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Post-hysterectomy update

Post-hysterectomy update

Posted by Tizzie 2020 on Mar 22, 2020 7:09 pm

Hi everyone,
I had my total hysterectomy surgery last Thursday.  What an ordeal!  I feel I’ve been through the wringer and back.  The actual surgery went as expected but then things started happening as I lay in recovery.  My blood pressure kept falling; blood count did not look good and I kept feeling an intense pressing on the abdomen.  At first they said that that was expected, but when the other symptoms did not improve, the surgeon came in again and examined me and took me right back into the OR.  They had to open me up again – apparently there was a leaking blood vessel which was apparently missed the first time. So…that was stitched up, the blood pumped up and I was stapled back together again. 

If that was the end of it, I’d still be thankful.  But the next morning, my body, especially my right leg (the side of the leaking blood vessel) was almost completely numb.  Worse still, I had almost no control in some of the right leg and left arm muscles.  For the first time I started hearing the term “nerve damage”, however the surgical team seemed to minimize what I was feeling and called it “internal bruising”, which they assured me would lessen over the next few days.  I stayed in hospital for a total of 4 days.  After a couple of episodes of “buckling” – legs giving away while trying to sit down and stand up, I was referred to the internal physio therapist who showed me a couple of exercises that might strengthen the legs following nerve damage.

I am home now.  There is no improvement in the numbness and weakness – and I now also have excruciating pain all through my back, legs and arms which is  increasing each day.  It’s worse when I lie down, so it’s hard to get any rest/relief and is impeding the recovery.  If all this are the regular expected side effects of coming through a hysterectomy, I’ll stop whining and hope things subside.  But, I haven’t heard about any of this these sorts of reactions. 

With the current pandemic situation, access to hospitals and doctors are as you know, more problematic.  The surgical team advised that should I encounter any issues in recovery, to contact ER services in my community,  At the same time they indicated that having gone through 2 major surgeries, I am at a very high risk for infection, so I don’t know if it’s worth the risk to go to an ER.  I’ll be meeting with the Gyne oncologist again once my path report is ready – that's only in about 2 or 3  weeks time.  My next appointment will be with my family doctor next week to have the surgical staples removed.  Hoping she may be able to provide more information on possible causes of this intense pain and numbness.  In the meantime, if anyone has been through similar or have any advice or recommendations, I’d appreciate to hear about it!

Thanks for listening.  

Re: Post-hysterectomy update

Posted by WeeNelson on Mar 23, 2020 10:29 am

Hi Tizzie 2020‍. Sorry to hear you’ve been having such trouble. I had a hysterectomy a month ago and while there was a lot of pain (still is some) I didnt experience anything like what you’re going through. I hope it either goes away or they can do something about it.

My follow up appointment with the Gyne-oncologist isn’t till April 6, so I won’t learn the path results for a few more weeks unless they e-mail them to me. They e-mailed the result of the pelvic wash, which was negative. Keeping my fingers crossed.

All the best to you.

Re: Post-hysterectomy update

Posted by Lianne_adminCCS on Mar 26, 2020 11:58 am

Tizzie 2020‍ 

Just checking in on you today. How are you doing? Have you had your appointment to have the staple removed yet? If so, were you able to get some questions asked?

Thinking of you


Re: Post-hysterectomy update

Posted by cancertakesflight on Mar 26, 2020 1:08 pm

Like you Tizzie 2020‍ and WeeNelson‍, I recently had a hysterectomy but mine was laparoscopic. Either way, in my humble opinion, what you are experiencing is abnormal and should be taken more seriously. While you dont want the exposure to the virus you dont know what else may be going on with you that could possibly have been corrected if addressed sooner. It's a tough situation. 

I had hardly any pain and had to tell myself to take it easy; otherwise I would have done too much. 

I hope that you get the answers you need and deserve. Please keep us posted.

Laughter is a lifestyle choice. www.laughterandcancer.com/blog

Re: Post-hysterectomy update

Posted by KathiR on Mar 26, 2020 3:21 pm

Hi Tizzie, 

I hope this finds you feeling better. I'm afraid I experienced no pain whatsoever.  My surgery was back in 2017 and, like you, a radical hysterectomy.  Perhaps because I opted for an epidural block for pain control, I truly had no discomfort right from the moment I awoke from the anesthetic and didn't even have to use Tylenol after I got home. I checked with my gal pals at our support group and no one there experienced the kind of pain or discomfort you describe.

