Questions for prospective surgeons for endometriosis/adenomyosis

These questions are to help you prepare for your consultation and to get the most of the short time available. Not all questions will be relevant to your individual case. You may not have the opportunity to ask all questions at your initial appointment, ask your surgeon if you can follow up by email. 

This guide was compiled by Kathleen King (2018) and is not meant to be an exhaustive list, but rather a guide from which research can be done. Please credit this source by sharing directly from our blog on www.endometriosis.ie

• What is your interest in endometriosis, is it the primary focus of your work? (Many gynaecologists are also obstetricians, some gynaecological oncologists have taken an interest in endometriosis, some gynaecologists have made endometriosis and minimally invasive surgery their specialist area) Bear in mind that there is no internationally accepted definition of an “endometriosis specialist”.
  
• How many endometriosis cases. Do you treat annually? (This should be in the hundreds for someone whose practice is dedicated to endometriosis)
  
• How many of these cases are similar to my case?  (This is important – they need to be able to remove all your endometriosis lesions – some surgeons would not have the skill, experience or confidence to work on some areas)
• What techniques do you use to remove endometriosis lesions? (Ablation or Excision) (There are many different tools available to the surgeon, but it is the method of removal that is important, not the tool. An example is the laser – it can be used to burn off the lesion (ablation) or as a cutting tool (excision). The use of a robot is not necessarily an advantage, it is simply another tool. The robot gives some advantages to the surgeon in terms of a third hand, easier reach, less fatigue)
  
• Do you partake in any accreditation programme for endometriosis? (This ensures they are meeting a minimum standard annually in terms of numbers of cases and their work is reviewed)
• Do you send any tissue/data to any studies or data collectors for endometriosis research?
• Are you confident that you can remove all of my endometriosis lesions, from all locations?
• If you cannot remove them, can you arrange for an appropriate surgeon to assist during the surgery?
• Do you use any measures during surgery to prevent adhesion formation? What has been the experience of your previous patients with this measure, have there been any adverse outcomes?
• Have you had any adverse outcomes in patients for endometriosis surgery, if so how was this dealt with?
• Will my surgery require an additional specialist? (Colorectal (bowel) surgeon, urologist (bladder), thoracic (for diaphragm or chest), haematologist (pre existing bleeding disorder))
• Will my surgery be recorded by video, will this video and any images captured be made available to me for review?
• Will you send all excised tissue to the laboratory for histological confirmation? (This is important to show that the lesions were/were not endometriosis and that they were clearly excised.)
  
• How long will my surgery take?  Will it require an overnight stay in the hospital?
  
• Will a bowel prep (clearance) be required pre op?
• Do you have a pre op protocol that you recommend to patients? (Medications, Supplements, Preparation, Counselling)
  
• Will you perform hysteroscopy and tubal patency check during my surgery if appropriate for fertility? (This checks the inside of the womb and fallopian tubes. Tubes are often flushed with dye or an oil based solution to check if they are open).
  
• If I have an endometrioma on my ovary/ovaries, what procedure will you use to manage this. Will it be drained or excised. What precautions will be taken to preserve my ovarian reserve? (Removing endometrioma (chocolate cysts) is difficult and requires skill, the ovaries can be damaged and fertility destroyed. Draining endometrioma can lead to them refilling. The correct option is very individual to the patient, fertility plans need to be strongly considered. In rare cases the ovary may need to be removed, this should not be offered lightly. Removal of one or both ovaries have negative long term effects and reduce quality of life).
• If you are considering removing my ovary or both ovaries, can you explain the indications and the impact it will have on my long term health (cardiac, life span, bone, brain).  Can you also tell me what will be prescribed as HRT and the impact this will have in terms of health benefits and health risks. Will this HRT increase the risk of recurrence of my endometriosis symptoms (especially if endometriosis is left behind at surgery)
  
• If you are considering removing my uterus can you explain why this would be beneficial and also the impact on my long term health? Will you remove tubes and cervix also? What is the risk of complications and prolapse with a hysterectomy? What is the risk of complications during the surgery?
  
• If I choose to have my uterus, cervix and tubes removed – how will this be done? Can you preserve my vaginal length? (The cervix and tubes are removed with the uterus to reduce the risk of cervical cancer and ovarian cancer. A hysterectomy can be done laparoscopically, transvaginally or by open surgery (laparotomy). There are benefits to the surgery being as minimally invasive as possible in non-cancer patients. Some women have concerns over losing their cervix in terms of sexual activity/feeling post op and also due to a reduced vaginal length. This should be carefully researched and discussed.)
• If adenomyosis is suspected, what is your recommendation for treatment? (This will depend on fertility plans, some experienced surgeons can remove focal areas of adenomyosis but there are associated risks. Adenomyosis can only be definitively diagnosed by hysterectomy (removal of the uterus) and a hysterectomy is a definitive treatment)
• If I choose to have an IUS like the Mirena fitted, can it be done during my surgery?
  
• If I require endometriosis removed from my bowel, how will this be done? Who will perform this part of the surgery? What is their skill/experience /caseload annually?
  
• Will I see any other healthcare professionals during my visit to the hospital for surgery (anesthesiologist, physiotherapist, counsellor, colorectal / stoma team, dietician, respiratory team, urology team, cardiologist, pain specialist)
  
• Will I receive a referral to any specialist on discharge? (Pelvic Physiotherapy, Pain Clinic, Counselling)
  
• When will my follow up appointment be? If I have concerns or queries in the interim how can I get in touch?
  
• What can I expect in terms of healing post surgery, what is the normal recovery time?
  
• When will I be able to return to work, my work is sedentary/manual/heavy lifting/on my feet all day…
• What can I expect in the days and weeks post surgery?
  
• What can I expect my first period post surgery to be like?
  
• When will I see an improvement in my endometriosis related pain?
  
• What is your (surgeons) expectation for this surgery in terms of improvement to quality of life?
  
• What are the other causes of pelvic pain that may be relevant to my case? (Painful Bladder Syndrome (Interstitial cystitis), Pudendal Nerve Entrapment, Irritable Bowel Syndrome, Fibroids)
  
• Will I be investigated for other causes of pelvic pain during this surgery or in preparation for this surgery?
  
• Do you use any imaging techniques (Ultrasound, MRI) in preparation for surgery?
  
• Do you have any final advice for me in preparation for this surgery? (weight loss /gain, stop smoking, increase cardiovascular exercise)