How goes it? Well....I'm still here

How am I you ask? 

Things have changed a little since my last blog update. For anyone following my story you should know I've had some health setbacks in the last 3 years but I'm improving. Can I say my tubal was to blame? Maybe...but I'm not entirely sure. I'm more cautious these days on how I answer that question because so many women look to me for advice. I may or may not update at a later time. I've honestly not decided if I want that info out there publicly.

What about you?

If you've stopped by my blog then obviously you're likely having a problem...The symptom itself and when it appeared is the most telling sign of whether or not its related to the tubal (in my opinion). Obviously things like sudden constant bleeding are not related to an autoimmune disorder but that's not to say there's not another gynecological reason. If you follow your doctor's advice and all of the tests they wish to put you through and still come up empty handed? Well then you may reasonably deduce that your tubal caused it. You found this blog on google...use google as your new best friend.

What do you do? 

When deciding if the tubal is to blame for everything, it's generally best to use caution and trace your symptoms back. Some things WILL and can be AGE related because keep in mind age 30 is when autoimmune disorders will rear their ugly head, HOWEVER some symptoms won't have an explanation...You can either choose to believe your doctor (it's age related or in your head) or you can take a leap of faith as I did in 2011 with my reversal.

In my opinion doing something is better than nothing...You can't just accept this is the way life is if you are suffering. Don't freeze up! Research!!! Weigh your options with what you know is best for YOU and your family. YOU are the one that must walk in your shoes. Do NOT let anyone pressure you into a surgery you aren't 100% sure you want. This includes husbands, sisters, moms aunts...you get the picture. The same can be said for your mate. Please do NOT pressure him into a vasectomy or not support him if he wants one. The only person that can make that decision is the person who will live with the consequences first hand. Their/your job is to ensure that person has as much information possible to make an educated decision. Take time to explore all feelings by both parties yes but the person who suffers or heals due to the surgery is the person who should get the final say. Join our facebook group to lean on others who have been there and use our files/albums to learn as much possible. We do not approve male membership unless they are a doctor. If you're a dude and want to talk with women about #PTLS then please join our family group here.

What did I do?

Was I confident my reversal would help? No but I was 100% sure that I could not live with my condition getting worse. I also knew I would have fewer options available for healing if I removed any part of my reproductive system...after all we have it for a reason. Assuming any part of it can be bypassed/changed/removed is what got me into this mess. I was not willing to risk the possibility of making things worse so for me reversal was the only logical conclusion (Reminder I had clips, not Essure). You'll need to weigh all of your options as well. Your doctor is not God and can't possibly know everything. You are your own best advocate!

Now what?

Again, figuring it all out is symptom/device specific...what works for one may not work for another. Devices have a way of weakening your body (Think Essure, Filshie/Hulka clips, Bands etc). If you take the surgical leap of faith and your symptoms go away after reversal, hysterectomy or tube removal....then your tubal and/or device may have been the cause. (Yes how stupid of me to suggest logic...something our healthcare system is severely lacking)

If you start to have symptoms of a different nature later down the road? 

You should use the same attitude you started this journey with. Follow through with the tests your Dr. suggests. It's very possible a medical device could have caused an inflammatory response in your body and those reactions do not always show up immediately!! Do not be dismissed. Keep searching for answers and ARM YOURSELF with as many scientific facts possible....but know, science doesn't always have the answers right when we need them so don't get discouraged either (Remember when fibromyalgia was all in people's heads?). Any doctor claiming their fancy gizmos can tell them everything necessary should take a seat. Trust your gut and approach this with a level head.

How can we change all the crazy?

Join the movement. Be a part of the conversation and the solution. If you're a doctor, LISTEN TO YOUR PATIENT. We aren't all hypochondriac/drug seekers and have better things to do with our time than sit in your office praying for answers.

We should ALL be demanding that technology IMPROVE lives, not destroy them. Most doctor's have no idea how medical devices are even put on the market, let alone the TRUE nature of their consequences. We all have a moral obligation to speak up and change what's broken...Our FDA is broken. Our laws are not protecting patients. Our doctor's are putting profits above patients when they promote dangerous products.

