My Post Tubal Ligation Syndrome PTLS Story

I write this narrative to expose the pain and anguish that can come from having a tubal ligation. Most doctors claim that female sterilization is a suitable option for women everywhere as “simple birth control” when you’re done having kids. However, I am here to tell you from personal experience nothing is as simple or wonderful as it may sound. The day I signed the dotted line for my tubal ligation, I signed my life away.

Background Before Tubal Ligation

To fully understand my story, you will need some background information. I am a mother of two, a girl born in 2005 and a boy born in 2010, both via c-sections. Prior to either pregnancy I was not on birth control nor have I ever been; I relied on condoms and non-hormonal approaches, such as spermicidal gels or VCF film.
My menstrual cycles have never been exact “clock-work”, but they would come every 30-40 days and last 3-4 days with normal abdominal cramping. I rarely experienced any cramps requiring the need for medication such as Midol or Ibuprofen. I breastfed both of my children, but had long stopped by the time my tubal ligation was performed. I have a history of migraines, but was able to control them with medication. I had adult acne onset before the birth of my daughter, but it did not worsen after her birth. I’ve always had a very full head of hair and strong finger nails. I’ve always had asthma, but never had the need for medication, only a rescue inhaler for activity induced episodes. Prior to getting pregnant with my son I wasn’t in the best shape of my life. I had gained some weight, but nothing that had slowed me down. Overall, I functioned as a normal 29 year old should function.

My Tubal Ligation

In July 2010, I had my tubal ligation during the awake/epidural, c-section birth of my son. The delivery was very tough, as my son was breech and very large due to gestational diabetes. The nurses had to shove on me extremely hard to turn him into position. Upon removing him they then began working on me. Because I was asleep for the first c-section, I can’t compare the deliveries; however pain started immediately as they worked to tie my tubes and finish the birthing process. After enduring all I could of the pain, touching my son for a brief moment, I asked for enough drugs to be knocked unconscious. Upon waking, the pain was just as bad. This pain was unlike my first c-section after waking up. This wasn’t contractions or labor pains but an ache that felt like electricity if I moved. The shocking sensations shot from my abdomen down the fronts of my legs to my knees. I also had a severe lower backache. When I questioned my Dr. of this pain and why this felt so different from the first delivery I was told it was due to the difficult birth. Little did I know that many months and CT scans later I would still be experiencing those same pains, along with a few other surprises.

Aftermath of Delivery and Tubal Ligation

Walking for the first week was out of the question. I had to have help moving, turning, or getting from point A to point B. Week 2 wasn’t much better, but I stayed on pain meds to cope on my own after daddy had to go back to work. I also began to notice after my milk came in it was a lower supply than I had with my daughter. My bleeding did not stop after 2 weeks like it did with my first delivery, but took a full month and a half and I began having night sweats. I didn’t pay much attention to these little changes and believed my doctor when she said every delivery is different, plus I was older so some of it could be hormone related. She said the abdominal pains were just my body’s way of healing after such a rough delivery and should go away with time.
Editor’s Comment (Chapel Hill): Despite medical opinion to the contrary, the issue of Post Tubal Ligation Syndrome does not go away. Hundreds of women for whom this syndrome is real have benefited after having their tubal ligation reversed at Chapel Hill Tubal Reversal Center. Many of them have commented on the Post Tubal Ligation Syndrome Forum of the Tubal Reversal Message Board. Chapel Hill Tubal Reversal Center patients are welcome to submit blog articles as Amy has done to inform other women about their experiences.

Changes After Tubal Ligation: So Much For “Simple Birth Control”

