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Is it common to feel as lousy, even at ten weeks post-hysterectomy?

Good afternoon, ladies.  Today, I am exactly ten weeks post-abdominal hysterectomy.  I have 'done everything right' when it comes to my recovery instructions, yet I still feel so blindsided by the experience.  After asking my obgyn specific questions and sharing some of my concerns at the six week check-up, I left feeling like a hypochondriac, crazy, and completely uninformed as to the TRUTH about what to expect the next YEAR after surgery.  I have never joined a site like this before, but consider it a last-ditch act of desperation to hear from other ladies who have shared this experience.  I don't know quite where to start, but will keep my inquiry as close to bullet points as possible!!!  Thank you in advance for any wisdom-filled replies!!!

I am 44 years old, and voluntarily chose to undergo a total? hysterectomy, after it was suggested by my obgyn due to an enlarged uterus and the discovery of many fibroids.  With the exception of WAY heavier and more painful periods, I had no idea there was anything going on down there.  I have never had an abnormal PAP smear, irregular cycles, and have had two normal vaginal pregnancies.  The only other change as I've gotten older is a dramatic onset of mood swings, and what I am guessing is early hot flashes???  I have always been a cold-natured person, so I have been confused to experience a sudden 'rushing feeling' in my blood, face getting hot, an occasional night sweat, and just an overall increased body temperature.  Prior to my surgery, I mentioned these things to my doctor, and she said it just sounded like hormones, and that she didn't expect that it was the early onset of menopause.  I was prescribed nothing, and told to enjoy the joys of womanhood.  I am a healthy, active woman, with technically a few extra pounds to spare.  I have always had tons of energy, a normal sex life (I am also a newlywed at only six months in!), and enjoy being on the go.

Fast forward to the surgery.  The surgeons opted for a lateral abdominal hysterectomy due to the bulkiness of my uterus.  They removed my uterus, cervix, and fallopian tubes, but left my ovaries because they 'looked good' and my gyn didn't want to initiate menopause by removing them.  The surgery went well, I stayed in the hospital for three days with an epidural, and have much to my surprise had a severely difficult time getting off of the couch for more than an hour or two ever since.  It has been a solid ten weeks.  I have moved around as much as possible, avoided intercourse (altogether for the full ten weeks, which I will bring up in a minute), lifted nothing over ten pounds for the full six weeks, walked around the block as much as possible, and have been as kind and patient with myself as I can.

Which brings me to the point of my post...  I feel like I am having an outer-body experience.

1.  I was told that 'this was going to be the BEST thing I can do for myself', and that I 'would feel so much better' afterwards.  And this was by other women who have had hysterectomy's!  I don't.  I have two, adult children, and never had wishes to have any more.  I had no attachment to my uterus, and really looked forward to freedom from my difficult periods.  So, why do I feel a strange sense of loss?  I can't believe I'm even saying this, but a tiny part of me feels less 'feminine', all of the sudden.  I just don't feel MYSELF, and nothing is helping.

2.  I think that I could still literally lay in bed ALL DAY LONG, and still feel like I just ran a marathon.  I have ZERO energy, except for one or two odd days a week when I have a sudden BURST of insane gusto.  I've learned to not listen to my body on those days; either that, or pay intensely the day after, due to too much exertion.  How do I 'listen to my body and ease back into activity slowly', when my body serves up such severe payback afterwards?

3.  I am still completely numb, and have a painful 'pins and needles' sensation from the top of my incision to my belly button.  My skin is still peeling across that area, gets 'hot' to the touch by the end of the day, and my incision alternates from dark purple to light pink from day-to-day.  I cannot tolerate ANY touch in that area.  One day I wake up thinking the swelling has gone down and I'm over the hump, and the next it looks like I'm carrying a moose in my pants.  I've worn my stretchy leggins out, and still can't wear anything even remotely fitted.  At my six week check-up, my doctor told me that my scar 'looked great', and I may have six months to a year of discomfort in my belly.  Really?  

4.  My sex drive.  It.  Is.  Gone.  Thank goodness my husband has been OVERLY supportive and has left initiation up to me.  But to be completely honest, the thought of intercourse turns my stomach.  I don't want to be touched ANYWHERE.  I HAVE gained some weight after the surgery, and am still getting used to the unfamiliar shape to my body post-surgery, but I feel like its more than that.  I mentioned this to my doctor, too, and asked her if it was the product of screwy hormones.  She completely discredited my concern, reminded me that my ovaries were still intact, and that I shouldn't be experiencing any changes in hormone levels.  So, why do I not recognize myself, or my new mood issues anymore?  As of today, I am afraid I'll never be interested in pleasure again.

