(To read the original post on PTLS click here. And then the next one is here.)
Disclaimer: I am not a medical professional. This is not medical advice. I cannot give medical advice and don’t claim to have all the answers. I am simply a woman telling the story of her experience after tubal ligation.
If you are considering having a tubal ligation, PLEASE do thorough research. Get your doctor to openly talk about what they’ve heard about post tubal menstral flow and what it does to hormones after the blood supply is cut off to the ovaries. In some women, this appears to cause major problems, including me.
A part of me wishes no one had ever come up with a name for what can happen after a woman has a tubal ligation. (Post Tubal Ligation Syndrome, or PTLS.) Calling the symptoms anything that sounds medical makes doctors roll their eyes because it’s not in a diagnostic book of any kind. There aren’t medical studies done to prove its existence and therefore the medical community denies PTLS. And yet, when I take the time to look at where people are coming from when they end up on this blog, I see that the majority still come here after searching symptoms they are having after a tubal ligation on Google. I receive several emails from women who have done just that every single day.
I keep these emails in a separate folder in my gmail. There are hundreds. Lately, the questions remain the same and the stories are very similar, but the difference is that because two years have gone by, many are asking me if I’m still interested in talking about this, since the posts are so old. Then they ask if I’ve found any answers.
Yes, I’m still interested in hearing your stories.
No, I haven’t exactly found the answers.
BUT, I do want to bring some hope to those that are landing here because they have gotten fed up with their symptoms and finally googled any possible link to tubal ligation. They feel so anxious and depressed and they had a gut feeling they should look up any correlations. Or for the woman that can no longer leave the house during her period because of how terribly heavy it is.
Friend, I know you’re so tired and so confused about what’s happening to you. Please read my first post about all of my symptoms and the next follow up post. What you are reading now is the latest post about PTLS.
What’s happening for me now?
I continue to meet doctors who shrug off the confidence I have that having a tubal ligation was a mistake for me. I continue to have no doubt that my symptoms, including anxiety, increased depression, skin changes, very heavy periods, digestive changes, etc. are due to my hormones changing after my tubal ligation. Basically, having a tubal put me into early (and total) menopause. Just as different women respond to menopause differently, different women respond to the hormonal changes a tubal ligation causes differently. Some women don’t notice much of a change, but many do.
I continue to manage my anxiety and depression with low doses of medication. It helps, but it’s kind of like taking one Ibuprofen for a really bad toothache. It only takes the edge off. Aside from that, here are some things I’ve heard have worked or things I have tried myself and found some relief:
Tubal reversal – I have not had a reversal, but some women report great relief after a reversal. Other women have this (expensive) procedure done and find it doesn’t help as much as they’d hoped. There are not a lot of doctors who will do reversals. Many do not believe it will help.
Uteran Ablation – This procedure is used to treat dysfunctional or abnormal uterine bleeding.
Hysterectomy – a partial or total hysterectomy often helps some women’s hormones to become more balanced. For other women, it makes the imbalance worse. (I know, so tricky!)
Natural remedies – Heading to the natural health store for hormone creams or supplements that help regulate hormones has helped many women.
Hormone replacement – many women report that using Hormone Replacement Therapy has been helpful. This can be done with oral supplements or creams/lotions.
Dietary Changes – overall health changes can improve the symptoms of PTLS. Many women who have changed to a healthy diet report lessening symptoms of anxiety and depression, less fatigue, etc. Just like any other condition, it helps to be as healthy as possible to feel the best you can. The same goes for exercise, of course.
NovaSure – this is a relatively new procedure. Women are reporting excellent results with their previous heavy periods. It’s an option for ablation that is said to be fast and easy. *Updated to add: I’ve heard that there are some issues with this procedure. At least one study is being done. I can’t speak for anyone else and don’t know exactly what the problems have been.
Coming to terms – It helps me to simply take a deep breath, forgive myself for not doing more research ahead of time and then to let it go. This sounds impossible, I know. But it gets easier with time. I can’t go back to change my decision. I can’t change that the doctor didn’t tell me any of this was possible. Now, because I can’t do anything medical about this at this time, I accept my symptoms and do my best to live with them in peace. It’s hard. Taking medication for anxiety and depression is hard. Having itchy skin and other random hormone-induced issues is hard. It’s cliche to say it, but it could be worse. So I have my hard days and I ask for help. I take better care of myself. I talk to people who care about me and I simply keep moving forward. It helps a lot to keep other women informed, and so I do.
