I was told to have endometriosis
Endometriosis Patient Guidelines
A laparoscopy has not been performed
- de diagnosis is only a suspicion generally of superficial endometriosis
- If a cystic ovarian endometriosis was seen on ultrasound or MRI and if the pain did not have an acute onset, the diagnosis probably is correct, and surgery is needed
- If pain started abruptly the probability of a cystic corpus luteum is high. In this case surgery is NOT indicated.
- If a BIG deep endometriotic nodule is suspected based upon complaints, clinical exam, ultrasound (MRI), clinical exam (or MRI), the diagnosis is probably correct ; for smaller lesions the risk of false positives and of false negatives is 20% to 30%
- I was not informed of the type of endometriosis : probably of superficial endometriosis
A laparoscopy is planned
Check before surgery
- A cystic ovarian endometriosis of more than 6 cm needs surgery in 2 steps otherwise the ovary is functionally lost.
- If a large deep endometriosis is suspected, hydronefrosis should be excluded (e.g. with ultrasound) while only a contrast enema can diagnose a bowel stenosis
- An ureter stent is indicated only when there is hydronefrosis
- The level of expertise of the surgeon : for deep endometriosis level III is required. A bowel resection is rarely needed (<10%) and should be decided during surgery. Too often bowel resections are performed almost systematically. Check the literature !
A laparoscopy was performed without surgical intervention.
- The diagnosis is probably correct
- I is useful to have photo or video-documentation to ascertain that all has been checked such as appendix, the sigmoid and diaphragm
- This is correct medicine : if lesions were unexpectedly severe and the surgeon has not the required level of expertise, it is better not to do surgery .
Surgery was performed .
The diagnosis should be clear. It is important to know :
- which type of intervention for which type of endometriosis ?
- complete or incomplete excision ?
- complications ?
- duration of surgery ?
- video or at least photo-documentation ?
- ovarian reserve
I was medically treated
without a laparoscopy
thus without a diagnosis
- this can be done when waiting for surgery
- this can be given for a short period to evaluate the effect on pain
- for a longer period without a diagnosis is a mistake
- medical therapy never cures endometriosis
Guidelines for women who were told to have endometriosis
- “I was told to have endometriosis” This is not a diagnosis without specifying the type of endometriosis. It certainly is not an argument to start medical treatment without further diagnosis. Even if the pain improves medical therapy should not be continued for many years since more severe endometriosis can be missed or progress.
- 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. If a laparoscopy was made all superficial endometriosis should have been vaporised or excised so that there is no endometriosis any more.
- I was told to have cystic ovarian endometriosis - chocolate cysts The diagnosis can have been suspected by clinical exam and by the type of pain symptoms (lateralization, 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 is very accurate although in some 20% it might be a corpus luteum. This is important to know, since it is 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. Medical therapy is useless for cystic ovarian endometriosis
- 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 exclude severe deep endometriosis
- 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 except for very small endometrioma’s).
- Surgery is much more difficult than generally believed. 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 operating too large cysts. Occasionally the ovarian reserve will be slightly decreased : in order to permit to judge whether surgery was well done video registration is essential.
- Pain should be cured
- spontaneous fertility rate should be some 60 to 80% within one year.
- Recurrence rate after stripping is some 5% .
- If a pregnancy is not desired immediately after surgery it can be useful to give oral contraception.
- 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, multiple ovarian endometrioma’s develop, something which can no longer be treated surgically without 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.
- What is important to check when surgery for cystic ovarian endometriosis is planned
- 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, Cat scan 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 video-registration 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 re-implantation is done instead of a ureter re anastomosis. 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 recto-vaginal 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.