HysterSisters.com is a massive online community with over 475,000 members and over 5 million posts.
Our community is filled with women who have been through the
Hysterectomy experience providing both advice and support from our active members and moderators.
HysterSisters.com is located at 111 Peter St, Toronto, Canada, M5V2H1 and is part of the VerticalScope network of websites.
With free registration, you can ask and answer questions in our HYSTERECTOMY forum community, get our FREE BOOKLET, access Hysterectomy Checkpoints and more.
You are not alone. The HysterSisters are here for you. Join us today!
|
|
6 weeks post op and just sad
|
04-01-2011, 07:03 AM
|
HysterSister
|
|
Posts: 277
Hysterectomy: March 8th, 2011
Surgery Type: TVH
Ovaries: Kept 1 or both
|
|
Re: 6 weeks post op and just sad
Oh Sister I am so sorry you are suffering so. I wish I had a clue. My first thought was anxiety also. Stress puts a lot of hurt on our bodies. I don't have any answers but wanted you to know someone was thinking of you today.
Tiff
|
Sponsored Links
|
Advertisement
|
|
|
04-02-2011, 08:37 PM
|
HysterSister
|
|
Posts: 31
Hysterectomy: May 14th, 1993
Surgery Type: TAH
Ovaries: Removed both
|
|
Re: 6 weeks post op and just sad
Hi!
I read your post and I could see that your situation is definitely hormonal! I had all the symptoms you described recently. I had my hysterectomy in 1992 and was put on the estrogen patch. In about six weeks, I had palpitations, anxiety, crying, insomnia, and felt horrid. I had heart tests, etc. All was fine. I finally had to find a new doctor who told me I needed more estrogen. He put me on a second patch and that did the trick. I do not remember how long it took for me to feel good again, but it was fairly soon.
Last summer, I tried to taper off some of my estrogen and I ended up with anxiety, depression, crying, palpitations, insomnia and assorted miseries. I tried to go back to a higher dose, but nothing seemed to help me. I did not realize that it can take as long as 8 weeks for a person to get the full benefit of hormones. It seemed to take forever. I am on week 8 now, after trying several routines that did not work. I finally almost feel like my old self---not quite. I still have an occasional skipped heartbeat---but nothing like what I had. I thought I was dying. I had weeks of my heart skipping every third beat. It was terrible. I have had two ob/gyn's tell me that it is not related to hormones! But recently a woman who works at an ob/gyn office told me that she went off her hormones and had terrible palpitations and skipped beats for over a year until her body adjusted. She also had anxiety, insomnia, etc. She said it was terrible.
I also saw my endocrinologist regarding my thyroid and my estrogen crisis. He told me that they normally do not do estrogen hormone bloodwork because the hormones fluctuate so much during the day that they are unreliable. So he said that they adjust the dosage by how a person feels. And he's an endocrinolgist!
So if your blood work came back fine, so what!! If you still have all the miseries of menopause, then you need more hormones!
I too, had such tightness in my thighs and upper back. It was like the anxiety set in on those muscles. It was actually painful. My feet were icy cold, yet they would turn fiery red and burn just before it was time to change my patches. That was during the time I was trying to re-adjust to the higher dose.
I had screwed with my hormones so much that it took weeks to "stabilze" again. I guess a lot of this takes place in the hypothalumus (brain) and it takes weeks to settle that area down, once the hormones are out of whack.
It affected my appetite, too. I felt so bloated. I had no appetite. I lost 30 lbs in four months.
Now that I am 8 weeks into this routine that is working again, I have my appetite back. I am fighting to not gain my weight back!!
If you feel no better with time, then go see another doctor. Or ask to see if your doctor would try increasing your dose somewhat. If you had no depression, anxiety or hellish symptoms before your hysterectomy and then all this came upon you afterward, then it is surely related to hormones.
I was perfectly content, happy, had no palpitations, depression, anxiety or insomnia before I cut back on my hormones. Then, my life disintegrated fast. One doctor told me I had a funky heart. NO. I did not have a funky heart before I monkeyed with hormones!!! I walked my dogs 45 minutes every day and had perfect rhythm. But after tapering my hormones, my heart was dancing all over the place with abnormal beats! If I had not had all the other menopausal symptoms, I would have thought that my heart was screwed up. My heartbeat was screwed up because my hormones were screwed up!!!
