PTLS Diagnosis and Tests

An email message received today about Post Tubal Ligation Syndrome (PTLS) from a patient who is scheduled for tubal reversal next month prompted this blog topic. I thought it would provide helpful information to others with similar concerns.

“My problem is horrible PTLS. I had my tubes tied in 05 at the time of my 3rd C-section. I understand that PTLS is not widely accepted or recognized in the medical community as a true syndrome or diagnosis, but could I expect to see something supporting that diagnosis in any blood work or hormone tests? Would it be normal to see abnormal hormone levels to some degree in support of this diagnosis or is it possible that all my levels would be ok but that the disruption in the flow of blood between ovaries and uterus could cause all of my symptoms and simply not show changes in hormone levels? Also, are there specific hormone tests I can have my ob/gyn check?

I only came across all this info on the net while desperately searching for answers to my growing list of symptoms that I never thought were related. This is very nerve wracking and exhausting. Three years is a long time and I look forward to this journey coming to an end and new one beginning, but I have so many questions and I was hoping you could steer me in the right direction so I can have any other diagnostics tests that may be helpful to my cause.”

Dr. Berger’s Response

One of the reasons that PTLS is not recognized as a true syndrome by most physicians is that there is no specific diagnostic test that is correlated with symptoms. If you search through the medical literature, you will find many studies with conflicting results. For example, you can do a search using Google Scholar for “hormones post tubal ligation syndrome” to review results from some recent medical studies.

Diagnostic Codes

There is no diagnostic code for Post Tubal Ligation Syndrome in the International Classification of Diseases (ICD). Without a specific diagnostic code, insurance companies do not provide reimbursement for testing or treatment. The International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) does have other diagnostic codes that can be used, depending upon the symptoms being experienced:

• ICD-9-CM #625.0  Dyspareunia - Painful sexual intercourse.
• ICD-9-CM #625.3  Dysmenorrhea - Painful menstruation.
• ICD-9-CM #625.4  Premenstrual tension syndromes -
  Distressing physical, psychologic, or behavioral changes that occur during the luteal phase of the menstrual cycle. Symptoms of PMS are diverse (such as pain, water-retention, anxiety, cravings, and depression) and they diminish markedly 2 or 3 days after the initiation of menses.
• ICD-9-CM #626.2  Menorrhagia  - Excessive menstruation.
• ICD-9-CM #626.6  Metrorrhagia - Irregular uterine bleeding.
• ICD-9-CM #627.0  Premenopausal menorrhagia
• ICD-9-CM #626.8  Disorders of menstruation, other

Insurance Coverage

Insurance companies do not recognize PTLS as a medical entity. Depending upon the symptoms you have, your doctor could use one or more of these diagnostic codes. The specific tests that may be appropriate will depend on your symptoms. For example, if you have pelvic pain, then ultrasound examination would be appropriate as part of an evaluation for pain. Abnormal menstrual bleeding would appropriately involve hormonal assays (FSH, LH, estradiol, progesterone). Based on the results of any preoperative testing, a diagnostic code could be listed on your operative report as a preoperative and postoperative diagnosis. This might influence the insurance company regarding possible reimbursement for tubal reversal surgery. Read your insurance policy carefully. If it specifically states that tubal reversal is not a covered benefit, no matter what information is sent to the insurance company, there will be no reimbursement. If the policy does not specify that tubal reversal is excluded, then there may be a possibility of getting reimbursement from your insurance carrier.

More Information about Post Tubal Ligation Syndrome

Post Tubal Ligation Syndrome is written about on many pages of the Chapel Hill Tubal Reversal Center website. There are also many discussions about PTLS on the Tubal Reversal Message Board. Another excellent source of information is Post Tubal Ligation Syndrome News.

The circumstances that lead people to have a tubal reversal procedure are unique to each person. Understanding them is helpful to me as a tubal reversal specialist providing their care during and after tubal reversal surgery.

Preoperative Consultation

When meeting new patients, I begin the preoperative consultation by asking about the circumstances that have them brought to me. After greeting patients and having them get settled comfortably in my office, I ask: What made you decide to have a tubal reversal at this time? Each person or couple responds in their own way to this nondirective question, often touching on their personal, social, and medical history that have brought them to this point in their lives. Their responses provide the context for the discussion that follows about their tubal reversal procedure.

Reasons for Tubal Reversal

The reasons given for having a tubal reversal vary. The most common one is that the patient is in, or about to enter, a new marriage. Often, the man has no biological children. Even when both partners have children from previous marriages, they want to establish a family of their own. Less commonly, couples who already have children together want to expand their family. For these couples, their past choice to have a tubal ligation is no longer the right decision for them. Sometimes they describe religious considerations, a change in financial stability, or tragically, the death of a child.

Tubal Ligation Regret

Many women have told me that they had a tubal ligation as a way out of a bad situation. Some did not want to have any more children while in a failing or abusive marriage. Others felt pressured into having their tubes tied by a parent, other family members, spouse, or even their doctor. Women who had their tubes tied while undergoing a C-section often report they made a hasty decision while in labor and almost immediately felt that it was a mistake.

Post Tubal Ligation Syndrome

An increasing number of women describe a variety of symptoms that started when they had their tubes tied. Most often these include heavy or painful periods, headaches, irritability, or other emotional reactions that were not present before their tubal sterilization. Many of these patients have been treated by their doctors with hormones, anti-depressants, or other medications to no avail and usually have been told that Post Tubal Ligation Syndrome does not exist. But they are convinced from their own histories that it does. A study that we are currently conducting finds that over 90% of these women report improvement or complete relief of their symptoms after tubal reversal surgery. Clearly, more research about this controversial subject is warranted.

Informed Consent and Patient Follow-up

Whatever the reasons for having a tubal reversal, it is important for patients to be fully informed about the potential benefits and risks of the operation. Equally important is the long term follow-up that we maintain with patients after surgery. This has enabled us to document and report the outcomes of tubal reversal surgery to a much greater extent than has ever been done before.