RKay
07-07-2006, 01:06 PM
Kindof new to all of this. Had a hysterectomy, would love to talk. Did this wrong last time. Never saw my post. So before I say anymore I am going to see if this works firt. Hey it works. So with that taken care of. Here goes. I want to talk to anyone who has had a total vaginal hysterectomy and is now experiencing fibromyalgia symptoms. I have done alot of research. Like to share, like to let you know what I suspect at least with me anyway.Looking for answers of course. I am 52, 3 weeks after surgery and doing great except for leg pain,( burning, aching). Anyone else ???
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elmhar
07-07-2006, 02:48 PM
Hi RKay,
I'm kinda butting in here, haven't had the surgery, but am postmenopausal. May I ask you to clarify -- there's all sorts of confusion about hysterectomy terminology -- you had your entire uterus removed, correct? Did the ovaries go too?
Are you on any sort of estrogen replacement? I ask these questions not to be snoopy, but because anything that alters hormonal function has potential to trigger fibro-like symptoms.
Best wishes.
I'm kinda butting in here, haven't had the surgery, but am postmenopausal. May I ask you to clarify -- there's all sorts of confusion about hysterectomy terminology -- you had your entire uterus removed, correct? Did the ovaries go too?
Are you on any sort of estrogen replacement? I ask these questions not to be snoopy, but because anything that alters hormonal function has potential to trigger fibro-like symptoms.
Best wishes.
meeeeelee
07-07-2006, 04:12 PM
Hi. I had a complete hysterectomy 10 years ago, not vaginal tho. They cut my belly. I had never even put 2 and 2 together, but thats probably when I started having symptoms of fibro. I have to thank you for bringing it to my attention.:dizzy: I've also been on hormone replcement for 10 years. Anyone else in here had this kind of surgery???? and having fibromyalgia?
RKay
07-08-2006, 12:05 AM
Thank You so much for your comments. Now I will clarify. I started having menopause symptoms a couple of years ago. Most of my trouble involved pain in my back and my legs which I was told was being triggered by an enlarged uterus. After much internal debate I had the hy. I had my uterus, ovaries, & cervix removed. There is no incision on my abdomen, It was all done vaginally. I also had a bladder repair. Anyway....I had stopped taking hormones prior to the hyst. so I started my recovery by deciding not to take them. Wow!!!!within a week I was barely able to walk. My legs were burning, aching, throbbing worse than ever. I could not get any sleep. Horrible hot flashes. My g.p. talked to me once about fibr in one of our many visits before the hyst. I was always trying to find the cause of the pain, but nothing ever helped. Anyway in desperation I started taking the estogen the gyno had tried to get me take in the first place and now am starting to feel some relief. Have my fingers crossed. I really hope I am on to something here. Try to get " Screaming to be Heard", a book by Elizabeth Lee Vliet M. D. I have ordered it. I have read parts of it on line. This woman knows her stuff. Anyway hopes this clears up the vague post. Hope it helps someone. Let me know.
RKay
07-08-2006, 01:23 AM
I wrote a clarification for you. I don't see it yet. Let me know if you don't find it. RKay
spiritofsal
07-08-2006, 03:42 AM
Hi, just thought I'd put my 2 cents in. I had a total hysterectomy done when I was 26 years old; I'm 42 years old now. I had two laproscopy's done, and a stomach surgery before the hysterectomy to remove scar tissue but to no avail. Hence, the hysterectomy was done due to severe stomach pain, and my appendix was removed at the same time due to scar tissue on that too. These surgeries were all done within 5 months of each other. Needless to say, I do feel it took a toll on my body.
I had hip pain mostly, before all those surgeries. I was always pretty active in sports, social life, etc... Maybe I had more pain in other places that I was able to ignore I don't know, lol. My health did progressively get worse after that. I ended up having both my hips operated on as well. But I do feel that an accident I was in, in 1997, set off my fibromyalgia. I have not been the same since, and haven't worked since 1999.
So due to all my surgeries, have had more than what's listed, lol, and my car accidents, I feel is what triggered all my health issues. The way I figure it is, is that your mind, body, & soul can only take so much. I was forced to slow down then, and focus on other things. Still struggling some days, but I am a survivor.
Sorry to babble on, but if you want more input, just let me know. God Bless
Sal
I had hip pain mostly, before all those surgeries. I was always pretty active in sports, social life, etc... Maybe I had more pain in other places that I was able to ignore I don't know, lol. My health did progressively get worse after that. I ended up having both my hips operated on as well. But I do feel that an accident I was in, in 1997, set off my fibromyalgia. I have not been the same since, and haven't worked since 1999.
