The Victim or The Advocate

I'm approaching the two year mark since I stumbled down the rabbit hole into the bizarre world of post sterilization struggles. So of course, this has me thinking a lot about the physical experience, the mental and emotional experience, and the large amount of people I have met as I've traveled down this "path".

When the lightbulb initially turns on for us and we realize what's been happening in our bodies after sterilization, the "discovery phase", there's a lot of emotions to chew on. Personally, I felt a lot of anger toward myself for having made such a huge decision without a single bit of personal research beforehand (very uncharacteristic of me). Some women feel angry with spouses or family members who pressured them or led them to feel obligated into the procedure. Some feel angry with their doctors for various reasons. And once you connect with other women experiencing similar things, you are met with a sense of relief that comes simply from knowing you're not alone. These things are normal. And then you begin connecting with these women, asking questions, and searching high and low for a solution to attempt to feel like yourself again.

But what happens if you aren't able to find a solution? Or what happens if you do find one and you begin to recover?

I watch a lot of women come and go in the online support groups. It's fine, they are there when they need encouragement from the rest of us, this is our main purpose in these groups. But if we remain in this mode, simply sifting through information to figure out if reversal or tube removal or hysterectomy is best for our personal situation, only connecting when we're feeling weary, we're camping out in victim mode. We are all victims of partially or completely uninformed consent, and it's hard to shake the feelings that come with that.

Not very long after I figured out I was experiencing post tubal ligation syndrome, I changed my direction. I was fuming at myself internally at first. But then I thought about the larger scale. That's when I started to get mad not at me, not for me, but at the fact that this has been going on for so long with so many women and the best study any doctor can cite to me to "disprove" our experiences is from 1978. I felt a fire in me that made me want to start talking, despite the embarrassment it may cause some. And I've been talking about it for almost 2 years, to anyone who will listen, despite occasionally being met with heavy skepticism.

I had my reversal 8 weeks ago, I am feeling incredible physically, but I am still on fire. I am still talking. I am still researching, watching, supporting. I am not only a victim. I'm an advocate. I am on a mission to inform women of the actual risks, to hold the hands of those who weren't informed, and to keep pushing for a change. Until our doctors are willing and able to give full information prior to consent, it's our job. It's yours, its mine. We are the current line of defense, as small as we may be.

When I first opened up on my personal facebook about what was going on with me after sterilization, I received a couple private messages from female friends I'd known for a few years. Both telling me their painful experiences with sterilization, and how they had thought about warning me, but figured I'd be okay, and how they felt guilty now knowing I wasn't. I didn't and still don't hold it against them at all. But this is why I am an advocate. I will come to your door and knock until you open and I will tell you what I know so that you can make your decision knowing the possible side effects, because that is all I hope for. Not for it to be illegal, not for women everywhere to not have the option, but to "know before you go" so to speak. That is my heart in all of this.

So if you're reading this, I challenge you to take a little introspective time and decide what you want to be. Are you a victim of partially informed consent, or are you an advocate for health?

My Experience with Tubal Reversal and the Impact on Post Tubal LigationSyndrome Symptoms

I woke up at 4 AM on March 23rd, well before my alarm. Butterflies in my stomach. Everyone still sound asleep. Checked and rechecked my bags. I went through the motions of heading to the airport without much thought; my husband drove and I babbled the whole hour about anything and everything. It wasn't til he had to leave me at the security check line and head back home that it really hit me that I was on my way. Surgery was finally coming, after feeling like it was eternally months away. 

I flew to Los Angeles from Portland. Then to Dallas, and from there to a small airport in McAllen, Texas. I flowed through each connection with minimal anxiety. There was a peace over everything, and it felt like I was going exactly where I was meant to.  

My reversal was performed the next day, March 24th 2015. It felt like a whirlwind. Multiple doctors, nurses, swirling about and working in synchronized fluidity. Their voices calm, their words kind, and their determination evident after finding things a little worse off in there than my operative reports let on. 

I'm about 5 weeks post surgery now, if my math is correct but admittedly, numbers aren't my strong suit. 

I will go ahead and put this out there before I articulate my personal experience with tubal reversal as a remedy for PTLS; not every woman will find relief through reversal. There are so many variables at play that there's no knowing 100% if it's the answer for you or not. It's very much a gamble, one you need to weigh for yourself. For me, this made the most sense to try before the other more drastic options and we were willing to spend the money even knowing it may not change anything. 

At 5 weeks (and one cycle already), these are the symptoms I am officially able to say are gone for me:

Unexpected tears and mood swings

Night sweats

Abnormal periods, longer cycles,  heavier periods. 

Pelvic pain (This has been a huge deal for me. 20 months of daily pelvic pressure and pain were gone overnight.)