I hope this helps you. I just lived this recently and it's very fresh in my mind. My hysterectomy was a long time ago, but I also remember how I felt afterward. It sounds like what you're going through. I had to change doctors to get the help I needed. It was worth the change, too!!
Best wishes!!
|
|
04-04-2011, 11:03 PM
|
HysterSister
|
|
Posts: 15
Hysterectomy: February 15th, 2011
|
|
Re: 6 weeks post op and just sad
Thank you all..... It is so hard when you are constantly not feeling well, and people look at you like you are just crazy. Last week another 2 visits to the doctor, one a walk in medical clinic because I was convinced that I had a pulminary embolism, of course, everything normal, and then my 6 week post op visit... where my GYN didnt understand why I was having all these issues. His nurse did tell me that some of the pain in my upper back could have been due to the gas escaping, which no one warned me about.
Over the weekend, I had a horrible set back.... a very bad vertigo attack where I couldnt get out of bed for most of Sat. and part of Sunday. I lost the entire weekend with my family and I am angry. My kids are on Spring Break this week, and I missed 2 whole days with them already. I am slated to go back to work next week and scared to death to go.
I know I have upper back issues, but that doesnt explain all the issues that I have been having.
Crystalblue... what wonderful suggestions, I will look into the books. I actually had an ultrasound of my thyroid gland, that came back normal. My thyroid levels test that were done with the CBC also came back normal... The neuro wants me to retake all the blood tests, etc, and I am waiting for the authorization for the EEG. My MRI prelim report is back today, and my entire C-Spine has an issue, my doctor is emailing me the report....
I knew that...... but that doesnt explain the panic attacks....
HormonalHilda... thank you as well for the information, I will start hammering some of these things home with them.
|
Sponsored Links
|
Advertisement
|
|
|
04-05-2011, 08:30 AM
|
HysterSister
|
|
Posts: 31
Hysterectomy: May 14th, 1993
Surgery Type: TAH
Ovaries: Removed both
|
|
Re: 6 weeks post op and just sad
Hi again,
I also wanted to tell you that in the past, when my hormones were low, I would have panic attacks and vertigo. Three years ago, my estrogen patch fell off and I did not discover it for a day or so. I wondered why I was dizzy and my face felt hot. I discovered the lost patch in the shower! But soon after, I had my first panic attack. I did not even know what it was, but I felt like I was going to die. For me, I feel breathless like I cannot breathe, but yet I can. It was terrible. I also got a migraine. Both panic attacks and migraines are not normal for me. It took several weeks to feel normal again.
Then, this year, after I began to taper my estrogen, I began having anxiety and panic. I did not even put the two together. I wondered why I freaked out about things that normally would not bother me. But I did not even think about the tapering estrogen. I only tapered off a tiny piece of my patch!! Tiny! I took about four months to taper off about 1/8 of a .1 patch is all! During those four months, I got terrible back spasms, panic, anxiety, crying, and finally the heart palpitations. The heart palpitations were what finally clued me in that it was a hormone thing. I could not imagine that a tiny piece of patch could cause such grief!
I also had ringing in the ears. Since then, I learned that is a menopausal symptom.
If you never had the symptoms your having before your surgery, you can be assured that your symptoms are low estrogen.
During my recent hormone nightmare, I learned that estrogen patches and pills are no better than a placebo until after four to six weeks. The information in the Vivelle Dot packages shows that it can take as long as six weeks for menopausal symptoms and hot flashes to go away. I also looked it up on the internet about Premarin. That too, takes as long as four to six weeks for a person to feel better. Some people will feel better within two weeks, but often, it takes longer. It took a good six weeks for me to finally start feeling human again. At eight weeks of a steady dose, I am almost back to normal again.
Sadly, the doctors who prescribe the hormones do not tell people to stay consistent. Never skip a dose and always change patches at the same time and on a consistent schedule. The brain needs consistency. I also learned that the hard way. I felt so bad that I changed my patches inconsistently. I changed them too often. I thought if I changed them more often, I would feel better faster, but I did not understand that the fluctuations every time I changed the patch was screwing up my brain. My hypothalumus was ticked off and would not settle down. The dose is important, but fluctuations in that dose are what cause the bad symptoms!
