Problems after total hysterectomy

I'm 47 years old and had a total hysterectomy (ovaries, uterus, & cervix) along with a bladder sling 6 months ago.  I had an enlarged uterus and was severly anemic prior to surgery.  Needed an iron infusion a month before to bring up levels.  My OB doctor felt it better to do a total than to risk cancer later.  Looking back I should have had a second opinion on that issue.        

Since the surgery I have had a lot of problems and still feel like I'm not myself and wondering if I ever will.  The following is just a small recap of some of the problems I've had.  

Had major vaginal bleeding 2 weeks later, followed by a vaginal cuff infection.  Within the first month I lost 25 pounds, which my husband had to bring those concerns to the doctors attention.  The OB dr. kept telling us things will improve over time.  I was then hospitalized 3 times for dehydration, nausea, & constipation over the course of 3 months which I lost an additional 20 pounds.  The OBGYN doctor insists it's not related in any way to the surgery.  But felt if I took Estrodial pills maybe things would help.  Also wants me to start taking an anti-anxiety drug.  I been reading "The Pause" and read the anxiety drugs are not always helpful.  

It took a second opinion doctor to find a rectocile problem which would explain the feeling of constipation I had.  Referred me to a surgeon.  Also suggested the Estrodial patch to bypass the stomach after such a long battle with nausea.  This doctor refused to take me on as a patient due to he was only a second opinion.  He left me feeling lost since my doctor didn't even think about the rectocile problem, which I didn't realize until now it is somewhat common after this type of surgery.    

I am going to see a "menopause specialist" to hopefully get some kind of answers.  My problems include: extreme fatigue, lightheadedness, dizziness, mental fuzziness, occasional insomnia, ringing in ears, crying, palpataions, and feeling like I'm not part of myself or like my head isn't on straight (don't know how else to describe it).  My OBGYN says these are not normal menopause symptoms it's probably something else.  For my family, it's hard to believe it's not related when it all started after the surgery.

All my CBC tests and thyroid results come back fine.    Has anyone ever experienced the similar symptoms?  Should they be testing for something else?  Should there be something I ask the specialist in particular?  

Right now I use the Estrodiol patch (.1), multivitamin, Sublingual B12, Omega 3 & 6, Herbal for menopause.  Should I be taking something else?

Every day is a battle to try to feel normal again.  Friends and family are very supportive things will get better over time.  

        

[Laney8463]

Hi There,
I am soooo sorry you are going through this. Surgery certainly is no fun. I am 5 weeks post of for robotic hyst/bso/appy and Im feeling pretty good. I too have alot of the symptoms you are experiencing such as the bowels, bladder, palpitations, emotional ups and downs, irritability etc. I started the vivelle dot 0.1mg patch for hormone replacement a couple weeks ago. Even though I feel better, I think my dose and schedule still need to be tweaked a little. Has your doc added any testosterone in to your hormone replacement? That is a biggie to help correct things. Mine has not added it yet, but I see the nurse practitioner on Dec 11th and hopefuly we will get it all straightened out.
You really need to be your own advocate in health care. You know your body better than any damn doc and it is so frustrating when they don't listen to us. There is a great book that has been recommended to me by some of the wonderful women here on the forum. The title is Screaming to be heard by Dr Elizabeth Vliet. She is really incredible and you can gain such insight and take control back. I suggest you pick it up and start reading.
Dont give up, things will definitely get better. They just need to get you on the right hormone replacement regimen.
Hang in there, this is a journey.
hugs
Laney

[cyk]

Thanks Laney.  I went to the library to check out the book "Screaming to be Heard".  Hope the patch is working for you.  Is there a difference between the Vielle patch and the Estrodiol patch?  Mine was so big and would start to fall off about 3 - 4 days after putting it on.

I did have had a bad week as the Estrodiol patch was found to be to weak by the end of the week which was causing a lot of my mood swings.  The dr. did tell me that my Vitamin D level was way to low and I needed to start taking supplements with injections.  He did check my testosterone level but have not heard about it as of yet because he had to do some calculations. He suggested I start using the Estrodiol ring which is left in the vagina for 3 months (ugh).   Never heard of it, but he said it would give me the .1mg dose continually and I shouldn't be on this rollercoaster ride.  Draw back it will take 1-2 weeks to kick in.  

I was in the hospital overnight with tightness in chest and neck.  They have ruled out heart problems, but I need to go in for a CT scan of my neck.  All my thyroid tests come back normal, but the nurses were commenting on the large weight loss and fatigue are good signs for more testing.  I am going to let my doctor know this week about the book and hopefully he will do more testing as recommended.  

This is just not what I expected or was told would be a possiblity of what could happen.  Everyone, that had similar surgeries, I talked to before the surgery said I would feel so much better.  I Wish!  I just feel so tired all the time.  

Thanks so much for the words of encouragement and I will try to remain strong through the journey.  

Blessings

[Mary 53]

I can tell you that the Vivelle patch IS estradiol. It is considered a human (something 17 beta... have to look it up) form of Estradiol. It is made from Yams but acts in the body the same as the estrogen (Estradiol.. the best) in your body would work. If you did not use the patch of estradiol, your body would kick in to make fat (around the trunk so that it would be easy for the body to access) since a by-product of this fat in menopause is an estrogen called Estrone... not the best estrogen.

I can write later... husband has worked on dinner for SEVEN hours and I know he is about to call me!

