Endometriosis – Why is it so Difficult to Diagnose and Treat?

Endometriosis – Why is it so Difficult to Diagnose and Treat?

Endometriosis causes pelvic pain, and pelvic pain can be very difficult to diagnose and manage. There are many causes of pelvic pain such as fibroids, endometriosis, adenomyosis (endometriosis in the muscle of the uterus), ovarian cysts, adhesions from surgery or infection, and just plain old pain due to your periods.

Unfortunately, all too often “pain with periods” (uterine contractions during the menstrual cycle) is used as an excuse for pelvic pain caused by endometriosis, especially when an ultrasound, CT scan, or MRI does not find anything wrong.

Endometriosis is a Small Volume Disease……
And that is actually the problem with endometriosis that many patients and OBGYN’s do NOT understand. Endometriosis is usually present as “small volume disease” meaning that the “implants” of endometriosis are far too small to be “imaged” by ultrasound, CT scan, or MRI. Implants are areas of the endometrial lining that have moved from the cavity of the uterus to outside the uterus, where they can implant or grow and cause pain. Thus the term endometriosis – endometrial lining outside (-osis) the uterus. These implants can be very small, usually no more than 1 -2 mm in size, about the size of a pin head. Ultrasound and CT scan, and even MRI, usually require at least 1 cm in size (10 mm) to see something.

Diagnosis of Endometriosis – Symptoms
Pelvic pain that is moderate to severe, with negative imaging, should always bring up the diagnosis of endometriosis. This is especially important for patients of younger age, since endometriosis detected earlier results in faster and better treatment. This allows patients to understand what the cause of the pain is, and to manage it appropriately to avoid chronic pelvic pain and infertility.

All too often the OBGYN will brush aside menstrual pain as “normal” or “just part of having periods.” This is NOT acceptable, since undiagnosed endometriosis does NOT get better. Estrogen causes endometriosis to grow, and all ovaries in patients not in menopause make estrogen. Simply put, the longer the delay in care in the diagnosis and treatment of this disease, the worse it gets and the more problems it causes.

Endometriosis can be suspected by identifying symptoms on a careful history. Moderate to severe pain with periods, pain with intercourse, pelvic pressure and back pain, distension and bloating are all consistent with endometriosis. Those patients with incapacitating pain that prevents them from doing normal activities or interferes with work , school, and social events is not normal, and endometriosis must be considered.

If your ultrasound or imaging study is normal and you have these symptoms, see a specialist. OBGYN’s are specialists for pregnancy, not for GYN conditions. GYN specialists that deal with endometriosis can identify these symptoms and start the process of diagnosis and management.

Endometriosis – A Surgical Diagnosis
Physicians, no matter how good or experienced, cannot diagnose endometriosis by history and symptoms alone. Endometriosis is a disease only made by pathology. This means that surgery is required to remove implants of disease which are then analyzed by pathology to confirm the diagnosis. ‘Excising” or removing the implants of disease is necessary for the best possible treatment. Burning the disease, also known as “ablation” is not effective, should not be done, and is commonly performed by OBGYN’s.

Endometriosis is a surgically staged disease. This means that surgery is necessary not only to excise the disease, but also to determine how advanced the endometriosis actually is. Four stages are present, 1 for mild disease limited to only several implants to the pelvis, up to stage 4 disease with disease extensive and involving uterus, tubes, and ovaries as well as other organ structures.

Many OBGYN’s “diagnose” endometriosis without surgery, and start patients on birth control pills. Birth control pills are ineffective for treating many cases of stage 2 disease, and almost all cases of stage 3 – 4 disease. If surgery is not done to determine the stage of the disease, then how does the OBGYN know what medications should be used to treat the stage? Stage 1 disease is usually treated with birth control pills after surgery, whereas stage 4 disease is treated with much stronger medications. To arbitrarily start birth control pills without knowing the diagnosis or stage of the disease is bad management and will allow progression of the disease with increased pain, adhesions, and infertility. Further, one 30 – 60 minute surgical session with a specialist like Dr. MacKoul can remove all the disease, thereby significantly decreasing pain and potentially increasing fertility. Some patients are able to get pregnant after excisional therapy when done properly.

Orilissa, MyFemBree, Lupron
These medications block the production of estrogen from the ovaries, which will “suppress” endometriosis, but will not under any circumstances remove the disease. Once these medications are stopped, the implants of endometriosis will regrow with estrogen production once again “turned on” from the ovaries. These medications are very difficult to tolerate, with many patients unable to continue the therapy after only one or two months. None of these medications should be used without surgery since the side effects are severe, the cost is high, and the tolerance to the medication is low. Realize that with excisional surgery, Dr. MacKoul can do in 60 mintues what it would take Orilissa, MyFemBree or Lupron months to accomplish and with immediate relief of pain and possibly an increase in fertility.

Endometriosis Excision is Highly Specialized
Finally realize that surgical excision of endometriosis is not easy. OBGYN’s do not have the surgical training or skill to excise disease at any location in the pelvis. This means that implants on the ureter, bladder, bowel, or diaphragm will NOT be removed by the OBGYN for fear of causing an injury to those structures that they cannot repair. GYN Oncologists such as Dr. MacKoul can remove disease at any site in the pelvis, including bowel, bladder, and ureters, and if there is a need to repair these structures the training of GYN Oncologists allow them to do so.

GYN care is specialized, and patients with endometriosis require a specialist for surgical and medical management of this condition. Keep this in mind, and for the best care always seek out a specialist to help you treat this difficult disease.