Unsure

Clight7862

I've been reading this board for awhile because of symptoms Ive been having and need some advice on how to proceed.

Almost a year ago I experienced right ovary pain during sex.  I went to my gynecologist who did feel it during the pelvic exam ( or caused me to feel the pain) and scheduled me for an ultrasound.  Between the office visit and the ultrasound, I began feeling a dull intermittent ache in my middle left back.  I thought about calling the gyno and letting them know but figured they'd find what they find regardless of me telling them about the back ache.

A week or two later, at the ultrasound appt, I had just started my period.  The examiner explained how ovarian cysts and ovulation works and that my functional cyst had burst as it should and she did mention excess fluid and showed me the red blood cells in the fluid.  My gyno called back and said it was normal but if it continued we could take a big step with exploratory surgery but first I should have other things checked out.

So after that and continuing today I've had a myriad of symptoms that come and go but the most constant being the left back pain. Next would be ovarian pain but it is so short in duration, it's not crippling, just enough to make me feel like something's not right, thigh pain and less occasional nausea.

Since then and now ive had an x ray that showed my kidneys normal size, no sign of kidney stones, colonoscopy that was good, endoscopy that was could except showing slight gastritis, two ct scans that were good but I did notice on the report that it showed a right follicular cyst, good Pap tests, and good blood work.

Now, aside from the back pain, I am experiencing very bad thigh pain and some calf shin pain. 

I saw my gynecologist a couple weeks ago who scheduled me for another ultrasound and wanted me to be thinking about the exploratory surgery.  I went today and the sonographer saw an inch cyst on my right ovary and many smaller cysts which she said were normal. 

I want to get to the bottom of this but don't want to have surgery unnecessarily or waste time if it is something else.  The only other things I could maybe do first is see a urologist, get an mri, and possibly look into vascular problems??

did any of you have similiar symptoms and what would you recommend?

Susan P

unsure

Hi   I had my uterus out years before this - both ovaries were left ( big mistake) so hadn't had periods for years.

 the synptoms that bothered me most was my hard abdominal swelling f( ull of fluid from the 4" tumor on my ovary ( 8 liters on first drain) hard & about like being 3-4 mos pregnant & obviouis changes in bbowell & bladder habits.  couldn't  eat as much as usual - got full very quickley & what little I ate I usually threw up.

 

Littleor next to no abdominal pain/discomfort other than the swelling discomfort

 

one rthing I've learned about  Iovarian cancer - is there are many many relevant symptoms out there and any 2 ior 3 of us seldom share the same ymptroms - that is one of the main reasons it is so hard to diagniose.

 

 

don't panic ye no amount of worry will change any thing - at  least you are dealing with it now & trying to get a diagnoses.

 

 

don't know if this helps - just my situation  - quit scaring yourse lfon  Gogle & let the sientific tests come up with the answer.

 

 

update us on your findings

 

Best Wishes

 

Susan P from Alberta & TX & WY

 

 

 

 

 

 

Kaleena

Are scans an option?

Hello Clight:

Sorry you are experiencing some problems and worry.   Almost two years before I was diagnosed, I started to feel pain during sex.  Then I would get the lower left back pain and abdomine and then pain that radiated down my left leg.   I would also feel like a vibration sort of thing in my left leg (which I thought was some sort of motor running somewhere in the house that I felt).   I went to my PCP and he thought I needed depressants which I rejected and then I told him I was also having bowel symptoms so he ordered a colonoscopy.   I had that done and it was fine.   The pain was getting worse and it would begin in my left thigh area and then proceed to my lower back.   As the months rolled on, the pain worsened tremendously.   I was taking motrin daily now (never took it before).   I decided to see my gynecologist.   He said that I always had endometriosis (didn't even know that) and he wanted to do a laparoscopy.   He did one and said that my scarring was so bad that he would need to do a total hysterectomy.   I wanted it done immediately because the pain was so bad by this this.  But I had to wait an additional 7 months because he wanted me on Lupron which put me in a medical menopause to help soften the lesions.   I had the hysterectomy and after the fact they found that I had Endometrial Adenocarcinoma (Stage3 3, Grade 2) and had to have another surgery a month later for staging.

Please note that this is only my experience.   However, I did ask for certain tests (CT, MRIs, etc.), but I was told I didn't need them because they felt it was just the endometriosis.   I did however have an internal ultrasound and it just showed I had a deep ovary and tilted uterus.   (by the way, cancer was found in my uterus, left ovary and cervix).

