Post Tubal Ligation Syndrome (PTLS)
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.
13 Responses to “Post Tubal Ligation Syndrome (PTLS)”
- Julia Smith RN Says: May 3rd, 2008 at 6:08 pm We hear from many women who describe a variety of problems and symptoms, with an onset that seemed to coincide with having their tubes tied. Dr. Berger began studying PTLS when it became clear that a certain percentage of our patients were mentioning similar symptoms. Many of the women contacted him after their surgeries to say the TR had helped them dramatically -even if pregnancy was their primary goal.
- Charles Monteith MD Says: May 3rd, 2008 at 9:38 pm As a Ob/Gyn generalist, I was never impressed that I saw many patients who suffered from PTLS. Since joining the staff of Chapel Hill Tubal Reversal Center, however, it has become apparent to me that certain women do have worsening menstral periods and other symptoms after tubal ligation. Many of these patient state they have marked improvement after reversal surgery.
- Rhonda Brown RN Says: May 5th, 2008 at 5:36 am We hear from women on a daily basis reporting many of these symptoms and seeking information on how they can get relief from PTLS. It saddens me when I hear from most of them that they have been told that nothing was wrong with them. It is apparent that something is going on and I am glad when I hear patients reporting relief from many of the symptoms after they have tubal reversal surgery. I am glad to see this information because I thnk that it will help answer many questions that alot of women have as well as let them know that there may just be hope out there for them after all.
- Sally Muncy RN Says: May 5th, 2008 at 5:57 am I think that many of our patients just feel grateful to know that someone truly believes the symptoms that they are having are real. For the first time they feel that their feelings are validated and that they are not going out of their mind as some have stated. Thanks to Dr. Berger and his study we will learn more about PTLS and help even more women who wish to have their tubes untied.
- Ericka Pamplin Says: May 5th, 2008 at 6:31 am With Dr. Berger’s study and ongoing reports from woman reporting relief, it would be awesome to see a code specifically for PTLS developed. Maybe this would prompt insurance companies to provide coverage for the tubal reversal.
- Matt Murphy ST Says: May 5th, 2008 at 6:43 am I’m so glad that tubal ligation reversal surgery is not only allowing people to have kids again but also is helping to relieve the pains and discomforts of Post Tubal Ligation Syndrome.
- Pamela Mills CRNA Says: May 5th, 2008 at 6:53 am This is such an important topic. We hear about PTLS symptoms so often from our ladies. Our tubal reversal message board is full of patients telling others how much better they feel after tubal reversal surgery. It appears it is nothing short of a miracle for some!
- DrHertz Says: May 5th, 2008 at 7:11 am It is truly impressive to hear from women how their often their post tubal ligation symptoms are dismissed by other doctors, despite the history of the start of their problems with tubal ligation. It is gratifying to know we have something to offer these women and that many have reported feeling better after the tubal reversal procedure.
- jgokun Says: May 5th, 2008 at 8:32 am I have talked to women for several years now that complain about PTLS. Often their local doctors tell them “It’s all in your head” and want to put them on antidepressants. This is really unfortunate, since most of these women are sure all of their symptoms started after their tubal ligation. Luckily, Dr. Berger has been able to help many women relieve their PTLS symptoms by performing the tubal reversal surgery for them. Patients often report total relief of symptoms within a couple months after their reversal with Dr. Berger.
- Myrna White Says: May 5th, 2008 at 8:37 am We do hear from more and more women about having PTLS symptoms before having a tubal reversal. It is a great relief to hear from those who have had tubal reversal surgery and the symptoms of PTLS have disappeared.
- Stephanie Duncan RN Says: May 5th, 2008 at 1:14 pm The education about post tubal ligation syndrome is fantastic! I hope that in the near future insurance companies and physicians will acknowledge this syndrome as they do other medical conditions.
- Sarah Meachem RN Says: May 7th, 2008 at 10:58 am I always feel such empathy for our patients who have suffered from PTLS symptoms for a long time and have never been able to find any answers about or relief from PTLS. I think it is wonderful that tubal reversal surgery has the ability to relieve PTLS symptoms and help women to feel normal and healthy again.
- Kathy Scrone ST Says: May 8th, 2008 at 8:00 am It takes the expertise of Dr. Berger to address and study the post tubal ligation symptoms that are such a viable complaint he hears from his patients. His research is ongoing from this study of similar adverse symptoms that one day will be accepted in the medical community.
I was in total shock.
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