37 questions to ask when looking for an endometriosis surgeon

One surgery done right!

You may be reading this as you begin preparations for your first endometriosis surgery, or you may be seeking out these questions because you want to advocate for yourself better with a subsequent surgery. Certainly, the goal for endometriosis surgery is the motto of leading endometriosis specialist surgeon Dr Iris Orbuch - “One surgery done right!” So the following list of questions is for you to support yourself in this process.

Approaching endometriosis surgery often involves a mixture of feelings such as nervousness and excitement - nervous, because you don’t know what to expect and you’re unsure about the outcome, and excitement, because the prospect of an upcoming surgery might also provide you with a definitive diagnosis and relief from symptoms you have been suffering with for a long time.

Laparoscopy = Diagnosis

Currently, the only way endometriosis can be diagnosed is surgically, via a laparoscopic procedure. A laparoscopy (AKA ‘keyhole surgery’), is where a surgical telescope and video camera is passed through a small ‘keyhole’ cut in the abdomen, often in the navel. The patient is placed under general anaesthetic and their abdomen is inflated with carbon dioxide gas so that the pelvic organs are clearly visible and able to be operated on easily. Other small cuts (incision points) may be made in the wall of the abdomen (often 1cm in length) so that small surgical instruments can be passed through. A laparoscopy is therefore used to locate and diagnose endometriosis tissue/lesions/adhesions and also remove it in the same operation, as well as treating scar tissue, assessing fertility, and functioning of fallopian tubes and ovaries.

The ‘Gold Standard’ for endometriosis surgery

The ‘Gold Standard’ when it comes to treating endometriosis surgically is excision surgery. Excision removes the entire endometriosis implant by cutting it out completely. In particular, wide excision surgery is most effective as it cuts around the diseased tissue leaving a margin of space so that only healthy tissue remains. Unfortunately, many surgeons performing laparoscopies are still using the surgical method of ablation, which is only the burning off of the surface of the endo implant. With this method, the surface of the endo implant is all it takes away, and there is a reoccurrence of disease symptoms, often within a short space of time. In addition, ablation also leaves greater amounts of scar tissue than excision surgery. In short, the two procedures are totally different, and cannot be seen as equal in any way. More recently, it is not uncommon for some specialists to use in tandem both excision (on the deeper infiltrating endo implants) and ablation (on the newer, smaller lesions), however, the same issues still exists in regards to ablation.

Is there any other detection methods for endometriosis?

Before you head down the surgical pathway, there are also other endometriosis assessments that can be used to detect more advanced endometriosis. One is a Deep Infiltrative Endometriosis Scan (different to a standard pelvic ultrasound), and the other is the blood biomarker CA-125. This marker can be measured in a standard blood test and is a guide for possible endometriosis and general reproductive inflammation (do not test this blood marker when menstruating as levels are elevated). Using one or both of these assessments may make you more confident of your next step forward and it can act as a guide to how urgent your surgery may be, for both you and your surgeon. These tests are also helpful if you suspect you may have ‘silent endometriosis’ (no symptoms apart from struggling with fertility) and you are trying to conceive.

Your list of questions when looking for an endo surgeon

Below is a list of questions that are helpful to ask when looking for an endometriosis surgeon. Feel free to print it out or bring it up on your phone when you are in the consultation. You may even want to give a copy to the surgeon. I would recommend that you interview at least 3 surgeons, so that you have perspective and some options. We would look for 3 possible options when looking to service our car, so why would we not do the same for our precious body!

What are your beliefs about endometriosis? Disease origin, best treatment/management approaches, etc?
Listen out for comments that indicate that endo is a whole body disease, not just gynaecological, and is an immune dysfunction and primarily inflammatory in nature. Treatment approaches should be multi-modal and all-encompassing. When discussing treatment approaches, if you mention a treatment (eg. acupuncture) that has been helping you manage the disease, it’s important that the surgeon listens to this and does not discount it. Remember - you know your body better than anyone else.
Have you completed specialist training for endometriosis surgery and have you served a fellowship in this specialist area?
This may seem like an obvious question but most surgeons conducting laparoscopies are generalists (either OB-GYNs, OBs or GYNs without a further specialisation). Generalists have a wide range of knowledge regarding how to deliver a baby, perform a C-section, how to treat a breast lump, but they do not have in-depth specialist training in endometriosis removal. You want to look for a surgeon that is specialised in endometriosis, has a deep understanding of the disease and is skilled and practiced in removing it.
How long have you been doing endometriosis surgeries and how frequently do you perform surgery?
Endo specialists do high volume surgeries weekly and don’t deliver babies.

