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.
June 14th, 2009 at 10:11 pm
I had a tubal ligation in 2007 after the birth of my second daughter. I wanted to be done with having children because I had my boy and girl. I am very happy with our family of 4 howerver, every month I have periods whenever my body feels like having one. Sometimes two weeks late sometimes 1 week early. I have painful periods and I am extremly craky and depressed during the week. I want to sleep all the time but I can’t get comfortable. I have low back pain and no sex drive. When we do have sex it is painful. I am also cold all the time my feet and hands especially. Could this be PTLS or am I just unlucky? Also is it hard to get insurance companies to cover tubal ligation reversal.
May 28th, 2009 at 10:38 am
I had lost 30 pounds in 6 weeks after my son was born. I then decided on tubal ligation. Within a month I gained almost 20 lbs, without diet or lifestyle change. I started having pain with intercourse,menstrual changes. So of course my Dr. at the time put me on low dose birth control. Had a period everyday for three months. I quit taking the pill. My next Dr. has said that it is polysystic ovarion syndrome. Because I have been growing hair in wrong places and loseing hair in wrong places. I have been on a treatment for all of these symptoms for 6 months and there is no change. Why does every doctor tell me that it was a coincidence this all happened when I got my tubal?? There are many other symptoms that I have not even mentioned. I know my body…it was not coincidence. I am so frustrated.
May 11th, 2009 at 9:16 pm
Hopelessly Waiting
Many doctors will consider a trial of hormonal treatment to try and improve your symptoms. If this does not work or if the pain is severe then a diagnostic laparoscopy to look for causes would be appropriate. A tubal reversal is indicated if you want to try and get pregnant and, at the same time, have an evaluation for causes of your pain. You have to check and negotiate with your health insurance carrier to see if they will cover any portion of the reversal surgery.
May 11th, 2009 at 8:50 pm
I had a tubal ligation done in 2001 and never did my M.D. state I would have any side effects from the procedure. He simply stated, “You will never be pregnant again!” Since the procedure I have had horrific pelvic pain with shooting pains during and before menses ( contraction/stabbing pain), heavy cycles, and lower back pain. I have also experienced depression beacuse of the pain. I feel like I am always hurting. I am not one for taking medications or pain pills. When I go to the doctor and let them know about my symptoms, they respond with antibiotics and no diagnosis. Is it possible that a reverse tubal ligation will help? Does this sound like PTLS to you? I would also like to know which insurances will cover anesthsia for this type of procedure, I am happy to cover the rest. Thanks,
Hopelessly Waiting……..
March 29th, 2009 at 2:11 pm
MARY – You can see from our Tubal Reversal Pregnancy Statistics that you have not waited too long to be able to have another baby. Even women in the early forties are able to conceive again after tubal ligation reversal.
March 29th, 2009 at 1:36 pm
I had my tubes tied in 1995. I had the Pomeroy method done. I am 38 with three children. I met a man two years ago, but he does not have children. He is younger than I am and wants a child. I am very fertile and I did not want any more kids. I went back to school and furthered my education. If I wanted to have my tubal reversal, have I waited too long? I am very healthy, no hypertension or medications taken. If I have not waited too late, what age would you recommend to stop trying to concieve.
March 1st, 2009 at 10:12 pm
Hi I am a 38 year old wife and mother of three in Aug 19 2000 I had my last child by way of c-section and my blood pressure went up and the doctors could not get it down so I had to get the c-section. I also got the tubal ligation the same time because I had two c-sections before. I have tried to lose the weigh but for some reason I keep gaining could anyone help me please. Thank you and god bless.