So due to all my surgeries, have had more than what's listed, lol, and my car accidents, I feel is what triggered all my health issues. The way I figure it is, is that your mind, body, & soul can only take so much. I was forced to slow down then, and focus on other things. Still struggling some days, but I am a survivor.
Sorry to babble on, but if you want more input, just let me know. God Bless
Sal
sleas
07-10-2006, 01:51 PM
Hi,
I am 36 years old and a year and a half out from a total abdominal hyster. Everything was taken out, ovaries, uterus, appendix because of a diagnosis of endometriosis. However, I believe many of my problems were from undiagnosed fibro. My gyno even wrote that in my chart. There were a number of things (moving, mom died, grandfather died) that happened emotionally to me for a two year period before having the hyster. I was looking forward to the hyster because everyone told me "you'll feel so much better after the hyster." Needless to say, I don't. There are days I don't feel too bad, but not as good as I felt 5 years ago. I am not on hormone replacement because of the endometriosis. I have an "official" diagnosis of fibro, but am not taking anything but Aleve and Advil PM for sleep. I think I could feel better, but I feel like a druggie always going to the doctor wanting to try something different. I think I would also feel better if I lost some of the weight I put on the past couple of years, but that seems to be a losing battle also.
I am 36 years old and a year and a half out from a total abdominal hyster. Everything was taken out, ovaries, uterus, appendix because of a diagnosis of endometriosis. However, I believe many of my problems were from undiagnosed fibro. My gyno even wrote that in my chart. There were a number of things (moving, mom died, grandfather died) that happened emotionally to me for a two year period before having the hyster. I was looking forward to the hyster because everyone told me "you'll feel so much better after the hyster." Needless to say, I don't. There are days I don't feel too bad, but not as good as I felt 5 years ago. I am not on hormone replacement because of the endometriosis. I have an "official" diagnosis of fibro, but am not taking anything but Aleve and Advil PM for sleep. I think I could feel better, but I feel like a druggie always going to the doctor wanting to try something different. I think I would also feel better if I lost some of the weight I put on the past couple of years, but that seems to be a losing battle also.
DP6505
07-17-2006, 12:21 PM
Hi,
I'm 42 years old. Exactly 2 years ago I had a total hysterectomy, removing uterus and ovaries, due to a pre-cancerous condition. Six months after that, in Jan. 2005, I began having a horrible headache which was 24/7 for 3 months. Finally the doctor put me on Flexeril which helped greatly reduce the headaches. I still have constant pain in head and neck, but ususally it's manageable. However, I get terrible migraines every 10-14 days and have to take Vicodin. While all this was just starting to occur, I began having terrible burning and tightness across my shoulders and upper back. After doing some research online, I began to suspect Fibromyalgia, which I told my doctor about. So my neurologist started me on Lyrica and Zanaflex in Nov. 2005 which has helped alot for daily living. However, she said she was no expert on Fibromyalgia and sent me to a rheumatologist. He said he wasn't convinced I had Fibro because I didn't have "widespread" pain! He never tested me for tender points either. He wanted me to try Estrogen for awhile, even though my GYN didn't put me on it because I smoke. The estrogen didn't do a thing, and I actually felt worse while taking it. I didn't go back to see this doctor because his attitude was so condescending. I firmly believe the hysterectomy caused my fibro, as I had never had ANY problems prior to this. Any suggestions on what I can do?
I'm 42 years old. Exactly 2 years ago I had a total hysterectomy, removing uterus and ovaries, due to a pre-cancerous condition. Six months after that, in Jan. 2005, I began having a horrible headache which was 24/7 for 3 months. Finally the doctor put me on Flexeril which helped greatly reduce the headaches. I still have constant pain in head and neck, but ususally it's manageable. However, I get terrible migraines every 10-14 days and have to take Vicodin. While all this was just starting to occur, I began having terrible burning and tightness across my shoulders and upper back. After doing some research online, I began to suspect Fibromyalgia, which I told my doctor about. So my neurologist started me on Lyrica and Zanaflex in Nov. 2005 which has helped alot for daily living. However, she said she was no expert on Fibromyalgia and sent me to a rheumatologist. He said he wasn't convinced I had Fibro because I didn't have "widespread" pain! He never tested me for tender points either. He wanted me to try Estrogen for awhile, even though my GYN didn't put me on it because I smoke. The estrogen didn't do a thing, and I actually felt worse while taking it. I didn't go back to see this doctor because his attitude was so condescending. I firmly believe the hysterectomy caused my fibro, as I had never had ANY problems prior to this. Any suggestions on what I can do?
elmhar
07-17-2006, 01:06 PM
Hi DP6505,
IMO, and that of some (not all) fibro experts, hormones do play a role in the pain that some of us (a subset) with fibro, experience. When symptoms come on after removal of ovaries, it certainly does make one suspect an estrogen connection.
