posted
I know for a fact that PTLS syndrome is not a purely mental condition because many of my symptoms are physical. I also do not have the traditional reasons for mental symptoms… I do not regret the loss of my fertility because I did not want children or my fertility in the first place and I most certainly do not want more children. I had also never heard of PTLS until well my symptoms surfaced. Some of the symptoms that I have experienced can be caused by mental anguish over true regret for whatever reason, but I will list my symptoms here so that you can see the ones that cannot be caused by such mental issues. I had also never been on birth control pills for any extended period of time because I had serious side effects from them, so I know that the hormonal changes are not due to coming off “the pill.” I knew my cycle and body very well prior to all of this and rarely even had menstrual cramps, they were never bad, and I never had PMS in my life (I will go as far as to say that I believed that PMS was little more than a myth.)
Here are the symptoms that I experienced ONLY shortly after the surgery, but have since subsided. These symptoms occurred before I had even heard of PTLS and these are among the symptoms that I later researched. • Night sweats • Rage and severe mood swings • I experienced what seemed like hallucinations. Since I have never had hallucinations before, I cannot say for sure that was what they were but it was as close as I can imagine them to be. • Fatigue. • No period for 2 months, then spotting for a few days followed by a very painful and bloody period. Nothing like I had ever experienced before. The blood did not look like anything that I ever had before, large clots and it looked “old” when it finally drained. Some months the odor was so bad that people standing near me were bothered by it (tell me THAT is not embarrassing – and it did not matter how often I changed the pad because I bled so heavily.) That odor was not in my head. • I lactated for six months following the tubal, even though I was not breast-feeding.
Current symptoms, many of which I also experienced during the above time but were not exclusively during the first few months following TL. • Sore breasts • Cyclic headaches (I did experience these as a teenager, but they stopped when I turned 18.) • Body aches and joint pain similar to what I experienced during pregnancy. • PMS that seems to last three weeks out of the month. I get bloated to the point that it is visually obvious. I need a larger bra size to prevent spilling out of my usual bra and due to the increased sensitivity. Try squeezing swollen, tender breasts into a bra a size or two too small. • Nausea that makes me feel like I am about to vomit or pass out. • Difficulty concentrating and forgetfulness. • Difficulty sleeping. I have begun using a progesterone cream, and that has balanced me out just enough so that I can get some sleep. • Mood swings, though not as uncontrollable as they were. • I have minimal patience for anything. I went from being very understanding and forgiving and patient with hubby to biting his head off at almost every little (and not so little) thing. I guess that I should mention a generally irritable attitude about half of the month or after my buttons have been pushed just once (it used to take a LOT to push my buttons, and it had to be repeated before I would get angry.) • Almost NO sex drive. I went from a very high sex drive before TL, to being disgusted as the idea of sex most of the time after the TL. The act no longer feels the same. It almost feels like my brain has stopped communicating with my sex organs. This is not a depression problem because I am not depressed now, but I still have no desire. I do not crave it like I used to. Before TL I could not get enough, to the point that I had no control over myself when I was in a private moment with hubby. Now I can go days without touching him and not even realize it. This symptom alone does not make the TL worth it. I mean, a birth control method that kills your sex drive? What’s the point? I may as well have just chosen celibacy and kept my desire. Even when I was not sexually active I did enjoy the feeling of desire, but now that is totally gone and I feel like I really lost a good part of myself. I enjoyed sharing that part of myself with hubby also. This may be more information than most people want to hear, but it is necessary to explain how different things are and how important this is to me. It is not because of a change in feelings for hubby, because I do not even fantasize anymore, I cannot fantasize anymore (I have tried just to see if it works.) I spent most of my life enjoying a healthy fantasy world and now it’s gone. I am not even attracted to really gorgeous and great guys anymore. • Pain in my sides. This has been listed under PTLS, although doctors do acknowledge that this pain is real and an occasional occurrence after TL. They do not categorize it as PTLS. It is believed that this pain is caused by scar tissue and/or adhesions. The pain has gone from sharp, stabbing pains in my sides (this was the worst immediately after surgery). This pain was noticeable even with prescription pain pills. It has since settled into a chronic ache with occasional sharp pains (ibuprophen has little effect on this pain). If I do manage to get some relief from pain pills, then it simply reduces the pain to a “pulling” sensation. The sharp pains usually occur during those “special times of the month” such as when I should be ovulating and during my menses. The sharp pains also occur when I get sexually frustrated, basically anytime I am hormonal.
I am only 30 years old and I had the TL surgery September 2003. I had the parkland method of TL.
I have had tests to be sure that nothing ELSE is wrong with me, and all results have come back normal. The doctor simply said that I am one of those people that is ultra-sensitive to change. I must just live with and deal with these symptoms and all she could suggest was over-the counter herbal remedies (progesterone cream and primrose oil) since I cannot take stronger medication. If I had been informed that there would be ANY hormonal effect from the TL then I would never have even signed those $*%$#@ papers.
posted
And here I thought I was the only one that turned into the "she demon" once a month! Boy, will my husband be glad to know that he's not the only man that is going through h--- once a month.
