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Denise! That is a wonderful idea. Have you spoken to anyone at CHTRC about the scholarship fund? Really good thinking! ***Mummytomy-it really does get better. I just had my TR 7-8-09. While I cannot say that much has changed, I certainly feel a calm in me that I have not had. I can say my mood is certainly uplifted! The change for me will certainly be evident within the next week and a half to see if the terrible PMS has moved on since my TR! With this I continue to pray and am confident in the work of Dr. B! When you do decide to have your TR just know that you are in wonderful hands and that things can and will turn around for you! Also, know that we are all here for you and have been exactly where you are! Don't forget to cling to prayer and these boards! I pray that you are able to schedule soon! My thoughts are for you and to feel better! Thinking of you.
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Cherry, Hang in there. We, those suffering PTLS, all COMPLETELY understand. None of us was informed and the insurance companies and many physicians do not believe in it. I encourage you ALL to speak out about TL and PTLS.
Dr. B is trying to make a case study about all of this and hopefully prove to the medical community that PTLS is VERY REAL and if that happens insurance companies will start to cover it.
I am going to start speaking about TL and the results that many women suffer at/through my church. I worship God in the Catholic Church and we have Engaged Encounters where engaged couples gather together for about 6 months prior to their wedding date to discuss important topics. My parish has talks also that I am going to be making myself available for.
Like you, Cherry, and many others I was not informed. I was simply told, "Denise your body cannot have any more children." He recommended TL and we, DH and I, went for it. DH never had a peace about it. It bothered him terribly. I became a horror to live with, the 3 weeks out of the month where I was a monster and the 1 week during AF that I was pleasant. I am so grateful for my TR. I feel like "ME" again. No more mood swings, no O pain, no AF pain, and best of all...I actually have a libido again, LOL.
***IDEA*** I am wondering if Dr. B can set up a scholarship fund at CHTRC for women suffering PTLS. Apply for the scholarship and maybe CHTRC could grant 2-3/mo? Maybe they could even go one step further and donate 1 TR/mo! If a scholarship fund was set up, maybe those that have already had success could donate to it also, I know that I DEFINITELY would donate to it.
Blessings to all. Stay faithful, there IS a light at the end of the tunnel. Miracles do exist. Peace in Christ, Denise-45 TR:5/13/09
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WOW!WOW!WOW! I am amazed at all of the woman on here who are in the same boat as me. I had my TL done Feb 01 at the age of 21. I had two children, and the father did not help me with them at all. It is so sad the so many of us are on here due to the lack of information re:PTLS Which is REAL!!!! I am now remarried to a wonderful man whom I have known since I was 4yrs old. He has 2 daughters from previous marriage, so all together we have 3 girls 1 boy. I stood in the baby section the other day with my 12 yr old daughter and cried. I feel broken as a woman, not to mention PTLS. I told her that I wanted another baby, she offered to give all of her B-day money and now we have a jar that is dedicated to "The Ezra Fund". We are gonna travel from California when we save enough. Best of wishes to all of you. I will be praying for all... BTW I am not familiar with some of the abbreviations Please help!!! Angela P
I am sorry to hear that you are suffering from PTLS. Many women have similiar symptoms to what you are experiencing. We would be happy to help you! Both Dr. Berger and Dr. Monteith are excellent physicians with a 98% success in tubal reversal! As you can read from your posting, a lot of patients notice immediate relief from their symptoms. Please contact our office so we can help you!
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Dearest Cherry, I had TL in '01 and began to notice changes in my within about 3 months of having it. I mostly suffered with pain around CD 8/9 through 15/16 and just before AF, major mood swings a sort of Dr. Jekyll Mr. Hyde affect, little to no libido, hormone imbalances, major depression in my neurotransmitters. I finally had TR 5/13/09 and have already noticed a difference. At first I felt a "calm" within me. I have a libido again, a real one, yet during PMS time I don't (this is my second cycle since TR).
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Cherry.. If you have the clamps that is very good news. My tubes were cut and burned. I am so sorry for what you are going through. I had SEVERE PTLS. I thought that I was going insane as well. The doctors kept saying that I was just depressed, etc. When we started talking about wanting another baby I came across Chapel Hill's website and found PTLS. I sat here and cried because I was so relieved to have an answer to what was going on with me. I had my surgery a little over a month ago and within days noticed such a difference in how I feel. I have been almost bedridden for the past year and now feel great. I will be praying for you that you are able to get the funds to be able to get "put back together". It is terrible that PTLS is not recognized as an actual condition and that we are not warned before we get the TL done. I have told all of my friends and anyone who will listen about it and encourage other women to not do it. I am so sorry honey for what you are going through. All of the women on here are here for you and are wonderful about encouraging women who are struggling. If one does not have an answer the others will chip in and we all get answers we might be looking for. Take care and God Bless! Heather
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Cherry - I'm sure part of the reason that counseling does not exist is because so many ladies don't suffer from PTLS either. I was fortune that I never had any issues after either of my TL.