I hear you saying that you felt worse on the Estrogen. There are a couple of factors to consider. First, levels are important -- did your doc test your Estro level before the Rx. You might have been rxd too much or too little. Second, type of estrogen is important; some people are very sensitive to the nonhuman estrogens in Premarin-type meds. Estrace, or a bioidentical compound, is better tolerated by some. Third, if other hormones, like thyroid hormone & testosterone (yes, even gals need a smidge) are low, estrogen can make you feel worse.
Hormone balancing is complex, and the majority of GPs & OBGYNs have no time, patience, or experience with it. They're used to doling out a one-size-fits-all solution that may or may not work for you. Networking in your community may lead you to a doctor who is skilled in the area of hormone balancing, if you are interested in pursuing it. The doctor might be a conventional MD, or holistic, or a D.O., or a naturopath.
However, the smoking is a concern with estrogen supplementation. And definitely not something to dismiss lightly. Optimal thyroid function is critical to the successful cessation of smoking, so if you ever consider giving it up, it's very helpful to find a doctor who will monitor your free thyroid hormone levels & Rx replacement meds if warranted.
Best wishes.
IMO, and that of some (not all) fibro experts, hormones do play a role in the pain that some of us (a subset) with fibro, experience. When symptoms come on after removal of ovaries, it certainly does make one suspect an estrogen connection.
I hear you saying that you felt worse on the Estrogen. There are a couple of factors to consider. First, levels are important -- did your doc test your Estro level before the Rx. You might have been rxd too much or too little. Second, type of estrogen is important; some people are very sensitive to the nonhuman estrogens in Premarin-type meds. Estrace, or a bioidentical compound, is better tolerated by some. Third, if other hormones, like thyroid hormone & testosterone (yes, even gals need a smidge) are low, estrogen can make you feel worse.
Hormone balancing is complex, and the majority of GPs & OBGYNs have no time, patience, or experience with it. They're used to doling out a one-size-fits-all solution that may or may not work for you. Networking in your community may lead you to a doctor who is skilled in the area of hormone balancing, if you are interested in pursuing it. The doctor might be a conventional MD, or holistic, or a D.O., or a naturopath.
However, the smoking is a concern with estrogen supplementation. And definitely not something to dismiss lightly. Optimal thyroid function is critical to the successful cessation of smoking, so if you ever consider giving it up, it's very helpful to find a doctor who will monitor your free thyroid hormone levels & Rx replacement meds if warranted.
Best wishes.
JILL120875
07-17-2006, 05:18 PM
Kindof new to all of this. Had a hysterectomy, would love to talk. Did this wrong last time. Never saw my post. So before I say anymore I am going to see if this works firt. Hey it works. So with that taken care of. Here goes. I want to talk to anyone who has had a total vaginal hysterectomy and is now experiencing fibromyalgia symptoms. I have done alot of research. Like to share, like to let you know what I suspect at least with me anyway.Looking for answers of course. I am 52, 3 weeks after surgery and doing great except for leg pain,( burning, aching). Anyone else ???
Hi! I'm 30 Yrs. old and I had a complete Vaginal Hysterectomy 1-1/2 years ago and was just diagnoised with Fibro. a few weeks ago. The hysterectomy was due to Endomertriosis. I don't have nay sleeping problems, just burning, shooting pains and aching.
Hi! I'm 30 Yrs. old and I had a complete Vaginal Hysterectomy 1-1/2 years ago and was just diagnoised with Fibro. a few weeks ago. The hysterectomy was due to Endomertriosis. I don't have nay sleeping problems, just burning, shooting pains and aching.
Lost Robin
07-22-2006, 01:21 AM
Hello everyone :wave:
I was diagnosed with fibro, cfs and mps in 2004 but had been experiencing many of the symptoms long before that, not exactly sure how long but I can say with certainty that I was definitely having symptoms as far back as late summer or early fall of 2002.
I also has a total vaginal hysterectomy in May of 2002.
The connection between hysterectomies and fibro never really occurred to me until I read something about this several weeks ago and then all of a sudden it hit me! I am among those statistics!
I also had been going through some very stressful times, etc. One thing I believe we can say with any real level of certainty that stress is our number one enemy! I know for sure that since I was dx'd with FM, etc. my symptoms have surged out of control during/after a very stressful period of time ... short or long.
Hope this helps ...
Wishing you all the very best and many, many more pain-free days!
