Dr. Berger Talks About Post Tubal Ligation Syndrome

Dr. Berger gives helpful advice to women with symptoms of Post Tubal Ligation Syndrome that may help with them with insurance coverage for testing and treatment.

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)”

1. 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.


2. 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.


3. 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.


4. 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.


5. 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.


6. 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.


7. 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!


8. 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.


9. 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.


10. 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.


11. 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.


12. 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.


13. 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.

The Importance of Early Pregnancy Monitoring

The importance of early pregnancy monitoring cannot be stressed enough. All women have a chance of ectopic pregnancy, but after tubal reversal surgery, the chance is slightly higher. For this reason, Dr. Berger recommends all patients at Chapel Hill Tubal Reversal Center work closely with their home physicians to follow the course of pregnancy as soon as conception is detected. Once a tubal reversal patients gets a positive pregnancy test, she should get her first HCG blood level drawn. After this, her doctor should be drawing the blood for HCG at least twice week. When the HCG level reaches 1500, the pregnancy can be detected by ultrasound. A vaginal ultrasound should be performed to determine the location of the implantation. This greatly reduces the chance of tubal rupture should the pregnancy prove to be ectopic. Dr. Berger should be notified as soon as you are pregnant so that he can ensure you are receiving timely early pregnancy care.

The following is from the Tubal Reversal Message Board:

Posted by Kristy Isett (Member # 8861) on February 05, 2008 05:58 PM:

Hi Dr B, I just found out on 1/24/08 that I was PG again after taking 200 mg clomid. My LMP was on 12/30/05 Since then, I've had 5 hcg betas drawn. My concern is the last two I had.
My first 3 betas were
1/24/08= 19.45 Progesterone= 27.1
1/26/08= 48.64
1/28/08= 104.22
Thursday 01/31/08
hCG was 371 progesterone was 45.2 (on suppositories)
Monday 02/04/2008
hCG was 576Why the small rise?? I mean I figured it should have been closer to the 1400-1500 level.
My blood tests were done at two different labs, but I honestly don't think that there would be that much of a difference between them. I go again tomorrow for another beta.
I had an internal exam yesterday 2/4/08 and dr said there was no sign of bleeding, cervix was closed and long. He felt my uterus and said it felt normal. I then went for a vaginal u/s and the tech was unable to see anything at that point. Dr called me and told me that there was a bit of free fluid??? in my uterus but not enough to have him concerned at this point. I don't know what to think at this point. Thanks in advance!
Kris
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Posted by lori4 (Member # 11661) on February 05, 2008 06:48 PM:

Kristy, Can't answer any of your questions, but I'm praying for you girl
Lori
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Posted by Gary S Berger MD (Member # 3) on February 05, 2008 06:58 PM:

Hi Kris -Using our HCG doubling time calculator, I entered your first HCG level of 19 and the last one of 576 taken 11 days apart. The calculator shows a doubling time of 53.6 hours, or doubling every 1.36 days. This is normal. At this rate, your HCG level should reach 1500 by Friday or Saturday, and when it does, a vaginal US exam should be performed to look for the gestational sac.
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Posted by Kristy Isett (Member # 8861) on February 05, 2008 07:24 PM:

Thanks Dr. Berger, but shouldn't I be concerned with the fact that it didn't double from Thursday 1/31/08 to Monday 02/04/08??? The doubling rate from those two beta's is like every 6.30 days or every 111 hours I think.Thanks again!
Kris
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Posted by Noelle DiBernardo (Member # 8906) on February 05, 2008 10:47 PM:

Kris,
Did you have another draw today, (Tuesday)If you see this...I emailed you the information you asked for...sorry it took so long!noelle
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Posted by Gary S Berger MD (Member # 3) on February 06, 2008 04:56 AM:

Kristy - Let's wait and see what your next HCG level is.
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Posted by Kristy Isett (Member # 8861) on February 06, 2008 08:23 AM:

Dr. Berger, thanks. I go this morning for my next draw. I know it'll tell me more. I'll let you know.
Noelle~ Yeah I got your email, thanks so much my computer died yesterday, I couldn't get on for anything all day until after DH got home from work to fix it!Love,
~Kris~
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Posted by jami (Member # 9521) on February 06, 2008 08:33 AM:

kris, i love you and your little bean(s)!!! i'm waiting to see what today's labs say....
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Posted by Kristy Isett (Member # 8861) on February 06, 2008 12:05 PM:

Dr B. Ok, today my levels are 746.... what do you think is going on??I'm so confused, I thought these hCG levels were to double every 2-3 days....mine are totally not doing that.I'm so worried that this is another ectopic and I'm going to lose my only tube I have left.I'll check back later to see what you think.
Thanks again,
Kris
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Posted by mamasoup8 (Member # 11212) on February 06, 2008 12:19 PM:

Krys- I don't have any answers for you, just wanted you to know you and your lil bean are in my prayers!-Traci
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Posted by Meridith4321 (Member # 11469) on February 06, 2008 12:29 PM:

