A Diva's Journey with Post Tubal Ligation Syndrome - PCOS Diva
A Diva’s Journey with Post Tubal Ligation Syndrome

91807-custom-ribbon-magnet-sticker-Post Tubal Ligation   Syndrome

JoAnn recently reached out to me via my Facebook page.  She is a fellow Diva who had a tubal ligation after her second pregnancy. She has suffered from Post Tubal Ligation Syndrome (PTLS) and is sharing her story in hopes of educating other women of the risks of this procedure.  If you have ever considered a tubal ligation, you need to read JoAnn’s story below. 

A guest post by JoAnn Martinez

When I find a doctor I trust, I trust like no other, I really rely on them. Isn’t that how it’s supposed to be? My doctor had identified certain characteristics in me at 27 that diagnosed me with PCOS – something that no other doctor had done before. I had been having regular check-ups as an adult woman. In our very first visit, she identified me. It blew my mind. It explained so many things that had been wrong in my life: late onset menses, the irregular cycles, heavy periods, acne, strange hair, weight gain, and ovarian cysts. Since that visit, I entrusted her with all of my gynecological care. She knew me and my body, and she would be the one to guide me to be a healthy woman. I just knew it.

I had never been on birth control, but she suggested that I try to regulate my periods with a birth control patch, as many women with PCOS rely on hormones to do so. I tried for a short while, but we didn’t see much improvement. We decided to monitor things for a while. Meanwhile, I turned to a site called SoulCysters for support.

Finally at age 31, my husband and I were ready to start trying to conceive, and I knew what I was up against as a woman with PCOS. I was ready to advocate for myself and I did. We called ourselves SoulCysters. They gave me the tools I needed to prepare myself at my doctor’s office. I asked for metformin, clomid and provera per my SoulCysters’ suggestions.

However, I was able to conceive my first son without meds shortly thereafter. It was just short of miraculous. My husband and I had been trying without preventing for years. We were stunned.  For any woman living with PCOS, this is truly a blessing.

After enduring a difficult pregnancy with my second son, at 35, my husband and I knew that we were done having children. I had always heard about “getting tubes tied” growing up and as an adult. I never envisioned that method of birth control being for me, simply because it was surgical, and because of its permanency. However, as my due date approached, here it was being an option all of a sudden. I remember presenting the option to my husband, who was willing to undergo a vasectomy, and he thought about it. Huh? Sure, why not? It was the norm. My doctor was going to be “in there”already so . I’d ask her about it during our next visit. My husband would be there and we could discuss the risks.

My doctor explained that the risks were ectopic pregnancy and a 1 in 400 chance of getting pregnant again. Tubal ligations were not fool proof. My husband and I half-jokingly suggested that he go for that vasectomy, after all. My doctor also assured me that it would NOT interfere with my hormones. I did not want to have to deal with the hormonal issues that birth control posed.

Did I mention how much I trusted my doctor? I don’t remember exactly how much research I did on tubal ligation. I may have Googled it a couple of times. If anything came up, it was not anything memorable. But I knew that if there was a risk of anything long-term, anything that may affect my day-to-day well-being, she would be the one to tell me. Right?

I had my second son via c-section, followed by the tubal ligation, as planned on November 1, 2011.  It was an uneventful birth compared to my first. I was able to hold him right away and I was eager to try breastfeeding. It was exciting to see his face and feel his skin against mine. That moment was perfect. Always.

However, looking back, something was different from my first son’s birth.  I remember telling nurses that I was anxious. That was normal for me. I am prone to anxiety. They would look check all the gear hanging behind me, do a once over and check the IV coming out of my arm, and do their best to reassure me. But, the anxiety was there. I remember it.

Upon arriving home, my husband’s parents were there to help us for a while. I was thrilled. My mother-in-law helped me stay on top of my pain meds and helped tend to my incision that hadn’t been healing well. We continued to dote on our precious boy, but I was still just not the same.

I felt anxious, guilty, quick to anger, and just distant even though I was surrounded by so much love. To this day it’s hard to explain. I expected the baby blues. I expected tears of joy that just came for no reason at all. But the rage? No, I didn’t expect that. The guilt? Nope, didn’t expect that either.

My in-laws eventually left, and I continued to feel the emotional symptoms increase. But something started to happen physically as well. One day, while getting ready for our first family outing as a family of 4, I had a dizzy spell; the room wouldn’t stop spinning unless I closed my eyes. My doctor had me call another doctor. She didn’t think it was my hormones, but in my gut, I knew it was.

I was having a postpartum period, but the cramping was unbearable. I expected it, but for some reason I didn’t expect it to last as long. And there was more. I started losing my hair, had dandruff, my skin was raw, had “brain fog”, and was easily fatigued.  What was going on with me? The emotional changes raged on. I thought, postpartum hair loss, postpartum hormones, postpartum everything, right? In the back of my mind I was thinking that it just was lasting too long.

