Medical treatment of endometriosis can be dangerous

Question

Dear Prof Koninckx,

Thank you very much for the time you spent replying to emails. My girlfriend and I both live in ……….. I think she already contacted you after desperately looking for a diagnosis of her suspected endometriosis (her name is …………..). Briefly, my girlfriend always had painful periods, going with nausea and vomiting. She consulted a doctor after more recent, strong pains she started to experience, especially one located around the appendix, very intense during period and ovulation and sometimes irradiating in the whole leg, preventing her from walking. Writing to you about this pain, you suspected she would have deep endometriosis on the appendix or the sciaticus.

After some months, she finally got a laparoscopy. After the examination, she has been diagnosed stage 3 endometriosis: the doctor found an advanced endometriosis in the pouch of Douglas, and spread new endometriosis around the uterus, ureter, ligaments and more. Nevertheless, they could not find anything around the appendix that could explain the strong pain she has on the right side. Also, the doctors didn’t touch anything and prescribed a combination of Cerazette and uterine hormone implant instead. They told us it was too risky to try to remove anything and that no one would want to do it. While I appreciate the doctor’s prudence, after reading your website and others I am doubting that no one can’t do anything about it.
I don’t know what is the best between surgery or hormone treatment but if I understood correctly, the hormonal treatment will only prevent the spread of endometriosis. Therefore, I suspect that the pain she has around the appendix will not disappear with the treatment. Nevertheless, I don’t have a medical knowledge background so my opinion is probably biased.
What do you think of this case? Could you tell me if a surgery would help or not? And if so, could you tell me the risks of doing it and if you feel comfortable enough to do it?
Thanks in advance.
Best regards,

………………………..

Answer

Dear Mr ,

See at this website : http://www.gynsurgery.org/i-have-endometriosis/  :  without expertise it is better not to do surgery. Therefore what was done was correct medicine.

For deep endometriosis and/or advanced endometriosis involving ureters and bowels the only treatment is surgery as is explained on this website, and what is what I did over the last 20 years.

Medical treatment is probably a waste of time, since the best you can expect is a decrease in pain, which generally is temporarily while surgery remains necessary and will only be postponed.

Medical treatment could be bad. Indeed while the general belief is that during medical treatment endometriosis will become less active, this has not been proven for deep endometriosis. In addition recent evidence demonstrates that during medical treatment and/or during pregnancy in some women endometriosis continues to grow and becomes worse. In some women deep endometriosis causes spontaneous  bowel and bladder perforations during pregnancy while  surgery in the future will be more difficult .

Medical treatment often has another disastrous side effect : after years of medical treatment, and fertility treatment without success, the uterus and both ovaries are removed because of severe pain. The endometriosis however remains untouched because the gynecologist does not have the skills to do so. Hormone replaced is forbidden because of the endometriosis. I have operated dozens of women in this dramatic situation.

Philippe R. KONINCKX, 
Prof em OBGYN  KULeuven Belgium,  Univ of Oxford-Hon Consultant, UK, Univ
Cattolica, Roma, Moscow State Univ.
+32-16-462796    +32 486 271061   pkoninckx@gmail.com