Kristy - I would call and try to get an ultrasound - I know 700 is too small to see a sac but sometimes they can see a bulge in the tube or fluid in the uterus. There are other symptoms!!! maybe I would go to the ER. One tube is just too precious to lose, not to even mention that you life is at risk here. Does your Dr. know the protocol? I have heard to tubes bursting at 700 - just to be on the safe side I would try to get an ultrasound - fake pain if you have to!!!! Talk to Berta - I know she is on some of the lists and recently posted about losses on the main page - she can tell you what her number was when her tube burst.Good luck - we are all pulling for you!!!
Meridith
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Posted by Noelle DiBernardo (Member # 8906) on February 06, 2008 01:01 PM:

I am thinking of you Kris.
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Posted by berta8133 (Member # 11188) on February 06, 2008 01:12 PM:

Kristy....Personally if it were me...I would go to the ER. It could be several things. Some need for concern, others - everything could be just fine.Numbers sometimes become stagnet (for lack of a better word)...even though raising a bit...)I think for piece of mind....get to ER for an u/s, tell them you are high risk for e/p due to TR and tell them your last number, and also that you are having pain..tell them- it's kinda tender (pick a side) and that the pain feels like it comes from the back and moves to the front.They should be able to see 'something'...whether a shadow, fluid or swollen tube...etc etc... if they can't see anything yet...then all could be fine and nothing to worry over.There was a sister on our july thread....she no longer posts, but her number never got higher than like 300, and become stagnet, dr did nothing, and she ended up rupturing and losing the tube.My numbers were higher at time of rupture.....a week before rupture they were about 6700 or so... HOWEVER there are those that rupture with a small number due to the tube becoming swollen etc etc....Get it checked. Better safe than sorry down the road. I'd rather worry about something and it turn out to be nothing, than not to worry at all and it become something that can't be fixed.Thoughts are with you and I surely do hope all is okay. Just get it checked--ok??Berta
TR 7/23/07
E/P 0/25/07
M/C 12/8/07TTC our little Z
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Posted by pumpkin_powers (Member # 9198) on February 06, 2008 01:36 PM:

Krys,
Please go to the ER. You're right that those numbers aren't doubling right and it may be just a slow starter or possibly an ectopic. It's better to be safe than to lose your only tube. I went through two ectopics last year, and with the second my numbers were right around doubling for the first couple draws then they started slowing down like yours are doing. With that pregnancy the baby ended up implanted near my bladder and if I hadn't had early monitoring it would definitely have been life threatening. Please take care, and I'll be saying prayers for you and your little bean.Lots of Love
Staci
TR 3-7-06
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Posted by Gary S Berger MD (Member # 3) on February 06, 2008 04:12 PM:

Kristy - I agree that based on today's result your HCG rise is no longer rising normally. When HCG ceases to double within 3 days on more than one occasion, I recommend ending the pregnancy with Methotrexate and continuing to follow the serum HCG until it is back to non-pregnant levels (less than 10). At your current HCG level, it is still too early for an ultrasound examination to be diagnostic about whether it is in the uterus or outside of the uterus. But when a pregnancy is no longer progressing normally, it should not be continued.
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Posted by berta8133 (Member # 11188) on February 06, 2008 04:54 PM:

Kristy, please let us know how you are doing.Berta
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Posted by Melissa In NC (Member # 8796) on February 06, 2008 11:06 PM:

Kris- just wanted to let you know that i am thinking about you & praying
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Posted by brlracer (Member # 11897) on February 07, 2008 12:56 PM:

Any news on Kris? I will keep you in my prayers!
Trish
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Posted by Kristy Isett (Member # 8861) on February 07, 2008 02:58 PM:

Dr. Berger~ I just wanted to update you on what happened, I did in fact have an ectopic. There was a 4.7 CM buldge in my tube, the Dr told me that she would do everything possible to save my tube, but after surgery she told me that there was no way to save it even though it wasn't ruptured, she felt that the tube itself was too "stretched out" she said it looked unhealthy. So, that ends my journey in TTC for now, hopefully we'll find a way to do IVF sometime in the future. Heck, I'm not getting any younger! LOL! Thanks for all of the advice and thanks for everything!Kris
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Posted by brlracer (Member # 11897) on February 07, 2008 03:10 PM:

Kris, I am so sorry for this, I just don't know what to say
Trish K.
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Posted by Amy1234 (Member # 5192) on February 07, 2008 03:17 PM:

I am very, very sorry Kris!
Amy
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Posted by lori4 (Member # 11661) on February 07, 2008 04:45 PM:

Kris, that sucks! I was really pulling for you girl. I'll keep you in my prayers. I hope one day God blesses you with a baby if it is in his plan for you.
Lori
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Posted by JulesnKev (Member # 7375) on February 07, 2008 05:54 PM:

Kris, I am so sorry you are having to go through this heart rending experience. You mentioned IVF, so when you are ready to talk about it you can e-mail me at trulyjulee1967@msn dot com. I have some information you may find interesting. Take time to heal and take care of yourself.
Hugs,
Julia
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Posted by pumpkin_powers (Member # 9198) on February 07, 2008 05:55 PM:

Kris, I'm so sorry that this has happened. Please take care of yourself. This part of the journey is so hard. I hope that you are able to persue IVF in the future. I ended my ttc journey this dec after my second ectopic within a 6month period. I just couldn't take it anymore emotionally or physically. I hope that things get back to normal for you quickly. Please take care.
Lots of Love
Staci
TR3-7-06
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Posted by berta8133 (Member # 11188) on February 07, 2008 06:03 PM:

Oh Krys....I'm soooo very sorry this has happened. Thoughts are with you definitely! I pray you will be successful in your IVF journey.Good luck always,
Berta

PTLS Post Tubal Ligation Syndrome

Posted on the Tubal Reversal Message Board by a potential patient of Dr. Berger at Chapel Hill Tubal Reversal Center:

I believe I am a victim ot PTLS in forum New Message Board Members at Tubal Reversal Message Board
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Posted by Gialisa40 (Member # 8182) on May 29, 2005 09:58 AM :
I have had terrible PTLS symptoms that have only gotten worse. I was wondering does it matter how long you have had your tubal, can you still get it reversed? Will reversal help at any age? What if you are close to menopause? My doctor told me what he was doing couldn't be reversed, it was cut and burned. Is that true?
I appreciate any help or information anyone has to offer.
Thanks, Gialisa40
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Posted by Digger (Member # 7585) on May 29, 2005 11:00 AM :
The time length that you had your TL doesn't matter.My Dr told me mine couldn't be reversed either but Dr B DID reverse it.At times it the tube is too short or severely damaged it may not be reversed.Dr B will request your records from the TL to determine that and if you don't have access to those recors(which I didn't)he can do laproscopy to look before he does the TR.I wish you the best of luck!
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Posted by rkandlm (Member # 6776) on May 29, 2005 11:01 AM :
Gilalisa, My symptoms got worse and worse! It does not matter, from what I have heard, how long since your TL. Dr. B. can fix almost everything! Mine were cut and burned, and I still came out with 5.5 & 6 cm. I had my TR on 11-5-04, and I am now 22W 3D pregnan. After the TR, and before my BFP, all my symptoms went away. All I know for sure is how I went back to normal, and felt a ton better! Bonus.....I now get to be a mom again!YEA!
Hope this helps some, Lisa
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Posted by Rachel RN (Member # 1386) on May 29, 2005 12:36 PM :
Dear Gialisa, I'm sorry you have been having so much trouble with PTLS. Although most patients come to Dr. Berger for TR because they want more children, many women report either significant or total relief from PTLS symptoms following TR surgery. Many have reported reduction in cramping, bleeding, and number of days their periods last, as well as fewer mood swings and other problems. To my knowledge, there is not much data on this (maybe because so many doctors are still denying the existence of PTLS) but Dr. Berger is collecting these reports. Dr. Berger is able to repair the tubes in at least 95% of cases. Your age and length of time since TL are not factors in a successful repair (pregnancy rates, of course, ARE related to age). I suggest that you obtain a copy of the operative report from your TL procedure (from the surgeon who performed it, or the hospital where you had it done) and send it to Dr. Berger. He'll review it and a nurse will call you within a day or so to discuss everything. I hope to be taking care of you in the Recovery Room soon! Rachel Heller, RN
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Posted by tfaith (Member # 8133) on May 30, 2005 05:51 PM :
Gialisa,
You are not alone. I am a 44 year old woman with PTLS symptoms and broke down and cried when I found this site a week ago. No one believed me before. I had been told the only way I could find relief was to have a hysterectomy. My fear of only trading symptoms kept me from doing it. My reports have already been turned in and now I am waiting to have my FSH levels tested. As long as I am not on the verge of menopause I will be having a TR in the attempt to diminish my PTLS symptoms. I still have regualar cycles so feel confident Dr. B. can help me too. I already feel a heavy weight has been lifted, because now I have hope. You are younger than me and I am pressing on, and so can you. BTW - I had also been told that my tubes were burned but my report did not reflect that, so maybe your tubes weren't either.
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Posted by CL (Member # 6765) on May 31, 2005 11:12 PM :
Gialisa40, I can only tell you that my PTLS has gotten worse and in 9 days, I will be having my TR. I am looking foward to my first AF after that to see what happens. I am looking forward to having more energy and getting rid of the mood swings that have developed in the last month. The mood swings is what pushed my husband into getting my TR immediately. Of course, part of this happened because the good Lord helped us to sell our house to make all of this possible. All I can say, is that the day I found this site and discovered that I wasn't crazy and had a OB/GYN doc say that they call it PMS, not PTLS and walked out on me when I asked her morally and ethically didn't she feel obligated to tell her patients what could happen from a TL.
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Posted by taalah (Member # 8162) on May 31, 2005 11:20 PM :
I thought i was the only one having these symptoms and my gyno recommended me taking everything out and i am only 33 gosh i thought i was tripping out again but i suspected it was hormone related to my tl its like i morphed into a different woman will most of this go away when you have your tr and put your body back the way god intended it
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Posted by CL (Member # 6765) on June 01, 2005 01:03 AM :
taalah, I certainly hope so as I do not want to take birth control pills, prescription medication and have more test run to figure out how to deal with these symptoms. I guess in 9 days when I have the procedure and my body is put back together, I will find out. It certainly will be nice to have energy again instead of sitting around the house because that is all you can do. CL
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Posted by colette catalino (Member # 8184) on June 01, 2005 06:31 AM :
This is the first I've heard of PTLS. Since my TL 2 years ago and the return of my periods year ago I have experienced the worsest mood swings, abdominal pain, nausea and cramping not to mention feeling like I am pregnant every month from the abdominal bloating, breast tenderness, nausea and back cramps. After the third cycle I began to think I have excess scarring from the procedure or an artifact was left behind during the surgery. I want this craziness to end. How common is PTLS and does it continually get worse?? Confused and nutty....
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Posted by Gialisa40 (Member # 8182) on June 01, 2005 07:24 AM :
Yes Taalah,
I agree we should be the way God intended us to be. I kept waiting for my husband to have a vasectomy and he wouldn't, 6 kids later, I said I have to do something. Now with these symptoms I am sorry I did. For women we have a monthly cycle and our whole body undergoes changes constantly, we need our estrogen production. Men don't need to produce sperm, except when you want to conceive, which I think we have enough. My brother had a vasectomy and he had no negative symptoms. I just thought I would show the comparison of how much more we are affected by sterilization then men are.
Gialisa40
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Posted by Gialisa40 (Member # 8182) on June 01, 2005 07:29 AM :
Please CL let us know how you feel after.
Thanks so much for sharing! It is so good to know I am not alone.
Gialisa40
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Posted by mommakat (Member # 8204) on June 02, 2005 02:12 PM :
Hello everyone
I didn't know about ptls until I looked into this sight 3 years ago (wanting to get a reversal so my DH and I could have a baby together). I realized then that was exactly what I was experiancing. Not only did I have terrible mood swings (sometimes rageful)but I never knew when to expect my periods (typically 19-30+ days), which by the way were always very painful the first day. After my tr my cycles became very regular, I don't have the mood swings or even the pain anymore!!!
I had my tl Oct. 26th, 1994 after my youngest daughter was born and my tr on October 20th 2004. I have 3 children from my 1st marriage -ages 10, 12, & 14 and am remarried 1 1/2 years now with hopes of another bundle of joy soon.
-Kathleen
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Posted by tfaith (Member # 8133) on June 02, 2005 04:02 PM :
I wish I had found this site years ago, but am grateful for finding now.