I had my TL done almost 3 1/2 years ago. The first year or so, I really thought I had done the right thing. Then when I met my husband, I knew better. Actually, I had regreted it before I met him. As of right now, it's going to be about 2 more years before I can even think of scheduling my TR due to other family obligations. But I know for a fact that I want to have it done. If for no other reason but to give him a break from my severe PMS!
posted
I don't know if you will get a dr to commit to a definate yes or no answer on that, everything that I have read has basically been speculation as to the cause. Wether it is mental or physical it is a side effect and is very real, one way or another. I know when I first went to my dr she said that dr's don't really believe in PTLS, but I don't think she has the same opinion now as she did then. Now she acknowledges it and says it is very rare, well I still should've been told even if it is very rare. When you take a medication you are to be told of all the side effects rare or common, let alone doing something to your body that is supposed to be permanant. I am someone who absolutely had no other needs for her services other then while I was pregnant and now I have gone from heavy painful periods to not having a period for 3 months and then taking provera to start it. All my test come back normal. At this point I don't care wether it is mental or physical all I know is these things never happened before and since the TL nothing has been normal. I hope one day all women will get the answers they deserve and every women considering TL as an option is told of all side effects! Stacy
posted
So, can any of the doctors or nurses answer this question...is post tubal syndrome a real physical problem or just a mental one? As some of you know, I have been planning on having a tr since a month after my tl in December. I have been unsure...not sure if I want any more babies or if I am just upset about how I feel about having the tubal ligation.
posted
I did some research on this site and found a testimonial from a lady that has had her TR for over 2 years now. Hope this helps with the long term question?
posted March 27, 2004 05:49 PM Hi Ladies,
I had a tr two years ago and can tell you that my PTLS symptoms totally disappeared after the TR. My very first period after the TR was noticably better. I would say it took about three months for me to be totally symptom free. I suffered for ten years and the past two years have been terrific. Having the TR was the best decision I have ever made and worth every penny. Good Luck to you and I truly hope you will be able to find the same relief that I did. M Watson
posted
There is a place that your input could help. I joined a place called tubal.org. They are advocates to create laws to better inform women of the side effects of TL's. This site is packed full of studies and information and ways that you can actively help the "cause." I joined for only 4.95 through paypal. They send me updates and let me know when a letter from me is needed or a petition needs to be signed by me. I feel like I am part of a group of voices that together is One Loud Voice. If you don't want to join...you can still go to that website and read there info.
Good luck girls! Marge
[ November 22, 2004, 07:45 PM: Message edited by: Gary S Berger MD ]
posted
Dear Ladies- I keep hearing the same thing from all of us who have had a TL we regret it and so many of us did in the first place because of past relationships and i agree with Lisa (I think it was her) no woman should make the choice to have her TL when she has babies at home..I was 19 with 2 babies both under the age of 2..abusive husband and a family that just wouldnt shut up about me getting a TL done..so i did it just to shut them up. I too cried on my way to OR..and then had all these horrible feelings afterward. Now with my soul mate of a man we have been talking about having a TR done for 2 years now..we both would love a baby more than anything...but even if we dont just to feel normal again will be a blessing. My TR is booked for July 29th. It was hard coming up with the money (I am in canada and it costs around 3000.00) I dont understand it..here in canada a TL is covered by our health care but a TR is not..
Women we need to do what I am doing..every woman i talk to with children who are talking about TL i tell them my story and all my hateful feelings..what gets me really going..is my ex didnt want anymore children i really wish that i would have made him go..get done..i am stuck with this bill and he is walking around still able to have children..boy life can be unfair. Knowledge really is the answer and doctors who do TL really need to inform us of these problems..I want to know why there hasnt been any studies yet?
I have had my tubes done for 11 years now..so those who have had there tubes done for a long time and are thinking about having a TR i will let you know in a couple of weeks how she goes..
posted
I also have nearly all of the symptoms of PTLS, and of course I had never heard of it before I started researching my syptoms/problems after the TL. I am specifically looking to right the wrong that was done to my body but I am on the fence right now about whether I should even HOPE to feel like myself again. I wish that there were some real statistics that show what the percentage of women with PTLS actually improve due to a reversal and how long those benefits last (some women have still gone on to have a historectomy a few years after the reversal, in spite of much relief of their symptoms temporarily.) Can a doc or nurse explain why a reversal should alleviate some/most of the PTLS symtoms? I am looking for a medical explanation, to soothe some of my concerns and doubts as well as to defend my position that other women have been helped by TR so why can't I? I have read a number of theories, from restoring blood supply to the fallopian tubes being partly responsible for hormone regulation...
If there are TR docs willing to acknowledge this problem then why won't the TL docs? At least to be on the safe side and inform their patients of POSSIBLE side effects? I hate to think that the only women that benefit from a TR are the ones who have physical manifestations of regret over losing their fertility or disobeying god. I am not one of those women, but my body and mind have suffered nonetheless. Even if TR is a long shot for relief, as long as there is nothing else wrong with me that could possibly cause these syptoms to appear out of the blue just after that surgery, then I will have to take that chance and save up or apply for financing for a TR. I am glad to hear that many women do feel significantly better (some say 90-100%!) after TR, I just hope to be one of those lucky ones. I will worry that my doc did too much damage to fix until someone actually goes in there and sees what happened to me.
