Additional question on discomfort

I have another question - I was told I had a "simple" cyst, now after the CT Scan, they are calling it "complex".  My question is, I have had lower back pain (6 months now) & since Sept, pelvic and hip pain.  I am now scheduled for an MRI of my spine, x-rays of hips and pelvis, and have to see a GI doctor.  The gyno said the size of the cyst (I think he said it was 2.9 cm) would not be causing this discomfort.  I guess I would just like to know, will a complex cyst go away, and has anyone had experience with pain from a cyst.  I kind of feel like I am getting nowhere - just more and more tests.  Thanks for your input.

[Fiveft4]

I have a simple cyst on my right ovary 3.3cm and a thumbnail size solid mass on my left. I had no symptoms until about 4 months ago when I started having terrible pain in my right hip. Actually, I had been having bladder problems for the past year, but it was with the MRI they found the simple cyst. It was on the follow-up ultrasound in Sept. where they found the mass on the left ovary. I still have hip pain, I have tenderness/crampiness in my pelvis and I still have no concrete answers for my symptoms. I'm set to have another ultrasound on 11/24 to see if either has changed. I've decided that after the next ultrasound I will have surgery to at least remove the cyst and mass - in hopes they will be able to save the ovaries. I would like to at least keep one and I figure the sooner they remove the growths the better the chances. Best to you - it seems like there are no easy answers in this...but follow your instincts - if you don't feel right don't be put off. Doctors are not gods...and we have to take responsibility for our own health. Keep me posted :)

[pjlm]

Thanks for your response.  Have the doctors told you the cysts could be causing your pain?  Ugh, I almost feel like I am being crazy, I just know something is not right, and I don't know what it is.  I know doctors are not gods (I have to keep reminding my husbandof that too) - just hoping for some answers.  None of the doctors have even said the word cancer to me...I just looked up, lower back pain, pelvic and hip pain and it sent me to this site.  Hopefully I am not just planting stuff in my own head.  

[pjlm]

I might add, I missed my period (the first time since I was 11 - other than having my two children) - crampy since Sept....I guess generally feeling "yucky"....

[Fiveft4]

The doctor hasn't said any of my symptoms are related...and that is one reason I'm getting a second opinion. By what I have learned on this site I know my symptoms may very well be related to my ovaries, and what exactly is happening with them is what I'm in the process of finding out. How old are you?

[pjlm]

I am 37.  I have an 11 and a 9 year old.  Have always had "normal" cycles, no problems with pregnancy.  I have had lower back pain, pelvic and hip pain, the feeling of my insides falling out.  This discomfort has not gone away and Advil does not help.  When the doctors said about the MRI, the x-rays and seeing a GI doctor, I keep thinking, oh my goodness, this is what happened to all these women on this site, they were just being sent from doctor to doctor.  Like I said, I don't want to put stuff in my head, but we all know when we do not feel right.  Are you going to see a new Gyno for a second opionion?  

[PPhelps]

Is your doctor by any chance male? I ask because what would they know. They need to start listening to us women. I'm sure they wouldn't like it if a woman doctor told them a little cyst wasn't what was hurting their testicles. I've been on this site for way over a year now. And I've seen women come and go. And everyone wonders about could this cyst possibly cause all this pain and aggravation. I was one them at one time, and Yes it can. It can also effect your hormones.

Yes complex cyst can dissolve on their own, however some do not and, unfortuately only surgery can tell you if its cancer. If it comes to surger make sure you get a gyn/oncologist for the surgery. They are the experts not just with cancer. Most of us get shipped from one doctor to the other, mainly its because they don't know. Stick around here you'll find alot of information from alot of caring and wonderful women.

[pjlm]

YES!!  Both my Gyno and family doctors are men!  So this cyst could be causing all these different things??  Why do they keep telling me that it isn't big enough, ugh!  The funny thing is the reason I went to see the gyno was because of the back, pelvic and hip pain - then after the u/s and ct scan they told me about this cyst.  If you don't mind me asking, did you have a cyst that was causing you pain?

[PPhelps]

My first time on this forum was because of a 1.5 cm cyst. My pain was like when you get a shock from touching something. Only about 10-15 times a day. Cysts can cause all different type of pain. It could be touching or pinching a nerve, which can cause pain in the lower back and hip. I can't say it diffently is the cyst. It could also be a slipped disc, but I would make the doctors prove its not this cyst.

[pjlm]

Thanks for your response.  I guess we will see what the MRI shows - as the next ultrasound isn't until December.  I do appreciate your help.

[Fiveft4]

Did you have your cyst removed? The first doctor told me, "...I doubt any of your symptoms are related, and if it is cancer you're in stage 1 and the odds are good..."  Gee, I feel better! All this without even a look-see inside! I guess ALL women with ovarian tumors or cysts should see him since he seems to know these things telepathically! And this guy is a gyno/onc! The second doctor I will be seeing on the 19th is a regular gyno but is out of a major university hospital and within the group of doctors there are gyno/oncs. Personally, I just want the things removed once and for all - and it can't happen soon enough for me.