Has anyone who was 40+ gone through the TR and found relief from PTLS? Ironically I found this site while researching pre-menopausal symptoms as my PMS keeps getting worse and I am approaching the age. But two things that have remained constant is that my AF's are still very regular and I still feel ovulation.
Thanks,
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Posted by taalah (Member # 8162) on June 02, 2005 11:11 PM :
congrads cl hope your tr goes well and wish you all the luck. i agree with some now let the men carry the procedures from here on because woman have enough to deal with already with everyday hormone problems.
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Posted by little j (Member # 7744) on June 03, 2005 07:04 PM :
Hellow girls,I'm 27 and I have 3 boys ages6,8,and 9 and I've been wanting to have a TR,How has this exprerience been for those who got it done?
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Posted by CL (Member # 6765) on June 05, 2005 12:14 PM :
Gialisa40, I will be glad to let you know how I am feeling.
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Posted by dephany (Member # 6570) on June 05, 2005 01:26 PM :
is ther anyone on line right now who i can talk to about there surgery send back a reply
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Posted by hopeann (Member # 7733) on June 06, 2005 01:10 PM :
Hey Ladies, I had my TR in January. Each month my cycle has been better. This month it was almost the same as before my TL. My period would be about 2 days with mild cramping, after the TL it would last for about 7 days with nausea and heavy cramping. I used to have a bad headache about a week before I was to start, but I believe my body is working this out because my headache is moving around during the month. I would believe it will deminish as well. I wish doctors would give people the information that ptls is possible. I am greatful to have the opportunity to fix my body and let it work as it is supposed to. Dr. Berger and his staff are the most professional and caring office I have met in any field of health care. Thank you Dr. Berger and Staff for all you do. Hope

More Information on PTLS

I Have Lymphedema After Tubal Ligation

This is topic My doctor thinks I have Lymphedema after TL in forum New Message Board Members at Tubal Reversal Message Board.