I, like you, thought I had all sorts of things. I imagined an aortic anerusym, blood clots, etc. I just felt horrid. Breathless, panicked, etc. But with each week of a consistent dose of estrogen, those things began to fade away and I began to regain my life again.
Best wishes to you!! You may need more time for your hormones to work, or you may need a bigger dose. I needed more than a .1 patch. I ended up on a .1 and a .05 of Climara. That worked great for years. Then Climara got too expensive, so I switched to Vivelle Dot. The .1 and .05 were not enough for me. So I added the 1/8 of a patch besides and that worked great until I tried to taper off that little section. That's what brought me months of misery and lots of doctor appointments.
I went to two obgyn's who were worthless. Neither had ever heard of palpitations as a menopausal thing. I went to the ER three times. All was fine. I went to a cardiologist. He seemed to understand that menopause can cause an irregular heartbeat. But thankfully, I found a regular male doctor who understood! He told me to be consistent and that it would take 8 weeks. He was right.
If I had found him first, I would not have had to suffer for several months!
Again, best wishes to you. I sound like a nut, but really, I am not. I am normal unless my hormones are off. Then I really do go nuts. A person feels so bad mentally, emotionally and physically that you become a different person!
I am so thankful to feel sane again.
I hope you can find normal ground again. Don't give up.
Compare your life before the surgery and after the surgery.
If all that changed in that time was the surgery, you know that it must be related. Probably hormonal. And as I said before, my endocrinologist, two ob/gyn's and my family doctor told me that they can test for hormone levels, but the tests are very inaccurate due to wide fluctuations every day. They adjust doses by symptoms more than the tests.
Just a thought, though other doctors would disagree.
I hope you find peace again and regain your normal life soon!!
|
|
09-24-2011, 11:06 AM
|
HysterSister
|
|
Posts: 21
Hysterectomy: July 6th, 2010
Surgery Type: TVH
Ovaries: Kept 1 or both
|
|
Re: 6 weeks post op and just sad
Just read your post about estrogen. I have tried the estrogen patches and pills and everytime I even take a small amount it seems like the anxiety is worse and depression and crying sets in big time. I have severe anxiety 24/7 with no relief with anything I take along with severe muscle pain in the uper back and sides. I have had diarreha and all these symptoms for over a year and nothing is getting any better. I have lost 50 pounds and I can't afford to lose anymore. I am in desperate need of finding out what exactly my body is wanting whether it be estrogen or progesterone. Did any of your symptoms get worse when taking the estrogen?
thanks,
Orangelollie
|
|
09-24-2011, 03:01 PM
|
HysterSister
|
|
Posts: 31
Hysterectomy: May 14th, 1993
Surgery Type: TAH
Ovaries: Removed both
|
|
Re: 6 weeks post op and just sad
Hi OrangeLollie!
One thing I learned the hard way was that it takes up to at least 8 weeks for a person to know if a dose of estrogen is working. Last year, when I tried to taper off a tiny bit of my patch, I began having anxiety and panic. I did not recognize my symptoms as being estrogen related until I got heart palpitations and insomnia. It was horrid. So in my desperation, I began taking my patches early and ahead of schedule. I thought it would fix it sooner. Then I increased the dose some. Then I got worried about that and cut it back again. I became a horrid mess. I went to three different ob/gyns and none of them had answers for me. My regular doctor looked at my calendar and I showed him what I was doing. He could then see that I was very inconsistent with my patches. If I felt really bad on a given day, I would change my patch maybe a day early. I was desperate.
He explained to me that the misery comes from fluctuations in the hormone and inconsistencies. So he said to pick the days and stick to them, no matter what. I actually wear two patches (1. mg each!!!). So I chose to change my patches every 3rd day. The manufacturer really wants people to go 3. 5 days, but I find that to be a nightmare. I like to change my patches first thing in the morning. So as an example, I might pick Tuesday and then I would change again on Friday, and then again on Monday, and then again on Thursday. By doing them every 3 days instead of every 3.5 days, I never feel the effects of the hormones dropping off.
