Tuesday, August 12, 2014

New Submission

"Hi my name is Aubrey. I had my tubes tied 2 1/2 years ago after my 5th child at the age of 24. The first year I didn't have many side effects other than some depression. The last year my period has been all over the place. I have actually bled for the last 2 months straight. I have been extremely tired where some days I can't get out of bed. I sleep all day and all night. Although some of my symptoms could be attributed to the death of one of my kids back in 2010. I do believe that the tubal has caused many issues. I am now suffering from major anxiety that has worsened with my continuious bleeding. I have contemplated suicide because of the bleeding and cramps. I know that sounds extreme but I get extremely emotional and crazy. I feel like I'm stuck like this. The tubal was a very wrong choice that I now have to live with. No I do not want another child and that is not the reason I regret the surgery."

One of the most common things I have heard to combat the idea that there is actual physical side effects from tubal ligation is "the woman probably realized she wasn't done and regrets it but doesn't want to admit that". I cannot tell you how many women hesitate to try reversal to correct the symptoms as they fear conceiving if they do so. It needs to be understood that while some women carry regret in regards to fertility/growing their family along with the physical symptoms, this is simply not the case for every woman going through PTLS. Many decide to pursue complete tube removal (Bilateral Salpingectomy) or partial/radical hysterectomy to find relief, because it gives them a possible fix without restoring the fertility they were trying to eliminate by seeking tubal ligation in the first place. Women with Filshie clips or other foreign objects used in their sterilization method sometimes find relief simply from having the objects removed, not having the tubes themselves repaired. In these cases, many times the symptoms have been a reaction to the materials the clips/rings are made of, and in some cases x-rays show the clips traveling off of the Fallopian tubes and into less desired areas in the abdomen, causing damage to surrounding organs. 

Simply put, each case is individualized, and each woman has to research and work with her care provider to figure out what will work best for her personal set of symptoms.

Please take some time to submit your experience to tubal.lie.gation@gmail.com, I am always taking submissions. Thank you!

Thursday, July 31, 2014

New Submission

Today's submission is from Jen K.

My name is Jen and this is my story of how a tubal changed my life for the worst. 

    I was 25, on my 3rd child. The doctor and I have talked about what kinda of birth control methods there are.
We talked about the pill, the shot, the implant, the patch anything you can think of we talked about. 
I told him how painful my periods are, and he told me the best bet would getting my tubes tied. 
So I decided that I would go with the tubal. The doctor told me it would make my periods less painful.

   One of the only other reasons I got it done was because when I found out I was pregnant with my youngest daughter that it would there would be a 85-90% chance of my not making it though the birth of my child. My husband and I did talk about terminating the pregnancy because I already had 2 healthy children. The thought of never being able to see this child growing inside me, made our choice simple. We decided to keep the child and pray that I would make it. Obviously I did make it.

   After I had Ella-Ann, I was being prepped to have my tubes tied. I didn't want the risk of having another early child or have the risk of losing my own life.  As I was being prepared to have it done and had the worst panic attack of my life. Then I don't remember anything till I woke up in the recovery room. 

   Fast forward to November 2006. That is when all the issues started. This was the first month after I got my tubal done that my period came. I woke up at 3:15am with excruciating pain. It felt as it felt as if someone was stabbing me in my uterus. I couldn't move. I was paralyzed in pain. My husband was scared shitless (sorry for the language) he has no idea what was going on. Nor did I. Because I was told that my periods would be less painful. After what seemed like a lifetime the pain started to go away. Oh sweet relief. I was able to get up out of bed and move around. After a few hours the pain came back. It dropped me to my knees. I felt like I was dying. 

  This has been going on for the last 8 years. The pain and torment still continue and all the doctors do is drug me up om]n pain meds and have not listened tp a word I have said. And now the pain meds I am on are starting not to work/ 

   Early March 2014: I have a friend take me to the urgent care because she was worried about my health. The doctor that was working did the same thing and dope me up on pain meds, but also refereed me to an ob. 
   Mid March 2014: I got and see Doctor Goldsworthy. Thinking to myself "What is the point of even seeing another doctor if they are going to do the same thing like all the other doctors did) but she actually listened to me. 

