Posted on Yahoo AnswersI have Post Tubal Syndrome and need a reversal but doctors charge so much and will not work with me is their any doctors that believe in this and will help me?
Dr. Berger at Chapel Hill Tubal Reversal Center in Chapel Hill, NC is the only doctor in the country with a practice that is limited to tubal reversal surgery and, to my knowledge, he is the only doctor tracking statistics on post-tubal ligation syndrome.
The problems you have described are familiar to us and we definitely know that the problem exists since we have heard similar stories from so many other patients. Unfortuantely, as you know, "PTLS" is not recognized as a problem by either the medical establishment or the insurance industry. Dr. Berger began studying this problem in his patients because a certain percentage of the women contacting our office would mention developing a variety of health issues after undergoing tubal ligation. Fortunately, the majority of women have contacted us after their reversal surgeries with Dr. Berger to say the TR had helped them dramatically - even if pregnancy was their primary goal.
We are collecting data from Dr. Berger's patients who tell us they have this problem, then following up with them 6 months after their TR surgery. We have not completed this study yet - but so far, it appears that close to 90% of the women we have followed up with have experienced either some or dramatic improvement. There is not way to know whether you would be one of them - but you certainly have a possibility of feeling better from the TR surgery.
I hope this information is helpful to you in making your decision. If you would like more information, you can contact me directly at
JuliaS@chfc.net.
Julia Smith, RN
http://www.tubal-reversal.net/The following from our message board details one woman's story:
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My doctor thinks I have Lymphedema after TL--------------------------------------------------------------------------------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 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. --------------------------------------------------------------------------------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. --------------------------------------------------------------------------------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 --------------------------------------------------------------------------------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. --------------------------------------------------------------------------------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 --------------------------------------------------------------------------------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 --------------------------------------------------------------------------------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 --------------------------------------------------------------------------------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 --------------------------------------------------------------------------------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 prayersLeo --------------------------------------------------------------------------------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. --------------------------------------------------------------------------------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. --------------------------------------------------------------------------------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? --------------------------------------------------------------------------------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. --------------------------------------------------------------------------------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
I hope people keep posting to let me know that I'm not the only one with leg problems. --------------------------------------------------------------------------------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 --------------------------------------------------------------------------------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 hehehePlease, 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 --------------------------------------------------------------------------------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. 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 --------------------------------------------------------------------------------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** --------------------------------------------------------------------------------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 --------------------------------------------------------------------------------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. --------------------------------------------------------------------------------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.
Leo --------------------------------------------------------------------------------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 --------------------------------------------------------------------------------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 --------------------------------------------------------------------------------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 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? --------------------------------------------------------------------------------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 --------------------------------------------------------------------------------Posted by pghtwins (Member # 11308) on July 27, 2007 06:29 PM: Leo, You give us hope!! I'm so glad you feel 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 --------------------------------------------------------------------------------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 --------------------------------------------------------------------------------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. --------------------------------------------------------------------------------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,ChristieTR 3/13/06
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