To visit this topic, use this URL:
http://www.tubal-reversal.net/ubb/ultimatebb.php/topic/6/2675.html
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Posted by cutiebabiesbyr (Member # 11190) on July 20, 2007 10:10 AM:
I don't know what happened when they did this tubal, but I have sooo many problems since then, my biggest problem is my leg swells now and doesn't stop, I saw that someone else got Lymphedema after they had their TL. I need some support here and definitely feel like I'm losing my mind here [Frown] I don't know if a TR will help this, I read that some girls on here had problems with swelling and one girl on here had Lymphadma after a TL too.
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Posted by Hospicegurl (Member # 10548) on July 20, 2007 08:31 PM:
Ladies please try to help her out. I am bumping because you can read through the lines and see the pain.
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Posted by jarz (Member # 9286) on July 20, 2007 09:14 PM:
I wish I could help, but I have never heard of this. I had issues with TL, fatigue, facial hair, lack of libido, terrible AF's, mood swings and all went back to normal after TR. I hope you do find the help you need and Hospicegurl you are a very kind person. Jo
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Posted by cutiebabiesbyr (Member # 11190) on July 20, 2007 10:28 PM:
Hospicegurl, Thank you SOO much, you're way too sweet! I have to go to another doctor to confirm if I have this still, getting really scared in away. It gives me hope that some girls are getting relief from swelling of their legs after their TR, guess I'm going to have to get it done and pray it works. (((HUGS))) If anyone has any info, I would love to hear from you. [Smile]
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Posted by leo79 (Member # 11266) on July 25, 2007 05:13 PM:
Cutiebabiesbyr you are not alone, I was going through the same thing my feet, hand and face were constantly swelling and I had terrible abdominal pains. I went to my GYN and she did a sonogram and told me everything was normal and that I should take motrin for my pain. Now you know your own body and I knew there was something wrong. My HB was tired of seeing me like that and one day he just said you are going for the TR and I did. I had my Tr on 7/05/07 and I know this might be too soon by so far so good. I feel great the swelling is gone my pains are gone and I feel great. The surgery was fast and easy and Dr. Berger and his staff are wonderful. It is so unfair that Dr's don't tell you all the bad thing that could happen with TL. I hope this helps and keep us posted on your condition good luck. Leo [Smile]
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Posted by Rhonda Brown, RN (Member # 9485) on July 25, 2007 07:50 PM:
Dear cutiebabiesbyr, I am so sorry that you are having to go through this swelling. As you can see there have been patients that have experienced some similar symptoms. I know that you will find great support here. We have lots of patients that come for symptoms that they began having once they had their TL (PTLS). Most of our patients that come for PTLS report an improvement/absence of the symptoms after the surgery. I would be more than happy to answer any questions that you may have. You can either call me at 919-968-4656 or by email: RhondaB@tubal-reversal.net I look forward to hearing from you. Rhonda [CHTRC]
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Posted by randi (Member # 10710) on July 25, 2007 09:07 PM:
You are definatly not alone, im sti waitinto get my TR, and I have posted before about my symptns. I went from having a 5 or 6 day AF with only 1-2 heavy days, to now 9-12 days, all heavy, my iron is shot, i think the highes ive had on iron was 8, i used to wrap myself in a little cacoon when I slept, now I only use a sheet and cover just my mid section because im having hot flashes, just horrid, I even went in for a full blood work up and pap just to see if there was anything funny and everything came back normal except my iron. At first my husband thought i only wanted the TR for another baby, we got into a huge arguement that i wasnt just saying this stuff was happening, so I made him come to the bathroom with me during AF, and he was horrified and almost wanted to take me to hospital because he realized that there was way to much blood. I hope I can get this done soon and I hope it helps you and your symptoms, Im only 26 , I feel 90 and the thought of feeling this bad for the next 25-30 yrs until I go through the change makes me cry and also makes me more upset because I was not warned that my body may change, I was told that it would not affect my body at all, i would not notice any change and they were wrong. sorry this is so long, i just needed to vent. good luck to you
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Posted by Holden (Member # 11265) on July 25, 2007 09:27 PM:
Hey Girls: This is amazing! I thought that for the past 9 years I have just had MAJOR water retention. I do not salt anything and try to stay away from foods that contain alot of sodium. The swelling is also in my legs, hands and face--some days being worse than other. I am even on a diuretic for it. Also, my cycles each month are HORRIBLE! I go anywhere from 7-8 days and there are days that it is so bad that I really do not even need to leave my house, afraid of having an accident. I have even had to miss some of my son's baseball and football games because of it. PMS--HORRIFIC!!!!!! My TR is scheduled for 10/04/07 and I really hope that all of these symptoms improve and then I get to have a baby! Wouldn't life be grand?! I had to put my 2 cents in. I hope all of you get relief from the TR! I know exactly what you are going through. Lisa
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Posted by leo79 (Member # 11266) on July 26, 2007 09:14 AM:
Wow this is really amzing on how many of us have had to go through this horrible experience, I wish there was something we could do to prevent others from going thorugh this. I just don't find it fair and to top it off insurance companies won't pay for the TR since they consider it an elective surgery. Sorry to keep on babbling but I am so upset that Dr's don't tell you that you could have all of these problems. To all of you dealing with these issues hang in there I am sure that once you have your TR you will be feeling as wonderful as me. I will keep you all in my prayers Leo
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Posted by cutiebabiesbyr (Member # 11190) on July 26, 2007 01:47 PM:
Thanks girls! I really hope that I have a good experiance with my TR, I feel like everyday I wake up and have a new symptom. If anyone else has had swelling and redness, please post, I would love to know that we're not the only ones going through this. Thanks.