   May 16th 2014: I have to do 3 months of hormone therapy. I chose to do the nexplanon. I was hoping and praying that it would work. First month came. Worse month ever!!! I bleed for 3 weeks and cramped for 2. Same with the 2nd and 3rd month. 

    June 30th: I get it removed from my arm. 

   July 28th: Preop appointment with my doctor. YAY!!!!! 

  August 8th (5 days before my 32nd birthday): Surgery to see what is going on with me. Why my periods are so painful and to see what they can do to help me. 

   They gave me 2 choices really, neither of which I want to do.

1. Partial hysterectomy 
2. Total hysterectomy 

        My choice if it was up to me would be a tubal reversal. Too bad insurance wont cover it and it costs way to much for me. I wish I could be like the dude that just wanted money for potato salad guy and raise over 70,000$.

My warning to those that want or are thinking about getting it done is NOT to do it. 
It was the worst choice I have ever mad in my life."

Thank you so much for taking the time to write out your experiences, Jen.

I am always taking submissions, so if you're reading and have your own story to submit please send them to tubal.lie.gation@gmail.com

Tuesday, July 29, 2014

A Personal Update; Conception after tubal ligation.

In any other situation, I probably wouldn't share this experience. I'd talk about it with my close friends, my husband, my family, but not be as open about it as I've managed to be in the last week. But I feel like if I cannot lay out my experience in full disclosure, I'm not doing everything I can to push toward true informed consent prior to tubal ligation.

I was diagnosed with a blighted ovum around a week ago. If you haven't heard this term before, the basics of it are that an egg was fertilized, made it into the proper place (uterus) by some miracle and implanted, but failed to develop past this. There was a gestational sac measuring roughly 7 weeks, low hCG hormone but no signs of life. They cannot tell me if this will happen again or not. I was originally told the failure rate was 2-10 women out of 1000. After the procedure, I am told 1 in 300. Then later, I am told its even higher for women like myself who had it during a c-section. And while being diagnosed with this blighted ovum I am told the failure rates vary from study to study, and that it "isn't as rare as I'd think". She scheduled a second ultrasound to either a.) confirm diagnosis or b.) ensure my body has cleared things out all the way on its own. Without much detail I will say it'll be option b tomorrow.

So here I am. I can now safely say that tubal ligation has failed me in just about every way it can so far, only one year out. Now my care provider fears a future ectopic, and I can't say this doesn't concern me. We were both shocked that we weren't dealing with that this time. Neither of us were optimistic upon my arrival. I am thankful. It could have been worse.

I am asked several questions lately and feel it easiest to address them here.

Why doesn't my doctor offer to put me on birth control pills to attempt to relieve certain symptoms or prevent another event like this? Part of why I (and numerous other women) had this procedure done is because medically, its contraindicated to have me on these pills. I'm a high risk for blood clot and stroke based on my history. So, it is because she's a good doctor that this option isn't offered to me.

Why will they not offer a hysterectomy? There's a few reasons here. The main one being that it wouldn't fix the most pressing issue, which is the daily ovarian pain. Unless they removed the ovaries as well, which isn't optimal. Another large reason, to doctors and myself, is my age. I'm not even 25 yet. And my own reasoning is I simply don't want that. Why is hysterectomy now viewed as some 100% normal and natural event in the life of women? It's a big choice. Typically done as a matter of saving their life. I've been checked, its not cancer, its not endometriosis, my uterus isn't the issue and I don't feel as if throwing my body into another whirlwind of hormonal imbalances is the solution to my specific set of issues. This is NOT to say it isn't a helpful solution for some women dealing with PTLS. But it is so dependent on what your symptoms are.

Still counting down until surgery. Still plugging away to show the ugly side of our "neat and tidy" sterilizations. Please continue submitting your stories to tubal.lie.gation@gmail.com . I have several in the queue at the moment that I will work on posting over the next week or so.

