Tuesday, March 22, 2011

My story of PTLS

This is my first post one month after having tubal reversal surgery.  All I can say is how incredible I feel!  I had my tubes tied after the birth of my 4th child in December of 2009, during her csection. (Filshie Clips)  Side effects started immediately.  The first thing that I noticed was I was not making as much milk as I had with the other kids.  I  just had a child two years before and had not had any problems with milk supply.  I had actually breastfed him up to 18 months, stopped for two months and became pregnant with number 4.  But this baby had to have bottles to supplement with, despite pumping and taking milk enhancing supplements.  The next thing that I noticed was that I didn't have that happy peaceful feeling that I usually had during that post partum period.  I was full of anxiety, sure that something was going to happen to one of my children or my hubby.  When I went to my six week appointment, I talked to my doc about this and all he would do is send me to the psychology department.  By the time I got my appointment with them I also had my first period.  This blew me away because I had never had a period so soon after birth, and it was horrible and painful.  I attributed it to the csection since it was my first time not having a vaginal birth.  I also still had horrible pain on my right side and I had no idea if it was from the csection or from the tubal.  At the time, I didn't know that they had used filshie clips.  I was adamant that I didn't want anything foriegn left inside of me.  No clips or rings!  The psychologist said she didn't think it was post partum depression, and encouraged me to go back to the doctor and explain the pain.  When I went back to the gyno, complaining of pain by my right ovary, I told her that I was concerned that it was where they removed a peice of the tube for the ligation.  She told me that I was "stupid and didn't know where my ovaries were".  I was so embarassed and angry.  But I was also scared.  I was in pain and she wasn't listening.  The nurse was in the room when she said this, and she asked the doctor if an ultrasound was in order but the doc wouldn't do it.  Then she said she would give me a localized pain injection in  case of left over inflammation from the csection.  If it made me feel better, I could come back the next day for a second longer lasting dose.  The pain shot helped, but when I went to go back the next day she wouldn't see me anymore.  She passed me off the primary care doc.

The primary care doc was quite nice about it all.  He agreed to give me another shot for pain and I explained that I was afraid that it was where they had removed a piece of the tube.  He looked up my operative report and said he didn't think that was it.  (but again, didn't tell me why)  When he had me point out where I was hurting, he said he couldn't give me a pain injection too deep as it was right above my right ovary.  It felt great to know that I wasn't "stupid" after all.  The pain injection only lasted for a couple of days much to my disappointment.  He scheduled me for an ultrasound. 

By this point I was feeling horrible about the Tubal Ligation.  My periods were heavy and irregular.  I had horrible hot flashes, mood swings, anxiety and depression.   My hair was falling out, my nails were breaking way back into the nail bed.  But the weirdest thing was I had a rash on my back that itched like crazy.  Each time I would ask about these symptoms I was told they were all in my head.  I couldn't wear jewelry anymore without getting a rash.  I always had an allergy to nickle and that was why I didn't want to have any clips inside of me.  Then finally my periods stopped altogether.  I needed answers and fast. 

My ultrasound found nothing.   I had blood work done that was "unremarkable".  Then I kept having this nagging feeling that I needed a copy of my operative report.  I requested both the operative and pathology reports from my surgery.  When they could not find a pathology report, I knew that something was up.  When I got the copy of the operative report I found out that the doctor used filshie clips for the ligation.  I was sick.  There were metal clips in me that I couldn't do anything about.  Yet, I thought maybe it was a blessing.  I had already been looking into tubal reversal and had read on numerous sites that fishie clips were the easiest to reverse.  I didn't know what to feel at that point, but I was relieved to feel like I had an answer to my pain. 

On to the next gyno.  She believed me about the pain and said that women with all types of ligations complain of the same pain that I was describing.  (Where was that on the informed consent form?)  Her solution to my pain was to take out my fallopian tubes.  I was shocked.  How could causing more damage be a good thing?  She said it would be a four to six week recovery.  She ordered a CT scan just in case one of the clips came off and had migrated.  Great.  Another worry.  CT scan came out normal. 

By this point nine months had gone by and I had no more answers or relief.  I finally started another period and it was the most painful and intense period of my life.  It lasted twelve days and was unbelievably heavy.  I was wiped out and told my husband that I couldn't take anymore.  I finally sent my operative report off to the Center for Fertility and Gynecology in Tarzana California.  I had a phone consult with Dr. Marc Kalan.  He was compassionate and understanding.  This set my tubal reversal in motion. 

Waiting for the reversal was the hardest part.  Finally the last few months he put me on birth control pills which helped the pain during ovulation and slightly lessened the heavy flow. 

Finally, 14 months and two days after making the horrible mistake of having my tubes tied, I had the reversal surgery.  I woke up feeling peaceful, and the pain that I had been feeling since having the TL was gone.  I feel back to normal, anxiety is gone, I've had my first normal period since giving birth, and I can move without pain!

I am starting this blog to help other women realize that having your tubes tied is not what it is advertised to be.  And while I realize that there are many women happy with their tubals, there are many more who have horror stories like my own.  All women deserve informed consent, and a right to know what side effects they could have.

17 comments:

  1. My first sign was the dropped milk supply... and then the anxiety that followed immediately...Man I wouldn't wish this on anyone... so miserable. BUT, I am super happy you also have been helped by the reversal!!
    Thank you for viewing my Blog, and commenting...xxx's

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  2. Thank you so much! I am also so excited to see that you are on Dr. Berger's web blog. We need to get out our stories so that we can save other women from the pain that we have been through!

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  3. thanks for stopping by my blog and commenting.

    sounds like a lawsuit to me with that OBGYN for putting in clips when you asked for none.

    when I had my reversal Dr Perez actually wanted me to sue my OBGYN for leaving infection in each tube between the burns. I was so sick because of a 3 yr UNTREATED infection! we chose not to fight it.

