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Pain & exhaustion 4 months post-op? (endo patient)
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04-07-2009, 05:37 PM
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HysterSister
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Posts: 8
Hysterectomy: December 10th, 2008
Surgery Type: TAH
Ovaries: Kept 1 or both
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Pain & exhaustion 4 months post-op? (endo patient)
I'm four months post-hyst (December 10) and the pain and exhaustion is horrible. I had a full abdominal so I figured that I'd hurt for awhile, but nowhere near this bad. Taking four Ibuprofen every four hours does nothing for the pain. Wearing pants is a living Hell, even pajama and yoga pants.
No matter how much sleep I get, I'm constantly exhausted.
I'm having random hot flashes and headaches.
I've been to my doctor(s). I go to a teaching hospital so I see someone different every time. One student doctor said I possibly had a hernia, another one has said I possibly have adhesions. They tell me that I should just take it easy and not stress myself out. I'm in my last semester of graduate school. I *can't*. I've already missed half the semester due to my recovery and a stint in a psychiatric hospital. One said they'd test my hormone levels, but when I went back, they said that since I'm 24 that there's no need.
I'm at a complete loss as of what to do. When I had my surgery, they told me I'd be fine in a couple of months. Yeah, sure. Now that I'm back at the hospital saying I have problems, they don't want to deal with them. I'm having to go back every week as is for silver nitrate treatments on my cuff.
When I tried to go see another doctor at another clinic, (the one who referred me to the teaching hospital), he said that since I was the other's patient, he couldn't do anything.
Sorry if some of this doesn't make since and/or horribly whiny, but I really am at a loss of what to do. The only reason I had this surgery was because endo was ruining my life (either the treatments didn't work or the side effects of the treatments made me want to die). And now it's just as ****ty as before, even though I do have some good, though extremely rare, days.
-Sarah
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04-08-2009, 12:51 PM
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Posts: 36,890
Hysterectomy: November 14th, 2000
Surgery Type: LAVH
Ovaries: Kept 1 or both
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Re: Pain & exhaustion 4 months post-op? (endo patient)
((Sarah))
I am sorry that you are still not feeling well!
Did your surgeon do a lot of work to remove all of the endometriosis? Did you have a lot of adhesions at the time surgery that were removed? If so, it could be that your body is still dealing with all the healing. I had been warned during my last laparoscopy with my endo specialist that he was extremely meticulous so I could find myself with a lot of healing pain! And I did, more so than with my hysterectomy!
Also, if your cuff is still healing, that can be causing some of the pain and exhaustion as well. Your body is likely using its energy to try to heal itself, leaving you little with which to go about your every day life. If you are dealing with a lot of stress in grad school, that stress on top of healing is likely leaving you extra exhausted.
Additionally, any endo that was missed could be causing you pain and problems.
Are you sleeping well? Getting enough sleep each night? If not, the lack of sleep could be slowing down the healing process and contributing to the exhaustion.
Some doctors do not test the hormones of younger patients who have their ovaries. Our hormone levels go up and down depending on where we are in our cycle so testing them could be completely unhelpful. If you are experiencing a lot of definite menopausal symptoms, then your FSH level might be checked to be sure your ovaries are functioning. Keep in mind, stress affects your hormones as well.
It can take a few months after a hysterectomy for our ovaries to function more properly. During that time you can experience menopause symptoms along with PMS symptoms. It can be quite a roller coaster ride! Using hormones during this time may or may not help as you could end up even more unbalanced because as your own hormone levels change day to day, you could end up way too high because of the supplemental hormones you are taking.
Instead, an antidepressant might be helpful. Women who are unable to use HRT for whatever reason, including endometriosis and cancer issues, sometimes are given some type of antidepressant off-label as those meds can help with menopause symptoms including hot flashes.
Random hot flashes can occur even when your ovaries are functioning, but when your levels get a bit out of balance. Headaches can be hormones, stress, the exhaustion, and so many other things! Have you considering see an neurologist for yours? It was a neurologist who finally helped me get all of my headaches under some control.
Has anyone done any blood tests to see if there could be some other health issues such as sugar problems, thyroid issues, anemia, etc.?
Are you keeping a detailed record of your symptoms that you share with the doctors each time you go in for an appointment? This could insure that you are sharing the same information with each doctor. It could also help each doctor 'see' what might be going on and help determine if you are experiencing healing issues, hormonal issues, new health concerns, etc.
Do you have a family doctor you could go see? Maybe your general practitioner would have some helpful ideas for you.
Have you let the doctors know how much ibuprofen you are taking? The dose you mention should only be taken under the care of a physician as it can cause ulcers and cause kidney damage. If you need to take that dose and still are feeling pain, you need to let your doctor(s) as you may need a prescription medication instead.
I wish you all the best! Keep talking to your doctors so you can find some answers for you! in there!
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04-08-2009, 01:42 PM
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HysterSister
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Posts: 8
Hysterectomy: December 10th, 2008
Surgery Type: TAH
Ovaries: Kept 1 or both
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Re: Pain & exhaustion 4 months post-op? (endo patient)
Weiser,
Thank you very much for your reply.
When I had my surgery, they told me that they found no endo - no lesions, no adhesions, nothing. I'm not quite sure how as with my three previous laparoscopies, there was always scar tissue, but amazingly enough, not with this one. Of course, my previous doctor also said there was no endo after two of the surgeries I had with him, but when it came to a point, he admitted that there had been small areas.
And I'm sorry. I don't really buy that my cuff would cause debilitating pain that leaves me sitting on my couch in tears. It makes sex hurt, yes, but that's it.
And I'm getting TOO much sleep. 14-16 hours a night and/or day. Half of the time, my boyfriend has to drag me out of bed.
And I only have one ovary left. One doctor at the hospital said I wouldn't need any testing, but then another did. They never told me,"Oh hey, you might go crazy after this, but we're not going to give you anything to help. You just have to deal with it." I have borderline personality disorder. Before the surgery, I could function normally. Now I can't. And it's NOT just the bpd. And my psychiatrist won't adjust my medications til they test my hormone levels, but they won't.
And yes, I know random hot flashes occur when your ovaries are working. I've had horrible hot flashes for the past eleven years. When I started my period at thirteen, the hot flashes started too. My doctors told me I shouldn't have them after the surgery.
No one has done any blood tests, except when I was in the psychiatric hospital. They said my thyroid was messed up and to get it tested when I got out, but when I got out, they called me and told me to not worry about it, if I had stopped taking the anti-psychotic.
And it's the doctors at the hospital that told me to take four Ibuprofen every four hours. It doesn't really touch the pain either, but I'm not going to ask for anything stronger either, not that they'd give it. We had to fight for them to give me Demerol after the surgery itself.
And I don't have any other doctor, even a gp, that I could go see. I have no money, insurance that covers nothing - my boyfriend and I are living off of my student loans. My parents help with my anti-emetics when they can.
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04-08-2009, 10:23 PM
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HysterSister
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Posts: 149
Hysterectomy: June 2nd, 2008
Surgery Type: TAH
Ovaries: Removed both
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Re: Pain & exhaustion 4 months post-op? (endo patient)
I am so sorry that you are feeling so terrible. It seems that you might be slipping through the medical cracks. If you are living off student loans than your income will qualify you for some of the free clinics.
Can your psychologist contact your Dr that is following you post op? You seem to be established with the psychologist and if He/She initiates the contact and request for hormone, medical testing than maybe you will have some success.
My heart goes out to you. I know what it is like to feel bad, but don't give up. Be persistent. It sounds like you know what you need but just need some luck getting it done.
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