Tuesday, July 22, 2014

New Submission

"Name or initials: 
Brittney P.

Current age:
22 years old

Year of tubal ligation procedure:
2013 (21 years old)

Your most prominent symptoms that were not present prior to tubal ligation:
✳Nausea upon waking
✳Extreme fatigue
✳shorter menstrual cycles/ irregular cycles
✳debilitating pain over ovaries (has never gone away)
✳loss of libido
✳uterine prolapse
✳achy joints
✳achy muscles/ muscle weakness
✳hot flashes
✳painful intercourse
✳mood swings

My name is Brittney, I am 22 years old and I have a 3 year old daughter and a 1 year old daughter. I signed my life away when I was pregnant with my last child in 2013. My husband and I were sure we were done having children. I can't do hormones and due to allergies can't use much else, seemed like a simple enough procedure to me. After a complication free vaginal birth, I inquired about my tubal ligation and they told me someone had misplaced my paperwork, so I'd have to sign a new one and come back in 5 weeks. On June 28, 2013 at 2:00 pm I was wheeled into the operating room. At 8:00 pm, I was finally able to leave. Recovery was hard on me, the gas in my abdomen was incredibly painful. The pains started immediately, it was right over my left ovary. After recovery, I saw the doctor who did my surgery about the pain. "Pain is normal" was her response. Overall, I saw 8 doctors in a year about the pain after random symptoms started popping up. I didn't have a low milk supply, I had plenty for my baby. Finally I was diagnosed with Post Tubal Ligation Syndrome, ovarian cysts, Irritable bowel syndrome, blood clots in my fallopian tubes, calcification of the bowel wall, adenomyosis, possible endometriosis, and possible uterine prolapse. This doctor wanted me to go with a hysterectomy, saying that is the only way to get rid of the pain. Well, I'm only 22 years old, so that isn't going to happen. I'm currently in the process of getting either the Filshie Clips removed or a full reversal."

Thank you so much for sharing your story, Brittney. Wishing you the best of luck on your journey to either clip removal or reversal!

I have a couple of other submissions I will post over the next couple of days. Please keep them coming, your voice matters. 

Monday, July 21, 2014

Two Submissions

I have two email submissions to share today. I will post as much information as I am given! When you write to me, be as detailed as you want to be.

Our first submission is Sara J.

"My name is Sara. I am 35 and had my tubal ligation Dec 2012 after leaving an abusive relationship. since my surgery my periods have been MUCH heavier and much more painful, to the point of throwing up! Recently, I've had these strange, intense pains on my right side near my ovary  that radiates around to my back. They have been so painful that I have to lay on the floor and breathe! :-( I'm trying to save up for a reversal now but it's expensive. Glad to hear I am not alone."

As Sara mentions in her submission, reversal surgery is costly. Many women are feeling the pinch of this. There used to be multiple sites to help with saving up funds for this purpose, but most have shut down or require pastoral references which not everyone has the ability or will to obtain. One option is www.tubalreversalangels.com

Our second submission is from Aimee C.

"Name: Aimee Cowart

Age: 23

Year of tubal ligation procedure: had my tubes clamped in 2013

Your most prominent symptoms that were not present prior to tubal ligation: constant fatigue, extremely heavy periods lasting over a week, having a hard time losing any weight, very bad ovulation pains"

As women suffering from PTLS, hearing from other women suffering is a bittersweet situation. On one hand, it's nice to know you're not alone. On the other, its sad that so many of us are going through this.

Those of you reading and on Facebook, please search Post Tubal Ligation Syndrome or PTLS in the search bar. You will find multiple groups pop up, most require you to request to join, and there you can connect with tons of women who are either currently dealing with PTLS or have had their symptoms corrected through whatever procedure fit their situation and are still advocating.

Please, keep submitting!

If you want to get people talking and thinking of PTLS in person, consider getting one of our shirts:

Sunday, April 20, 2014

Here we go.