I would probably ask for a CT scan or an MRI.   Because of how insurance companies work, they probably won't give you a PET scan unless they see something on a CT Scan.   But I would discuss these types of tests with your physician if you are concerned.

My best to you.

Kathy

Clight7862

Thanks so much everyone.  My

Thanks so much everyone.  My gynecologist saw multiple follicular cysts on my ovaries but doesn't believe this could be causing me so much pain. All of symptoms started when I had that first ovary pain though.  But what do I know.

 

Anyway, he does think it could possibly be endometriosis and said we could schedule exploratory surgery.  I did ask him if he would do the surgery and he said yes.  He didn't mention anything about an oncologist being there.  I've read that a gynocologist oncologist should do the surgery.  But Id have to start over looking foe someone new.  

What do you guys think? Did a regular gynecologist do your surgeries? if I were to have ovarian cancer, would it be painfully obvious to anyone or would biopsies need to be taken?

I'm sure I sound paranoid and it's probably endo, but I'd hate to have surgery, even if it's just laprascopy and have to have it again later.

Kaleena

Clight7862 said:

Thanks so much everyone.  My

Thanks so much everyone.  My gynecologist saw multiple follicular cysts on my ovaries but doesn't believe this could be causing me so much pain. All of symptoms started when I had that first ovary pain though.  But what do I know.

 

Anyway, he does think it could possibly be endometriosis and said we could schedule exploratory surgery.  I did ask him if he would do the surgery and he said yes.  He didn't mention anything about an oncologist being there.  I've read that a gynocologist oncologist should do the surgery.  But Id have to start over looking foe someone new.  

What do you guys think? Did a regular gynecologist do your surgeries? if I were to have ovarian cancer, would it be painfully obvious to anyone or would biopsies need to be taken?

I'm sure I sound paranoid and it's probably endo, but I'd hate to have surgery, even if it's just laprascopy and have to have it again later.

Blood Test - CA-125

If you really want to skip the surgery aspect of this at this time, you may want to ask for a CA-125.  Although this test is not a good indicator for everyone, it can or may tell you if there is something going on there.    It is a simple blood test.   Ask for it.    In any event, it would be good just to get a base-line on this test since you are having some pain and do have some cysts.

Also, it probably wouldn't hurt if you got a second opinion from a gyne/oncologist.   

With regard to gynecologists doing surgeries, they have to be certified.  My regular gynecologist was also a surgeon.   Some are not.   My regular gynecologist did my laparascopy and my hysterectomy.    

Finally, endometriosis (not cancer) alone can be very painful.   Ask for more information on that from your gynecologist.

You have to do what is right for you.   If you are not feeling well and even though a physician tells you it is nothing, but deep down you feel like its more, then go for a second opinion.  Sometimes we don't always express exactly how we feel or cannot relay the symptoms to a degree which a physician understands.  Also, sometimes we may have a tendency to make a physican think its really not that bothersome when in actuallity it is.  (Believe me, I have done this!)

I hope this helps.  My best to you.

 

Kathy

Clight7862

Kaleena said:

Blood Test - CA-125

If you really want to skip the surgery aspect of this at this time, you may want to ask for a CA-125.  Although this test is not a good indicator for everyone, it can or may tell you if there is something going on there.    It is a simple blood test.   Ask for it.    In any event, it would be good just to get a base-line on this test since you are having some pain and do have some cysts.

Also, it probably wouldn't hurt if you got a second opinion from a gyne/oncologist.   

With regard to gynecologists doing surgeries, they have to be certified.  My regular gynecologist was also a surgeon.   Some are not.   My regular gynecologist did my laparascopy and my hysterectomy.    

Finally, endometriosis (not cancer) alone can be very painful.   Ask for more information on that from your gynecologist.

You have to do what is right for you.   If you are not feeling well and even though a physician tells you it is nothing, but deep down you feel like its more, then go for a second opinion.  Sometimes we don't always express exactly how we feel or cannot relay the symptoms to a degree which a physician understands.  Also, sometimes we may have a tendency to make a physican think its really not that bothersome when in actuallity it is.  (Believe me, I have done this!)

I hope this helps.  My best to you.

 

Kathy

Kathy,
I cannot tell you how

Kathy,

I cannot tell you how much your response has helped. That is exactly how I feel, that somehow I haven't communicated well enough what's going on.

Anyway, I have an appointment for a second opinion Thursday with a well respected women's care unit in our area. I don't think I mentioned it before, but my current gynecologist is someone I just picked after the one I trusted and had a long relationship retired. I just have never trusted or felt really comfortable with him.

So, I will see what she says and I will mention the CA 125 test too.

Thanks so much!