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Posted by cutiebabiesbyr (Member # 11190) on July 26, 2007 01:57 PM:
Holden, I know what you mean, I don't eat anything with salt either, I noticed that my legs are always red, but it's REALLY bad when I get AF or when I ovulate, I can't even stand, I see the blood racing to my legs. My doctors were telling me it's because of my high blood pressure, but isn't it funny, I never ever in my life had blood pressure problems, I was always even when I carried twins at 13lbs my blood pressure was 120/70, but the second I got the TL it's been 140/90, I think that's a big enough red flag if you ask me, so my BP has been up for the last 3 months and I SO blame that on the TL too, I always feel heart palputations and notice there are other women on here that have this too, so I know that's a sign of PTLS. Guess I'm hoping and praying that swelling of the legs is part of the PTLS so I have a chance to get better after my TR, otherwise I'm lost and don't know what else could be causing this, doctors don't even know. leo79, Thanks, I'm so glad that I'm not alone with this, I hope these things get better and I really wished I was warned of these symptoms, even if they would have told me that anything could have happened or if there was a chance of there being a side effect, I would never have done this to myself.
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Posted by Holden (Member # 11265) on July 26, 2007 03:39 PM:
Hi Cutiebabiesbyr: I have a little reassuring news! I went to my GYN doctor today (to have my lab drawn for my TR surgery)and I talked to him about PTLS. He said that he was a firm believer that women DO have problems after a TL. He also told me that he has done research and that he believes that each year that passes after a TL that women's symptoms get WORSE!!? I cannot imagine it any worse. He was excited about me having the TR surgery and he said that he felt sure all of the symptoms would go away afterwards! This is hope for us girls!!! Happy! Lisa P.S. I had my TL done in 1998 (9 years ago) How many years has it been for you girl's? (My GYN said that symptoms usually really start getting even more severe after TL at about 5 years afterwards) Just wondering?
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Posted by leo79 (Member # 11266) on July 26, 2007 04:23 PM:
Hi Holden, I am truly impressed with your doctor and he is defitnetly a keeper, my gyn told me to take motrin and did not recommend the TR. I started with the symptoms two years after my TL and 5 years later I was just overwhelmed until luckily I had the surgery 3 weeks ago today and feel great.
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Posted by cutiebabiesbyr (Member # 11190) on July 26, 2007 05:10 PM:
Holden, WOW, WOW...is all I have to say, that's soooo awesome that you have a doctor like that, I agree he's definitely a keeper! I was told by my GYNO that it's in my head and I should go on anti depresents and see someone, ummmm, my hormones are out of control, my legs are swelling, my nails aren't growing and they're infected, my BP is through the roaf, no hair on body anymore, panic attacks, memory loss, throwing up when ovulating, runs, I can go on and on. I too don't know how much worse mine can get. That's awesome news that your doctor says he believes in PTLS and that a TR will help, this give me sooo much hope and I can't wait now to get it! I'm hoping and praying that out of all things that get better is my legs, BP, and my nails...I really hope these things get better, I only had my TL 3 1/2 months ago and I'm already living you know what [Frown] I hope people keep posting to let me know that I'm not the only one with leg problems.
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Posted by Holden (Member # 11265) on July 26, 2007 06:59 PM:
Leo: That is AWESOME that you feel better already--just after only 3 weeks. Hopefully it will help the rest of us...I am praying for us all!! Cutibabiesbyr...I know exactly what you mean. I started having problems right after my TL 9 years ago and it has only gotten worse. Some doctors don't even believe in PMS, much less PTLS! You and Leo are right, I agree that I have a keeper...there is only one problem...he is retiring next year. I adore him. He is one of those men/doctors that really listen to what his women patients have to say. When he told me that today I couldn't believe it. He said that he had done the research on PTLS and that some doctors try to "fix" it by giving water pills, antidepressants, vitamins,Motrin, Advil and even sending women to see a Psychiatrist...whatever!!! He said there was one way to fix it all--have a TR ASAP!!! I am glad this info helped. You know, I was beginning to think there was something REALLY wrong with me because you feel "crazy", when you know you aren't. Life is going to be better, I just know it! See ya girls, Lisa P.S. See what I mean, I can just start talking about the symptoms and I get all wound up!!! HA
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Posted by cutiebabiesbyr (Member # 11190) on July 26, 2007 08:45 PM:
Lisa, I actually love talking to you girls, it definitely makes me not feel like I'm alone, even if it's just venting. Your doctor described what about what other doctors do to try to fix it you said it perfectly and described what these doctors are doing to us women that have PTLS after a TL to a "T" I can't believe sometimes and understand how they're getting away with this, like DH said, it's only a matter of time until this blows up in their faces weither they know about it or not, too many women are complaining about it for them to keep ignoring it like this, even my GYNO admitting to hearing "of PTLS" I asked why I wasn't informed that there could be a risk to this, she just gave me a face and said "well, we don't want women thinking things" her face was almost like telling me, if they say something, then women are going to put it in there heads and will believe they have these symptoms. It's real and I wouldn't wish this on my worst enemy. I know what you mean about thinking something is wrong with you after doctors tell us there's no such thing, there's no way to imagine these symptoms, when it hits, it hits like a ton of bricks, well...I think more than a ton of bricks, but that's just how bad I have it hehehe Please, please lets keep in touch, after you have your TR, please post on how everything is improving, you've given me hope that most of my symptoms will go away, now I just hope the leg swelling, BP and nails are all part of this too. ((((HUGS)))) Regina [Smile]
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Posted by pghtwins (Member # 11308) on July 26, 2007 09:31 PM:
Hi ladies, I had to chime in and let you know your not alone. I had my TL last year 5/30/06 and have not been the same since. I did not get AF for 2 months got really sick hair falling out,sick to my stomach,almost could not get out of bed. I went back to the Dr who did the TL and he said I was in menopause!! I told him no way in two months how could I be in menopause! He suggested hormones and did blood work. He called back and said sorry you are not in menopause you are hyperthyriod.My blood pressure was high so the endo DR put me on blood pressure pills and antithyroid medicine. I never had any of this before the TL. Now my thyroid is in normal range and I still feel like you know what! I have been to three gyne DR two said Hysterectomy. [Frown] No one that I have seen believes in PTLS. I scheduled my TR with Dr. Berger 08/23/07. I am praying this will help. Sorry so long, but I could go on and on! Lynn
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Posted by Holden (Member # 11265) on July 26, 2007 09:41 PM:
Regina...I will keep in touch and let you know how symptoms are after TR. I guess the really sad part with me is that since TL in 1998, I had never heard of PTLS--until I started reading everything on the CHTR website and on the message boards...then I woke up! All of the doctors that I have talked to about symptoms since 1998 said it was just PMS--take Advil...(yeah that helped...not). (That is the reason I mentioned it to my GYN doc today). My main reason to have TR is for me and my DH to have a precious little baby together but I will anxious to find out if I feel like my "good ole self again"! I'm thinking about you and I know exactly how you feel. This message board really is great!! I'll check in on ya later... Lisa**
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Posted by Holden (Member # 11265) on July 26, 2007 09:49 PM:
Lynn...just chime in anytime! I know how you feel and I can relate to your symptoms...we all can...it is the same old story over and over and over...it is ridiculous what we poor women get talked into, go through and then wind up feeling like garbage all the time...but I feel like it is going to all change for us, for the better! My TR is scheduled for 10/04/07... Good luck on your TR on 8/23/07...We will all pray that your symptoms totally disappear!! Best Wishes for you Lisa
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Posted by juliea (Member # 11218) on July 26, 2007 10:04 PM:
Do you think my blood pressure could be caused by my TL. I had my TL when I was 22, but no one told me I had high blood pressure until I was 27-28. But I HATE to go to the doctor and didn't have insurance during that time either.So I wasn't going to the doctor. So who knows maybe it is the reason. We will see after I get my surgery.
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Posted by leo79 (Member # 11266) on July 27, 2007 08:55 AM:
Welcome PGHtwins, it's nice to hear from all of those who have had all of these horrible symptoms after TL. I am sure that you all will find relief after the TR. Dr. Berger is wonderful and the nurses are just fabulous and the best part of it the procedure is very short. I will be praying for al of you and please keep us posted it will be nice to hear that we all made it to the other side and we are all feeling like new. [Love] Leo
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Posted by leo79 (Member # 11266) on July 27, 2007 08:58 AM:
Julia it probably is but I'm sure your Dr is not going to admit it is. I would just look on the brighter side and get the TR as soon as possible. Good Luck
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Posted by cutiebabiesbyr (Member # 11190) on July 27, 2007 12:13 PM:
juliea, I can almost guarantee that my blood pressure went up because of my TL, I never ever had any problems until then, ever...my BP was always 120/70, the day of the minute the surgery the surgery was over my BP was 140/90 and since then hasn't come down, I'm even on meds and it's not working for some reason...I have to actually go back to the doctors today to do something about this...I hope [Frown]
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Posted by cutiebabiesbyr (Member # 11190) on July 27, 2007 05:19 PM:
Holden, Thank you so much for keeping in touch, good luck with your surgery! I'll be praying for you!!! Well, I went today to the vascular doctor again, my BP is 150/110, this is insane [Frown] I feel it going up too when I'm about to ovulate or get my period, this is soo wrong. I have to head off now to my regular PCP and see what she wants to do, I think I have to change my BP meds. One of my legs is bigger than the other, he didn't have too much info to give me. It's not major, but it's there, anyone of you girls have swelling in one leg more than the other?
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Posted by pghtwins (Member # 11308) on July 27, 2007 06:21 PM:
Lisa... Best wishes to you too! I'm getting kind of nervous how about you? Regina... My legs and ankles swell right before AF also, I get severe pain on the lower left side!My hair has be falling out,and the PMS is terrible!! I'll let you know how I feel after the TR. Lynn
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Posted by pghtwins (Member # 11308) on July 27, 2007 06:29 PM:
Leo, You give us hope!! I'm so glad you feel [Razz] better. My mother and Aunt think I should have a hysterectomy. They keep saying what if the TR does not help?? And I keep saying what if it does!!!I just know my body and the TL messed me up. Thanks for your prayers, Lynn
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Posted by Holden (Member # 11265) on July 28, 2007 09:24 AM:
Good morning girls.... Regina: Bless your heart! You have just got to feel terrible with a BP of 150/110. I am thinking of you and you are in my prayers! I really believe now that TR will help your symptoms as well as the rest of us here. Lynn...You know it is really weird, I am not one bit nervous about my surgery on 10/4. It is strange, but I guess that I am just so ready for it!! You only have 26 days to go, right? I agree with you...I think the TL surgery messed us all up really bad. I am like you, I really believe in my heart that the TR will help you and the rest of us here...I would definitely put off a hyesterectomy as L O N G as possible! I really do wish you luck on 8/23--we are counting on you to update us with GOOD NEWS aftewards!! Talk to ya girls later, Lisa
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Posted by cutiebabiesbyr (Member # 11190) on July 28, 2007 12:27 PM:
