FAQs

ANY WOMAN THAT HAS A MEDICAL DEVICE OR HAD A MEDICAL DEVICE PLEASE JOIN THIS GROUP. 

It is a collaborative effort to get all victims together so we can communicate and bring about change. Consider it your news source and a way to fight big pharma- not members. This is NOT a support group.

For the most updated list of doctors or PTLS support and education join our
SUPPORT GROUP

If you would just like to follow helpful information on PTLS and other health related conditions, follow our
Public education page

Frequently asked questions

Please note this blog or the PTLS support group linked herein does not support Vikki Hufnagel, tubal.org or tuballigation.org. Her scientific research, "proof" , "pioneering discoverer of PTLS" or Female Reconstructive Surgery (FRS) is not well received in the medical community nor associated in anyway with this blog. Please do further research if you want more information on her or her theories but she legally does not have the right to give medical advice as her license has been revoked. 

• Question: I have had a tubal ligation and am experiencing some of these symptoms, does that mean I have PTLS?
• Answer: Not always.
• It is important that you see your OBGYN or Family Practitioner to rule out other diseases/disorders/imbalances that could be a cause for your symptoms
• Please note: 
• If definitive tests cannot determine the cause of your symptoms then it is possible you may have PTLS but will NOT receive that as a diagnosis.
• The majority of the medical community does not view PTLS as a real syndrome
• Female Nurse practitioners have a higher rate of supporting the idea of PTLS. 
• This is because they are trained to listen and consider the subjective data just as important as the objective data
• Subjective: what you feel and experience
• Objective: what they can see and measure
• Most doctors will only consider the objective data when diagnosing patients
• Question: What causes PTLS?
• Answer: At this time the mechanism or scientific proof of what causes PTLS can only be THEORIZED. This is due to the fact we are lacking a large unbiased/flawless cohort study. The major cohort study that most doctors are familiar with is the "Crest Study" in which it denies Post Tubal Ligation Syndrome (PTLS) as being real. The purpose and focus of the study was pregnancy after tubal ligation.
• If you would like more information on the flaws of the Crest study please click here.
• Question: What are the theories behind PTLS?
• Answer: There are several, the following are just a few.
• Endometriosis of the tubes, found only in patients with tubal ligations. Read more here  from Dr. Monteith and his findings.
• Nerve damage
• Inflammatory response to devices (bands, coils, clips etc.) or because of the scarring of the tube itself
• Blood supply to ovaries are cut off
• Click here for a video from Dr. Novoa discussing the above topics 
• Question: Why do only some women get PTLS and others do not?
• Answer: Without a proper study we cannot say for sure why only some women get PTLS. 
• The women affected after their tubal ligations (all different methods) within our support group that have had reversals, tubal removals, and hysterectomies to heal have vast improvements or heal completely. 
• This is insightful information and gives great hope to women that have been suffering for months or even decades but without a proper study we can't know the exact mechanism. 
• Until another large cohort study is funded, we can only speculate based upon our own experiences. 
• We do keep record of a few small studies from the past that indicate PTLS is real, but unfortunately most doctors base their opinions on the Crest study, never researching further that it is flawed and NOT a TRUE determination of PTLS. 
• Question: Will insurance cover my reversal?
• Answer: SOME insurances and CERTAIN POLICIES will cover reversals. 
• Please check with your insurance provider and talk with your doctor.
• Every policy is different, even within the same company.
• The insurance policies that do cover reversal usually do so for fertility reasons only (a desire to have more children). 
• At this time there is not a medical billing code to file a reversal for PTLS (because it is not recognized as a real syndrome) but some doctors will perform the reversal knowing you are wanting relief from PTLS.
• We keep the most up to date list of "believers" as well as helpful MD's in our support group files. The list is based upon member/patient experiences.
• Question: Can a tubal removal (bilateral salpingectomy) help my PTLS symptoms and pain as just as well as a reversal?
• Answer: Yes and no. 
• Every woman is different, as is the damage caused from the tubal ligation (not just scarring of the tubes from the ligation but her overall health, including autoimmune disorders developed during or after ligation)
• Success depends upon your individual case whether you have a reversal or tubal removal.
• Not every woman will achieve complete healing of her PTLS with tubal removal or reversal please talk to your doctor and RESEARCH which option would be best for you.
• Question: Will a reversal heal my PTLS?
• Answer: Yes and no.
• Every woman is different, as is the damage caused from the tubal ligation (not just scarring of the tubes from the ligation but her overall health, including autoimmune disorders developed during or after ligation)
• Success depends upon your individual case
• Not every woman will have complete healing of her PTLS via reversal please talk to your doctor and be leary of ANY doctor that says they can guarantee you will heal. 
• Question: How do I decide what surgery is best for me?
• Answer: We HIGHLY recommend you RESEARCH which option is best for you and your individual needs. 
• This decision should not be entered into lightly. Only YOU can answer that question. 
• Keep in mind it is YOUR body and YOU are the one that must live with the decision. (not your mom, sister, aunt, husband or boyfriend)
• If you need support, please consider joining our facebook support group of other women that understand what you are going through.
• Question: I'm thinking about getting a tubal ligation, are there certain methods that are better?
• Answer: Based upon the feedback received in our support group ALL methods of tubal ligation can result in PTLS or adverse symptoms, HOWEVER not every woman will develop PTLS or adverse symptoms after a tubal ligation (any method). A cohort study must take place before official numbers can truly be known.

