ANY WOMAN THAT HAS A MEDICAL DEVICE OR HAD A MEDICAL DEVICE PLEASE JOIN THIS GROUP.
It is a collaborative effort to get all victims together so we can communicate and bring about change. Consider it your news source and a way to fight big pharma- not members. This is NOT a support group.
If you would just like to follow helpful information on PTLS and other health related conditions, follow our
Public education page
Public education page
If you are unfamiliar with what PTLS is, please
take a look around (at the bottom of this page is a brief description). You
will find I have my story listed on the tabs above...the vivid description of suffering through PTLS that so many others endure. Most often women are unaware the changes
they have been slowly developing are related to their tubal and most Dr.'s will NOT
recognize or consider the possibility either.
NOT ALL WOMEN DEVELOP THIS SYNDROME AFTER A TUBAL LIGATION which is why the syndrome has been debated for so many years (it's very difficult to prove with diagnostic testing). My main goals in writing my story is to not only educate those that may not realize what is going on with their own bodies (as I didn't at the time it was happening) but to also inspire others... I'm living proof there is hope and healing by having a tubal reversal. PTLS is not a natural part of growing older, nor does a woman have to live in such agony. Everything the Dr.'s claimed was not related to my tubal got better after a reversal!
If you are here as a result of a
"Twitterbomb"
Then thank you for stopping by. There are so many women who suffer from PTLS, we felt the need to demonstrate just how many this condition has affected. We feel it is our duty to make sure that other women have the information they need about the risks of tubal ligation BEFORE they give their consent. Our only goal in twitterbombing is to spread the word about post tubal ligation syndrome. Please help us with our project by retweeting our tweets or creating one of your own using #WeDeserve2Know.
If you would like to help in any other way, please contact us through our education page by clicking here. We currently run all of our projects without funds. Through resources that have little to no cost we have already reached over 600 women in the last two months. We will continue to use the free resources available to us and hope that sometime in the future we will be able to raise funds to reach greater audiences. However, if you are one of our targets and would like to support our efforts financially, PLEASE use the message button on our Facebook education page, as widespread awareness on any grand scale is a highly unattainable goal without the funding of a very generous contributor.
Thank you very much for your time and effort.
Sincerely,
PTLS Awareness Administrators
PTLS - A PERSPECTIVE
Post Tubal Ligation Syndrome is a condition which affects
women of an unusually young premenopausal age, usually between the ages of
18-50, who have had a tubal ligation. The symptoms of PTLS are often
related to pain, emotional strain, and mental deficiency where previously
none existed. Some symptoms of PTLS can begin within days or a few months
after having a tubal ligation while other symptoms can develop as late as
ten years after a tubal ligation.
PTLS is known to exacerbate preexisting conditions, highlight previously unknown conditions, as well as create new symptoms. PTLS is often misdiagnosed as one or more of several similar conditions including: Depression, B12 Deficiency, Anxiety, Fibromyalgia, and Thyroid Hyper/Hypo Disorder. Menopause, which is the closest recognized condition to PTLS, shares many of the same symptoms but PTLS is thought to be a result of a rapid decline of estrogen/progesterone hormone levels caused by the blood supply being damaged to the ovaries during Tubal Ligation (just a theory however because many women that experienced several PTLS symptoms had normal hormone tests, yet a tubal reversal restored their health to previous levels of themselves equal to that of before Tubal Ligation, hormone levels were never verified to be found abnormal). The exact cause or medical theories thus far do not give full explanation as to why some women experience severe stabbing pain at time of ovulation, cystic ovaries, cystic tubes and symptoms more commonly associated with depression but are all very real symptoms none the less that many women struggle with for years, never knowing it all could possibly be related to having her tubes tied. Regret of a Tubal Ligation was once thought to be the reason women manifested these symptoms (a psychological side effect) but with the help of the internet so many women are speaking out and telling their stories. It's becoming more evident that these symptoms can manifest themselves in the absence of regret and are instead being learned about and named as PTLS only after researching their symptoms as a result of suffering.
Currently, because PTLS is not recognized in the medical community, you should first be tested for any other possible illness that are similar to PTLS. If you have already ruled out any other condition and you have not responded to alternative treatments, you may want to consider a tubal reversal surgery or a hysterectomy as both procedures are known to relieve the symptoms. Of the women who have experienced PTLS symptoms and could afford the surgery, a tubal reversal has been proven to cure 90% of those who suffer. A Hysterectomy has been proven to cure many of the symptoms as well but tends to leave patients drug dependent and hormone dependent indefinitely.
