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Thank you Sabrina for sharing your story. My sister also had a TL and is suffering from Osteoporosis at the age of 29. I am terrified that this will happen to me because I am older than she is and had mine done first. It also further convinces me that my tooth decay could be a contribution of PTLS, even though I haven't seen that as a symptom. Before my TL, I lost one tooth and the rest were fine. Since having it, I have a total 18 teeth left out of the 29 I had when I got the TL. I had my wisdom teeth cut out when I was 17, almost forgot about those. I am seriously considering having a bone density test soon because of reading this, and the fact that my sister is suffering at such a young age.
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Hi Sabrina, I so know where youe are coming from. In my case all doctors just dismissed the idea of PTLS and insisted it was just the result of getting older. Even though it happened very soon after the TL they just did not want to know. When I went to see one doctor to ask about reversal he even said it would make matters worse. Dr Berger found this quite incredible and just shook his head when I told him. I wish you good luck with your reversal and if I am anything to go by you will feel much much better fairly soon after your TR
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Hi Sabrina, I so know where youe are coming from. In my case all doctors just dismissed the idea of PTLS and insisted it was just the result of getting older. Even though it happened very soon after the TL they just did not want to know. When I went to see one doctor to ask about reversal he even said it would make matters worse. Dr Berger found this quite incredible and just shook his head when I told him. I wish you good luck with your reversal and if I am anything to go by you will feel much much better fairly soon after your TR
That is fine with me and I am sure the other women here will let you live through them also until you can get your surgery. Save, save, save and try to scheduale a quickly as possibable. I can't wait until Monday. I will let everyone know how I am fairing after.
Thank you so much for sharing your story. I understand completely having experienced similar symptoms and similar responses from dr's. It is so frustrating and after a while, I did start to think it was in my head. Until I found this site! I have only dealt with PTLS for a year so you must be a very strong woman to have put up with it for so long. Good luck with your TR and I look forward to hearing about your recovery. (I haven't been able to schedule my surgery yet so will live vicariously through you for a while if that's okay! ).
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Sabrina, reading your story was like hearing my onw over again in my head. If you have not read the PTLS blogs from last year I suggest you do so..The stories are so similar. None of this is in anyone's head. PTLS is painfully real and most MDs do not believe in it. If men could get it then I am sure we would have widespread knowledge about it and an act of congress for insurance coverage for TRs to fix it (lol). The more of us who spread the word, the more women who might reconsider having a TL (I have already talked several women out of it simply by telling my story to them and telling them about this board if they want to see for themselves the number of women it affects). I tell every doctor I go to about it too.. I figure they might think I am nuts but what can it hurt, right? So many of us have been down that ugly scary road only to come out whole again after the TR. Good luck with your TR...
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Hopeful1970 I totally knowwhere you are coming from because I am going through PTLS now and looking to have TR in Jan.or Feb.2010 it is terrible its devasting to know the suffering and pain that the side effects of TL can bring in your life including marriage.It feels good to be able to do something about it by having the TR to help get your life back.It is always good to read other women stories it lets me know I am not a alien despite what some doctors may try to have you believe I hope that you get much needed relief from this and wish you tons of luck with your TR Sabrina
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After thinking very hard about telling my story of PTLS. I have deceided that I should give my account of how things started for me.
I had my TL done in June of 1991 after the birth of my third son. Having my TL done, was a very high risk procedure for me. Because I had a very good chance of bleeding out on the operating table.
At the time, I was on a very high dose of Coumadin (Blood Thinners), 3 times a day. The very next day after giving birth to my son. I developed a very bad blood clot in my right hip. It had me bed ridden for 2 weeks. It was discovered after, I was unable to get up out of my bed to walk to the restroom. The pain from it was very severe. I would have rather gave birth to my son a second time than to feel this pain.
While in the hospital from the birth and to clear up blood clot. At the start of the treatment. Nurses were drawing blood from me in places, I did not think blood could be taken from. This was done, once every hour for the first 4 to 5 days. After getting out of the hospital. I had to continue to have blood drawn every other day for the next year and a half. Before the doctors finally took me off of the blood thinners.
I had never been so scared in my life as to be told that if you move. The blood clot could break free and it could do one of three things. At the top of the list was kill you, or cause a severe stroke that could either kill you or parlize you or it could get lodged in your lung. Then they would need to remove part of one of my lungs. I cryed for days wondering if I was going to leave my three kids without a mom. So two weeks go by. No problem, 5 months later, I am getting a TL. Because I do not want anymore children. So I thought.
TL surgery comes and goes...
