Post Tubal Ligation Sydrome :: My Story

This is a different kind of post than I have ever shared here on A Bit of Sunshine but I am feeling very compelled to open up about some hidden suffering I’ve had over the past three years because I feel so strongly that if even one women is helped through my story than it is worth it to share. Here it goes. (if you are looking for Ten on Ten scroll to the post below or click HERE)

My eyes are full of tears as I begin this post. Our fertility and hormones, it’s such an intimate topic, those things that us women deal with from month to month to month for most of our lives. I have been so blessed with four gorgeous babies after being told time and time again that I should never have been able to conceive, let alone carry any children, and I’ve spoken to many women with a similar uterine abnormality as mine who have not been as lucky as I have been in that regard. For this I am so grateful.

This part of my story, however, is not about my fertility or childbearing but rather what has happened to me since the birth of my fourth son, Zeb after an emergency c-section (at 35 weeks gestation). I had been on hospital bed rest for several weeks prior to his birth. Many of you super faithful and dear to me readers will remember that crazy season - getting pregnant unexpectedly with number four after our life took the craziest turn and we found ourselves losing almost everything and moving with young children including a still small ten month old baby.

That time was crazy for me and I am sure you all could understand and empathize with that. We hadn’t planned on a fourth child and given my history of unicornuate uterus and high risk for uterine rupture as well as premature births, undergoing yet another cesarian section, my fourth within five years was super terrifying. 

My pregnancy with Zeb was actually really normal despite being tested dozen and dozens of times. At 33 weeks my doctor did an ultrasound and couldn’t see the lining of my uterus clearly and worried that because my uterus is basically shaped weird and only half of it works “normally” she put me on bed rest in the hospital as a precaution and in one fell swoop I was not allowed to even go home for a bag of clothes and a final kiss to my little ones. Everyone was incredibly supportive and jumped in to help and I did my best to patiently wait for our fourth child to arrive and prayed to the Lord it would all be healthy. 

It was at this time in the hospital that Tubal Ligation was presented to me as a requirement. Doctor’s came in, I kid you not, one or two times a day with a waiver and begged me to go through with it because no one wanted to see me pregnant again - after all we were all fearing for my life and the baby in my womb on the off chance that my uterus would rupture before the time of delivery. We hadn’t planned to have four children so of course I listened to the doctors and signed my life away, a decision I have cried over more than any other decision I have ever made in my life.

The night Zeb was born was crazy, they had planned to do the cesarian on the 4th of May 2012 but the night of the 3rd the doctor came in (I think she was looking for something to do, personally) and immediately looked at me and said, “We are not waiting we are getting this baby out tonight.” It was so frustrating because Chris was wrapping up at work, my Mother in Law had my other three’s schedules all worked out...but whatever, no matter how much I begged the doctor just said, no we are doing this tonight. 

The surgery was so routine. This was my fourth c-section and I made sure to be as alert and present as possible I didn’t want to miss anything. They had two surgeons in the room as well as NICU team and tons of my blood on hand (they had been collecting it from me daily for weeks). But the c-section part was really routine. Zeb was born - I heard him cry and found out that he was indeed a boy. 5lbs 10ounces, my tiniest baby with the sweetest cry. They examined my uterus as they always did but this time I could tell all the fuss was kind of for nothing because although my uterus was super thin, I had made it through, my amazing body had yet again defied the odds and carried a gorgeous, healthy baby and I was so proud and happy. I wept the happiest tears for my baby boy! 

Then all at once I felt something really painful - I snapped back into reality and literally hollered out - OUCH - what are you doing, I am feeling that? 

The surgeon said to me that she was doing the Tubal Ligation that I had agreed too and that my spinal block might have been too low to numb that area but it wouldn’t take too long. She showed my husband (proudly) that she had tied, cauterized and cut my fallopian tubes and excised a small portion of each one so no worries for us there would be no more babies. 

That night I was in the most writhing pain I have ever experienced in my life. The doctors and nurses just kept explaining that four c-sections is hard on the body and I would likely be in more pain. OK you guys - I get that for sure, but also I had already had three sections prior to this one and was always able to get out of bed and move around within a few hours. Yes painful but yes manageable - NOTHING LIKE THIS. I sobbed, and sobbed and yelled at Chris. I didn’t want to nurse Zeb I didn’t want to see anyone, I was in so much pain it was insane. I chalked it up to the extreme fatigue of living in a hospital bed and not sleeping for close to two weeks before the birth. But the day after Zeb was born I would not allow one visitor - I was literally in too much pain. 

