When you were told to have Endometriosis

I was told to have endometriosis

This is not a diagnosis : important is to know which type of endometriosis you have ;
Too often this ’so called diagnosis’ is an alibi to start medical treatment without further diagnosis. If the pain improves medical therapy often is continued, and a more severe endometriosis can be missed for many years.

I was told to have superficial endometriosis

This diagnosis cannot be made without a laparoscopy. Occasionally some indurations can be felt in the uterosacral ligaments. Also ultrasound , MRI, Cat scan cannot make this diagnosis.
Without a laparoscopy, you only can be suspected to have endometriosis because of chronic pelvic pain increasing during menstruation You should be very careful not to start medical therapy before a diagnosis is made.
If a laparoscopy was made and superficial endometriosis was diagnosed, it is important to realise that during laparoscopy all superficial endometriosis normally should have been vaporised or excised . Surgically it would have been preferable is this was done with a CO2 laser. If endometriosis waw removed during laparoscopy, there is no endometriosis any more. Only after a certain time recurrences could occur.

I was told to have cystic ovarian endometriosis – chocolate cysts

Can I trust this Diagnosis ? Check how the diagnosis was made
The diagnosis can have been suspected by clinical exam and by the type of pain symptoms (lateralisation, radiation to the anterior side of the leg up to the knee).
The diagnosis should be confirmed by ultrasound, eventually by MRI (although not superior to ultrasound). The ultrasound diagnosis by an experienced ultrasonographist is very accurate although in some 20% it might be a corpus luteum. This is important to know, since a common mistake : the first requires surgery, whereas the latter should not be operated. Therefore, if there is any doubt that a cyst with old blood might be a cystic corpus luteum either because of a rather acute onset of pain or because of the ultrasonographic aspect it is wise to wait for a few months before starting surgery. During this period oral contraception is generally given to suppress ovarian activity.

Cystic ovarian endometriosis is a cause of (severe) pelvic pain and or infertility (because of the associated adhesions).
If one is reasonably sure it is not a cystic corpus luteum, surgery should be done , since medical therapy is useless for cystic ovarian endometriosis, and since cystic ovarian endometriosis never disappears spontaneously.
What is important to check when surgery for cystic ovarian endometriosis is planned
When pain is severe it is wise to have a contrast enema done to diagnose eventual deep endometriosisof the sigmoid ; it is wise to have a bowel preparation
You should know that a cyst of more than 6 cm in diameter should either be operated in 2 steps (in infertility) or by adnexectomy (if fertility is not an issue).
For all cysts smaller than 6 cm technique of surgery should be stripping with minimal removal of ovarian tissue. (Superficial coagulation has a much higher recurrence rate and should be abandoned exept for very small endometrioma’s). Surgically this is much more difficult than generally believed.

Therefore check that the surgeon has the skills.
During surgery all other causes of pelvic pain should be scrutinized and treated.
After surgery, provided it is well done, you can expect

that the ovarian reserve will normal : a decreased ovarian reserve is generally a consequence of damage to the ovary by excessive coagulation or oprating too large cysts. Occasionally the ovarian reserve will be slightly decreased : in order to permit to judge whether surgery was well done videoregistration is essential.
Pain should be cured
spontaneous fertility rate should be some 60 to 80% within one year.
Recurrence rate after stripping is some 50% of less .

If a pregnancy is not desired immediately it can be useful to give oral contraception.
If IVF is proposed without surgery ?
This remains debated since for the first IVF cycle the pregnancy rates are almost normal.
I personally consider it, however, a mistake to do IVF with a cystic ovarian endometriosis since oocyte pick up will spill chocolate all over the pelvis resulting in massive adhesions. In addition too often after ovarian punctures, mutltiple ovarian endometrioma’s develop, something which can no longer be treated surgically withou damaging seriously the ovary.
All together this will result in a lower cumulative pregnancy rate in comparison with a sequential surgical therapy with over 50% pregnancies, followed by IVF if still necessary. Not being a surgeon cannot be an argument to dismiss surgery before IVF.

I am suspected to have or I have been diagnosed with deep endometriosis.

The diagnosis should have been suspected or made clinically (very severe pain, perineal radiation, visible in the fornix posterior, felt at exam).

Whenever deep endometriosis is suspected, a contrast enema to diagnose eventual sigmoid endometriosis and an IVP to exclude an hydronephrosis are mandatory . The clinical use of MRI, Catscan and colonoscopy is very limited.
During surgery all endometriosis should be removed.
Although this is a simple surgical statement, this is far reaching

the surgeon should have the skills to treat the bowel, the bladder and the ureter.
in absence of the necessary skills, surgery is often incomplete with recurrence of pain. Without videoregistration it is impossible to judge later whether surgery was complete or whether a debulking was done.
alternatively, in the absence of the necessary skills of ureter surgery , a stent is often placed systematically in women without hydronefrosis , and when an hydronefrosis is present often ureter reimplantation is done instead of a ureter reanastomosis. Without the skills to do bowel surgery, a bowel resection is often performed almost systematically with important late complications something to be avoided (even for big nodules a bowel resection is rarely necessary for rectum and recto-sigmoid whereas a sigmoid resection is necessary in some 10 to 20% only).

What can you expect after surgery
Absence of pain in some 80% : since some 20% of women will still experience pain after surgery videoregistration is so important for further clinical management.
Spontaneous fertility in some 60 to 80% within 1 year.
Complications of surgery
Deep endometriosis is difficult and complication prone surgery . This should be clearly explained before surgery is started. Important to know is that the early complications of discoid resection and of bowel resection are similar, whereas late complications of bowel resections are much higher.
Medical treatment ?
Is not really useful before surgery. Can be given after surgery, but is definitively not indicated as a substitute for incomplete surgery.
IVF ?
Ivf with a non or incompletely treated deep rectovaginal nodule is a major mistake. It is painful during pick-up and creates often a frozen pelvis after pick-ups. These are anyway the most difficult surgeries afterwards necessitating great expertise.