What type of surgical method will you use? What proportion of the surgery will be performed via wide excision? What techniques and instruments do you use?
The answer you are looking for is excision (cutting out the diseased tissue) and not just ablation (which is when they burn the surface of the endo lesion). Excision is now seen as the 'gold standard' in endometriosis surgery. If the surgeon says they are using ablation, you can use the following statement: “I've heard there is a better long-term outcome with a method called 'excision surgery’”.
Will you be doing my surgery, or will a colleague or junior surgeon be performing it under your supervision?
How many incision sites will be used?

How can I best prepare for my surgery? Is there a nutritional approach? Should I be stopping/starting any supplements? Therapies? If so, when should I stop/start them?
An understanding from the surgeon that your nervous system needs to be calmed and ‘cooled’ before surgery is important. Your muscles also benefit massively from being sufficiently lengthened through physical therapy before surgery for it to best succeed. Priming your body for surgery through nutrition, environment and mindfulness is also extremely important and it’s wonderful if the surgeon recognises this (side note: an endo wellness coach can support you in this priming & preparation process as well as post-op).

Will a pelvic exam be done at pre-op or prior to surgery?
The more attention, time and feedback you get from the surgeon, the better.
Where will you look for the lesions in the operation? Do you follow a diagnostic pathway during the surgery?
Will you remove all the endometriosis lesions/implants?
You are hoping the answer is yes, although in some cases, they might leave diseased cells behind, due to complexity of removal.
If you leave disease behind, will you photo document it so I can have records of un-removed disease?
Will you check my Pouch of Douglas? (also called the cul-de-sac, rectovaginal septum)
This is the place where endometriosis cells often first develop - it’s the deepest point of a woman’s core and if endometriosis is left here to implant deeper, it can change the anatomical structure of the core. The location of endo in the cul-de-sac is also responsible for painful sex.
Do you have experience removing endometriosis from delicate structures such as the bladder, bowel, ureters or diaphragm? What will you do if you find it there?
This is an important question to ask if you feel you may have digestive or urinary symptoms with your endo. For example, if you have invasive bowel endo, you need to find a surgeon who has specialist skills in bowel endo, or works alongside someone who does. Don’t settle for a surgeon who says they can do it. Make sure they are practiced and experienced in doing it. You’re not a guinea pig - you don’t want to be one.
If you find an endometrioma, (endo filled cyst on/in the ovary) how will you remove it?
It is important they take great care with your ovaries, especially as they play a key role in your fertility. You do not want them to use a pop-and-drain technique which is still commonly used. This method ends by burning the cyst wall which kills a good number of eggs and can adversely affect your fertility. It can also set you up for later surgeries because the cyst was not fully removed.
Are you familiar with all the appearances of endo up close? Along with brown (which is most common), will you look for blue, yellow, black, white and red lesions? Will you also look for clear vesicles? (small, raised lesions which are harder to see) and abnormal vascular patterns?
Will you look for an Allen-Masters Window?
The Allen-Masters Window is puckering in the normally smooth, shiny, cellophane-like covering of the peritoneum that signals there is probably endo in the folds and wrinkles.
What kind of complex endometriosis cases do you treat?
(eg. as complex as Thoracic, diaphragmatic, sciatic etc?)
Is my surgery intended to be organ-sparing? Under what circumstances would an organ be removed?
This means they will do everything they can to spare your ovaries/appendix/fallopian tubes/uterus etc. Make sure you read ALL consent forms before signing. Please know that hysterectomy is not a cure for endometriosis.
Will tissue be sent to pathology for identification?
Do you break apart adhesions into smaller pieces and restore normal anatomy during surgery?
Endometriosis adhesions (caused by inflammation) originate from the site of the lesion and are bands of scar tissue that can form bonds between nearby tissues or organs, pulling organs out of alignment, or restricting their normal movement or function (eg. an ovary may adhere to the pelvic wall) . Adhesions may also form post-surgery due to the scar tissue created from internal surgical wound-sites.
What do you do in-surgery to prevent or reduce the risk of adhesions post-surgery?
Do you remove as much of the gas as possible before the end of the surgery?
This will lessen the shoulder pain common with laparoscopies.
What are your surgical outcomes? (What expectations can I hope for based on your previous patient outcomes similar to my presentation of endometriosis? What are your complication rates?)
Endo specialists track patient outcomes and are happy to share both success and complication rates.
How long will I be in the hospital?
What post-op add-ons do you recommend? (Pelvic floor therapy/diet/nutrition)?
An understanding from the surgeon that re-starting physical therapy after a week of complete rest (no vaginal or rectal PT work for 4-6 weeks) will assist your pelvic floor muscles as well as the abdomen, thighs, back, diaphragm, and any other affected areas from head to toe. 60% of healing takes place during the first 6 weeks after the operation. Full healing should be complete at 3 months. These 3 months are therefore critical for continuing with physical therapy, nutrition for endo, environment changes and mindfulness so you can beat endo. An endo wellness coach can support you with these implementations.
What kind of discomfort or pain should I expect when I wake up from surgery and for the next couple of days/weeks?
What is the typical recovery time after surgery?
It’s important to rest and that the surgeon is aware of how important the healing process is in relation to reoccurrence of endo in your system. 60% of healing takes place during the first 6 weeks after the operation. Full healing should be complete at 3 months.
When can I return to work?
When can I have sex again?
When can I drive again?
When can I have a shower again?
When can I have a bath again?
When and who will tell me what happened in the surgery?
Will I get a full set of my records from surgery, including the operation-path and photos?
What are the chances that my endometriosis pain/symptoms will return after surgery?
If I have issues post-operation, who can I contact?
Will I be treated as a partner in my own care, with the autonomy to make my own decisions about all treatments presented to me?