5.  To brings this to a close, I feel like I made a huge mistake going through with this surgery.  I feel like my doctor wasn't honest with me on what to expect, or on exactly what I was in for.  I am tired of moping around the house feeling out of sorts, and wish I could just snap out of it.  This was my first ever major surgery, so I was clueless as to what to expect.  I question myself for not being able to bounce back after ten weeks, and wonder if I will ever be the same.

I apologize that this has turned into a novel of sorts, even though that was not my intention!  I am just desperate for some camaraderie, and to know that some of what I'm experiencing IS truly normal.  Thank you for taking the time to read, and I appreciate any insight you have to offer!

xo  

1 Responses
Avatar universal
I am sorry you are going through this. I totally understand. I experienced all of that too and more because my ovaries were removed albeit unnecessarily just like my uterus.

Unfortunately, your symptoms are common after hysterectomy even without ovary removal. It infuriates me that gynecologists are dishonest about the many adverse effects of hyserectomy.

I hope you can find some help and get your life back! I would be happy to share more if you'd like.
2 Comments
Thank you so much for your response.  I would love to hear more details of your experience when you have the time!
Hi again. Just now getting a chance to respond. I debated on how much to tell you. I wish I had known more early post-op instead of being in the dark for so long.

1. I am sad to say that a sense of loss is common after hysterectomy. Gynecologists lead us to believe that it's psychological but it's physiological. The uterus produces substances that appear to affect our personalities (and even our heart health). My emotions are blunted (although not as much as they were in the first few years post-op). I don't feel as connected to people including those close to me. I don't know how much is due to the loss of my uterus versus my ovaries. But I do know other women who still have their ovaries and have also experienced this loss. Something said by a renowned gynecologist on Oprah (not long after my surgery) resonates with me to this day - "the uterus is a woman's heart center." Not surprisingly, she was known to do hysterectomies for benign conditions. In fact when she was doing her residency, the saying was "there is no room in the tomb for the womb." How sick huh?!?

2. As far as energy, you are still early in recovery. Even though women are told 6-8 weeks for recovery, hysterectomy takes a toll. I have read that recovery takes 6 months to a year. I was always full of energy but that all changed after surgery. Over time, my energy has improved significantly. I don't know how much is due to HRT (estrogen) but I started that by 6 weeks or so post-op so can't attribute it to that in the early years. The biggest hits for me (after rapid aging due to the removal of my ovaries and possibly long-running post-op diarrhea) were severe depression, extreme irritability, feeling overwhelmed by the smallest things, and lack of motivation.

3. Some pelvic discomfort is normal. And yes, it may go on for awhile yet (another thing gyns do not disclose beforehand!). Yours does not sound normal especially the "hot" to the touch. I am not sure about the color changes to your incision. I wouldn't expect swelling at this point either. Hopefully, you can get some answers!

4.  I understand the loss of sex drive. I am so sorry. I cannot even imagine being a newlywed and having that! :( Kudos to your husband for being supportive. Mine has been too. I was also repulsed at the thought of sex and did not want to be touched or even looked at. Thankfully, I am no longer repulsed but don't have desire either. I am considering trying some testosterone cream. I HATE that I have to go to that length but am hoping for some benefits besides libido! Your doctor is, again, not being honest with you. Hysterectomy usually causes impaired ovarian function. Studies prove it.

5.  I know how you feel - that awful pit in your stomach when you realize you made a big mistake. I tend to obsess and it about did me in. I ruminated constantly about how I could have done things differently and how my gyn betrayed me in such a horrific way. And how I couldn't trust anyone any more. And there were very few people I could even talk to about it for various reasons - embarrassment, people don't want to hear it, etc. So I finally went through counseling. I went through several therapists before I found one who really helped. This surgery is so prevalent so people think it's no big deal and we are making a "mountain out of a mole hill." Therapists evidently included. Ironically, the last and best therapist was the youngest and still working on certification.

I also apologize for my novel. I know all too well the feeling of desperation and needing to connect with other women who understand. I am here for you. xo
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