Does having a laparscopy and removing excess scar tissue (if that is suspected of causing pain) hinder a later tubal reversal? Is it better to do all of that at the same time (TR and removed scar tissue) to avoid 2 surgeries at that site?
posted
Just curious to know how many women out there are my age and considering having a tr. I'm soon to be 41 and had a tl almost 17 years ago. I too had my tl due to a bad marriage and my then husband didn't want to have anymore (we had two sons) he then went on to have 2 more children with two other women, while I longed to be able to have more. I've always felt as if I have at least one more child out there somewhere and am considering doing this. You can imagine my surprise when I started to research this and found out that it costs considerably less than I had anticipated. My concern of course is my age, I do know that I had the Pomeroy method done, but I don't know if length of time between the tl and tr is a factor. Does anyone know? Also I have looked at the percentages posted of pregnacies in women my age and they don't look very positive. I'm amazed at all the syptoms I've had over the years that corralate with all these other women and Tl's... unbelievable, I'm actually menstrating right now and miserable, headaches, breast tenderness that is unbearable at times. This has if nothing else, been an eye opener. Thanks to all of you for sharing your stories. Lisa
Patients come to us for a variety of reasons. Some to have another child, some just to feel whole again, and some to treat the symptoms of Post Tubal Ligation Syndrome. We are pleased to help any patient we are able to!
Best wishes to all,
Caryn M. Hertz, MD Director of Anesthesia Chapel Hill Surgical Center
posted
Ladies I know exactly what you are talking about. I had my tl when I was 26 because I was fertile myrtle and did not want another child by my abusive ex. The OB said for him to get fixed and he informed me then that he wouldn't do it because some day when we weren't together he may want to have another child. I told the OB to just do it because I did not want another accident with that scum. I love my son but I was not ready for another child. (He was #3) After my tl I had a headache that would not go away. I also was bleeding and clotting very heavy. I have migraines with my period every month. I went through hot flashes, put on birth control pills, mood swings so bad that I didn't even want my children around and they are my life, situational depression, and weight gain. My regular physician tried to figure out a way for me to get a reversal where the insurance company would pay for it but it didn't work. I have stopped the birth control pills over the past 4 years since I met my dh but the periods aren't any better. The main reason I want the tr is so that dh and I can share in a child together because he doesn't have one but the other reason is also because of all other health issues I've had since. I know dh would be happy if it would get rid of my pms! I never had pms before. Anyway, not to be so winded just wanted to say that I know how you feel. I'm having my tr finally on July 23 and I can't wait!
Best of luck to all of the ladies who are thinking about it and baby dust to those of you that have already had yours.
posted
Luckily, I had a loving OB-GYN. He begged me not to have the TL done in the first place. I was 23years old. When I was going into the Operating room, he asked me again if I were sure I wanted it done. Yes, I said, I don't want anymore children! Now, that was coming from a woman that had just had a baby--Out her rear end!!! I personally think, there should be a rule--Let the woman wait a few months before having the surgery. Maybe 6 months after the baby is born. That way, it's not a bad choice. I think less Tubal Ligation's would be done. I did have some pain and depression, and other things that happened to me after my Tubal Ligation, but I can't really say if it was from the TL. Maybe it was, but I never told anyone about it. I've already had my Reversal, haven't seen any change in my periods, but I haven't had any trouble with them in about 2 years.....I'm sort of worried about having bad ones now.
posted
Hi yates4, Welcome to the board, you need to check with your insurance company's customer service and ask them if they cover this procedure, some insurance does cover this, the procedure code is 58750, if they say that they do, ask them to send you something in writing stating so.
posted
WOW!! I was surfing the net and not sure what brought me here but boy am i glad i found this. I am 29 y/o had a tl about 5 years ago and i have everyone of these symptoms that each and everyone of you have discussed headaches,clots,heavy bleeding, pinching on sides, ETC. My gyn put me on anti-depressents and aleve for the pain and of course never mentioned any of this as a side affect. He has done ultrasounds and other tests and found nothing. I never put these two together until i found this site. Sounds like the ones with the TR have immediate changes but if insurance does not recoginize this - I also work for a major insurance co- then it will be rather impossible to pay this much money to have this reversed.
posted
I completely agree with you! I have had problems ever since my TL 2 years ago. The problem is though that most doctors won't even recognize this as a problem. I really don't think that they will even in the near future. Just think how many hystorectomies were performed due to pain. I know my SIL just had one at the age of 29. I don't know her whole story but I know she had her TL 3 years ago and started having pain during intercourse. And also most insurances could say that they didn't cover the TL to begin with. Just think how many TR they could prevent if they had informed us that there would be a chance of this. I was told no side affects. I was so careful with birthcontrol because I have migraines. I did not even try a depo shot because of the 3 months I might have to live with side affects and now I get a life time to live with more migraines then I ever had on BC and lots of pain and depression. I am sorry I am having a down day Thanks for letting me vent
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