Because I exclusively breastfed, I didn’t expect to have a period until at least month 7 or 8. Lucky me, however, started having my cycles again at only 3 months post op and they were REALLY random. Some months I would have 2, other months I would skip. When I did have a cycle, they would last 7-8 days instead of my normal 3-4. The pain was much more severe than ever before and would increase the shocking, stabbing pains, yet when I addressed this with my doctor, it was passed off again as my body still healing and scar tissue forming making things more painful…take some ibuprofen and the pain pills; “your ct scan is normal”.
With each cycle that passed I would notice other changes, such as the baby weight not coming off like it did when I breastfed my daughter. My fingernails were becoming brittle, I experienced dizziness, my migraines increased in the severity and longevity, and medication didn’t help any longer. I was beginning to have asthma attacks just by walking a flight of steps. I soon had to begin daily medication to control my asthma, cold and hot flashes all the time and my deodorant wouldn’t work. Mood swings that I couldn’t explain. One minute I would feel such elation, like I had never been that happy in my life, to the next moment being so angry and not knowing why or at whom, but in five minutes I would forget about it and have a complete memory lapse that I had bit someone’s head off. By month 6, I had to return back to my college courses. This proved more difficult than ever. It was almost impossible to concentrate, like having A.D.D. plus the back ache had become constant and it was a dull ache in my abdomen that would randomly electrify down the fronts of my legs at times knocking me to the floor. No amount of pain medication lessened the stabbing, and for the first 3 days of my cycle I heavily medicated myself to get out of bed without screaming in pain. I was terrified to carry my baby for fear of falling on him! With each passing month I kept waiting for these symptoms to improve, such as my hair to stop falling out, but instead I was starting to get bald patches like an old man in my temples! My periods had become outrageous. I couldn’t sit through class without excruciating pain and flooding. I had to take extra clothes to school with me and make sure that every HOUR I went to the bathroom to change my feminine products or I would be gravely embarrassed. My nightly routine included using a mattress protector, a super plus tampon, and an adult diaper just to get 8 hours of sleep; by morning I was soaked, in need of a shower. By the time the semester was out, I could go back to see my doctor again.
I had developed random aching from head to toe, feeling as if I had the flu. Every muscle, joint, and tendon I felt had been beaten with a bat during the night so that I could barely move! There were days I would just all of the sudden feel the need to sleep, even though I hadn’t done anything but laundry or watched T.V. I also noticed I kept having sinus pressure but had to be careful what I took or it would affect my milk supply. I used over the counter products to get by. My acne worsened to the point it wasn’t just near my cycle dates anymore, it was all the time and dark facial hair thickened on my jaw line as if I was growing a beard. Then came the insomnia, the crying at commercials on T.V. or silly things that normally wouldn’t hurt my feelings. I could care less about ever having sex again because just wearing clothing that touched the skin on my breast and abdomen hurt so bad it was nauseating at times. So much for simple birth control!

Symptoms One Year After Tubal Ligation

By the time I reached my 1 year post op in July and none of the symptoms had subsided I knew it was more than just my body healing, it was time for answers. Pain medications had stopped working all together for those horrid first 3 days of my cycle as well, so I was left to cry in a fetal position in bed. July’s cycle proved to be the worst I had ever experienced. My cramping and stabbing pains lasted 3 weeks and stayed just as severe as the first 3 days of my cycle, never seeming to have an end in sight, even after my cycle had ended. During this time of gut wrenching pain, I called for an appointment with my doctor but they wouldn’t see me. They said they had me in the system as a new patient, and the earliest they could see me was September! I was in the most excruciating pain I had been in thus far and begged them to check again. I had been to their office in September of the previous year for the last “normal” CT scan, I even went so far as to speak with the office manager, but they didn’t care. They told me to go to the Emergency Room if it was that bad.