Sadly, having negative symptoms after a tubal ligation is not taken seriously by many in the medical community. Therefore, most doctors feel no need to warn women of what so many other women are reporting after having one.
I understand that there are no studies proving these correlations and I know that for many women, frustration with symptoms after tubal ligation can be related to many other conditions, or due to a psychological trigger connected to regretting having had a tubal ligation.
BUT, for many of us, who feel good about our decision to not have more children and have no other conditions, women who know our bodies, have good insight and understanding of why this is possible (hormone changes), PTLS is real. That said, it’s real for anyone who is struggling. It actually doesn’t really matter if there’s scientific proof. If there are SO many women reporting these exact same problems, it’s my hope that the medical community will start to get honest with women considering tubal ligation.
The honest truth, after a woman asks, What are the possible side effects?
Here’s a response to that that would really help women:
Well, the only thing we know for sure through studies is that having a tubal can make your periods heavier, and there’s still a very small chance of pregnancy. Other than that, many women do report an increase of anxiety and/or depression, possibly due to hormonal changes after the blood supply to the ovaries is cut off. The medical community still believes that tubal ligation is safe and effective and most women don’t have trouble with hormone changes, but since some women feel strongly that they became pre-menopausal after having one, I thought I should tell you. Please remember, you can’t believe everything you read on the Internet. It is not all accurate, but I’m happy to talk with you about any research you do on your own.
INFORMED decision, huh? Wouldn’t that have been nice?
I wish you all the best, and if you’re here because you’re struggling, I’m truly sorry. If you’re here because you are considering tubal ligation, I am not here to tell you NOT to have it done. As I said, I’m not a medical professional. I’m a woman telling the truth about her experience and I hope it helps you like it would if you heard this over coffee with a friend.
Peace.
COMMENTS ARE NOW CLOSED ON THIS POST. FOR MORE INFORMATION PLEASE SEARCH “THE NEW PTLS GROUP” ON FACEBOOK.
{ 20 comments }
Heather,
I know several women who have had ablation surgery, and they swear that it was worth every penny. ((you))
thekitchwitch recently posted..Cheater’s Lemon Pound Cake
Heather,
I didn’t know any of this…no clue. I had my tubes tied maybe a year ago or a little more….when my hernia after pregnancy w/ Piper recurred AGAIN…so I got that done at the same time they repaired my hernia.
I had no idea it could cause issues w/ my depression/anxiety, etc. Obviously my docs didn’t go out of their way to inform me, but all I knew was that I couldn’t handle 3+ kids and my husband refuses to get snipped…and I got pg w/ Piper DESPITE PCOS, conceiving my twins via IVF, and being on the pill to keep my hormones and cycles in check.
Whoa. need to go back and re-read your previous posts on this.
Thank you.
erin margolin recently posted..Rumor Has It, Vol III
I’m so sorry you are suffering through this. I know a few who have also had this procedure and they share your symptoms. Glad you are a voice for this. But, I’m sorry it had to be you!
Thank you! You. Are. Amazing! Yes, PTLS is so very real to those that are suffering through it, but you have given hope to so many of us. Women, like me who didn’t have a clue as to what it was before your original post. :)
I have had some depression/emotional issues since mine but how would I know to attribute them to this because I had some of those before my tubal too. It’s all so…. HUH?
I haven’t really had any issues since mine but you are right, it is up to each individual to do the research, etc. I know I did not do a lot before I had mine done either. I feel badly for those who have so many bad symptoms after. Ugh.
