get proper treatment).
Hysterectomy CAN be effective if all the endo is completely excised at time of hysterectomy. BUT the main article that is used to justify hysterectomy and removal of the ovaries was based on the fact that excision was not used during surgery – 60% with ovaries had recurrent pain; 10% without ovaries had recurrent pain – when we do excision, 82% do well and don’t need hysterectomy or other surgery; when we do hysterectomy and leave ovaries, less than a few percent need more surgery, if ovaries removed due to too much disease or patient need, almost never any more endo in our hands.
Q10: From all the research and studies done over the years relating to endometriosis, what do you feel has made the biggest breakthrough in understanding the cause of this disease? We often hear that certain events (miscarriage, tampon usage, c-section, every random theory under the sun) are linked to endometriosis. Is there any truth in those statements?
A10: All of the theories you mention are not likely related to endo. I think that there is a lot of evidence to support the idea of being born with endo (or the cells with the potential to become endo). Fetal studies that show endo in about 10% of fetuses. Lack of any actual images of endometrial cells implanting and invading into peritoneum. They can show that ectopic endometrium can grow into tissue in a Petri dish but it has never been seen naturally. Retrograde menstruation occurs in about 80-90% of women before and after surgery, so why do less than 10% have recurrent endo – because that is likely not the mechanism of how endo develops for most women. Then looking into genetics of endo, and seeing if we can identify genes that we can endo, and then developing gene therapies to prevent the disease from progression or tissue damage. Endo can occur in a c-section scar but is relatively uncommon.
Q11: How closely is endometriosis related to ovarian cancer and IBS, if at all? If a patient was diagnosed with IBS prior to being diagnosed with endometriosis, is it likely that the IBS symptoms will continue after excision?
A11: IBS is very common in patients with endo (one talk I gave to women with endo suggested about 80% were given the diagnosis). However, the percent with bowel symptoms after excision is about 20% of what it was before excision. Many women will go years because they were told they had IBS and in reality had endo – meanwhile suffering infertility, and years of pain before getting the diagnosis.
With regards to ovarian cancer, there is a 2-3 fold risk in a few small subtypes of ovarian cancer which is less common ovarian cancers. Clear cell and endometrioid cancers in particular. Use of meds like clomid may increase that risk even more. Good thing is there are studies which suggest that either having your endo excised, the endometrioma completely excised or removed, or ovary removed decreases risk of cancers by 60-80%. I really believe that excising all that abnormal tissue decreases risk of cancer in the future – no more inflammation from the endo, and less tissue damage which can lead to endo. There can also be malignant transformation (the endo turning into cancer as opposed to the endo being apart of the process that may have lead to a cancer) but is very uncommon – probably less than 1% of cases of endo. So endo is ASSOCIATED with higher risk of ovarian cancer, but not causally tied to causing cancer. Probably relates to ongoing inflammation.
A12: The true incidence of pelvic floor dysfunction in women with endo (and other causes of pelvic pain) is unknown. I can only extrapolate from my practice in which the incidence is between 20-30% of patients. If patients have tender pelvic floor muscles, I believe the great majority (85-90%) will get better with pelvic floor physiotherapy. Sometimes may need other meds like valium suppositories, antispasmodics, neural stabilization meds, etc.
Q13: Can endometriosis cause abnormal pap smears?
A13: No, endo does not cause abnormal pap smears – exposure to HPV is likely the cause of most abnormal paps (and a few other causes are much less common).
Q14: Dr. Sinervo, do you have any final remarks or advice you would like to share with the women of the endo community?
A14: Just believe in yourselves if you feel you have endo. Seek advice of true experts. Seek early intervention and try to pursue excision if at all possible. Don’t be discouraged by this disease. You are all strong and can get through it. We can almost always win the battle.
I have been blessed to have so many success stories in women who have had many surgeries and tried everything under the sun. We can win with early diagnosis and excision. God Bless.