I Learned About Post Tubal Ligation Syndrome And I Wasn’t Alone

It was then I started doing some research on what I knew (c-section post operative tubal ligation pain) and that’s when I happened across the words “Post Tubal Ligation Syndrome”. I began reading and couldn’t believe my eyes. Could this be real? The article said it was a debated syndrome, not proven. So then I Googled “PTLS” and I happened across some blogs of women that could have written my story. I began crying. I couldn’t believe there were other women just like me out there! With the symptom list in hand, I went to the emergency room only to be treated like a second class citizen as if I had grown an extra head. That doctor was the rudest man I have ever dealt with when it comes to doctors. He told me PTLS wasn’t real and if I had really been in pain all that time then I wouldn’t have waited until then to show up in his E.R., that I needed to face the fact that I was older, my body was aging and was not the same as it once was. He said if I didn’t like the abdominal pain I was experiencing, then I should get a hysterectomy. The only thing he thought was wrong with me was pancreatitis (because of elevated liver levels). He wrote me a prescription for pain meds and sent me on my way. Two days later I went to another E.R. in severe pain in the upper abdomen. I told them I had been diagnosed with pancreatitis, so they rushed me back. Turned out I had an ulcer from all the pain meds I was taking. They referred me to a gastroenterologist who was disgusted at how poorly I had been treated. He gave me Nexium to heal my ulcer and did a colonoscopy to ensure there was nothing wrong with my colon that could be causing the lower abdominal pains and then told me to be sure to let my gynecologist know that. Sure enough, when I got to my appointment in September I was greeted with an unfamiliar face, not my usual doctor, and her first suggestion was a colonoscopy. I smiled and told her I already had one and it was normal. I then asked her if she believed in PTLS. She didn’t, of course, but said anything was possible. Her solution was a hysterectomy. At age 30, without diseased organs, I found that unacceptable and asked for a referral to someone able to do a tubal reversal. I was sent to a local university hospital and this doctor claimed that a tubal reversal could not legally be performed by any doctor on me for the relief of pain because PTLS has never been proven to be real, and there was no way of knowing if the reversal would solve my problem; should something go wrong during the surgery then he could be sued. He instead was convinced I had fibroids and wanted to do the necessary steps to rid me of those, but in the mean time to help with pain he gave me injections into the abdominal nerves. His injections were equal to a trip to the dentist. It only numbed the skin of my abdomen; the back ache and shooting pains still occurred.

Hope for PTLS Relief

I came home feeling defeated and hopeless that day but kept reading blogs, finding strength and hope in each one that maybe just maybe I could find a doctor that would believe me, that would help me. One blog in particular caught my eye. It was written by a woman named Megan Priest and she had gone to Chapel Hill Tubal Reversal Center to get relief from her PTLS where there were TWO doctors that actually did reversals for PTLS relief! She was a walking inspiration, and after messaging her, she convinced me that although insurance would pay for a hysterectomy and rid me of the abdominal pain, it would likely worsen all of the other symptoms I was experiencing. After our conversation I was more convinced I needed a reversal, but I was still unsure if it was truly the answer to end my pain or how I could afford it. After all, every woman is different, and this would be a very expensive gamble. I decided to call Chapel Hill anyway and talked to one of the nurses. By the grace of God, they had an opening the following week at a discounted rate. All that stood in my way was paperwork and payment!! To a woman that had been in severe agony for a year, it was if the heavens had just opened and God gave me a hug and a miracle on that day! I swear I heard angels singing!

Life Restored After Tubal Reversal Surgery

Thankfully, everything came together for my surgery on September 28th, 2011 and one year later I am me again! I have my life back. ALL of the symptoms I named above have vanished. My children have their mother back and I have been blessed with the opportunity to share my story and to save other women the same pain that I had to deal with.
It has been hard not to blame myself for the year lost in my infant’s life when I could barely take care of either of us, but I take heart in knowing that the more I tell my story, then the closer I come to forgiving myself. If I can save just one woman from PTLS, then my pain and loss was not in vain. If my story brings strength and hope to those that are still suffering, then I have a deeper slumber at night knowing they too will soon find peace.
Words can’t express my gratitude for having my life back, nor being able to share my story with you. I hope that any and every woman that reads this will research and think before signing that dotted line because there’s no way of knowing if you too will have a story such as mine.We trust our doctors to tell us these things, but they don’t because PTLS has been debated since 1950 and has yet to be “proven as real”. I’m here today to tell you its VERY real and life altering. There are many more women like me on the internet that are coming forward with their stories as well, so please think twice before having a tubal ligation.
Editor’s Comment (Chapel Hill): Although a controversial issue to many doctors, Post Tubal Ligation Syndrome is certainly a reality to women who have the symptoms. As Amy has described so clearly,PTLS symptoms can be relieved by tubal ligation reversal at Chapel Hill Tubal Reversal Center. There is a discussion forum on the Post Tubal Ligation Syndrome Forum of the Tubal Reversal Message Board. Other Chapel Hill Tubal Reversal Center patients are also welcome to submit blog articles about their experiences.
On Wednesday, November 7th at 8 pm Eastern Time, Amy participated with Dr. Monteith and Megan Priest in an internet radio broadcast on Post Tubal Ligation Syndrome. An audio transcript is available for anyone interested in learning about Post Tubal Ligation Syndrome from both the personal and medical perspectives.