Then, I started having unexplained, debilitating anxiety attacks. Debilitating as in paralyzed on the floor crawling to check on the baby in his playpen. I had to call my husband to come home from work because I so scared. We had to ask my in-laws to make the seven hour trip back to our home to help with the kids while I tried to sort through it all.

My husband was worried about me. He decided it was time to actually call my doctor. We went together. Her associate diagnosed me with Post-Partum Depression or PPD. I figured. I accepted it. I started taking my medication right away. I wanted to be a better mama.

The meds helped take the edge off. However, PPD was not all that this mama was suffering from.

The cramping and bleeding continued. As a woman with PCOS, I had always had irregular periods, but for some odd reason I was cramping even when I wasn’t having periods. It was brutal. I actually doubled over in pain. I knew something was really, really wrong.

Then, one day in my SoulCysters Facebook mommy support group, my friend, Kim, posted about something called Post Tubal Ligation Syndrome, with the question, “Can anyone relate to me?”

I Googled and found Heather King’s beautiful blog, The Extraordinary Ordinary. Her story read exactly like my life at the time. PTLS. That was it. I had PTLS.

I immediately began doing more research. I found that doctors don’t necessarily tell women about PTLS because the National Institute of Health doesn’t recognize it as a condition. Doctors don’t believe in PTLS. Would mine?

I gave my doctor a list of all of my symptoms. She examined me and listened intently. She then told me that I didn’t have PTLS. She attributed almost 20 symptoms to depression. My doctor whom I had entrusted with my well-being, my body, and my health, had fed me a canned response. I was devastated. I breathed deeply. I asked for the hormone tests. She was willing. In the meantime, in order to regulate my cycles she suggested birth control pills. That would have enough estrogen and progesterone to help my moods and cycles as well. I had a tubal ligation in order to avoid hormonal birth control pills, and here I was having to take them in order to treat the complications of procedure.

Within days, I received my lab results. Her nurse called with the news. At the age of 36, 14 months after having a tubal ligation, I was menopausal. According to the nurse, I was to continue with birth control pills and my antidepressants.

Validation? Yes. Shock? Yes. Answers? No. You’re 36 and menopausal. Totally normal. Goodbye.

That month was also the last month of my last real, menstrual period.

I started taking the pill, and within days I could tell a difference. My body needed the hormones. It needed the progesterone. I started to feel cervical mucus that I had been lacking. The side effects of the pill were rather uncomfortable, but I wanted to be a better mama. My SoulCyster, Kim encouraged me to look into progesterone cream, and I haven’t looked back.

I eventually found a doctor that acknowledges PTLS. I had a saliva and blood panel test done to test my hormone levels. My husband held my hand as I cried when she explained my test results. The doctor looked at him and said, eyes full of compassion, “She sees hope. It’s not in her head.” I am now taking a full regimen of BHRT, or bioidentical hormone replacement therapy.

With all that said, am I better? Yes. I’m not one hundred percent but I’m better. I am actually one of the lucky few women whose cycles disappear. Many women that I have found via PTLS support groups on Facebook actually have long cycles, as in bleeding for more than 10 days. I am still searching for answers. I am still suffering every day, but it’s not nearly as bad. Not every woman is treating PTLS this way. Our bodies are so different. We are finding our way through this together. Some are having their tubal ligations reversed. They have found that to relieve some of the worst symptoms. Other women, have had a salpingectomy, a removal of fallopian tubes, and the most drastic treatment some women seek is a total hysterectomy. Unfortunately, what we’ve found is that insurance usually doesn’t cover surgical treatment of PTLS.

Not a day goes by that I wish I had made a different decision about having a tubal ligation. I have lost days and nights with my boys. I have lost intimate moments with my husband. I have spent hundreds if not thousands of dollars on treatment. I have questioned my purpose in life and wondered countless “what ifs?”.

I wonder about my doctor, why didn’t she warn me? What is she telling other women? I have since requested my tubal ligation operative report and my consent form. Ovarian failure is a risk listed on that consent form. For a woman with PCOS, wouldn’t that be red flag for my doctor?  I go over that discussion of the risks over and over and again. And every time, I come away feeling let down, betrayed.

After all the questioning, and subsequent pity party I always realize a couple of important things: I would not have met the women in my life that I have met, even if they are through a computer screen. They are my tubal sisters. More importantly, I would have never known how much strength sat dormant deep inside me. PTLS has drawn out the survivor, the overcomer, the activist, out from within and to the surface. I pray my boys sense that strength. For this, I have nothing but sheer gratitude.

If you are considering a tubal sterilization method or think you are suffering with Post Tubal Ligation Syndrome, please consider visiting Tubal Connect  www.tubalconnect.weebly.com for resources and support and the Facebook Support group https://www.facebook.com/groups/PostTubalLigationSyndromeisReal/.