November 2nd, 2008 at 7:32 am
Elena – Your anemia certainly needs to be treated so I do recommend seeing a hematologist. If you have not already had a test for FSH (follicle stimulating hormone), this should also be performed to determine if your are in the transition into menopause. As you may have noticed, there are many articles in our blog series about PTLS that reveal a variety of medical conditions that can mimic PTLS and it is important to investigate and treat the medical conditions before considering PTLS to be the cause of your symptoms. An option to consider to stop the excessive uterine bleeding is endometrial ablation – this is a minor hysteroscopic procedure that is much less invasive and with fewer complications that hysterectomy as suggested by the ob/gyn doctor.
November 2nd, 2008 at 7:24 am
Jenni – In my opinion, the abnormality of your pituitary gland is the problem that should be fully evaluated and treated. A tubal reversal is not the treatment for this problem.
November 2nd, 2008 at 3:40 am
i am 48 and had my last child in 1.994,it was a c-section. At that time my doctor suggested the bilateral tubal ligation, i accepted.He never explained what could happen after it. I began feeling
angry, or sad, or,like i was a different person, not sex drive, tired,nigth sweats etc. My menstrual periods changed completely, the bleeding was too heavy too much,the cramps, the pain was horrible, excrutiating and it woul last more than usual,8, 10 or 15 days!!I’ve benn suffering this ordeal for years! But 2 or 3 year ago things got worse, if is possible?! I began feeling this strong palpitations,my heart feat like it was going to explode, or like it would stop at any moment. Iwas very scared, not only this but i couldn’t and still can’t walk a few steps without feeling so so tired,without energy,and my heart woul feel horrible, it very scary. A year ago i went to a cardiologyst an had so many tests done, even blood tests. After all those tests, nothing was wrong with my heart but it was clear that my physical condition was so bad …The Dr.noticed my blood count was too low. It should had been, araund 11 or 12, and instead it was 7.5. He was amazed, in shock,and told i was anemic, that i should go to an hematologyst. Time passed, and finally went to an ob/gyn few days ago,after explaining everything,he tells me that i have BTL Syndrom. he explained that 10 to 15 years ago the surgery would cut or damaged an artery that goes very close to the tubes, causing all these extremely heavy bleeding,…kind of an open valve, and that i would bleed not only the regular stuff of any menstrual period but regular blood, that my body needed. He tells me, that since i am 48 years old, and had my 3 children already(3 C-sections),and since i had my 1st period at age 11,and probably could have around 4 or 5 more years before menopause, my solution would be a laparoscopic total hysterectomy.This of course after many studies, ecograms, etc,all this to avoid the regular surgery which is more invasive, and painfull.But if should be the case after knowing rhe results of the tests, etc, then he would do the regular surgiry. Please respond with an opinion i am more than ready to hear it. Should i go to an hematologist regarding the anemia? or for sure its related to btl syndrome? please i would apprecate any imput!! thanks,Elena.
October 18th, 2008 at 1:44 am
I had a tubal in 2003 after my third child. I am not sure what the medical term for the type of TL I got, but it was the procedure where the tubes are cut, burned, tied…. basicly, it seemed like every way it could be done, it was. Anyway, less than a year later I went to my OBGYN because I was cramping/spoting and to our surprise I was pregnant! After a sonogram confirmed it was an eptopic in my tube, I am sad to say I had it removed along with my left tube… In case you are wondering how I became pregnant… my body aparently tried to heal itself and grew a NEW (connector like) tube from one cut end of my left tube to the othr end that was large enough for the sperm to get to the egg, but not large enough for the fertilized egg to get to my uterus and got stuck in the tube.
Since the removal surgury I have had many symptoms such as depression, massive night sweats, short term memory loss, etc., but during that time period I had another health issue that is non-relatd (a spinal tumor) that required, and still requires a lot of meds due to chronic pain, so I contributed most of the symptoms to the meds. I recently discussed my symptoms w/ my pain management doc and was told that night sweats (specific to night) sounded to himlike a hormonal issue and to see my OBGYN.