My name is Emily. I'm 24 years old, and a mother to 5 children under 6 years old. My husband works and I am a stay-at-home-mom. 

In the summer of 2013, my fifth and final child was brought into the world by emergency cesarean section at 34 weeks gestation due to preterm labor and breech positioning. I had signed a consent form to undergo a tubal ligation with my primary prenatal care provider weeks prior, and signed a new one that day on account of I had to have my care transferred to a hospital equipped for a preemie. So, I literally signed off on having this procedure done two times. I felt very sure. I was exhausted, I was stressed, I was spent, and what I knew of the procedure was that it was a simple and easy method of avoiding pregnancy that wouldn't riddle me with frustrating side effects like every temporary method I'd tried had in the past. 

My primary prenatal care doctor asked me during at least four visits if I felt sure. I laughed every time, reminded her that I was on my 5th kid in 5 years, and she would rattle off the statistics of regret in women as young as myself who undergo tubal ligation. I wasn't going to be shaken by regret. I wasn't at all. It didn't deter me in the slightest. 

Around the 1 month postpartum mark, my cycle returned. Things were "off", it was heavy, but I didn't think anything of it since it was my first period. I was also distracted with trying to produce enough milk for my baby, as I was struggling harder this time than ever before. Pumping constantly and being on domperidone and every supplement known to woman, I was barely lactating. It was causing me a lot of frustration. I would later find I was not alone in this struggle after having a tubal ligation. 

My husband has been by my side but helpless as my body has begun to shift over time from that of a healthy 24 year old woman to a pained and worn out woman who feels much older and more dilapidated than 24. Daily ovarian pain that impacts my day to day quality of life, congestion in the remaining blood vessel to each ovary detected by ultrasound, dysfunctional mid cycle uterine bleeds, more exaggerated postpartum hair loss than during previous postpartum experiences, menstrual cycles that knock me off my feet, sudden weight struggles, crushing constant fatigue somehow magically coupled with intense insomnia. And since it's always asked, I will go ahead and specify; These are all things I was not experiencing prior to tubal ligation. These are not things that are normal for any woman, let alone a woman as young as myself.

Months of various exams, procedures, blood tests, biopsies and everything the OBGYN can think of have shown no other cause. I came to the end of the road with my doctor, and am now left to figure out what to do on my own. He does not acknowledge the idea that any of this can be caused by a tubal ligation. He says, "it could simply be aging". I point out to him I'm only freshly 24. He had nothing more to say. 

I've connected with women through a few different places who have shown me I'm not alone. They experience the same symptoms as me, and some of them are even worse. And very rarely do their care providers acknowledge what seems too strong of a link to simply be coincidental. 

If I had looked online before I agreed to the procedure, I likely would have easily found information, though very scattered, that may have impacted my decision. Instead, I verbally confirmed continually, and signed off on it twice. I was never told there was a possibility of side effects... because these doctors don't believe they exist.

My goal for this blog is to collect our stories. I want to create a central hub for those of us going through what is now labeled Post Tubal Ligation Syndrome (PTLS) to share our experiences, to speak up and be the collective red flag for women considering this option of contraception. 

My disclaimers to anyone reading are this:
-We are not doctors, and don't claim to be. We are women, living in our bodies and experiencing distinct issues after a very common sterilization procedure. We are here telling you OUR experiences. 

-Not every woman with PTLS will exhibit the same symptoms, and not every woman who gets her tubes tied will develop PTLS. It's the same as any other birth control method, there are risks, but typically a doctor will not tell you these risks beforehand, and the cost to fix these issues is immense. It's not as simple as stopping the pill or having the IUD removed. 

If you have a story, please email it to me. I want to make this idea I have work, but I cannot do it without you. Send your story to me at tubal.lie.gation@gmail.com, and please include this questionnaire in your email:

Name or initials: 

Current age:

Year of tubal ligation procedure:

Your most prominent symptoms that were not present prior to tubal ligation:

Your help with this blog is appreciated, and together we can make a difference in women who don't fully realize what they're signing off on.