JoAnn Martinez

Research:

http://www.ncbi.nlm.nih.gov/pubmed/9469283
http://www.ncbi.nlm.nih.gov/pubmed/8623843
http://www.cdc.gov/reproductivehealth/unintendedpregnancy/Sterilization.htm
http://www.tubal-reversal.net/sterilization-regret.htm

 

 

 

 

 

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  • Jen

    Thank you, thank you, thank you for sharing your journey! I’m 25 weeks pregnant with my miracle baby, conceived spontaneously after 6 years of trying and 2 failed IUIs. I’ll be 36 when baby is born and my husband and I decided we are done after this one. He wanted me to get tubal ligation if I need a c section. I found some research but not a lot about PCOS and tubal ligation. I had doubts but now I’m sure that I will not have a tubal ligation. Thanks again for sharing!

    • JoAnn

      I’m glad it helped! I know it’s hard to make connections between the two disorders, but red flags need to be seen by our practitioners. That’s so important. If they don’t see it, we need to educate each other.

  • Pingback: JoAnn’s story | All Tied Up With PTLS()

  • ladyshanae

    After doing a few searches on tubal ligation, pcos, and hashimoto’s thyroiditis, I decided NOT to have my tubes tied after the birth of my 4th baby. Every time I read an article like this, it makes me feel better about that decision. Thank you for sharing your story so that others can make a better informed decision! 🙂

  • lizette Villarreal

    I have pcos and currently pregnant with my 5th child due nov.9th and signed for tubal but now I will tell her I changed my mind if it will make my symptoms worse.thanks for the info

  • Kathi Pitner

    I had (and to some extent still do have) PTLS. I had my tubal reversed in 2011 and many of the issues cleared up immediately – like the constant, excruciating pain. I do not.recommend this procedure for anyone. There are so many options. Before my tubal I never had a cyst. Didn’t even know you could get them. After my tubal, I had surgery literally every 1-2 years to remove.multiple cysts, many of which were the size of golf balls. Because of my cysts, I became insulan resistant and now have a diagnosis of diabetes. I was never told of half the symptoms I lived with and the others were brushed off as rare occurances. Perhaps if we push as a community, the disclosure status of PTLS will change from nonexistent to mandatory.

  • Jennifer Sticha Svoboda

    Thank you so much for sharing this !! I had a tubal after my 4th c-section, and after that I had HORRIBLE cramping and migraines. I wad convinced it was because of the tubal, but my doctor wouldn’t listen to me. So I found a new doctor who would listen, and thank God I did, at my very first visit, she detected my breast cancer and I began a whole new journey. Thank you for letting me know I wasn’t crazy for those 6 years.

  • Kristal

    After my 4th c-section, Doctor said it was medically necessary to get tubal. Since has been horrible! It’s been five years and I feel crazy. I have gained weight, increased hair where it shouldn’t be, the pain and contractions worse than my first 8 hours of labor from baby 1, hot flashes, chills, chronic fatigue, brain fogs, dandruff, my vision has worsened as well. It was the biggest mistake. When I had my first symptoms at 9 months post, I called my gynecologist and they refused to talk to me. It’s been a battle every since. The depression and mood swings have cost me my marriage and my poor babies have seen me literally go nuts. I have been searching google for answers and finally got somewhere. Thank you for posting.

  • VG

    Thank you so much for your story! I have been going through the aftermath of an uninformed decision to get a TL also. I’m looking into options to help with the 20+ symptoms I’m having already from PTLS. I was on birth control pills on and off for years and didn’t want to be on hormones again which is why a TL sounded like the best option after 3 children. I’m not sure where you are located but I was wondering what state the doctor is in that finally agreed about PTLS. So hard finding someone who will even listen.

    Thank you

  • Aul74

    I have PCOS and I am so suceptible to hormonal changes that I was afraid of tying my tubes when the Dr. asked (to be done during my second c-section). After reading your story, I will NEVER do it. Thanks for sharing!!!!!!

  • Celine Zavanella

    Great. So now I have NO options. Everywhere I look…PTLS, Essure can perforate and cause damage to the ovaries, Mirena and BCP raises my blood pressure to dangerous levels, Paragard can migrate and perforate your organs or fall out. I wish women who had POSITIVE experiences would come forward and share as much as the women who don’t did. I am 3 weeks from my tubal ligation and all I can find are horror stories. It’s depressing as hell.

  • stroller_snob

    I had a tubal ligation along with my c-section in 2008. For three years I was a raging psycho! The husband and my sisters had an intervention with me and I knew I needed help. I had rage that I could not explain & no reason, three days of extremely heavy flow periods, acne, and cramps (which I have never had before). I went back to my OB/GYN and asked about ablation & meds. Holy cow! What a difference!! I feel as if I am back to my old self before I had children! No more periods, rage, cramps, or miserable husband/children! What works for me may not work for others; however, I cannot believe I waited three years until I made a change and recognized my condition. My heart goes out to other women who are experiencing PTLS -reading other women’s experiences on this blog make me feel that I wasn’t alone. Thank you for posting this blog!!!

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