Mary

[Mary 53]

(After dinner )).... I wanted to add that all of the symptoms you mentioned are all, or can be, Menopausal symptoms. The only one that, to my knowledge, (or that I have not experienced myself) is the tightening in the neck. Hopefully the Menopausal specialist can help you out. You may need just a slightly higher dose of Estradiol.. the Vivelle patch goes only to the .01. But, you will see in the book by Vliet that you picked up, an additional patch of .025 can be added... It all depends on your serum level of Estradiol, which can be checked doing a blood test. Eventually you may not need that high a dose... it depends on so many things... Regular work outs will increase the need as you will metabolize the Estrogen faster.

You will love Vliet's work. I have been researching this stuff since 2000 and her work is the best I've seen... I say that mainly because I have taken her advice (I am on Vivelle and testosterone...just recently quit entirely the Progesterone) and I have been feeling near human lately for the first time in years. Apparently women without Ovaries cannot utilize the Progesterone, so even though there is one school of thought out there that says we need it, I have found that it had the opposite effect on me (as Vliet describes) and have felt so much better more recently. I also sense that the cell receptors for Progesterone were blocked and so the Estradiol from the patch was not able to get through. Now, it is getting through...I had my blood checked last Monday and am eager to see if I am at Optimum levels for Estrogen and Testosterone, per Vliet's suggestion.

Good luck. Good you are checking out your concerns, since the symptoms don't HAVE to be Menopausal, but to be sure, they certainly can be. Not all women will experience this the same way, or as hard. I did. Sounds like you are. There is hope.

Mary

[carachi]

I am so confused ; I do not know if I am getting too much or not enough hormones.  I had an hyste. about 6 months ago and have had a hard time with hormones.  They make me feel so tired or foggy.  I like the Vivelle dot .o5.  It is what I have been on twice a week.    My feet hurt so bad!  I went to the dr. and they sent me to a neurologist; i had the nerve test were they stick needles in your feet and electrical impulsses to see how the nerve reacts..  ... sigh.    I am overwhelmed by the info here but so grateful to find this place.  Mercy I have got to have some relief!  

[Mary 53]

Carachi,

I left you a few messages last night and hope you found them. The hormones would not make you feel tired or fuzzy... it would be the imbalance of the hormones and also the Type of hormones you are using. I know I am repeating myself here :) but try not to become overwhelmed with all this.. I know it is overwhelming. But, if you keep on the journey of trying to find out all that you can, you will start to feel more comfortable. We are just not prepared for any of this before our surgery... it is a shame.

Hopefully you found the work by Dr. Vliet that I mentioned, and I think Laney mentioned too. Knowledge is power... things will get better.

I've had the nerve test of which you speak and the result for my left leg was so bad that the doctor was surprised I was even walking. That was from a slipped disc that went undiagnosed because all of my pain was in the front and not back of my body. I also spectulate that it was because my dose of Estradiol was too low... that my vertebrae became weakened... it was during that time I was experiencing more bone loss... which since adjusting the estradiol levels and keeping up with the testosterone, has reversed. Also, my pain in my left leg from the disc issue has subsided quite a bit since the bone reversal (Credit to phy. therapy, too!).

Mary

[sandy2337]

this is crazy had my surgery a year ago doctor told me i can't take hormones can cause the cancer to come back , and i feel like i am going crazy . i can't think right there has to be some thing i can do . i'm driving my husband and mother crazy as well , so any suggestions . i am very depressed , no one understands me and i have no one to talk to so that maybe i can understand a little

[Mary 53]

Hi,

You can start a new post if you want only because this post dates back to 2008, although I think there is a lot of good information on this thread. I am assuming you googled something about problems after hysterectomys and that brought you here. I am assuming you are experiencing many of the symptoms talked about on this thread. I'm playing part detective since you didn't state much about your situtation. I am hearing that things are not good and for that, please know my heart goes out to you. Surgical menopause is rough and some survive better than others without hormones, but the majority of women, from the research I've done, have a difficult time unless they are on supplemental hormonal help. Sometimes women think they are doing well without any hormones but then have problems that either they or their doctor do not realize stem from a lack of hormonal support (particularly Estradiol, or E2, which is the most helpful of the estrogens. E2 supports over 400 bodily functions including brain, heart, and bone health).

Can you tell us more about your cancer diagnosis? Was it Uterine cancer, or ovarian cancer, or did you have a proliferation of cells that was a concern? Did you have endometriosis? Have you sought out hormone help from someone other than the doctor who did the surgery? What were the exact concerns the doctor had other than just the fear that the cancer would come back? The more information the better.

Sorry to bombard you with quesions... but I think you will get more responses if you give more information.

You can also check the archives on this page (to be honest I have not doe that for years, but there should be a place here where you can do that). Many old posts go to the archives and you may find more answers there. I can check back and see if you've posted again and I can share my story with you. You can also read my profile (check journals) by clicking on my name... it should take you to my profile/home page and the journal entries are there.

Take care...

Mary

[Valpal2]

Just had a complete hysterectomy 8 weeks ago. I'm on the Vivelle patch dot 0.1, I have been prescribed to wear 2 because my estrogen level is low. I am experiencing some things like moodiness, anxiety, headaches and concentration issues. Any suggestions or is this something that levels out?
Val

[bella8686]

Hello, I had a complete hysterectomy 2 years ago, and since then I have been falling apart slowly. I literly feel old. I have body pain, my feet hurt a lot upon standing, legs hurt,arms, no energy, tired, it is very annoying!!