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Terrible Hip Pain Associated with Endometrial Cancer

Bustacrymz's picture
Bustacrymz
Posts: 1
Joined: Apr 2018

I was Dxed with Endometrial Cancer last month. Extremely heavy bleeding for over 2 yrs. I didn't have health insurance and went to a free clinic. 

 

I'd had Pap Tests, blood work, my heavy bleeding was written off as being 47 yrs old and going thru Menopause. My hip and back pain, as well as other health issues, got to a point in which I could no longer work. I was able to get on Medicaid. 

 

Finally have a Gyn that decided to biopsy and ×bam× Cancer. #SHOCKER Lol. I'm in pain management for chronic pain related to severe arthritis and an autoimmune disese. The Dr did Cortisone Injections, no real difference in pain level. My daughter is a Master's Level RN and says my pain could be radiating to my hip as a result of the C. I'm in terrible pain Yell. I have a CT Scan tomorrow (wish me luck) and an appointment at Pain Management the following day. 

 

I am currently an alleged grade 2 or 3 but will know more after total hysterectomy on 05/24/18 

 

I am also having a wicked occasional burning sensation (sharp) about 4 inches below my armpit and next to my pectoral muscle. It feels like Neuropathy. Anyone else experience anything like this? I'm having a mini freak out because the sentinel lymph nodes are located there. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2587
Joined: Mar 2013

Bustacrymz, I am sorry to hear about your pain.  Unless you live with it, I don't think people can truly comprehend what 'living with pain' truly is.  I am fortunate and my heart goes out to you and all the ladies who struggle with it.  You mention a few other health issues which could mask/explain your pain, and I wouldn't even try to guess. 

First I would suggest you see if you can work with a gynecologic oncologist.  They specialize in 'below the belt' cancers and will best be able to perform the surgey and build you a plan.  The CT should show them more than just the biopsy, and is pretty typical for pre-surgery.   

Please let us know how it goes.  I really hope they can help you.

oldbeauty
Posts: 192
Joined: May 2012

Hello, Bustacrymz, welcome to our club!  So sorry to see your Dx, and I sympathize with your pain.  I've had episodes of sudden onset of excruciating pain that were caused by a para-aortic cancerous lymph node pressing on my iliopsoas muscle/nerve complex.  That was resolved thru radiation.  I know all the women here empathize with the fear that goes with waiting for the time between the initial diagnosis and the post-surgical reports that will tell you the stage and grade and histological type of uterine cancer you have.  At this point, all I would say is I hope your surgery is being done by a Gynecologic Oncologist.  Take it from one who made the mistake early on in my cancer career (original dx and 2 recurrences), a "regular" ob/gyn, even one who, like mine, had a good reputation as a surgeon, is not equal to a gyn oncologist who can be trusted to tailor your surgery to removing all the cancer that's accessible AND doing the sentinel node resection that is the standard of care.  You should get the gold standard of care, and having Medicaid as insurance should make no difference.  My hysterectomy was done with an open incision along the "bikini line" and altho' my doctor called in the staff gyn oncologist to consult on the node part of it, that surgeon's operative note stated that the incision selected made it impossible for him to do a complete sentinel node exploration and removal.  I had an early stage lower grade endometrial adenocarcinoma and I always wonder if the "cure" that was declared after surgery and radiation might have actually turned out to be true if I'd had a "gold standard" surgical event that might have revealed a cancerous node up the chain that was not sampled.

Even if you had to delay surgery a short while to get in with the specialist most capable of doing the surgery should not deter you from insisting that a gyn oncologist treat you at this critical juncture.

Come back often to chat as you pursue your course of treatment.  There is a wealth of info here and some very knowledgeable ladies who have met and conquered all sorts of challenges.  Best wishes, Oldbeauty

Caroline1956's picture
Caroline1956
Posts: 1
Joined: May 2018

Hi Bustacrymz,

So sorry to hear about your pain.  I had a similar pain.  It was excrutiating and ran from my hip down through my left leg.  It started about 1 year before I was diagnosed with endometrial cancer.  I thought it was just my age and a type of arthritis.  I had a hysterectomy in January of this year and they believe everything was removed.  A day after the surgery the pain occurred again in my leg ... now to say how bad it was, I was on Tylenol 3's and I didn't feel the surgery, but I felt this pain in my hip and leg.  After that ... it went!  I have had no pain since then.

So here is where it gets interesting.  My daughter is studying her Master's in Physical Therapy at Western University.  She said to me, "Mom, I think I know what happened".  She said there is a nerve the S4 nerve, as well as a couple other nerves, that connect to the Uterus.  The pain I was feeling was because my Uterus was cancerous, and it was like it cries out in pain, and that nerve is attached.  As a result, we feel the pain in our hips and leg because that is where the S4 nerve goes (from the Uterus to the hip and leg).  Once my Uterus was out, I have had no more pain.  Just that one night after the surgery and we think it was a "ghost" pain as the nerve adjusts to the Uterus being gone.  I feel GREAT!  I know your pain.  If it is like mine, it is almost unbearable.  Take comfort in knowing that perhaps once you have your surgery, your pain will disappear as well.  I wish you all the Best ... Caroline in Ontario Canada

grace_of_god's picture
grace_of_god
Posts: 31
Joined: May 2018

Hey there Busta!  I'm wondering how you are doing as you perhaps have had surgery by now.  I also had a dx of adeno carcinoma in the uterus several months ago.  The worst symptom I had was pn and off again pain inside my right hip.  It seemed like where an ovary would be.  I did not have it radiate to the leg though, just that one spot.  I'm about 6 weeks post radical Davinci robotic hysterectomy and because I have had an abdominal abscess intection I can't really tell if it's gone since I've still got a good bit of discomfort in the whole area.  I'm interested to see if it is gone once I heal.  My best wishes and prayers to you and especially that you have lots of comfort and support through this.

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