PTLS is known to exacerbate preexisting conditions, highlight previously unknown conditions, as well as create new symptoms. PTLS is often misdiagnosed as one or more of several similar conditions including: Depression, B12 Deficiency, Anxiety, Fibromyalgia, and Thyroid Hyper/Hypo Disorder. Menopause, which is the closest recognized condition to PTLS, shares many of the same symptoms but PTLS is thought to be a result of a rapid decline of estrogen/progesterone hormone levels caused by the blood supply being damaged to the ovaries during Tubal Ligation (just a theory however because many women that experienced several PTLS symptoms had normal hormone tests, yet a tubal reversal restored their health to previous levels of themselves equal to that of before Tubal Ligation, hormone levels were never verified to be found abnormal). The exact cause or medical theories thus far do not give full explanation as to why some women experience severe stabbing pain at time of ovulation, cystic ovaries, cystic tubes and symptoms more commonly associated with depression but are all very real symptoms none the less that many women struggle with for years, never knowing it all could possibly be related to having her tubes tied. Regret of a Tubal Ligation was once thought to be the reason women manifested these symptoms (a psychological side effect) but with the help of the internet so many women are speaking out and telling their stories. It's becoming more evident that these symptoms can manifest themselves in the absence of regret and are instead being learned about and named as PTLS only after researching their symptoms as a result of suffering.
Currently, because PTLS is not recognized in the medical community, you should first be tested for any other possible illness that are similar to PTLS. If you have already ruled out any other condition and you have not responded to alternative treatments, you may want to consider a tubal reversal surgery or a hysterectomy as both procedures are known to relieve the symptoms. Of the women who have experienced PTLS symptoms and could afford the surgery, a tubal reversal has been proven to cure 90% of those who suffer. A Hysterectomy has been proven to cure many of the symptoms as well but tends to leave patients drug dependent and hormone dependent indefinitely.
The actual cause or healthcare concepts thus far don't let complete description as to why some females encounter serious stabbing discomfort at time of ovulation.
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This is very unfortunate and true Jack, there are many theories and I've done my best to include as many studies as I and other women have found on the topic but at this time there are not definitive answers which is why we are working so hard to educate women that this a HUGE risk that Doctors are not informing women of even though there is more than enough evidence that it DOES happen to some women. When we consent to a Tubal Ligation we should have ALL of the information to what we are consenting to, not just what the Doctor wants us to know. This topic will soon be covered in an up coming medical publication by Dr. Gary Berger of Chapel Hill Tubal Reversal center. He is a world famous tubal reversal Dr. specializing in fertility and Reversing tubal ligations. He is actually retiring from surgery to focus his work on research and writing what he has found over his years of practicing reversal surgery. We are very excited to see what he has to tell the medical community on this subject because his clinic has done reversals for the relief of PTLS (mine included) with great success. His knowledge and findings could change the Healthcare concepts of the future! Thank you for your input Jack! What do you know about a Dr. Marc Kalan? I saw your post on another blog and was curious is that Dr. a believer of PTLS?
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ReplyDeleteIt is finally such a RELIEF to hear a name put to what i KNEW has been wrong this entire time! my tubal ligation was in 2009 and i have gained an unreal amount of weight that i cant get off and no matter what i do i cannot lose it, severe depression at times, heavy and painful periods, decreased libido! i am actively looking now for a doctor that will reverse this.
ReplyDeleteI am so glad you happened across my blog then! I encourage all women that are suffering to not just blog about their experiences but join our support group on facebook. It's so important to talk to other women that have been through this and made it out the other side with their life in tact! We have several inspirational women in our group with several different ways they have achieved their day of healing, their pain (usually from Filshie clips) were gone immediately upon waking from surgery. If you want to join my support group please do! https://www.facebook.com/groups/PTLSisREAL/
DeleteI had a tubal done years ago (right after the birth of my youngest) and over the years have been having more and more problems. I have not been myself for quite some time and a few years ago I was given medication for depression/anxiety which really didn't help all that much surprisingly. I am not severely depressed, just not the same as I was before. A little more cranky and sometimes when I get my period I just can't control my moodiness. I never got moody with my periods when I was younger. I get pain in one of my ovaries a few times a month and my periods are just painful and heavy. I was never told any of this could happen. I was told that there were very few risks and that I would get my period as normal. Made it sound like nothing would change.
ReplyDeleteHi Dawn, I know that was how my doctor made things sound too. Both before and after! No matter the tests I had ran or the pain I complained of none of the OBGYN team would admit it could be related to the tubal. It wasn't until a year after suffering that I started googling and found all of my symptoms. I'm so glad you found my blog and I hope you will also join my support group because you're not alone. Most of our stories read the same and yet we've never met. It's funny how doctors want to say that we make this stuff up or just believe it all because we read it off the internet but they don't have explanations for us when we're healed from all the suffering they said was never related in the first place! I've had the chance to "rub" it in a little to one of the previous doctors that was adamant none of my problems were caused from my tubal...he just said humph and went ahead typing notes on his computer as if what I said didn't really matter. Don't give up! There are so many doctors that will push you out the door with a prescription or what seems to be a solution at the time. I can tell you from ALL the women I have talked to that when PTLS is the cause for your problems then a reversal, tubal removal or a hysterectomy are the only ways that women have lifted the PTLS fog and found their former selves. Not everything is reversible and not everything comes on all at once, as you have seen. Every woman is different and much research should be spent into what is right for you on healing. Many prayers your way and here is a link to our educational page I've started that contains all things on the topic of sterilization and PTLS. https://www.facebook.com/pages/PTLS-Post-Tubal-Ligation-Syndrome-Education-Advocacy/445721195527142
DeleteHi,
ReplyDeleteI really appreciate your website. I was glad to see that you had found publications that we can share with our doctors, as I think many are conditioned to listen to science rather than "emotional" patients.
