Hi - if you are looking for Ten on Ten and this months linky party I've moved so come on over and join me HERE!!!
Ten on Ten :: May 2015
Hi - if you are looking for Ten on Ten and this months linky party I've moved so come on over and join me HERE!!!
Updates and Such
Happy Monday you guys! Chris and I returned home late last week from quite a long trip first to Boston for a work conference for Chris and then onto North Carolina where I was able to undergo the surgery that my heart has been longing for and that you guys made possible so generously through the donations last March. I honestly can't even describe the deep gratitude I feel in my heart for all that God has done in these short few months, it is absolutely overwhelming!
Physically and emotionally before we left was truly one of the hardest times in my life. Not only was I battling the PTLS but on top of it I got super sick. My dear friend Alisha described it as the seasons changing on my life, the wind blowing hard and my body and mind and spirit fighting to make it through the transition. Our time is Boston was fun but I literally had such intense migraines…you guys I'm totally going to do a good update on surgery and my physical health in a few more weeks. I am still recovering from the surgery and I want to give it some time before I really share about healing BUT can I just say - I am already feeling AMAZING!! Like night and day from before surgery. NO migraines since surgery, my fatigue has started to lift the deep depression and anxiety is decreasing…you guys GOD is healing me and I am just beyond grateful!!
So I promise I'll be back and I am so so grateful for you - thank you from the bottom of my heart for your support and love it means more to me that you will ever know! xoxo
ps. I am going to be phasing out my blogger blog and my sweet friend Heather has combined my old blog and this one onto a new platform rebekahgough.com will become my new permanent home soon…this site will still be live but wanted to let you know I won't be updating it anymore..visit me at my new site HERE!
Ten on Ten :: April 2015
I'm finally getting my set up - better late than never I suppose. Truthfully we were all so super sick with the flu last week, I was in bed the better part of five days and I admit that for the first time in eight years of doing ten on ten I decided to postpone my set to the eleventh because I couldn't muster the energy. It worked out really great though because April 11th just so happens to be our anniversary and we decided on a whim to take a trip into the mountains to shake off the rest of the sickies and wound up in Leavenworth of all place for a great night of celebrating together as a family! Chris made me do eleven photos instead of the usual ten though to make up for my delay but I am happy with what I captured this month - a little snapshot of what our family looks like right now and all the beauty in the ordinary I could find too…thank you guys as always for participating in Ten on Ten with me, it's such a gift!
Post Tubal Ligation Syndrome :: A Miraculous Response
This has been one of the craziest, most incredible weeks of my entire life! I still can’t get over all that has happened since sharing about my journey with PTLS and never in my wildest dreams would I have ever imagined that I would be divulging information on my personal health here in this way. But in doing all of the research and digging and coming to the realization that I needed to try the reversal surgery for myself I felt the Lord asking me to boldly share about it.
It was a nagging almost unrelenting nudging and I couldn’t ignore it.
After sobbing myself to sleep one night at the hopelessness of the situation - and feeling real anger that we would never be able to afford such an expensive elective procedure I confessed to Chris that I had it all worked out in my mind. I was going to take my Father out to lunch, just the two of us and lay out my situation as clearly and well researched as possible. I was going to ask him for a loan and had even worked up the detailed five year payment plan. It was all I could think about. But God instead kept nudging me to share about it here, on my blog.
Josie and Zeb and I stopped at the ATM one afternoon and withdrew twenty dollars, I handed it to Josie and asked her to pray over it and ask the Lord to increase the money to be exactly what we needed for the surgery Mommy needs. It was really sweet and I tucked the money in a jar when we got home.
The nagging got the better of me so I sat down and wrote out the craziest post I have ever written and then decided I’d just let it simmer for a few more days, all the while planning to talk to my Dad...
On Tuesday I couldn’t stand the nagging any longer and felt deep in my spirit that someone needed to read my story, no more hesitating. I felt the Lord say - share your story and give me five days.
It was so clear. Share your story and give me five days.
I hit publish on the post on Tuesday morning and basically hid my eyes...I felt like the Internet was starring at me. To say I felt (feel) exposed is an understatement.
But what happened next was literally shocking! I began getting text messages and emails and voicemails from friends who were in real tears with me over what I had shared. Women coming forward with similar stories some discovering answers themselves after years of deep confusion about what was going on in their body. Some women let me know that they would not be having a tubal now, some of whom even had them scheduled! Andi was one of the first to respond and after her own time of prayer about it, made the loving suggestion for the Go Fund Me site - and admittedly I felt embarrassed at first but wanted to be open to what the Lord wanted to do.