• Unofficial findings (based on feedback from women):
• Women with Essure: 
• Have a higher incidence of developing symptoms (often irreversible even after hysterectomy).
• Essure has an official support group we encourage everyone to join so they may learn more and help support efforts in bringing about changes in congress/laws. 
• Please click here if you have experienced adverse symptoms after Essure
• Women with bands, Filshie or Hulka clips:
• Have a higher incidence of developing adverse symptoms after tubal ligation when compared to tubal ligation without using a device. 
• Click here to learn about different types of tubal ligation methods.
• Experience with Healing:
• Tubal Reversal
• Some women heal completely but some have symptoms remain
• SOME insurance pays for reversal for fertility only
• Talk to your insurance company about your policy
• Tubal Removal (bilateral salpingectomy)
• Some women heal completely but some have symptoms remain
• Bilateral Salpingectomy is often covered by insurance
• This includes removal of the tube along with the clips/bands
• Clip removal only:
• Women with migrated clips (or clips intact) that have clip removal only, do not experience as high of a success rate for healing of ALL symptoms, though they do report improvements
• Insurance will often pay for clip removal
• This means only clips removed (tubes remain scarred/unrepaired or reversed)
• Please talk with your insurance company and your doctor.
• Possible factors for success/failure in healing:
• Your age
• How long you have had a ligation
• How your ligation was performed
• The damage that occurred or developed after tubal ligation (including autoimmune disorders)  

Things to consider if you think you have PTLS:

• **The most important consideration**
• If you opt to remove a portion of your reproductive system, it can not be put back or repaired if the surgery does not give you the relief you were seeking.
• Deciding which surgical method of healing you will use is not easy:
• You will need a physical and emotional support system.
• A physical support system may be a friend or family member that will help you while healing from the surgery. (driving, flying, getting things for you)
• An emotional support system within your family and friends can sometimes be difficult to find. (they may not agree with your surgical decision).
• This does not always mean they will not help you after your surgery. 
• Talk to your friends and family to make arrangements
• Ensure you have thought through ALL possible outcomes and how you may feel in the future about the decision you have made
• This includes your current situation (financial status, relationship status etc) and where you plan to be in the future
• Join our support group to talk to other women going through PTLS symptoms and/or those that have healed
• After membership approval, read our pinned post for important links, safety information and board rules
• Use our files/photo albums for helpful advice (both surgical and non surgical)
• Use our search box within the group to look for the terms you are interested in reading (example: pain, hormones, clips)
• Click here to view our public education board:
• This board does not require membership approval but you do need a facebook profile to view it.
• Research the doctor that will perform the surgery you've decided upon 
• Check his/her Credentials
• Does he/she believe in PTLS
• Get Feedback from patients
• Inquire HOW the surgery will be performed 
• The cost of the surgery
• What are his/her success rates for PTLS improvement
• If having a reversal for PTLS relief only discuss a birth control plan
• Your financial stability now or in the future to afford the surgery you desire
• Can you take out a loan, use a tax return or get assistance from friends or family?
• How long must you wait to have the surgery?
•  If saving up, can you still physically, emotionally and financially function to support your family until you can afford the surgery?

Please click here to support a new bill! 

We are asking everyone to send a quick letter to their congressman or woman asking for support of a new bill. There are several medical devices on the market that are PROTECTED by preemption (also known as PMAs to learn more on PMAs click here).

IF YOU HAVE FILSHIE CLIPS, BANDS or ESSURE THIS MEANS YOU

This protection prevents harmed patients from seeking compensation.

We aim to change this and we need every voice!