Lisa, do you know what's REALLY weird, when I feel the hot flashes and my heart racing that's when my BP goes up, after I posted I headed off the my regular PCP and guess what, I didn't have the hot flashes and racing heart like I did in the morning when my BP what 150/110, my PCP checked it in the afternoon and it was 120/76...I sooo know this has to do with the TL, my body I feel like is jumping all over, I think I'm about to ovulate and my body is going insane again. tell me that's now weird, my PCP asked me who at the vascular doctors office took my BP because she didn't believe me, ummmm, the vascular doctors office took my BP a few times because they were nervous about it being soo high. I don't think my PCP believed me, what else is new, they don't believe anything I say anymore, even when I have proof. Even when I have proof that my BP was that high a few hours before hand, she could even call my vascular doctor and ask him herself, but of course she wont...she just think I'm nuts as usual LOL I've been going to her for over 12 years and never ever had problems with my BP, if she puts the picture together like I am and realize that as soon as I had my TL 3 months ago the moment after that's when my BP has been insane since, she knows from all my records back that I've never had a problem, I should never have said TL, all she keeps telling me is that she's concerned that I'm depressed and needs to see someone, and need to go on anti depresents (heard that 100x), I told her that I'm not depressed, I'm trying to figure out why soo many things bad are happening to me after my TL and don't want to see anyone. Lynn , My legs swell and get really red around AF and ovulation, I can't even stand for 1 minute, I feel like it's not far to my kids That's why I'm hoping this TR will help atleast that and my BP and nails again, not that worried about my nails, but they say nails tell A LOT about what's going on with a persons body, ya know. My legs still get red inbetween AF and ovulation, but I can atleast stand a little long without them getting as red, still red and swell, but now as fast. You definitely have to let me know how you feel after your TR too. I keep hearing the same thing that what if the TR doesn't do anything, I keep telling everyone that I definitely can't live like this, I have to take the chance. And what if it does help me, then I'll have my life back and I wont have this high blood pressure so I'll be able to live to see my kids grow up, this is actually becoming dangerous if you ask me.
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Posted by Blessings (Member # 9736) on July 28, 2007 05:15 PM:
Ladies, I wish you all the best on your upcoming TR's. Any of you that are having them due to PTLS symptoms....trust me you will be so happy that you had the TR. I am a new person back to my pre- TL self and there is so much truth to the fact that having the TL messes with your whole body in ways that really do seem crazy but, rest assure you are NOT !!!!! Blessings, Christie TR 3/13/06 [Big Grin]
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Posted by Holden (Member # 11265) on July 29, 2007 12:33 AM:
Hi Girls... Regina: Again, bless your little heart! I think it is like Christie says...TL messues with your whole body. My wonderful GYN doc said that TL isn't really "what nature intends for us to do" (it's kind of interrupting things and it is worse the younger you are when you have it done). I agree. Talking again about leg swelling, my feet, legs and ankles swell any time of the month--some days worse than others. I work at home doing medical transcription and with sitting at the computer all day they swell and when I stand up my legs feel H E A V Y...Gross! Regina, you need TR ASAP!! Christie...You are a breath of fresh air and give us all hope. I'm ready to get back to my old self (if I remember who I was) and to hopefully have a little one with my DH!!! I'm so glad the TR helped you! Well that is my 2 cents for today.... Talk later Lisa TR--10/04/07!!!
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Posted by cutiebabiesbyr (Member # 11190) on July 29, 2007 11:37 AM:
Lisa, Awwwww, thanks for blessing me [Smile] I definitely need to get a TR ASAP, I don't think I can get if fast enough. I have a question, are we allowed to email each other? I wasn't sure, didn't think we could post each other's emails, but I did see some girls emails on here, don't wanna get in trouble, but would LOVE to keep in touch, I feel like I have another family here and it gives me so much hope and support. How are you feeling today? My legs are swelling as usual, it's hard to not be able to stand, it's amazing how much happens with a TL, I never would have thought this much stuff can happen. I'm trying sooooo hard to think positive and think that this TR will help me, it's hard especially when doctors don't even believe in it, let alone admitting that a TR will help, but just knowing how many girls are getting back to the way they were, give me hope, I LOVE hearing how their symptoms improved, ya know?
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Posted by cutiebabiesbyr (Member # 11190) on July 29, 2007 11:39 AM:
Christie, thank you SO much for posting, I agree with Lisa, your are definitely a breath of fresh air, and we need that SO much. You give us all hope and I love hearing your stories on how good you girls are feeling after a TR [Smile]
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Posted by cutiebabiesbyr (Member # 11190) on July 29, 2007 09:11 PM:
pghtwins, it's weird how we all have pretty much a lot of the same symptoms, the leg swelling is a pain, that's for sure, I sometimes wonder why this happens, I can't wait to hear how everyone does after ther TR [Big Grin] [Love]
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Posted by leo79 (Member # 11266) on July 30, 2007 11:01 AM:
cutiebabiesbyr, I am glad that you BP went down but you should still take care of your self. I defitnetly think you should consider getting the TR as soon as possible, I don't think that getting a hysterectomy is the way to go at this point, that should always be your very last option. Please keep us posted on your condition, I will keep you in my prayers. Leo TR 7/05/07
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Posted by cutiebabiesbyr (Member # 11190) on July 30, 2007 04:11 PM:
Leo, Thank you soo much for thinking of me, I was talking to DH, I'm definitely gonna get the TR ASAP. I don't want to get a hysterectomy if the TR will help me avoid this, ya know How are your symptoms as of today? What's improved since your TR? You must be on cloud nine [Love] [Big Grin]
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Posted by leo79 (Member # 11266) on July 30, 2007 04:52 PM:
I feel great, all of my pains are gone my only other worry is I ended up getting polycistic ovaries from the TL so I will be going to the DR in a little while to get treated for that, Yes I know one more ting to deal with because of that TL. I will keep you posted. I am glad you are getting the TR done soon Leo