[dian07]

Each of your symptoms could be the result of ovarian cysts....back ache and all.....and, someone telling you your cyst is too small to create your problems is the first indication you need a different doctor.  Cysts on ovaries can send us straight to hell and until someone gets to the bottom of all this we stay there.  Don't allow anyone to pat you on the head and act as if you are just a silly little woman who doesn't understand anything and that your problems are either in your GI tract or your empty head.....if you know you have a cyst on your ovary it is time to consult with a gyn/oncologist.....if he or she won't listen find another.....just keep going until you get answers.  You laides know that these idiot docs are not gods....problem is they don't know it!  Hang in there....keep kicking tires and please do keep us all posted.
Peace.
dian

[TGinKY]

Doctors are a trip!  I saw my GYN today (a woman, by the way).  Even with all my symptoms all she did was a quick pelvic exam, said she "didn't feel anything big", and mentioned the possiblity of IBS!! Fortunately, because of this forum, I was not caught off guard by that absurd comment.  Does IBS make your ovary hurt?! Duh! Also, fortunately, I was able to tell her that I had IBS for almost twenty years, and this is not IBS.  She said "If the ultrasound comes back negative, we'll just have to release you back to your GP to consider IBS." It's like they already have their minds made up about what it is, and that preconception flies in the face of all logic.  It would seem that they would be more concerned that the more serious possibilities be eliminated first before they go to their "defualt diagnosis".  Unbelievable!  I do have a US scheduled for Monday, and plan to go to that & drop this Dr. like a hot potato. (This was my first time to see her - and my last.)  Thanks to all for preparing me for just such a thing!

[PF_PVD]

Isn't it incredible!?  I went to an urgent care center since i did not yet have a local doctor since relocating.  I had lots of bloating (ascites), back pain, bowel and urinary issues, post-menopausal bleeding and weight loss.  First test he did was a urine sample, and guess what?  I walked out of there with a dx of UTI!  I got in my car and cried my eyes out because I knew the antibiotics he gave me weren't going to help my condition.  Nine days later I was dx stage 4 ovca.  I curse everytime I drive by the UCC and also laugh, because the doctor actually tried to get me to come to him as my primary!

[Carebear215]

I had a small Cyst on my ovary about 3 yrs ago the doctors told me nothing to worry about.
They did an ultra sound and a vaginal ultra sound all the saw was a small cyst and said it would not cause me any problems to just watch it.
Well here I am 3 yrs later and if you read my other post you will see what is going on.
I have sharp pains on my left side and right side, swelling my left side and sometimes feels like something hard it there when laying down.
I have bad back pain, don't want to eat, bowel problems, had a few times I got light headed felt like I was going to pass out and a couple times leaked urnine out of nowhere and that kind of floored me, because the only other time I leaked urine was when I was prego and I am not prego.
Now I have to wait to have an ultra sound done whenever they get around to calling me next week then I go back to see my doctor on Nov. 20th to get results.
My period oh well its off the charts, some times its late, some times its 2 -3 weeks late, I have skipped a month, its heavy, this is gross I know but I sit on the toiled and blood just fills the toilet.
And when I told the other doctor this , a female doctor at that she said oh thats ok nothing wrong with that.
I hardly eat anything and when I do can't eat much because I get full very easily.

Just want to know whats wrong with me then go on from there.
If its nothing then fine but lets find out what it is and get it done, already tired of waiting.

Thanks so much
Sonya

[Carebear215]

I wanted to add I have been treated for back pain which is really bad at times for the pass at least 4 yrs from one doctor he has given me lortabs, Norco and recently Morphine to treat the pain.
Now I am wondering if its all back pain or partily something to do with this and the pain pills have masked some of the pain I would of felt if I had not been on the pain pills.
Its not his fault , I do have something wrong with my back but wonder if its that bad to be this much pain.
I guess I need to forget about it for now until I find out what the problem is , easier said then done.
Thanks again
I hope all of you are having a pretty good day.
Sonya

[TGinKY]

If I've learned anything on this forum, it's that YOU need to take control of your diagnosis.  I can relate a little to how you felt being DX'd UTI, PF_PVD.  That DR I saw had absolutely no clue, nor even seemed to care, what was really wrong with me.  It was VERY disappointing to realize that I'm going to have to start the "Dr hop" right out of the box.  How did you get such a different diagnosis so quickly?!   Thanks for sharing! :)

[Fiveft4]

I am so thankful this forum is here and I'm able to hear your stories and situations. It has helped me decide what to do. In just the past couple of days I've decided to call the gyno/onc on Monday and tell him I want him to schedule me for a laporoscopy as soon as possible and I want him to first try to remove the cyst and the mass and leave the ovaries. If he can't do that for some reason then I want him to do all he can to at least leave me with one ovary. If the mass is nothing to be worried about then I want him to simply remove it and we can always go back in and do more later if needed. It may not be the simplest surgery for him to perform, but it will leave me able to continue to enjoy my pre-menopausal years naturally. I will keep you posted.

[pjlm]

I too am thankful...I do have to admit, some of the things I read really scare me...hope everyone's issues turn out well, and thank you all for taking the time to respond.