Were it me I wouldn't wait.  Either get to your GP or the original surgeon or Emerg.  You have the right to be comfortable.  Hope you get some relief soon and what's causing this is easily managed, 
Big hugs....Kathi

Re: Post-hysterectomy update

Posted by MCoaster on Mar 26, 2020 3:34 pm

Tizzie 2020‍ Sorry that you are experiencing so much pain and I am sure the virus risks are adding to the stress.   Is it possible to phone emergency and get their input about how great the risk of infection is?
Stay safe.

Re: Post-hysterectomy update

Posted by WeeNelson on Mar 26, 2020 6:35 pm

Tizzie 2020‍ , how are you doing?

Re: Post-hysterectomy update

Posted by Tizzie 2020 on Mar 27, 2020 7:14 pm

Hi again,
Thanks  Lianne_adminCCS‍, KathiR‍, cancertakesflight‍, WeeNelson‍, MCoaster‍ 
for checking in and the advice.  I’m still struggling and reaching my wits end because I don’t know what else I can do.  Here’s what I did / happened since my last post.
  1. Went to my family doctor’s office on Tuesday to have my staples removed.  Found out then that the doctor is in self-isolation, and that the nurse practioner would remove the staples.  So that went ok, but I couldn’t get any questions answered.  The nurse suggested going back to the surgical team for their opinion.
  2. I had already called the surgeon’s office on Monday.  The assistant asked me to contact the Resident doctor (who was part of the surgical team).  I left 2 messages – no answer.  On Tuesday I called both the surgeon’s office and the resident’s pager – again no call returned. 
  3. On Wednesday I woke up to the intense pain in my back, buttocks and legs.  My husband took me to the local ER.  We were there for more than 7 hours.  The ER doctor was able to contact the Resident doctor and described what I was going through. They recommended I should have a CAT Scan of the back and abdomen to look for possible signs of metastasis.  The CAT scan came back negative in that respect (grateful!).  But, still no further along to determine other causes.  I asked if the CAT scan would pick up any signs of nerve damage due to the surgery, and was told that it wouldn’t.  A special MRI may be required to that – and apparently the hospital doesn’t have that equipment.  Bottom line – I was told to go back; stay on track with taking the pain killers and get more rest because I’ve had two big surgeries and it will take time for my body to heal. 
I’m so discouraged.  I know what I’m feeling isn’t fatigue due to the 2 surgeries. The pain I feel is very physical and specific and is not getting better with time.  I’m still buckling when I try to take the stairs, or get up from a lower seat, etc.  Although this is likely a result of the surgery, I think the medical team want to separate it from my cancer treatment and will likely encourage me to seek outside therapy for this down the road.  I was planning to get myself mentally prepared for the next steps – whatever that might be – chemo, etc. during what I hoped to be my “recovery period”, but I just can’t get there. 

Re: Post-hysterectomy update

Posted by Elsie13 on Mar 27, 2020 11:59 pm

Tizzie 2020‍  I had my hysterectomy in 2016.   I did not have the kind of pain you describe. I was in hospital for 4 nights.   I have something like a 13 inch vertical scar. At hospital, and at home, I would have a  bad pain when going from lying, to sitting, to standing, (and vice versa) but the pain reduced very quickly, after a few seconds. What you have does not sound right at all. Perhaps keep trying the phone calls, like the call to the surgeon?  Go back to the emergency room in a day or two, if there's no improvement???
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Post-hysterectomy update

Posted by Wendy Tea on Mar 30, 2020 10:59 am

Tizzie 2020‍  I am sorry for your struggles.  Please take your temperature several times a day. When I had a temperature I called the cancer hotline.  If your pain doesn't lessen, can you see your family doctor? My family doctor held my hand the whole way and had access to the reports from my surgeon and oncologist. Be the squeaky wheel. These are difficult times, but you need to be supported. 
I am a survivor. Wendy Tea

Re: Post-hysterectomy update

Posted by Essjay on Mar 30, 2020 11:26 am

Tizzie 2020‍ I'm sorry you are in so much pain and not getting any relief.
You've had major surgery, and it's still early days unfortunately.

I haven't had your surgery, but I've had others and always struggles with swelling, bruising and scar tissue causing physical problems. For example, when I had my lumpectomy and sentinel node biopsy for breast cancer, I had a swelling the size of an orange under my armpit, that took about 6 weeks to go down. Accompanying that I had excruciating nerve pain down my arm. Painkillers didnt touch it, and I pretty much didnt have any sleep for about 6 weeks until the swelling eased and the pressure on the nerve eased off. 

But it did get better, the pain did ease, and I did get to sleep.

I do hope the pain eases very soon for you and you lose some of the numbness. I know how worrying it is.

My best advice is distraction - it was the only thing that stopped me from losing my mind through those weeks...

Best wishes Essjay xx
Triple Negative Breast Cancer survivor since July 2018