A few days later when we brought Zeb home my raging mood was also new and totally crazy. I screamed at my husband (this is really embarrassing to admit) for the entire ride home, with four kids five and under buckled up in the backseat. I crawled up to my bed and remember laying there and sobbing for seven hours straight. My best friend got engaged on the same day and called to tell me about it and I had to pull out my big girl pants and squeal with joy (I was SO happy for her) but honestly I was not happy, I was sobbing and miserable and in so much pain and had four children waiting for Mommy to be Mommy. 

The recovery after Zeb was rough, shortly after the surgery the constant headaches started. I have always struggled with migraines related to food allergies but these headaches are much worse and much more frequent and not all controlled by my diet or any sort of supplements I take. I started popping Ibuprofen every four to six hours. I also started dealing with depression - really bad, but that could be totally expected given the circumstances right? I took Zoloft too. 

I stared having crazy night sweats, hot flashes, cold flashes, insomnia, severe lymph pain under my arms and the stabbing pain in my lower abdomen pretty much immediately and constantly, it was not getting better each day as it had with the first three births. My period returned six weeks after having a five week preemie and was heavier than anything I had ever experienced, and when I went to my six week post op I mentioned it all to the nurse as she was checking me in and questioned her about my Tubal Ligation having something to do with it. She leaned in and told me that she had hers tied and no one warned her beforehand what it could do to your body, she had never been the same.

What.the.hell.

My doctor came in and I immediately question her, she totally brushed me off and said that the stabbing pain and headaches and heavy bleeding was nothing to worry about. Afteralll I had had my fourth c-section, of course you’re going to have more scar tissue and pain, you aren’t sleeping, headaches and depression are par for the course and there are no side affects from Tubal Ligation...she than went on to tell me (before examining me) that there is no way my period had started already it was probably just still after birth bleeding. After examining me and blood ran all over the floor she admitted she was mistaken and that I had indeed started my period again. Oddly I felt stupid for knowing my body better than she did. But I did.

Make.it.stop

So that was all about three years ago - since that time you would think that most of these symptoms would have cleared up and I would have bounced back to a pretty normal, albeit wild and full, life but I am here to share that they have not gotten better and that most of them have gotten worse. 

For the past three years I have had constant debilitating headaches nearly every day, I have regular, severe stabbing pain in my abdomen. This pain increases during ovulation and my menstral cycle to an intensity that often leaves me writhing in pain in bed. I have a nagging pain on my left side and back that I have presented to doctor after doctor, but no one seems to be able to help. My periods are very heavy, clotting and multiple days throughout my cycle I get up in the night and have to change clothes because of the bleeding. The depression has increased in severity and the mood swings and PMS are other worldly. I have also suffered from severe thoughts of suicide, something that I really hadn’t experienced as much with depression before the TL but sometimes as much as 30 times a day I have horrible thoughts of suicide and anxiety. The hot flashes and insomnia have increased. I’ve not been able to lose twenty plus pounds of “baby weight” that I never struggled to lose the other three times. And these are just the tip of the iceberg. I often feel like I am actually dying. I don’t want to hang out with friends, I’m miserable. I have crushing fatigue and often go to bed right after the kids but never sleep well. 

I had done research shortly after Zeb’s birth about what can happen after a Tubal Ligation but honestly I kind of had to be careful not to read too much because the damage was done and the whole thing was way too depressing to read. 

Recently, though, I was sitting, and sobbing once again to my husband about all the pain and the headaches and the crushing depression and he gently said,”Can we get it reversed?”

It was the first time in three years that I felt someone truly heard me and I experienced a tiny spark of hope. I’d never looked into it but this question set a fire under me and I started researching heavily. I’ve discovered that I am not actually crazy, as the doctors would have me believe, but that I have been suffering from Post Tubal Ligation Syndrome for the past three years. There is a very controversial debate occurring on this in the medical field, and most doctors will not admit that it exists... how could it not?