    I had a lot of relief my first yr post-reversal. lost 20 lbs and felt awesome. now I am over 2 yrs from surgery and gained back the weight and then some and feel like crud. probably mental because I want a baby so bad and I am the last of those who had surgery near my time to not be pg and it hurts.

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  4. I think the hardest thing in the world is longing to hold a baby in your arms and at the same time knowing that a mistake may have taken away that opportunity forever. A friend of mine said that before her last pregnancy she was told she was too old, and that she would never have another. She began to pray, "Your Will not mine, Oh Lord" She conceived her last child at 48 and carried her healthy baby girl to term.

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  5. I had a tubal in july 2010. My life has never been the same. I always feel dizzy, light headed, memory loss, horrible migrains and terrible lower back pain. My periods are heavy and painful. I'm having mine every two weeks . My pms is the worst. I'm full of anxiety and anger. It's hard for me to get out of bed and face the day. My OB tells me the tubal is not the problem and tries putting me on birth control. I could never take birth control because the pills make me throw up. Since the tubal, I feel like I could throw up everyday. I have sleepless nights, my pelvic area and legs hurt so bad. I'm so tired of hearing take the pill, take antidepressants. I don't want medication. I want to feel normal, I want my life back and i want someone to believe me. My ob never told me a thing about PTLS. I'm so angry, I would sue if it were possible. I will get a tubal reversal and fight to get my life back so I can be a better Mom and wife. I need this to be normal again. I can not imagine living the rest of my life feeling this way. I will tell everyone I mknow never to have a tubal. We must speak up to be heard.

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  6. I couldn't agree with you more Aileen. We have to speak up together. Each and every one of us who have had a tubal and had problems needs to tell our doctors, friends, family, and most importantly our daughters. This needs to stop with our generation. We need to be the last ones that have been duped. Rest assured that a reversal will help you. It doesn't make it any easier that you now need a second surgery to fix the first. But at least you know that there can be a light at the end of the tunnel. Blessings to you!

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  7. very nice information you shared with us ..
    I'm really impressed that you have lots of information about reproduction,Birth Control and pregnancy.i may believe that you also want to know about Tubal Ligation Reversal.if tubal ligation then look on mybabydoc.com ..
    Thanks for sharing

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    1. call me we trying to get something done about this issue

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  8. Thank you for sharing!! I had my tubes tied in 05 and have alot of symptoms of PTLS. There are few Drs. that reconize this and it is not just caused by the clips, ALL tubals can have this affect on its victim!! I am tired of the pain, migraines, anxiety, depression which the last two have resulted in me taking anti-depressants and Xanax and talking to a therapist every month. UGH!!
    I have looked into Tubal Reversal but since the syndrome is not reconized as a real syndrome yet (which I can't believe after all the complaints it hasn't) my insurance won't cover it because it is not medically necessary it is a choice. I would have to have another child but put me on anything you want to avoid this just to prove to you that is NOT my reason for wanting the reversal, I just want the old me back!!! All my kids have known is sick mommy not who I used to be before they were born, such a shame!!!
    Hope this blog helps other women choose another form of birth control and stay away from having a Tubal is a sentence for life!!!

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  9. I had a cellphone seek advice from with Dr. Marc Kalan. He was sympathetic and knowing. This set my tubal change in movement.
    reverse tubal ligation

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  10. Oh my goodness, thank you for sharing your story. I'm going to request my post operative report from my TL. I had mine done 12 years ago. I've suffer the same emotional system as you. Till this day I suffer ever month with pain during my cycle. Now I'm beginning to feel that pain during ovulation. Thanks for sharing.

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  11. I'm 31 had my TL done 4 years ago with in weeks , I lost all will to be a mom, a wife, get out of bed... My body hurts , anxiety , depression, memory loss, until yesterday I have never heard of ptls , I was told this was lupus ... I know it's not ... No blood test ever backed up my drs theory ... I want my life back.. Has anyone been able to get an insurance to cover a reversal??? Please help

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  12. Excellent, I like the way you have shared you PTLS (Post Tubal Ligation Syndrome). Thanks for brief info.
    Tubal Reversal

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  13. PTLS has many symptoms that affect health of a woman. And the Tubal Reversal is only a single way that can help you to recover quickly from these effects.

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  14. notify me we can as a group can go forth with solving this problem ......312 672 9797

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  15. I got a tubal done 3 years ago. I have had issues ever since. Extreme headaches for days, back pain that feels like labor, messed up periods, back pain that feels like ive been punched in my kidnies, heavy bleeding, clots, bloating,horrible mood swings,exhaustion and weight gain. Im sick just about everyday. It seems to get worse every year. In september i had to have surgery to remove one of my tubes due to a 5.2cm cyst. Just this week ive felt so horrible that i took pregnancy tests because things are so bad. My primary put me on Phentramine to loose weight and thats not helping at all. My obs ignore me, tell me its no big deal. Tell me to gonon birth control and take ib for the pain. Im so tired of feeling like this!

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  16. Finally I've heard someone with the same issues after having their tubes tied. I had mine done in 11/2011 a couple of weeks after giving birth. My period has been so crazy since then. I've gained 60+ lbs which is really bad due to I'm already overweight. My lower back is constantly in pain and I can't stand or walk long due to the shooting pain in my hip. My hair falls out in clumps and my nails are a joke. I seen a Dr but he told me my pain was from ovulation. My old Obgyn has retired so unable to see him. I've had to add Iron pills to my diet due to heavy periods. I so want to have a reversal done. My insides feel as if they're being ripped out at least 6 months of the year. I don't even know what to do anymore.

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