Elaine A. recently posted..A picture, a thousand words, you know the saying
I had my tubes burned on August 12, 2013 at age of 34. I have two children 3 1/2 son and 23 months daughter. 2 days after the ligation, I started feeling nervous, in raged, anxious, severe chills and hotness and wasn’t able to sleep at night times. 3rd night from the ligation, my husband took me to the ER, the ER said all my blood work came normal and urine too. I told him, Ive never had these weird problems in my life, and all this is after the ligation. He, Said it was a possible a reaction to the anesthesia. So, I got back home with Ativan (Lorazepam) and antibiotic. When I got home, I called my OB/GYN, she scheduled me to see her. At the appointment, she claimed that there shouldn’t be any symptoms other than abnormal period, and that my hormone should not be affected. She also claimed that PTLS doesn’t exist and to stop going on the internet for answers. She took my blood for hormone level and in 3 days she called me said everything was normal. She told me to seek a primary doctor and therapist, because I told her I might have made a mistake that I wanted more babies in the future. I said, it’s not the issue, I know in my gut, that the ligation has changed me for the worse. I have looked online daily for answers and have discussed with my husband, that when we have the fund, I wanted to get the ligation reversed. I have found two doctors, Dr. Mor and Dr. Berger, I’m not sure which I want to go to eventhough Im in CA.
Heather,
I can’t thank you enough for doing this follow up post! As a PTLS advocate and Support Admin on facebook I can’t tell you numerous stories that flood the boards that all come from around the world…different women but only one thing in common, a tubal ligation.
I do hope that you will find your answers soon so you too can “find your former self” or as we say in the support groups, be on “the other side” because for many the suffering will get so bad at some point that spending the money is less of a gamble than living with the symptoms. I know I was one of those! My pains were there from day one. It wasn’t until a year later that I stopped listening to my doctors that it could be scar tissue forming, or nerve damage and I finally turned to google. Your original blog along with other women’s are what lead me to the conclusion that I HAD to take the risk because falling into the floor while walking just wasn’t “life”….at least not one I was willing to accept easily. I finally made the call and I live my life PTLS free. Because of my blessings I became an advocate to support others to find THEIR answers as to what is right for their family. Tubal removal or hysterectomies have also been reported by many women to alleviate PTLS symptoms and insurances pay for those if medically necessary. SOME insurances will pay for REVERSALS as well!!! You must contact your provider and ask if they cover fertility options! Many women do not know this and don’t know to ask. They feel so elated that they finally have a name for what they are going through but so defeated that they can’t afford the surgery to “fix” anything. There are options and I highly recommend any lady that suffering from this condition do a facebook search for Post Tubal Ligation Syndrome or just follow the links on my blog. THOSE are the groups that I am associated with (there are some groups on facebook that I’m not in agreement/affiliation with although they are PTLS).
Ladies I urge you to hold your head high and keep searching! I have several documents/studies rounded up and put onto our educational page on facebook that show there are issues after tubal ligation. Yes doctors still like to snub their nose at it however with the help of Chapel Hill I hope to change that with further education programs! (I do NOT get paid to work with or mention them, they are the doctors that did my reversal and the only doctors I’ve found that are respected and educated enough to educate the public in an honest fashion on what we currently have on the topic of PTLS. Like Heather said, there has NOT been a specific study to PROVE PTLS but the doctors there believe in it because of success stories such as mine and others).
Again, many thanks to Heather for taking time out of her busy schedule to write this follow up. You have no idea how respected you are in our “community” since you have such a “large voice” and it’s truly an honor that you would take the time to do this!
Thank you from the bottom of my heart as well as every other woman that will find this renewed post and realize the issue is still very real! We need a spokes woman…the door is always open girl! ;)
Amy Kat recently posted..There is hope!
I was finally diagnosed with PTLAS, Post Tubal Ligation Ablation Syndrome October of last year. The NovaSure ablation isn’t as all it was made out to be. I developed severe adhesion’s that even twisted and killed my right ovary ( during my hysterectomy they found my right ovary back behind my uterus), the pains were extreme, I had enough trapped blood inside my uterus that made it the size of a 5 month pregnant woman, my hair fell out, I had metallic taste in my mouth from the Flishie clips, I had scar tissue where they were slowly cutting into my intestines and along with twisting my guts around they were being twisted downward as well. All of this almost cost me my life, the pain was so extreme it made me severely depressed to the point I was contemplating suicide.. When I had my hysterectomy back in January the doctor informed me that the top part of my uterus was actually burned & fused to my intestines because of NovaSure. There are many reported complications out there on this, many are severe infections, perforation of the bowels intestines and uterine wall and trapped blood between the uterine wall and scar tissue caused by the global burn. I wanted to share with you all what the ablation and tubal ligation did to me, it’s your choice to have it done but everyone needs to be informed about the destruction from both.