So last February, I began my routine and the first weeks were hellish. By the third week, things began to settle down some. By the fourth week, I was not as anxious, but still did not feel normal. By the eighth week, 90% of the anxiety and heart palpitations had stopped. By the end of three months, I was fairly normal. But it took a long time for things to settle down. It's the brain that gets all messed up with changes in amounts of hormones and changes of fluctuations and schedules.
So maybe you are not on enough estrogen in the first place?? I surely wasn't after my hysterectomy. I needed more. So maybe you could get a little more and try it, and whatever you do, change NOTHING for at least eight weeks. My guess is that many things may settle down for you if it is hormone related.
If all your symptoms started after your hysterectomy, then you can surely know it is hormone related. If you need to change doctors, do that.
I am horrified to realize that so few of the ob/gyn's understand hormones or the symptoms of hormone deficiencies! I also went to my endocrinologist and he was not horrified by my 2 mg. of Vivelle dots per day. He tested me, which surprised me, and my estrogen was 121. I think I read that anything below 100 is the hot flash zone! Here I am a large person of 52 years of age and I still need that much estrogen! Why??? I don't understand it, but that's how it is. Maybe you need more hormone and you will have to be consistent in timing and dose to learn if it willl work for you.
I feel for you because I feel that there is NOTHING worse than having hormones out of whack. It affects everything---like looking at the world through brown colored glasses. I have never felt so bad in my entire life and it lasted SOOOO long.
Had someone told me about being consistent and also that it would take weeks to feel better, it would have helped me at least feel like there was a light at the end of the tunnel!
One doctor in multitudes seemed to get it. For so many women, we are on our own and it is a desperate feeling.
I hope that my words can help you. Keep a calendar and make notes. Stick to a routine and I hope it helps you.
There is life afterward, once you find the right dose and stick to it.
When I read this website, I see how many women are suffering with the evil effects of estrogen withdrawal after surgery. What a shame that the doctors do not understand better, or communicate better with their poor patients who go from a normal life to a life of hormone hell with no one to help. UGHH!!!!
I see that so many tinker with their dose and think that their misery is from the hormone itself, when it is actually from the withdrawal or fluctuation. So they jump from one thing to the other without having enough time in between to know what really works and what doesn't. Estrogen makes a person calm and makes you sane. It is the disruption or withdrawal that makes a person feel nuts!
OH I hate that feeling!!! I fear it more than anything else.
I love my patches and I have told everyone I know that if I end up in a coma, please remember to change my patches!
I hope I can die of old age with them on me!
Best wishes and give it a try. If you want to write back,
feel free! I am more than willling to help if I can!!
|
|
09-24-2011, 03:47 PM
|
HysterSister
|
|
Posts: 31
Hysterectomy: May 14th, 1993
Surgery Type: TAH
Ovaries: Removed both
|
|
Re: 6 weeks post op and just sad
Hi OrangeLollie, again...
One other thing that happened to me last year (after tapering my estrogen some) is that I got horrific spasms in my back. It locked up and I was miserable for 3 months. I have never in my life had such grief with muscles. I finally went to a chiropractor who used a Graston knife on all the adhesions and that helped a lot, but I found that after my hormones settled back down a lot of the muscle pain left me. My back is still not 100% because I did some damage to the muscles. All I did was work real hard at my in-law's house for one day and it locked up in spasms!! But I think the lack of estrogen contributed.
During the lengthy road back to normal, I imagined all sorts of ailments because I felt so rotten. I also lost about 35 lbs because I felt so bloated. I had no appetite and felt sick when I would eat. It was all the hormone thing! I saw that it was a symptom of menopause...bloating. I could barely eat a whole sandwich. Unfortunately, I have gained back most of my weight now and have no difficulties with my stomach now. I thought maybe I had a tumor in my stomach because I felt so full during that time. I would actually unhook my bra so I could breathe. I felt breathless, and yet my lungs were fine. I found myself hyperventilating sometimes---it was like an air hunger for no reason. Anxiety is horrid. I have never had anxiety or panic apart from hormone issues. It's just nasty.
