I have found that to be the case when sharing these things SO often! I have talked with so many ladies from church and just other friends, and either they-or their mothers/sisters have had terrible PTLS since TL, and had NO idea it was because of it. Many of them thought something was related, but many went on to have ablation or a hysterectomy!
If you can imagine how long TL's have been going on, and how many women have had at the minimum, heavy and painful AF (which my doc told me WAS a possible side effect) and the maximum had enough symptoms to desire medical intervention, that number must be astonishing!
Momzilla,
Thanks for continuing to be a champion. I had my TR on 7/30, and I have not had a 6 week period without headaches/spotting/cramps, etc., since before my TL 3+ years ago. This is amazing, and it IS proof positive that the heavy bleeding and other terrible side effects were side effects of a TL, not a neurotic feminine imagination.
posted
I have written to several people (Oprah, medical correspondent directors at networks like CNN, ABC(Sanjay Gupta, etc.) I will keep doing that and spreading the word to anyone who will listen until someone actually does something. I am next looking into some of the medical based channels like TLC or discovery health, etc. The more these places hear about it the more likely they will be to actually look into it. It is not medically accepted norm and therefore, you will see few major players come out and want to stick their necks out in support.. with insufficient hard medical statistics to back up what we all know..That being said, however, I still plan to fight the good fight...On goes my cape and the adventures of Tubal Girl are...to be continued..
May the ones post TR continue to improve and get their lives and health back and to those of you yet to schedule..may you find the resources, time and ability to get your TRs and begin the healing process. Know that you have our support no matter what!
posted
It is so reassuring hearing more stories because I know for me I still struggle with the fact that this is real. I know it is but I still sometimes can't help thinking I'm nuts!!!!
posted
I just wanted to chime in here too. At a friend's place a couple of weeks ago. (She is 51, I am 40. I had a TL 2.5 years ago she had a TL in her mid-30s). I was telling her about my PTLS and she said, "OMG, I had that too after my TL and I had no idea what it was, she ended up an emotional and mental wreck, gaining lots of weight and going on thyroid meds and having her gall bladder removed." Then she said that a friend of hers who is the same age and had a TL done after her childbearing was done made this comment the other day, "I have already gone through flashes years ago and now I am having them all over again?"
I have spoken personally to only one Dr. who says that all the data is available that supports the existence of PTLS. He is the director of a lab that does saliva hormone testing. The interesting thing is that I have managed to "treat myself" with regard to the flashes by doing a radical change in my diet (drink lots of rooibos tea and other herbal teas, no caffeine, no simple carbs, lots and lots of raw greens, lots of omega 3s-I eat a can of sardines a day and I take lots of nutritional supplements including more omega 3s, as well as eat Xocai chocolate) It is boring except for the chocolate This also has helped with my cramps, I am still in some pain, but I didn't even have to take ibuprofen with this last period. But it has taken me eating like this for 3 months for it to make any real change in my body. This little experiment in my dietary adjustments has made me aware of the importance of being sound nutritionally before heading into menopause. I also think it will make the restoration process much easier if/when I have a TR.
BTW, you gals who have PTLS. Have you written Oprah to tell your story. I have done it and so has Momzilla. I would suggest this is a good way to get the word out. If they get enough of our stories at the Oprah show, someone is going to start investigating.
My husband will be glad to hear that. It's also good to know that some of your symptoms with cramping etc went away. I cramp everyday with lower back ache. Can't wait to schedule my TR.
posted
I can't say that I suffered from PTLS but I do know that my periods were very heavy and lots of cramping that I never had before. I had my TR June 3rd and my periods are a lot more comfortable. I was back to no cramping after the first month and my sex drive went crazy immediatly. I never had a problem with my sex drive but I felt like I hit my peak after my surgery.
posted
Hi sweet mommie Yes, i do agree with you. When i found this web site and realized i was not the only one, i was so angry with my doctor. Even the doctor after her didn't think it was real and was just happy to put me on meds, antidepressants and send me on my way. Boy would i like to go to her office now. I switched doctors though, so I won't, but maybe one day I just might. Glad you ladies are all here, even my mom couldn't understand and she had a TL.
posted
I second that. I just wish that drs could sometimes think outside the box. Not everything is textbook. Look how long it took to accept fibromyalgia. Those people suffered like we are now. We definately need to spread the word that this is real.
posted
Until someone has walked a mile in our shoes and until doctors truly start hearing from paitents that this is linked to the TL and see the imrprovement in symptoms (that cannot otherwise be explained)..we will continue to get well-meaning but misguided advice from EVERYONE out there who "knows better". We should create a PTLS bumper sticker to give out that will cover both friends/family and doctors: How about "It is NOT in our heads and stop pushing MEDS"
posted
Absolutetly!!!! I saw my ob last week for my yearly and discussed this with her. She felt really bad that I was going through this but she was trying to chalk it up to other things. She even mentioned post partum depression. I asked how long after having a baby can you diagnose this. She said 12 months. My daughter is 17 MONTHS. PLEASE!!!!! I was never depressed before and she knows me better than that. She told me to have it done and if all of my PTLS symptoms went away, she wants to write a paper on me!???
I'm glad we have each other because even my sister thinks I should try meds first. I told her that she just doesn't understand. Why would I go on meds if there is a surgery that can hopefully correct it?!
posted
Well yesterday I was in my ob office and I asked one of the staff had they heard of ptls and she said no. So exactly how much of the world knows about this and how long will it take to get the word out? I personally think that the side effects should be told to every patient before giving them the option to get a tl. Does anyone agree
posted
This is a common complaint of many of the women who have taken part in Dr. Berger's PTLS Study. Unfortuately, there are many complaints of various undesirable symptoms which women have endured after their tubal ligations. Hope that someday other doctors will recognize PTLS as a real concern. Sally,RN
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This also has helped with my cramps, I am still in some pain, but I didn't even have to take ibuprofen with this last period. But it has taken me eating like this for 3 months for it to make any real change in my body. This little experiment in my dietary adjustments has made me aware of the importance of being sound nutritionally before heading into menopause. I also think it will make the restoration process much easier if/when I have a TR. ![[Kiss]](graemlins/kiss.gif)
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