I actually sympathize with doctors-in-denial (to a small extent), even though they are on the wrong side of this particular issue, as I see it. I think they want to see themselves as "the good guys," helping women control their reproduction.
At any rate, I have been fortunate not to have all of the side effects. I have had, though, major hair loss, which started within 2 months of my surgery. Even with the temporal connection I did not think to blame the TL until months later, when I began experiencing night sweats and heart palpitations. I felt I was too young to be transitioning to menopause, and so I started thinking more openly about ways I might have "messed with" my body's system. Of course I found, within minutes on online looking, many websites about PTLS. I can't help but kick myself for being so nonchalant about surgery for goodness' sake. I wanted to be "in control" of my reproduction, but I didn't want to act like someone in control, and read in advance. Yes, I've also been mad at my doctor, because I feel it is his job to stay informed for me, and to be on my side as far as outcomes are concerned.
At any rate, I want a reversal, just because I want to reverse all this junk that's happened. I'm not sure how realistic I'm being.
For instance, has anyone out there had a significant amount of her hair grow back? If so, will you please, please write about it?
I know this is vain. I haven't lost a leg. I just don't feel attractive and I find myself having no interest in dressing up or trying to look nice, because I feel like, "what's the point?" Many women have been what I've been through and pulled it together enough to function, but...I would love to get off this hair loss train if possible, and put it behind me!
Thank you for reading :)
Thank you so much for your kind comments. I along with others have worked hard to find those articles. It's amazing what has been covered up over the years and I hope to someday bring it to the surface. Doctor's truly do follow what they see not what they hear from their patients.
DeleteAs for what you are going through, THERE IS HOPE! I too had a lot of hair loss in the temporal region (as well as my eyebrows and lashes). I completely understand what you are feeling right now, it's hard to feel pretty when so much of what makes us a woman keeps disappearing. Many women have tried different things with different successes so it's difficult to speculate on one particular thing that will work for you, my best advice is to join my support group(s) and look through the files/photos at what others have tried and see if any of them appear to be something you and your doctor could agree on (most are over the counter, or home remedies but for safety reasons you should always check with your doctor if you are going to try new supplements or herbs as they could interfere with your current health conditions or prescription medications). After I had my reversal? It all went back to normal (yes, hard to believe and I wouldn't of believed it myself until I started seeing "horns" growing back in the temporal region!!). I'm NOT the only one to report this either. ALL of the women in my support group (whether they have had a hysterectomy, reversal or salpingectomy (tubal removal) have all started showing improvements in ALL of their PTLS symptoms. Pain and menstrual disturbances are usually the first signs of improving. I'm not the only one to mention that their stabbing pains were gone when they woke up from surgery. (surgical pain is there, yes but the PTLS stabbing pains go away immediately with ALL of the above surgical options).
I too was nonchalant about my tubal. I'll admit it. I wanted it and never planned on changing my mind. I had never heard of anyone having issues (in my daily living) and therefore when I asked the nurse that was to inform me of all the risks if there were any major complications or long term effects I should know about, I believed her when she said "No. There are far greater risks involved with your c section than the tubal ligation itself"...those words changed my life and have gone on to touch others because I've become an educator myself. Instead of letting the rage overtake me on what I lost out on I've channeled my aggression into helping others. Making a difference and knowing that in the end, even though I had to eat my words of "never changing my mind" when it came to getting my tubes reversed, I know I did it for my health and for my children to have their mother back. You are STILL IN CONTROL of your reproduction. I do hope that the information I've provided here will help you to make a decision on what road you want to take to "fix" your PTLS because doctors DO know about this condition, it's just that MOST are not willing to admit it's real. That's where each of us play our part in changing the future for our daughters and those to come ;) Don't just accept that it's your new way of life. Take the control you thought you were taking before, RESEARCH your road to healing and then walk it. Hopefully when you end up "on the other side" with your blessed life restored (including your hair :) you will be up for the challenge of doing what I have chosen to do...blog to change the lives of others. Heck, do it now...there's no better time than the present than to start telling the world what you are going through because women suffering do not just need blogs like mine as hope, they need to also know they are not alone. They need those horror stories to see they're not crazy, it's not in their head and they've been right all along. Best of luck to you and I hope to see you on the support boards ;)
Thanks so much for taking time to write, and to encourage. It helps when someone else has forged a path and can give navigational help :)
DeleteI had a scalp biopsy today to learn more about the state of the follicles on the top of my head. My loss is from all over, I think, but it is easiest to see on top.
My ObGyn was very skeptical of my self-diagnosis at first, but he recently gave me the sense that he was starting to believe in the link. My (new) dermatologist certainly found the link between TL and hair loss logical.
I have the procedure to be done in August. But, now I'm worried. I definitely have more than enough going on in my life without adding complications from this!! Especially depression/anxiety, hair loss?! No, no ,no. But I do wonder if the tubal removal is different. Does anyone know? (I'm not sure if I trust my dr to give me the right answer!)
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