I have a follow up apt this morning with my gyno, who suggested the NovoSure on my last visit. I was given a pamphlet that only highlighted the “what to expect” after the procedure. He, nor the pamphlet, has explained any of the risks associated with ablation, and I’ve had to search myself. Thank you for reminding me of the risk to my other organs, as I’ve been wavering back and forth on whether or not to risk it – I suffer from 3 weeks of periods every month (and I’m on birth control pills, which I only take to control my menstruation). I’m at my wits end. And by the way, I had a tubal ligation in 2000 and have also had bizarre symptoms since then – increased allergies, intestinal issues (celiac, IBS), severe/crippling pain on the right side during menstruation and about mid-month , and I’ve also had anxiety issues and had to be medicated. Reason I am writing is that I wanted to thank you for posting this, and reminding me that there are risks to other organs. I’m already broken, and I don’t want to risk any other organs getting damaged.
Wow, suffering the same. Excruciating pain on the right with menstruation and ovulation and bowel issues. I suspect I have a trapped nerve or some nerve involvement loosing muscle strength in my right hip and thigh. Crazy stuff, I just had a CT showing “nothing wrong” I too had a Tubal Ligation in 2004 with a severe episode of pain in 2007 being admitted to hospital. May get an MRI next just to see the right hip and groin.
Hello, Thank you so much for sharing and creating this website! I am 31 years old and had a tubal ligation done 12-28-12 immediately after my c-section. The doctor never explained discussed anything about the side effects after the tubal. He asked while I was lying on the table if I wanted a tubal. My husband and I have 4 children total. Two together and he has 2 from a previous marriage. I thought I was making the right decision for our family. I regret not researching before the procedure.
My life is not the same. I have very irregular heavy periods, bad cramping near my ovaries, mood swings, depression, headaches, skin changes, oily hair, and acne . I am miserable and very upset that all this could have been prevented. I would much rather have a 5 child than to deal with this. Birth control is a much better option. Please can someone give me some advice of what I can do or is there anything I can do?
Thank u
Hi Kristen,
As an RN student we are taught about law and what is legal practice of “informed consent.” There are laws that protect patients against making decisions “rashly” or feeling coerced into doing something because you are cut open on a surgical table! To have a tubal ligation you should have legally signed the papers at LEAST 30 days ahead of time giving permission (This MAY vary from state to state so you will need to check however unless it was an emergency situation you should have had time to THINK about the decision before having it done) and you would have been explained the risks (albeit not entirely forthcoming but at least something, not just if you want it). Personally I would contact a lawyer if it were me and seek support from the ladies in my PTLS support group if you are struggling with your symptoms. Support is key to coping.
Amy Kat recently posted..There is hope!
I wanted to email you, but for the life of me I can’t find your email address on here. My story is a long and miserable one so I’ll just share the highlights. I had mine cut and burned in 2008 during the c-section of my 3 child. The only thing I noticed was the heavier period and the painfull cramps and major night sweats. I grew up in a family that owns a compounding pharmaceutical company so I knew I needed to have my hormones checked. After the results of my saliva test all I needed I was a little progesterone. Than in late 2009 I had my eptopic pregnancy after two surgeries they finally got it and removed my right tube and even redid myleft side just to be safe. Ever since I have suffered from sinius problems, depression, anxiety, hives right before my period, having problems remembering things, mood swings and always feeling sick off and on. Flash forward to now. Last week I get a positive pregnancy test. I think to myself “no way” even though after having 3 children and ectopic I know I am suffering from all the symptoms of early pregnancy, but still I only have one tube that supposedly has been tied twice. So here I walk back into the obgyn who I am sure at this point I am absolutely his least favorite patient ever. He does his urin test which came back negative as says “I really don’t think your pregnant, but with you lets not take any chances and do a blood test.” After a miserable wait do to labor day weekend I get a call and he says “my hcg level is low and lets hope whatever is going on it passes on its own. ” really? So I call my gyno and explain everything to her. Now I go in tomorrow for more testing. I have no doubt that my tubal ligation is the root of all my problems. I have been saying it for years. I am truly happy with my three beautiful healthy children, but I regret with all my heart having this procedure done. I feel it has held me back from being that fun get up and go mom I use to be.