There are hundreds of sites that list the same batch of symptoms, and out of the 45 I have 37. There are studies that conclude about 50% of women will have symptoms of PTLS after a Tubal Ligation. FIFTY PERCENT. And most of them have a hysterectomy within five to ten years because of all the pain. There is also a significantly increased chance of developing a hormonal form of cancer. (full list of PTLS symptoms HERE)

You guys, I am 35 - this is not acceptable. Why are doctors not studying the side effects of tubal ligation? This is a women’s rights issue if you ask me, and this is why I have chosen to speak out. 

I believe there are women just like myself suffering in silence and don’t even know what to call all of this crazy hell that they have found themselves in. When you have a Tubal Ligation you are cutting off the blood flow to the ovaries (a major hormone hub) which eventually causes them to atrophy and die. PTLS is the result of a rapid decline of estrogen/progesterone levels caused by blood supply being damaged to the ovaries, also called isolated ovarian syndrome or hormone shock. I’m in pre-menopause as I write this and have been offered a hysterectomy. 

I have discovered that you can have your tubes reversed. It’s called a Tubal Reversal and lots of women choose to do them if they change their mind about wanting another baby for fertility reasons. Additionally, there is a whole community of women desperate to have one done in order to reverse the effects of what PTLS has done to them. Insurance does not cover this procedure or even recognize the syndrome as real, but they do pay for hysterectomies! This leads us to the high cases of women opting for that surgery instead. One scary thought - the medical industry makes money on women who get tubals and then end up needing a hysterectomy. I’m serious. It’s sick and wrong. 

There are some clinics who will do Tubal Reversals for women with PTLS, nothing is a for sure thing, but when there are no other reasons for the symptoms you can feel pretty confident of what you’ve known all along and restoring the blood flow to the ovaries will hopefully ease the incredibly awful symptoms. I've read countless numbers of testimonies of women who have been helped by having their tubal reversed. 

I wish I could sit here and tell you I’ve had the Tubal Reversal and I am healed - but that’s not yet the case. There is a clinic in Chapel Hill that I am looking into, but the surgery is $6,400 and Chris and I would need to fly to NC for a few days together as well. I am fervently praying that the Lord will swiftly provide all that we need to get this thing reversed because I will always, for the rest of my life, wonder if this procedure would’ve helped if I don’t give it a try. 

God has always provided for us. After my husband had a total hip replacement this past December, we've started to see the miraculous nature of a healed body.. I am hoping and believing in full healing from these awful symptoms, and not by way of a hysterectomy, which would unleash a new host of problems for someone my age.

While I wait anxiously - I am compelled to share my story. I believe all women deserve the right to make an educated decision on Tubal Ligation. Some women really don’t have any adverse symptoms but thousands of us do. I believe there are thousands who haven’t even realized that’s whats going on. I can’t responsibly keep this information to myself any longer. 

If you are a women who is considering a Tubal Ligation I am begging you do some research. I wish I had spent even ten minutes during my bed rest to do some digging... I would have questioned the doctors almost requiring it of me and might have never had it done. If you are a women who has had adverse side affects from a TL I would love to hear your story, you can email me directly or leave a comment. 

Right now I am taking lots of natural supplements to help regulate my hormones and I have recently chosen a vegan/soy free diet to help rid my body of any further hormones and to help ease the symptoms. I still do rely on Ibuprofen pretty constantly but I am doing my best to manage what I can in the mean time…working through the deep emotional pain of feeling deceived and angry about my choice is a daily process too, I will keep you all updated I promise!

Thank you guys for reading my story - I would love prayers and support as we pray for God to make a way to fix what was done to me and I would love for you to share my story with anyone  you think it might help, I am always here to talk about this, my life and my families life is forever changed by Tubal Ligation and I will forever be advocating for women on this issue! xoxo

*UPDATE: Since posting this I have had the most incredible outpouring of love and support from so many. My dear friend, Andi has lovingly started a Go Fund Me - to help raise the money I need for the tubal reversal! HERE is the site…thank you all so much for your kindness, love, support and prayers it means so much!

Read more about Post Tubal Ligation Syndrome HERE
I found this podcast really interesting too for those who want to dig deeper HERE
all photos taken by my incredibly talented friend, Stacy Bostom