That said - I do believe that groups including CH are putting enough documentation together that it should at least be mentioned as a possibility. These drug commercials we see on TV list a zillion side-effects of drugs like Viagra or PAD, but no mention of PTLS when a women makes the choice to ligate her tubes.
I hope your able to book a TR soon, and get some relief. I find it very sad that so many ladies are almost debilitated each month by a very real and scary disorder like PTLS. I can't imagine it myself, and I know I would be as distraught as you are..
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Cocoamommy-when is your TR? I am scheduled 7-8-09 and like you said it can't come soon enough! I had my first son and did not have problems with what I thought was postpartum all along. My second son came along 18 mos ago and things just did not seem right following the birth/TL. I first noticed a decrease in available breat milk and only breast fed him 2 mos or so. I had awful emotional control and would cry uncontrollably. I could not get enough sleep and normally feel exhausted after little exertion. I have little to no self-confidence b/c of how I feel most days with energy and decreased motivation to. My ability to think straight and remember things disappeared. My moods are out of control and I have no history of mental illness. My libido has vanished. I feel so inadequate as a parent these days. Although, I try my best each day and pray to God for more strength each day! I wish I would have known then what I know now! I strictly chose the TL b/c of the premanent birth control. Had I known the consequences physically, mentally, emotionally, and spiritually...I would never have decided to have done this to my body. My doctor originally did not want to do the TL b/c of my age and thinking that I would want more children. I decided on it b/c I am 34y/o and knew that I would not desire more children or pregnancies. I only wish that doctors would inform their patients of the minimal risks associated with TL. I did not get that. I love that we all pull together and rally for the same purpose! I hope individual and full recovery for anyone suffering from PTLS. Emily
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Cherry, I have suffered from PTLS for the past 2 1/2 years. I had my TL right after having my daughter in 2006. I've been miserable every since.I never knew there was such a condition either, until after I had it done and started feeling horrible. I've been on antidepressents since then because I'm so depressed and have horrible mood swings. We can't really afford for me to have the surgery right now but I can't take feeling sick anymore and decided to charge the surgery and pay it off with monthly payments and tax return money. I'm scheduled for next month and I tell you, it can't get here fast enough. I think it's a shame that insurance companies won't pay for atleast a portion of the surgery but what can you do. Your definatly not alone and have found a great support group here. There's ladies that have already had the surgery and those of us who are still waiting to have it done. It's nice when your having a bad day to come to the boards and know that your not alone. The CH staff has been so great by answering all of my questions, even before I knew I was going to go through with the surgery. If your wondering if your a candidate for the surgery you can get a copy of your post op records and have them faxed over to Chapel Hill and they will reveiw them for free and tell you if you are a good candidate for TR surgery. Good luck and welcome to the boards!
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I plan on bringing up the PTLS to my OB who completed my TL in September. I am hoping that I will have positive results from the TR in early July and I can share them with my OB. I really did not seek her advice out prior to scheduling so I am wondering what her take on the PTLS thing is. I know she is aware of how many times I have been in her office or had a UTI/yeast infection since the TL. I am so ready for the slow fade and feeling of dying to be done already. I have 2 1/2 weeks until TR! Here is to God doing amazing things in where He has led all of us who are suffering. His purpose is for us to have a future and hope! Best wishes to all of you out there! You have all been a wonderful inspiration to me and I aim to be that influence to many others after my procedure! Emily
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PTLS can be completely devastating to all aspects of your life and health. We all need to keep getting the word out in the hopes that some day, this syndrome will become widely accepted in both the medical and insurance communities and that women everywhere will make a more informed choice with a complete understanding of the potential side effects of a TL before they consent.
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I know where you ladies are coming from...I suffered from PTLS for 2 years. I just had my TR a week and half ago...and you wouldn't believe the difference it has made already. BTW Cherry...my doctor told me my TL was irreversible, too...but Dr. B was able to do it. I had my TR for PTLS...I don't plan on having anymore children...but it is worth having a TR even if just for the purpose of getting back to normal. If you decide to not get a TR (or if it isn't possible)...the PTLS symptoms were alot less (not gone, though) when I went on YAZ BCP and an anti-deppressent (SSRI). As far as your anger over not being warned about PTLS...I understand! But the thing is, almost all doctors don't think PTLS exists. That is why I am so greatful for CHTRC...because they are doing a study on patients with PTLS, so that someday through this study, other doctors will realize PTLS is REAL! I prayed alot about PTLS and God brought me to this website and when I decided to have the TR, HE provided every penny for it...I have to give Him all the praise and glory for my story because He made it all possible!