After broad blood testing and a sonogram, the blood work determined my estrogen AND progesterone levels are that of about a 7 year old child, and I am 32 years old! Also, my sonogram did not show that my ovaries/uterus are unhealthy. An MRI of my Pituitary gland was then ordered and I just got the results back today showing no obstruction of the Pituitary gland. I am very confused as to what could cause all of this! I found this site after reading on the symptoms of PTLS, and all of the symptoms are matching up to mine. Would a tubal reversal help in my case? And if not, if I bring up the possibility of PTLS to my doctor will it get a negative response due to the lack of acceptance in the medical industry? I just want to get healthy again, but I don’t want to try HRT until I know what has caused all of the problems in the first place. I don’t want to mask the problem….I want to fix it.
Please respond with any thoughts or imput! Thanks, Jenni
October 13th, 2008 at 9:16 pm
What are the medicinal options for PTLS? I am not eager to have another surgery. I have had stage 4 endometriosis and cysts and taken everything from BC pills to Lupron injections. I had my third son almost a year ago and had the tubal ligation done. None of my past conditions or treatments compare to what I have been going through since then. I felt like I was losing my mind. So thankful I found your site. I spent 10 years getting that ‘it’s all in your head’ answer about the endo. I wont accept that this time!
October 9th, 2008 at 8:26 am
Your symptoms are likely due to hormonal changes and not PTLS. PTLS is a diagnosis of exclusion and other medical problems have to be evaluated before considering PTLS. You should be evaluated for a source of infection or some other medical condition which could be causing your symptoms.
October 8th, 2008 at 9:56 pm
I have just had my fourth child 2 weeks ago (24th sept 2008) and am experiencing symptons that sound like PLTS. I am having hot flushes and full on night sweays, then chills, headaches (which I never get) and a sore back. Worst of all, my baby has not put on any weight despite feeding and sleeping well. My boobs feel full and she falls off when finished and sleeps 3-4 hours after a feed. The clinic nurse is not worried yet but im wondering if there is a connection to TL and milk supply. Id appreciate any advice.
thanks
September 14th, 2008 at 8:33 pm
Heather
It is possible to have a reversal and help with some of your symptoms. I would advise you to talk with your medical doctor first and try medical options before thinking of a surgical sterilization reversal(especially since you do no want any additional children).
If you have not had success with medical options or if you want to become pregnant in the future, then you should consider a tubal reversal.
To find out more information about tubal ligation reversal, you should call the office and speak with a member of our nursing staff or email our head nurse Nurse Julia Smith JuliaS@tubal-reversal.net for more information
September 14th, 2008 at 5:27 pm
I had a tubal ligation after my 3rd child in 2004. I have a lot of symptoms. Mood swings, anxiety attack, dizziness, fatigue everyday, problems sleeping, no sex drive at all, my periods have completely stopped, but I still cramp like I am having a period, I forget where I put things. I have hot flashes and chills, depression, and many more. I don’t want anymore children, but I do need some relief. I have been dealing with this for 4 years, I think I have the sypmtoms of PTLS. I just want to feel like myself again, without the worry of getting pregnant? I am relieved to know that I am not alone. What do I need to do to get a tubal reversal?
September 11th, 2008 at 4:33 pm
i had tubal clamps put on in march 2008 and 6 months later i have had intense pms symptoms, about 2 weeks before my period. my boyfriend says i act like a “phsyco”. i plan on having these removed to have another child and hopefully this will chill me out also. if i had know this i would have never had this done. i am wondering if it just intensifies pms? or is it plts? penny
June 17th, 2008 at 1:29 pm
I believe that i may have PTLS and I was very unaware at the time i had the tubal done november of 2004 after i had my 2nd child that this could happen.I also have married and he doesnt have any children.I was looking in to having a reversal and was wondering how that would help my PTLS?I had a bilateral tubal reversal.
May 12th, 2008 at 1:50 pm
Many times I have been on call for Chapel Hill Surgical Center and had women be so grateful to find information and documentation regarding this very painful syndrome.
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.
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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.
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.