Don't believe me? Get the facts. Watch "The Bleeding Edge" (A Netflix original)

If you've been injured by #Essure join their group here and read the pinned post for important links you need!

Has your doctor received kickbacks for promoting Essure? Click here to find out.

Ask your state representatives to support The Medical Device Safety Act 2017 H.R. 2164 #MDSA17by clicking here (takes like 5 seconds and is asking for change for ALL medical devices! #breastimplant #mesh #filshieclip #hulkaclip #nervestimulator #defibrillator #pacemaker #infusionpump #cochlearimplant There are over 157 devices!!)

Join the conversation on twitter and one of our newest platforms instagram (FYI: we have another advocate running our instagram stories, you can find me here but I'm not very active, I mainly follow)

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.

Leave any drama at the door. This group means business and together we will change the future for our daughters.

https://www.facebook.com/groups/ImplantIllnessAwareness/

Check out the new FAQ page

For the most frequently asked questions and answers!

There is hope!

Since my reversal I must say life has been restored. 

Where hope was lost, it has now been given a new meaning.

Before reversal PTLS had left me feeling defeated and alone. I was a skeptic that a reversal could actually do anything other than restore my ability to bear more children (which I do NOT plan on doing). 

My reversal was a last attempt to get my life back. To end the daily pains that plagued me...from the random electrifying abdominal pains to the flu like symptoms that left me feeling like I'd been ran over...I wasn't sure I was going to make it out as ME ever again.

Everything happens for a reason however...

I've always fully believed that. My life's mission is to now go forth and tell the success I have had since reversal...to be an advocate for other women that are suffering so that someday the stigma surrounding this syndrome can be laid to rest. It is not in our heads! It is not psychological, how could it be when I have never changed my mind about more children? 

My symptoms were there before I knew what PTLS was or that other women suffer from it...a result of my tubal ligation and I know this because ALL of my symptoms went away after a reversal. I may not have a medical degree (yet) and I may not be able to prove the science behind why the PTLS occurred in the first place, however, I am walking proof that the body  can restore and heal itself...because my reversal gave me my life back.

Please read on for my PTLS story and share this blog with any woman you think may be suffering. 

You could give her back her life by giving her this information. My goal as an advocate is to educate the world...so that someday this syndrome will not be something that can be denied by doctors, instead they will have to inform women about it BEFORE choosing a tubal ligation.

Join this helpful support group if you're suffering or would like to make a difference...every voice counts

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.

Hope floats

Discouraged and feeling even more hopeless I began searching for more answers online after my last post. Thank God for the message boards on Chapel Hill Tubal Reversal's site!! Story after story I read could have been written by me...from the rude dr.'s to the testing, the hysterectomy offers but most of all the symptoms. I then began reading up on the success rate a tubal reversal could offer towards what I had been living with for over a year...it is because of so many women speaking out and sharing that I made my final decision. I took out a loan and began praying.
Thankfully my prayers were heard because when I found the nerve to call for an appointment I was able to get in only 7 days later with Dr. Monteith at Chapel Hill!!

My surgery was Sept. 28th at 11:30!! I was a bit surprised at the level of pain I had when I woke up. It felt a lot like the labor pains I had as soon as they delivered my son via c section. (I had a spinal block for his delivery, yet still experienced severe cramping) I must say that although I was crying and hurting really bad the staff was great! They didn't seem annoyed that I was a "whimp" and gave me everything they could for pain. It took about an hour for my pain to decrease from severe labor like cramping to severe period cramps. Since we were able to get it to go down to painful period like cramps I was released to go back to my hotel room...So much more comfortable than any hospital room could be and was truly a home away from home.

By the time I reached my room at about 3:30 the pain had dulled even more that I was able to let the pain meds lull me into a peaceful sleep. When I woke up at 5:30 there was barely even an ache. So I made a ph. call back to home to update everyone, went potty, and grabbed some food. I may be moving slow but this is nothing like after my c sections. After moving around my pain did increase, but it was time for more pain meds as well so I took those and rested comfortably in bed with my laptop :)



5 days post surgery and it's amazing the changes that are already taking place!!