You are the specialist of your life

Remember, you are the specialist of your own life. You also deserve to have a surgeon that listens to you, answers your questions, who gives their honest opinions, and who does not pressure you or intimidate you. Psychologically, you need to feel safe. If you encounter a surgeon who does not respond well to the questions above, this is a red flag, and you don’t have to work with them. Surgeons shouldn’t be offended or too busy to answer intelligent questions about their work and the impacts on your body. If you feel uncomfortable with a surgeon’s response, you can walk away and not use them. Simple as that. However, many specialist surgeons like to answer questions and share about their craft.

To find a specialist surgeon in your city/country, you can refer to this map on the Beyond Endo site. Also, take the time to do your own research. If you need help, an endo wellness coach like myself can support you through this process as well. Please reach out!

I also really urge you to watch this 8 minute video of a proper diagnostic laparoscopy for endometriosis. You may feel a bit squeamish seeing the insides of the pelvic cavity and what endometriosis looks like, but the more knowledge we have, the better! I actually find it intensely interesting and amazing!

Support pre and post-op with an endo wellness coach

When it comes to endo surgery, there’s plenty more to talk about, like whether or not you should have a laparoscopy, how to prepare for surgery, what to expect after surgery with the recovery process, how best to support your body before and after surgery, and so much more. As always, I strive to be a knowledgable and reliable resource when it comes to endometriosis, and I’m always sharing information here on my blog and over on my instagram so check it out!

As an endo wellness coach, I run a 9 session ‘pre & post endo op program’ that runs over 18 weeks that will support you holistically with your endo before and after your operation. These weeks are so important for building the best foundation for your health so you can beat endo! The program meets you where you are currently at and assists with diet, supplementation, lifestyle and therapies to prime you for the operation and for you to thrive post-op! I also offer a free Discovery Call so you can ask any questions about the program.

Let's connect!

Sending best wishes on your search for a surgeon and please don’t hesitate to contact me if you have any questions!