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Help confused and scared. With complicated case, massive pain and no answers.

snowangel05's picture
Posts: 6
Joined: Feb 2014

.I have had a light dull lower back ache for about 4 months now that increased in pain a bit toward the end of december.  A month ago I wound up in the ER, treated for what they said they didnt think was but had no other explaination for a UTI, The next night back to the Er the pain so bad I could not stand and a CT Scan was done.  I small 3 cm ovarian cyst and a fybriod were found, so they added ibubrophen to the Vicodin and sent me home.  The next day I saw my Internal Med. Doc, she changed me to Occy Codone and ordered blood test with a referal tomy gynocologist.  5 days later i saw the gynoclogyst and she said it's nothing OB in her opinion that neither could cause that much pain and sent me back to my Doctor.  My doctor had done a CA125 and the gynocologist did not know this at the time the number is 200.  So the gynocalled my back saying i needed a D & C with Biopsies immediately, surgery was done 1/15/14.  9 days later she tells me the biopsies are negative, but she wants me to see my doc again and feels my doc should refer my to specialist.  They refer my to an gynocoligical oncologist who looked at my tests, CT and then has a surgical nurse call to set up a complete hysterectomy.  Every question I tried to ask the nurse told me the doctor would answer at the surgical consult.  this isnt until 3/4/14. No-one will tell me why they feel i need a complete hystorectomy.  Can anyone help from your knowledge and experience.  The pain comes for days at a time then goes,so I am on and off heavy narcotics and fearful of that also.


I saw my GP late yesterday and was finally given SOME information and the reason the Gyn/Onclogist wants to do a complete hystorecetomy kind of.  My GP and regualar Gyn had decided along with the surgen that it was best to give me as little information as possible until close to the surgery time for the sole purpose of reducing my stress.

To clear something up:  I have to travel to see an gyn/oncologist.  Surgery is only 5 weeks away after reading what many of you went thru.  I am now taking heavy nacotics which have the pain tolerable most of the time if i do not move around much.

So appaerently my surgen did call my GP and told her to explain more, after my 3rd tearfilled message to her, so today I was told the folowwing: 

I have a what looks like, but they are not 100% sure dure to abdominal swelling a simple cyst on my left ovary.  My right ovary they cannot tell me anything about because they could not see it on either the CT Scan or Vaginal Ultrasound.  In my Posterior Uterus is a Ill-defined Complex Partially Cystic Mass with Debris size is 4.58x4.9x4.4 cmwith my uterus measuring 6.6x6.1x5.1.

What has the doctors unsure is the D&C that they did showed no cancerous cells, yet I have this large uterine mass with the CA125 at 200.

This is why the gyn/oncologist feels that in light of the L ovary cyst & it's size, Plus the inability to see My R ovary at all, the CA125 and severve lower back pain combined with the uterine mass a complete hysterectomy is best. 

I have not gone thru menopause yet am close to that age range and have no intention at this stage to have children of my own.

Also, after much digging here on cancer.org I did find that going straight to a hyserectomy is sometimes used in cases with complicated and conflicting information and the back pain if what has my doctors the most concerned that if there is uterine cancer there that could be a strong indication it has already spread beyond the mass.

I also have Multiple Sclerosis and know all to well how doctors can be about giving bad news to patients.  Thank you in advance for any help, simiar expereinces, suggestions and advice you all could offer as I am still confued and worried, as the conversation with my doctor did end again with we "we just dont know".

Currently up to 8 mg of OccyCodone every 4 hours with Zofran for nusaea to keep the pain mild.

NoTimeForCancer's picture
Posts: 1949
Joined: Mar 2013

Snowangel, I think all of the women here have responded to news, surgery, and treatment differently.  We can tell you some things but others you will find out. 

I am happy to hear that they finally told you what they thought.  I hated my radiologist for NOT giving me enough information and he knows it.  TELL ME - I might not like what you have to say but I can deal with it.  It is not up to them to determine what we should or shouldn't know. 

In the end we do want our doctors to do the best for us.  Take a breath.  This is one day at a time and all you know right now is you are having the hysterectomy.  Don't get too far ahead of yourself at this time. 

I hope the pain medicine and nausea helps you.  For now, those are the things to take care of.  

snowangel05's picture
Posts: 6
Joined: Feb 2014




Posts: 683
Joined: Apr 2010

So Sorry you are having so much pain and no positive answers.  I would like to mention to you that I am a cancer survivor and I have many friends and family members who had similar symptoms you are having and had hysterectomy and never knew the exact reason why.  My niece who is just 41 had the same symptoms and had the surgery, and back to normal.  Fortunately, none of them had cancer.  So dear friend, let's wait and see and try not to get too anxious.  I know easier said than done.  You are seeing the right doctor, GYN/Onc.  I wish you peace and hope everything goes well.  Please let us know how you are doing.  Sounds like you are in Europe.  Best wishes. By the way,  just a suggestion!!!!!ask them what they think of a complete hysterectomy.

snowangel05's picture
Posts: 6
Joined: Feb 2014

FYI:  I did as why a complete hysterectomy.  Encouraging to hear your niece and several friends were all cancer free and you are a surviror.  Iam on another contenient.  Hoping to hear more from others still, but yes will keep updating.  Thank you.

Posts: 81
Joined: Dec 2012

Dear Snowangel,

So sorry to hear of your pain and concerns. I send healing thoughts and prayers for pain relief now, and for a successful surgery.

Many of us on this discussion board know how hard it is to wait for results, and how the mind spins scary stories which just cause more stress.  When I get nervous waiting for test results, I tell myself "worry doesn't help or change the result" and find something to distract my mind.

I don't think pain is a good I dictator of the severity of the situation, but a factor of where the cyst or tumor is pressing. 

Sending you thoughts and prayers for healing and comfort,




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