I guess all you can do is to try the recommended dose of hormones and give it at least a month. A lot of those symptoms may slowly fade as your body stabilizes.
|
|
09-24-2011, 11:22 PM
|
HysterSister
|
|
Posts: 186
Hysterectomy: October 18th, 2010
Surgery Type: TAH
Ovaries: Kept 1 or both
|
|
Re: 6 weeks post op and just sad
I was just reading your posts, Hilda and OrangeLollie. 1 mg is a very low dose, I know that is what I was started out on as well. But after the hysterectomy, my ovaries went into shock and I was up to 5 mg, 2 x day for about five months until the ovaries started working again. Then I went to 3.75 and I can tell you, judging by my lack of short term memory, it is not enough. I am not a doctor but just chiming in to let you know, there is no "one size fits all" in hormones.
It is heartbreaking to read about people suffering so much! We really have to take the lead in keeping on insisting on something else when what we are doing isn't working. Doctors DO NOT know all, so never let one tell you that there is nothing wrong with you or that you "shouldn't" be feeling the way you feel.
Being on this board is a great thing because you can hear from other women's real experience. Orange Lollie, please keep posting, even start your own thread with your symptoms in it, and hopefully someone else has been through something similar and can also chime in like Hilda and I are doing. You never know.
But for my part, I am 5' 9" and 165 pounds and I need more than 3.75 so don't be afraid to have the doctor up your dose and see if it helps. Also, are you taking progesterone? The two should be balanced (NOT progestins, but bio-identical progesterone). Good luck and i hope you find relief soon!
|
|
09-25-2011, 09:11 AM
|
HysterSister
|
|
Posts: 31
Hysterectomy: May 14th, 1993
Surgery Type: TAH
Ovaries: Removed both
|
|
Re: 6 weeks post op and just sad
Hi Crystal Blue,
Now that you said you need more estrogen than I do, I feel better. I feel like I am the only oddball who needs 2 mg. Most people gasp because they are on .5, .75 or 1.!! There is a certain amount of fear in taking estrogen because of all the reports, etc. Yet, recently, they have said that while they did the big study a few years ago about hormones, they discovered that women who take estrogen only have less cancer than those who take nothing!!!! Yet many doctors have not read those studies, so they still try to scare us to death about it. We are in a bad spot....we lose our minds and feel nuts without it, or we take it and fear! If men had to live without their testosterone, they would understand the misery of all this. I know that men who have to be snorfledoodled due to prostate cancer, also have hot flashes and emotional issues. It's very unpleasant.
During my hormone mess last spring, I went to a male ob/gyn who told me I really should try to get on a lower dose. He evidently did not listen to me because I originally told him that I tried to taper back on my hormones, which left me an anxiety-ridden, heart-palpitating mess. Duh. I wanted to ask him if he might want to lose a testicle and see if the drop in hormones might help him to avoid prostate cancer some day in the future!!!
It makes me angry. I remember being 8 weeks out of my surgery (total hysterectomy at 35) and feeling my heart skipping and pounding, crying, not being able to sleep, etc. I also thought that I must be allergic to the hormones or something, so I took off my patch for a day! Talk about a double nightmare! I was a bawling mess. My husband had no idea what to do with me. I finally saw a kind doctor who told me I probably needed more hormones. I added a .5 patch to my 1. patch and my life became much better in not too long of a time. I was on Estraderm for a long time and then went to Climara, but found that by the seventh day, I had a migraine. I had to start changing the patches every six days and that worked. Then my insurance got so expensive that I switched to Vivelle dot, which was on a lower tier. I found that to be difficult because within a short period of time, I found that it was not working as well for me as the Climara, so I added a tiny segment of a patch to the 1.5. I was probably at 1.7 or so with Vivelle. It was the tiny segment that I decided to try to taper out of my dose that killed me last fall. My body missed that tiny bit and gave me fits over it.
Truly, I don't know what will happen to me if I ever have to go off this stuff. Supposedly, it gets easier as we get older. My endocrinologist said we could try to cut it back when I am about 60. That's eight years. I hope he's right and I can survive it. For me, the heart palpitations are just an unnerving nightmare. No one ever told me about this sort of thing when I had my total hysterectomy. I had no idea. But my mom had the start of ovarian cancer, and I had adenomyosis, so it was a good solution I guess!
