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.
Thanks so much for sharing and I'm so glad you were able to receive financial support for this! I hadn't heard of PTLS before your first post and I'm saddened that it affects so many women. I hope this surgery will bring you relief from your pain.
ReplyDeleteGod is so very good. I will continue to pray.
ReplyDeleteSo so thankful for your bravery and obedience in faith to share this with us all! I am so encouraged to be bold in faith and ask God, even when my heart is wobbly and doubting. Its so funny how we make our own plans but God gently nudges us toward more and his glory. Yay rebekah!
ReplyDeleteYay yay yaaaaaaaay! Fantastic! Praise the Lord!
ReplyDeleteYay yay yaaaaaaaay! Fantastic! Praise the Lord!
ReplyDeleteLifting you up in prayer. Love you so much!
ReplyDeleteI have tears of joy streaming down my face as I read this update... God is so good! I am so excited for you Beck! The ocean just got bigger and you feel so far away right now. I cannot wait to see you, so I can give you just the biggest hug and rejoice with you! We have so much to celebrate! Less than 2 weeks! Love you so much sis! Xoxoxo
ReplyDeleteWhat a miracle! I'm sitting in a pile of tears thinking of God's goodness.
ReplyDeleteFrom reading your blog I had no idea what was going on in your life. Yet, we all know countless people who have unexplained chronic pain, disorders with symptoms that no one in medicine can definitively diagnose. I am heartbroken that you've been walking through that.
You are a STRONG woman. God is using your research and faith to bless others again and again. And for you I believe in complete healing! Thank you for sharing this. As a nurse in L&D I certainly am praying about how to advocate for my patients in light of this as I research PTLS , and somehow still have a job if I've convinced patients otherwise :)
Cheering you on and believing in miracles! Our God is mighty to save.
Hi Rebekah,
ReplyDeleteI'm new to your blog. Just wondering if you've had your reversal done yet?
I have suffered with PTS for 10 years since my tubal ligation after my third baby. I have regretted it every day, and am praying for a reversal.
I'd like to know if it is expected that your symptoms of PTS will actually reverse back to normal after the reversal is done?
Thank you
Amanda
Thank you so much for sharing your story. I had my tl in march 2009 and since then I am so different. I am not myself. I had major depression afterwards, I have on/off anxiety not to mention anxiety attacks. After birth I tried breastfeeding but just wasn't making enough milk which was rare because I was able to breastfeed my 1st born for a year in a half and my 2nd baby 6 months. So that was very emotional and sad. ๐. Intercourse is very painful. I've had lower stomach pains ever since. I randomly start crying and believe I am a horrible mom. ๐ข I have major mood changes and I was so good with patience which I feel like I'm not anymore. I pray that God can help me with all this crazy symptoms. I am also looking forward to a tubal reversal in MX since I am from Tx and it is very expensive. I've done my research on the place and I'm more excited than ever. I've read some Womens stories and how good they felt after surgery. I hope your turns out great. ☺ Prayers going your way for you and your family. ❤
ReplyDeleteSorry to hear about everything you went through. I stumbled on your page while looking up information about tubal reversals. I had my tubes tied in November after my third child. Seemed like a great idea since being on hormonal birth control didn't go to well with my body (headaches, emotions etc) and was never warned that there was any side effects to a tubal ligation. After the normal pain and discomfort from having laproscopic surgery passed (about a week) I was left with a nagging stabbing pain on my one side and was told at my post op appointment that it was just my tubes being mad at me (seriously?!?!) and that I just needed to let it heal. We are almost 6 months later and I have a slew of symptoms - I have 27 of the 45 symptoms listed including headache, weight gain, bloating in my lower abdomen, extremely heavy periods, mood swings, chronic tiredness, painful ovulation, an aching feeling in my pelvic area that feels like it radiates down my legs, sometimes stabbing pains that make me unable to walk and have developed a complex hemorragic cyst inside my one ovary - all within under 6 months. Kind of scared to know what could happen long term. I'm considering a reversal just to get rid of the symptoms (not for pregnancy) but they are expensive so that may be far off from where I am now. In the mean time I'm taking DIM to flush excess estrogen and considering eithe maca or vitex to also help balance hormones just don't think it will ever be very effective since the tubes are tied and it probably won't ever fully help but any improvement is better at this point. I think more frustrating than the pain is the fact that no doctors recognize PTLS as real. I am seen at a military facility and they gave me multiple diagnoses for all my symptoms - one of which my pelvic pain is actually muscle pain from having my third baby in September - they recommended physical therapy and a good vitamin. I'm just tired of the run around and feeling like no one (in the Doctor world) understands. It should be illegal to have this many women suffering from similar symptoms who have all had the same procedure done and not require a disclosure warning them of potential side effects. Then if you still choose to have it done then let it be so but this is terrible and way worse than the hormone sensitivity I had on and off in the past to oral contraceptives.
ReplyDeleteI was wondering if you ever got the surgery and if so how you are feeling now?