Robin
I was diagnosed with fibro, cfs and mps in 2004 but had been experiencing many of the symptoms long before that, not exactly sure how long but I can say with certainty that I was definitely having symptoms as far back as late summer or early fall of 2002.
I also has a total vaginal hysterectomy in May of 2002.
The connection between hysterectomies and fibro never really occurred to me until I read something about this several weeks ago and then all of a sudden it hit me! I am among those statistics!
I also had been going through some very stressful times, etc. One thing I believe we can say with any real level of certainty that stress is our number one enemy! I know for sure that since I was dx'd with FM, etc. my symptoms have surged out of control during/after a very stressful period of time ... short or long.
Hope this helps ...
Wishing you all the very best and many, many more pain-free days!
Robin
meeeeelee
07-23-2006, 01:24 AM
Well, well, it looks like we all have this in common with hysterectomies and other surgeries. I also see the connection with a death in the family..............I am intrigued.
Butch0926
07-23-2006, 10:19 AM
I had a complete hysterectomy (uterous, ovaries, appendix) in 1995. I was diagnosed with fm in 2004. But I believe I've had fm for a lot longer. It may have started with my hysterectomy, but came on full blown when I lost my beloved husband to lung cancer in 2000.
I've been taking Premarin since the hysterectomy. I've gotten down to .3 mg., but don't know if it's helping me or not. Some articles indicate that fm sufferers need some sort of estrogen replacement, others don't. I've thought of switching to something like Estratest, but don't have a good enough reason yet.
I also have thyroid problems (underactive) for which I'm taking levothyroxine. I really don't think it's working and have asked my doctor to switch me to Synthroid, which I'd been on until my health insurance increased the deductible significantly on the brand-name drug. I guess if it works, I'll pay the price. I suffer from terrible fatigue and brain fog. I'm hoping that these symptoms can be alleviated by switching to Synthroid.
There's so much to this disease that I don't think I'll ever figure out when it started, which symptoms are caused by it or what I can do to lessen them.
I've been taking Premarin since the hysterectomy. I've gotten down to .3 mg., but don't know if it's helping me or not. Some articles indicate that fm sufferers need some sort of estrogen replacement, others don't. I've thought of switching to something like Estratest, but don't have a good enough reason yet.
I also have thyroid problems (underactive) for which I'm taking levothyroxine. I really don't think it's working and have asked my doctor to switch me to Synthroid, which I'd been on until my health insurance increased the deductible significantly on the brand-name drug. I guess if it works, I'll pay the price. I suffer from terrible fatigue and brain fog. I'm hoping that these symptoms can be alleviated by switching to Synthroid.
There's so much to this disease that I don't think I'll ever figure out when it started, which symptoms are caused by it or what I can do to lessen them.
meeeeelee
07-23-2006, 03:06 PM
Well, this little thread here is bringing me some light to the subject, thats for sure. I never even realized that grief, surgeries, etc. were a common factor for fibro patients. I just hope more people post here on the subject. Another little tidbit from me.........I have been addicted to a lot of dif substances in my lifetime. Anyone else????
mimgregg
07-24-2006, 02:04 AM
I have not had a hysterectomy, yet, but I had a D & C 2 years ago, and approximately 13 surgeries/biopsies over all. I wonder if all of this plus my other health conditions have just weekended my body?
Mim :wave:
Mim :wave:
Jenetti
07-24-2006, 04:39 PM
same here, total hysterectomy and removal of endiometriosis back in '81. also have had some cysts removed from my breasts, and two years ago, had surgery to remove scar tissue built up from the previous surgeries. Grief, yes, i guess i grieved alot when i had the hysterectomy, wanted more kids, actually we were trying to get pregnant at the time the problems started. So have only 1 son, going on 30 this year. also have thyroid problems, and fibro.
spazz03
08-06-2006, 05:58 PM
New to board hope to do this right. I had a complete hysterectomy at 23 I am now 46, I didn't start having fibromyalgia problems till a few years back but am new full blown with it in both legs , restless leg and neuropathy. doctors told me once stress could bring an underlying problem on and trauma to the body. Hysterectomey is both hormonal and trauma. Hope that helps, It is just one answer I was given. spazz03
spazz03
08-06-2006, 05:59 PM
New to board hope to do this right. I had a complete hysterectomy at 23 I am now 46, I didn't start having fibromyalgia problems till a few years back but am new full blown with it in both legs , restless leg and neuropathy. doctors told me once stress could bring an underlying problem on and trauma to the body. Hysterectomey is both hormonal and trauma. Hope that helps, It is just one answer I was given. spazz03