About a month after my TL. I am taking a shower one night. I am washing my hair. I run my hands through my hair to get the conditionor in my hair really well. What does contionor do? It gets out all of the knots, Right? I pulled my hands out of my hair and I had huge masses of clumped hair in my hands. This was more then every day shedding of your hair. This was more like chemo therapy type hair loss. Within a month my hair went from a ponytail the size of a baseball bat, down to a ponytail the size a little bigger than a pencil.
Then I noticed that my nails were starting to get really thin, breaking and splitting all of the time. Sometime that in itself will be very painful. I started years ago to get a fiberglass overlays done on my nails to get relief from the breakage and the pain from the breakage and splitting.
Then came the very bad Ovulation Pain. Pain so bad that it would drop me to my knees. And remind me of being in labor and needed to breath through it as if having a contraction. And having periods, so bad that I will go through 2 boxes of tampons and a large pack of pads in 7 days these are also accompanied by huge blood clots.
Heres to never needing AC again during the day. At night a total different story. Almost 100 degrees outside and your teeth are chattering. With people looking at you like you have completely lost your mind. Because you have on a shirt with long sleeves, in the peak of summer because you are cold.
At night I have the AC just about as low as it will go. Freezing poor hubby and kids out for years, before hubby even came into the picture. Because I am having night sweats so bad that every 6 months or so I have to buy a new mattress. Because the night sweats have destroyed them. Not to mention all of the night of interupted sleep. Sleeping for about an hour and half. Getting up for about a half hour to a couple of hours. Because you can no longer sleep.
Then here comes the major problems of fatigue. Where you are completely fine one minute. Wide awake ready to get your day going. Ten minutes later crash so hard, you have no choice but to take a nap for an hour or so. Because you can not function any longer. This some times happening 2 to 3 times a day. This is not including the times that you feel so worn out that you sleep for 18 to 24 hours. I have done this also.
Or how about growing a mustach that requires you to pluck, pull or shave at times. This includes the chin at times also. Because your hormones have gone completly crazy. That you are required to take hormone replacment pills at different stages in your life because the have gone nuts on you.
Not to mention the bouts of depression, bouts of anger for no reason. Or just out right crying for no reason at all. Anxitity that either makes you paranoid, scared that your life is going to end at that very moment or making your heart race like it is going to jump out of your chest at any time. Sometime you are so aggervated by it all that you can no longer bring yourself to even smile at someone.
Here is the biggest problem. I find that I can not stand to live with any longer. Memory loss. Imagine sitting in a chair and your body says ok lets go pee. You are like. Ok! I am all for that. By the time your bladder sent that message to your brain and you had the thought to stand up. By the time you gotten to your feet you have already forgotten why you stood up to begin with. You stand there looking around because you believe that you have just lost your mind. This has happened to me several times.
Or not being able to have a single complete thought at times. Sometimes you are sitting there thinking about things or trying to. And your thoughts are in high speed and you can not slow them down to capture a single one of them. At that point you feel like you are going insane.
The list goes on and on for me. Loss of balance at times. Just standing in one spot talking to someone. And you can feel yourself starting to fall over or just walking along. My husband and my kids have had to catch me many of times to keep me from falling on my face.
Crawling skin. The feeling that your skin is going to crawl right off of your bones. Being told at the age of 25 that you have the start of what looks like Osteoporosis. So you have to take high doses calcium every day just to stop the start from starting. Loss of sex drive and other things that comes with it.
As I said the list goes on and on. And everything hit me all at once, starting at 3 months after my TL.
When these thing were brought up to my doctors right after they started. I have been told many things. This one was really funny. Imagine being 21, 22 years old. You notice all of these different things going wrong with you. Things that you know just are not right. This just is not you at all. You were always happy smiling. Nothing could ever bring you down. Then all of a sudden you are smacked right in the face with this all at once, just out of the blue. You go and talk to your doctor. Because you know this isn't you. He looks at you after you tell him what is happening and he says to you. You are going through menopause. That was the first time.
The last time I spoke to a doctor about these things. He had the nerve to tell me that it was all in my head and that there is no way in this world that I could possibly be depressed.
You can not even begin to imagine the things, I wanted to do to that doctor that day. If I had witches powers that day. I would have wished this doctor to have 20 times worse symptoms than I had ever had. Just to prove my point of PTLS's exsitance. At that point, I would have looked at him after it hit him all at once and gave him back his very own words. "It is all in your head".
I know that is a mean way of looking at things. And I am sorry for that. But you tend to get put off after years of people not believing you or believing in you. Because they know your body (so they say) better than you do.
I am sorry this is so long ladies. But I thought my story and my personal battle with PTLS should be known. If nothing else. It has made me feel better just to tell it and to get every thing off of my chest. After fighting for 17 years to just get someone to listen and believe that it is real.
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