Hi I’m 48 …I had a child at 38 at which time I had tubes cut and tied …since then I’ve had severely painful periods pain after sex and lately for the last three to four months ive had a period every two weeks very heavy bleeding have to use super plus tampon and full pad and still bleed thru my clothes terrible sweats day and nite…very emotional and tired thank you
Hi I’m actually scheduled to get a tubal ligation 9/20/2013 but thanks to you ladies and other research I’ve done on the internet, I will be cancelling my procedure. I have four children and me and my husband feel as though we are definitely finished. I’m contemplating getting an IUD as back up birth control and using condoms for now on. This all sucks and I will definitely keep you ladies in my prayers. My mother just had an hysterectomy this year because of a tubal ligation. She had two tubal pregnancies last year, heavy bleeding, and severe period cramps. She got a tubal at 20 years old after the birth of my youngest sibling in 1989 and her problems didn’t start surfacing until she was 44. She is also warning me to go with another form of birth control. Thank you so much for this side. You are definitely being heard.
Erika,
I truly hope that the IUD is working well for you but do your research on it as well. It too can cause the same side effects of PTLS :( When I was going for my reversal I searched all forms of non hormonal birth control because I am done having children, however when I came across several blogs and forums of women complaining of the same symptoms I was trying to recover from my tubal I decided against it.
I truly do not mean to be a negative nelly and wish you all the best! These however are things that your doctor will fail to tell you and in all my research I’ve gathered a wealth of knowledge I try to share with women daily to save them the horrors I went through. I hope you’ve found your answers and all is well but please do not hesitate to contact me if you need more information.
Amy Kat recently posted..There is hope!
I am so angry with the medical world for not informing me. My life was actually starting to get better before this stupid procedure ruined my life! DON’T LET YOUR LOVED ONES DO IT!! That’s all I can say… BEG them not to!!
HELP PLEASE!
Hello everyone,
I need help! My story is very complicated so I am going to give all of you the highlights of my story:
08/27/2012 I had my right ovary removed due to a cyst. The operation was successful but of course left me with a ovary….
Two months later I was diagnosed with a rare autoimmune disease called Behçet’s disease, started medications immediately (heavy meds) and after a few weeks my other issues were starting to go away… I only had one period since the ovary removal then in December of last year I found out that I was pregnant with my third child, needless to say I was shocked but happy… Because of the behcets my perinatal doctor recommended or more like coerced me to tie my tubes at the time of the cesarean, which I did on 08/06/13, since I have been having just about every symptom of PTLS with the exemption of menstrual cycles, I mean none whatsoever and I was breast feeding with great success but my milk dried after only two weeks nursing, pumping like a mad woman..nothing helped my milk supply.. And my two older kids were on the breast only for 10 months each! After that very strange occurrence I started to experience hot flashes, anxiety, trouble sleeping, dry skin, I cannot shed a pound, night sweats and worse of all vaginal dryness and a bizarre change in body odor… I think you know what I mean..
I believe the blood supply to my ONE ovary was either severed or badly compromised.
What I need help with is…
I read all I could find but I can’t find anyone that only has one ovary.
I have a Dr.s appointment tomorrow and I am so angry because I am sure that my doctor was negligent during the TL ( which by the way PTLS is the doctors fault and their fault only).
Now I am 31 years old probably suffering from early menopause and I can’t help but wonder what can be done to help me and also I was not made aware of any possible complications and honestly I want to know if anyone know about the legal ramifications of my doctors actions…
Please understand that I am not a law suit happy person AT all..
My appointment is tomorrow where I intend to confront my doctor about this.
Please help me!
Roberta
I wonder if the website progesteronetherapy.com might help someone suffering from PTLS – it’s a VERY informative site. If you type in “tubal ligation” it brings up many hits with information.
Hello everyone, I’ve been having the symptoms of PTLS for 6 years now. At first I was told it wasn’t hormonal and to drink more water. The doctors look at me like I’m lying and was referred to a psychologist for my anxiety. Anxiety is my number one symptom, it has taken over my life. I have anxiety while driving, especially on the parkway and places I don’t drive often. I’ve never been a stressed or nervous person. So I’m relieved I’m not the only one goingthrough this.
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