I had these skin rashes that would come up every now and then on my hands that I thought were related to washing them too much but apparently not. When I went for my reversal I had one on my wrist. The following day after surgery it had began to clear up! Day 5... almost completely gone. I didn't have these before so I guess it's not a coincidence that it's clearing up after the TR.

My acne has already begun to clear up as well. I've not changed my skin regimen yet my cystic acne begun to heal rapidly on day 2-3. The soreness that cystic acne can cause is crazy but the inflammation and soreness is gone on day 5.

I've not had ANY shooting pains in my abdomen!!! Yes I'm sore from the surgery and I'm not leaning over much yet but so far NO SHOOTING PAINS IN MY BELLY OR GOING DOWN MY LEGS!!! My lower back ache is GONE too!! My shooting pains and back ache were the number one reason I wanted the reversal and thus far it would seem as though they are GONE!!! Of course the other dr.s I went to said they weren't related...funny how they seemed to go away when a TR was done??? My hair has also stopped falling out at an abnormal rate...It still comes out some when I run my fingers through it but NOTHING compared to right before the tubal reversal.

As the days and months go on I plan to update this posting with my progress so that other women can see there is hope!! Don't let dr.'s take your parts when they are fully healthy!! Don't be their lab rat!! Listen to your inner voice that screams something isn't right and get to Chapel Hill to let them make it right again!! (Or of course another office that believes in PTLS and will perform a Tubal reversal for the relief of PTLS, insurance will likely cover it if you can get your dr. to file it for medical reasons)
I had my doubts when I began my researching...I had a hard time believing that all of my issues could be related to the TL. A hard time believing that it was as simple as getting a reversal to get it all fixed but after reading the message boards on Chapel Hills site, and reading blogs out there, I found too many stories written by other women that could've been mine...stories that had happy endings when all the women had to do was get a reversal. Again thank you thank you thank you to all the women who posted their success stories, I'm proud to be on the other side of the fence with you so maybe I can help other women too :)

How many of these will I need before they listen?

Yeah so another day of waiting for a resolution....another CT scan was ordered...another inexperienced nurse giving me a painful IV...more nausea from drinking the contrast dye...waiting 2 hours for it all to run through me...all so another Dr. could tell me the CT scan was normal, just like the previous 2 I've had in less than a month. How in the hell any Dr. can be so pig headed NOT to listen to the voice of reason I don't know. Seems to me after 10 years of Med school logic would somehow come into play or be taught that if modern medical equipment can't find anything. For Pete's sake use common sense and little reasonable deduction. If the problem began when I got the tubal ligation and has gradually gotten worse as time has gone by then why is it so hard to figure out what to do?? It's like when you lose your keys, you re trace your steps to find them right? Well why then are these dr.'s so stubborn with their God complexes that they can't re trace my history and listen to me when I say I never had these problems before the Filshie clips were used?? Are dr.'s incapable of using medical journals anymore?? Or how about Google?? There is evidence out there supported in medical journals that other women have the same issue!! There are several blogs out there of women TRYING to get the word out there that they have had the same problem!! Why are they so damn stubborn they can't listen, or read for that matter? Not everyone's body reacts the same way to medicine so why then do they think putting a foreign object into someone will always get the same result? I'm so fed up with being poked and prodded...being exposed to unnecessary radiation...if the previous 2 CT scans that were done in the last month didn't show anything then why oh why do they somehow think another one will?? Geez louise. I was told by my family dr. after getting the results of this last scan that he won't refer me to another GYNO (even though their office can't do reversals or remove the clips) No I'm suppose to go be treated like a pin cushion some more, go through more unnecessary testing so they can then refer me to YET ANOTHER dr. that will then have to do their own testing and poking...it's truly absurd the LACK of CARE that goes on in the health CARE field these days. Does anyone go to school to be a dr. because they want to help people or is it all about a pay check nowadays? Heed my warning ladies, think twice before getting your tubes tied, especially ask how they plan to do it, DO NOT GET THE FILSHIE CLIPS because IF you are one of the "few" that have trouble with them, you will go through hell trying to get them back out!! Well, it's either hell or $6,000 cash to get them back out...I don't have the luxury of having $6,000 laying around so I have to try and find a dr. that will believe me and will try to file it on insurance as it being a medical need to have them removed....at this point I'd be better off trying to light a match under water...