Bleeding after intercourse

Severe ovulation pain

Increased bleeding in gums

Loss of balance, light-headedness, and dizziness

Hair loss and thinning in head (there are baby hairs along the front of my hairline where the lost hair is regrowing, I couldn't believe it when I noticed it two weeks ago)

Unexpected attacks of bloat

Tenderness of breast (this was a daily thing after tubal ligation, stopped happening about 9 days after reversal)

Sore joints, aching, tendons and muscles

Mental confusion, lack of concentration, feeling "in a fog". 

Abnormally high anxiety 

I do not believe this is all coincidence. These things that impacted my daily life for close to two years dissipating within weeks of reversal leads me to feel even more strongly that we need to push for true informed consent for women considering sterilization. My quality of living suffered greatly. I can't get back those 20 months. Women who live with it way longer than that cannot reclaim that time either. When we have doctors telling people that Post Vasectomy Pain Syndrome is "a thing" and exists and that they'll treat it for them, and turn around to tell women that there's absolutely no chance sterilization can hurt a woman, there is a serious damn problem. 

I'm not done with this issue. I'm still on fire over it. I'm still holding the hands of the women I've met still stuck in it. I'm still talking loud and spreading the word every way I can manage. I'm healing physically, but I will never be the same. 

This one's for the guys.

My husband approached me a few nights ago, asking if he could contribute his thoughts on PTLS to my blog. I figured it'd be a decent opportunity, to get a man's written perspective on what he's seen from the sidelines, because it seems many women have a significant other struggling to believe there's a problem at all.

I won't tie this post up with my babble much more. This is from my husband, Michael. Ladies, please share with the man in your life. Whether he doesn't believe you, or is pushing you to have this done but haven't yet, or whatever. Let's call these guys to stand up and be real men in the face of this issue.





[I don't have ovaries.

Icebreaker I know. I have no idea how it feels to be a woman. I've learned a lot through listening to my wife, and sometimes not listening and her pointing it out. I don't know how it feels to have your period, raging cramps and all the lovely thing that come with that.

I've know my wife for nearly 10 years. Her periods were mild, mood swings occasionally, some bleeding. "Mild" is the best word to describe it all. I know her and I trust that she knows her body. The confidence she got after educating herself and having 4 children, the last at home with no meds, she knew her body and how it worked, and she had a high pain threshold.

We went through a very hard year when our daughter Maddy was conceived, and Emily decided she wanted to get a tubal-ligation. I wasn't keen on the idea, it just didn't sit right with me. The way things were after having 4 kids and the worst year of our lives, I knew I couldn't "stop her" if I tried, but I let her know she didn't have to. She felt external pressure that this was the answer. Even her doctor was hesitant that at 23, she was getting sterilized.

Even while in the 3rd trimester Emily had energy, could somehow keep up with the kids despite the stress of not having our own home at the time, and she was not in constant and sometimes crippling pain. She was able to go all day, despite everything life had thrown at her.

After a dramatic few weeks in the hospital for preterm labor, our beautiful bundle of joy, Madelyn  was born by Cesarean and the doctor tied Emily's tubes before sewing her up. 6 weeks or so after she started having horrible pain. After going through pregnancy, birth and delivery 4 times before we both expected her to bounce back and keep going with life. But as time went on she didn't.

I hate watching her suffer in pain I can't do anything about. I do what I can to help make her comfortable, but pain-wise nothing helps. Seems like every month we find a new health problem that's cropped up that comes with estrogen dominance, a condition she "just happened" to get after the tubal. A doctor even suggested that my now 25 year-old wife is just "getting older." Even going through tests for cancer, there was a slight hope that maybe something'd turn up that was treatable. There seems to be an educated blindness when it comes to even the possibility that messing with your reproductive system, the hub of hormone control, might affect your body. Apparently my wife is not the only woman this has affected, which is part of why I'm writing this.


Husbands, this woman is your wife. Can you trust her that she knows her own body? Trust her that when she says she's in pain, it's real. If having no more children is imperative, then why are you not willing to sterilize yourself? It's a much cheaper and easier procedure. Whatever reservations you feel against getting snipped yourself, is she not allowed to feel them for herself as well? If you want to be a man and lead, if you absolutely do not want anymore children, then why not lead and get snipped yourself?

Not trying to sound conspiratorial, but the doctors are financially incentivized to sterilize women, and over time scalding, and eventually removing the uterus. Lots of money for them, lots of pain for her. Honestly these doctors do not "care" about your wives, not like you do. They may be willingly ignorant, or straight up unfeeling jackasses that only care about money. For whatever reason, the medical industry ignores the growing amount of women with these problems. It's your job to protect her. Not pressure her into having someone slowly carve away her reproductive organs like she's a piece of meat.

I hear more and more stories of men pressuring their wives to get the surgery, then leaving them after they do. I only say men because I don't know what else to call them. Don't be that guy. Help your wife with what you may have asked her to do. She needs you on her side, because most of these doctors aren't.

Signed, A Husband Who Wished He Could Have Done More.]

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!

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 

                or

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

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.

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:

✳Dizziness
✳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
✳irritability
✳painful intercourse
✳insomnia
✳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.