I agree with Crystal Blue....keep trying doctors till you find one that understands. Maybe an endocrinologist is in order? They understand all the glands and hormones.
|
|
09-25-2011, 04:43 PM
|
HysterSister
|
|
Posts: 21
Hysterectomy: July 6th, 2010
Surgery Type: TVH
Ovaries: Kept 1 or both
|
|
Re: 6 weeks post op and just sad
Thanks to both of you. I do have a thread going on that is severe symptoms after 1 year. I would really like to keep hearing from both of you on that thread. I will be going back to the gyno in two weeks to find out what she is going to suggest. This is a new one due to the fact that the one that I had just kinda dismissed the fact that I was having so much trouble and was a mental mess that I had to quit work in Feb. I was never like this before my surgery and the gyno that did it said that she had never seen a partial hysterectomy not even a hysterectomy do this to anyone and said that she would not be responsible for my mental health. She as much as told her front desk person to let me know if I called that she felt she had done all she could do for me. She didn't even have the decency to tell me herself. I never saw her after my surgery except once for my six weeks check up and all the other advice she wanted to give me was on the phone twice. Once when she called in a RX for estradiol. My 1 year check up was suppose to be in June of this year and the office called and said that she wouldn't be in the office on the day of the appt and rescheduled to November. I think my best bet is to release her as my Gyno and find another which I did. The OB/Gyn that took care of me for years and delivered my children passed away and that is why I had to end up finding this one that done the surgery. I truly feel that if my primary Gyno was still alive I would not be going thru this mess. He would not have stopped until he found something to help me. I have been just so frustrated with this entire mess that I have went thru and put my family thru for this past year that there have been times I felt as to end it all. There was a few months last year that I couldn't even take care of myself and had to have my mother come and stay with me due to t he fact that I didn't trust myself of what I might do. Every day has been a struggle for me to even continue with my own life for the last year. I have got to have some relief some how soon or I don't know how much longer I can live like this. Please keep posting and maybe somebody will have a suggestion on what I can try next. I can't tolerate the antidepressants as they make me worse and the antianxiety meds don't seem to help at all with all these crazy feelings I have inside my body. Please also keep my in your prayers in hope that there may be a small light at the end of the tunnel.
Thanks,
Orangelollie
|
|
|
Similar Threads
|
From This Forum |
From Other Forums |
11 Replies, Last Reply 02-13-2011, Started By DionneH 1 Reply, Last Reply 02-04-2011, Started By cranbot 3 Replies, Last Reply 05-20-2010, Started By jgdi5237 1 Reply, Last Reply 03-29-2010, Started By peapodd33 8 Replies, Last Reply 09-22-2008, Started By Emma315 7 Replies, Last Reply 08-02-2008, Started By jellybean54 12 Replies, Last Reply 04-15-2008, Started By shellbear 5 Replies, Last Reply 03-11-2008, Started By beannasandy 5 Replies, Last Reply 11-24-2007, Started By 4ever4u 11 Replies, Last Reply 11-02-2007, Started By Voyager54 2 Replies, Last Reply 11-09-2006, Started By magickalchylde 5 Replies, Last Reply 07-19-2005, Started By walnut brownie 1 Reply, Last Reply 05-13-2004, Started By JChase 18 Replies, Last Reply 12-07-2003, Started By BeccaJ 2 Replies, Last Reply 06-23-2003, Started By skm2566 3 Replies, Last Reply 06-19-2002, Started By martony 6 Replies, Last Reply 12-23-2000, Started By NaeNae 13 Replies, Last Reply 12-14-2000, Started By CARMEL |
2 Replies, Cancer Concerns - GYN 6 Replies, The Road Less Traveled |
|
Advertisement
Hysterectomy News
TODAY'S EVENTS
Calendar -
Hysterectomies -
Birthdays
Request Information
I am a HysterSister
Your Hysterectomy Date
$vbulletin->featuredvideos is not an array!
Advertisement
Advertisement
|