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Cherry - I feel badly for what you are going through and the way that you are suffering. It took me a long time to discover PTLS. After I had my son in 2005 (at age 40) I had the TL mainly for my husband. I never considered the ramifications emotionally of doing it either. He was very clear he would be happy with 1 child. I said no. When PG with #2 he convinced me to tie my tubes since we had a girl and were having a boy. Well, he was a 6 week preemie and as I was being wheeled in for my ER C-S I reneged on the TL and told them get in and get the baby out and touch nothing else. I was crazed with fear that he was going to die. Well he was fine and so was I. We agreed we were done at 2 (although I never felt "done"). Less than a year later I got PG due to BC failure..We were shocked. #3 arrived in 2005 and I knew the TL was going to be what I HAD to do to keep my husband relaxed and at peace. Remember, he wanted 1! I did it without much other thought, having been told the only (rare) side effect was that they could fuse back together and you could get PG..so much for that. You are similar to me in that you are experiencing these symptoms post-partum. I thought all of the things going on in my mind and body were from the hormone changes of delivering and the post-partum phase of having a baby. I bled for 12 weeks (never had that before) and gradually had more and more symptoms until I could count 22 of the 34 or so associated with PTLS. I did not find out about PTLS until spring of 2008 when my mind, body, spirit and marriage were almost in ruins. It is not medically accepted as a true syndrome in the medical or insurance community. Insurance companies may pay for it as it relates to fertility coverage (and THAT is solely by plan design and is individual to a company and how they create the plan for their employees)..Most do not pay it for any reason. I feel for you. I suggest you keep track of your symptoms to see if any of this is actually post-partum depression (PPD) related. You need to watch that and get help if you start to feel helpless or continue to not feel like you. Talk to someone. You could very well have PTLS. I thought I had PPD too but so many more symptoms kept coming that, eventually, I could not deny there was something else going on. Regardless of whether or not women get PTLS, it is completely normal to mourn the loss of our fertility when that reality sinks in (even if the surgery was by complete choice for the woman too). Although that is a normal feeling, it is tough on us emotionally. I suggest you write down the symptoms you have an when they occur. You can speak to your doctor who, in all likelihood, will not be a believer in PTLS, but may at least be supportive. I suggest after your MD you visit a Naturopathic doctor and get yourself on a regimen of vitamins, herbs or whatever to get your body back on track. That saved me and got me functional somewhat. I was able to work and do things but it bridged that gap to get my true healing which came through TR. If you do go to one please coordinate what you may be advised to take with your MD who has your medical history. If you are breast-feeding some things may be off limits too.. I hope you do not have PTLS but, if you do, you ARE NOT ALONE and you have a great support system here (of many wonderful women who have shared what you feel) for advice and a shoulder. At least you know that "irreversible" is not really true and that a TR could help. I had mine at 43 and was healed of virtually every symptom in 8 weeks. It has been a year and I am still good.
Hang in there, good luck and let us know how you are doing.
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mummytomy12, Doctors don't counsel before TL because they (and insurance companies) don't believe that PTLS exists. I too had symptoms that started immediately after TL and I had no idea that PTLS existed. Within a week after TL I gained weight and had horrible AF with clots! Never had that in my life. Gradually more things happened that were not normal for me. I had TR on 5/12/09 and waiting for things to change back to normal. I'm sure it will in time. I hope you can have TR and have "yourself" back even if only to rid yourself of PTLS.
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Cherry you are not alone. I too have been suffering from PTLS since 2004 when I had a tubal after my second son. My doctor doesn't think PTLS is real and now I am struggling to find a way to pay for the TR. They were accepting financing and I was going that route. Now there was just an announcement on the board that they are no longer doing that so now I'm stuck. Saving money is going to take an extremely long time and Im tired of suffering and want it now. It has affected my relationship with my husband, I have no patience with my children and I am a monster 3 weeks out of every month. I am so tired of all this and it seems everytime I think I am that much closer to making the TR happen, I hit a roadblock and get slammed to the ground. I don't know what to do....Sorry to rant to you but I am just so frustrated!!!!!!!!!!!!!!
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When you do decide to have your TR just know that you are in wonderful hands and that things can and will turn around for you! Also, know that we are all here for you and have been exactly where you are! Don't forget to cling to prayer and these boards! ![[Love]](graemlins/hearts.gif)
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