The donations started coming in and you guys they have undone me. I stand literally speechless over what has happened. FIVE DAYS after posting my story the money had come in and it is still coming in...Jesus has parted the waters and is making a way for the reversal surgery and He is doing it through all of you!
I don’t even know how to begin thanking you guys for the love and support you’ve shown and your incredible generosity that has been nothing short of miraculous. God is telling a story through you and I feel your love so deeply. I don’t take this provision and the way it has been given lightly. I feel like I am standing at the center of a miracle and I haven’t even had the surgery yet!
Tubal Ligation Syndrome is such a complex issue, just as not all women experience the impact of menopause in the same way not all women experience the effects of a tubal ligation in the same way either. This is what makes it such a difficult conversation in the medical community. It’s not straight forward and easily proven by medical research.
I met with a new OBGYN today. I was SUPER nervous about it but need to jump through a few more hoops before I am ready to have reversal surgery so I went in fully expecting a good conversation but not expecting her to really hear me.
The nurse who checked me in was listening to me and typing on the computer about some of my symptoms and she muttered something about how she had had her tubes tied. I asked her if she felt like she had had any adverse side effects. She said no and then she said, but a few years later I started having the craziest pain and bleeding every two weeks so I had a hysterectomy. She then looked up from the computer and said, “Oh my gosh I never connected the two... but now that I think about it, I never had any of those issues before I had my tubes tied, and they never could tell me why I started bleeding and having pain...” This is where the disconnect happens, women aren’t really asking questions about their body as a whole just treating the symptoms. How are OB’s suppose to know women are struggling after tubal ligation if we aren’t telling them?
At first my new doctor she put up a fight - and I have to note here too that I have had a few incredible OB’s come forward with a ton of wonderful information for me about ovarian function and blood supply to the ovaries and theories on pain. I’ve loved these conversations because I think all of the information about tubal ligation belongs at the table. I think my part of the story is real and important too! Even though they haven’t medically proven PTLS, I have real first hand experience and know many women with similar experiences who will tell you, this is very real.
The doctor today was feisty and well past menopause. I told Chris what I loved about her was that she has been practicing medicine for so long that she really has nothing to prove. She wasn’t fully on board at first that tubal ligation could cause such crazy hormonal issues but she did admit after a long, thorough, conversation that there is a “dirty little secret” (her words, not mine) in her field that a huge percentage of women who have tubal ligation will be back in a year or two with increased pain and bleeding and asking for a hysterectomy.
Um, could we put on that on the waiver than? And maybe mention that to your nurse!
She also said that she actually tried to study PTLS during her residency in the 70’s but she just couldn’t ever make enough out of it because the information is so subjective. She did say that she was taught in medical school that female dogs respond very negatively to tubal ligation, but that humans do not. She personally has always encouraged her patients not to have a tubal but rather use alternate forms of birth control because, she believes, in the long run those women just do better in general. She still isn’t fully convinced that reversal surgery is going to help my symptoms but at the end she begged me to keep her in the loop. She’s ordered a few other tests and wrote down the name of the doctor in Chapel Hill who I am planning to go to - she was fascinated to hear that an OBGYN would perform a reversal believing that it would help the symptoms of PTLS. She also told me this was really exciting because if it helps she was eager to have that information in her arsenal to share with other women!! At the end she said, you know the human body is just so complex and we really can’t ever fully know everything!
It really felt incredible that she was hearing me..she told me I was very researched and well informed and she liked the direction I was leading even if insurance was out of the question, it made sense. Another miracle if you ask me!
There have been moments of doubt and fear that have come up for me over the past week too. I can’t explain the weight of all that I am carrying - it’s all good but it’s just a ton to hold right now. I’ve felt attacked spiritually and emotionally at times and am still living with the real reality of depression and anxiety. But I know the Lord has me on a unique journey and it feels like just the beginning.
So thank you all from the bottom of my heart for everything you have done for me! I am learning to trust God’s voice, (and my kids are seeing their prayers answered too!) and I plan to continue sharing my journey through this whole process - hoping to get a surgery date scheduled this week and a few other tests out of the way. Through it all I am on a mission to raise awareness that tubal ligation might not be as simple or as harmless as it seems.
Read part 1 of my story HERE.
More about Post Tubal Ligation Syndrome HERE.
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
*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
Ten on Ten :: March 2015
Happy Ten on Ten - I am looking forward to finding some sunshine and beauty in the ordinary today and I am looking forward to seeing what you find too! I'll be back with my set later this evening, hope you have a blessed day today! xoxo ((more about the Ten on Ten project HERE))
Ten on Ten :: February 2015
Subscribe to:
Posts (Atom)