[Fiveft4]

I know what you mean...it scares me too...but if that's what it takes for us to take control of our treatment, then that's okay. Our bodies are talking to us and we need to listen to them - we've lived with them forever and the doctors we meet need to respect that truth and listen to us when we show up in their office.  When we show up with abnormal tests that show growths on our ovaries that don't belong, we need to value ourselves enough to make them prove to us that is isn't cancer...too many stories about being told it was nothing...I choose to err on the side of caution. Best to everyone here :-) Thanks again.

[PF_PVD]

After I left the UCC, I called my insurer's Nurseline and explained I did not have a local doctor and could find no one who would see me in less than 6 weeks and explained my symptoms including the enlarged lymph nodes at my collarbone which the UCC doc totally chose to ignore.  The nurse was concerned about my symptoms and volunteered to have someone get me an appointment within the next couple of days which she did.  I must be just a very lucky person.  Wait... I just reread that sentence and I must modify it to say lucky in finding medical care.
The primary care physician I saw (and liked enormously) immediately picked up on the ascites and with everything else suspected OVCA and peritoneal carcinomatosis (she told me this later, and the exam and tests she ordered bear this out). She immediately sprang into action, even taking the phone to beg for tests herself when they said they didn't have room for me. (Now that's scary!) That day and next couple of days were a whirlwind - Abdominal/pelvis CTs, bilateral mammograms and ultrasounds, blood work (CA 125 2400+), neck & chest CT, redo mammograms, paracentesis (malignant), met with onc and gyn/onc.  Dx of stage iv ovca.  Extensive peritoneal carcinomatosis precluded surgery without neo-adjuvant chemotherapy to shrink tumors, and I started carbo/taxol within ten days.
So, basically I lucked into a female doctor that really listened to the symptoms, considered my age (54), and my family history (mom/sis breast cancer) and instead of trying to first come up with something else, went with her gut feeling.

[Fiveft4]

WOW. That is truly scary. Because you weren't willing to simply wait it out and accept the UTI diagnosis you were able to find the root of your symptoms and were able to get the proper treatment - and that's what I'm going to do too.  I wish you the best and hope things are going well for you now.  I'm counting the hours until I can call my doctor and request surgery. I've waited long enough and he said the only way to know for certain is to go in and look - so, that's what needs to happen.

[pjlm]

Just checking - did you get an appointment with the gyno/onc?  

[Fiveft4]

Yes - I called his office yesterday morning and told his nurse I want surgery as soon as possible. He called back and I have an appointment to make the plan with him on Monday at 2:00. I want to save my ovaries and figure the sooner they take these growths off them the better the chances will be. Plus, I will know for certain what they are. How are you doing?

[pjlm]

Glad you have an appointment set up...that must be a comfort to you.  I hope the time goes quick for you, Monday can seem like a long time a way.  How am I....kind of miserable.....I read something the other day which is really bothering me...It said.."pain is never normal...it is your body telling you there is something wrong"....I keep thinking if it was something really bad, they would have found something in the CT scan....but then I read were people who have a problem, the CT scan comes back normal..and why haven't they mention oc?  All's I did was "google" my symptoms and it sent me here....I have every so called "symptom" except for the swelling of my belly...and the pain from intercourse....though since I have been in so much discomfort, I haven't had sex in 2 months!!!!!!!!!  I am just extremely annoyed right now - the MRI isn't until Friday...my hips are screaming...it feels like I have a baby in my belly...and my back is aching....I would be thrilled to wake up tomorrow morning and feel perfect!!

[Fiveft4]

How long ago was your CT scan? When I learned I had these on my ovaries I 'googled' my symptoms and found out here that the best qualifications a doctor can have in dealing with these things is a gyno/oncologist. I was able to find one who lists himself as a gyno/onco/pelvic surgeon. So, I feel he can handle anything he might find in there and I won't have to be shuffled up the ladder. Have you considered consulting a gyno/oncologist?

[pjlm]

I had the u/s on 10/5 (when they said I had a simple cyst 2cm) - I had the CT scan 10/17 - with them saying it was a complex cyst 2.9cm.  No, I haven't thought about the gyno/oncologist because both my regular gyno and regular doctor kept sending me back to each other - and neither one of them has said to me about ovarian problems...they said the cyst isn't big enough to cause this discomfort, they have mentioned...IBS...diverticilits (sp)..problem with my colon...pinched nerve...all kind of things...except that this cyst could be causing this.  Maybe I am just being parinod...and I probably am...it is just what I read, and I am like....all this sounds like what I feel like...I just don't know.  I feel like I am just being a pyhsco...but on the other hand, I know deep down in my heart something is not right...I almost feel stupid even mentioning this to the doctors...all my blood work was good...wouldn't something show up there??

[Fiveft4]

Well, I went to the doctor on Monday and we have a plan. He explained the cyst/mass on my left ovary in greater detail and it's another fluid filled cyst but it has a solid component also. I asked him what would happen to tip the scale to doing surgery sooner than later and he said if it grew or changed at all. He said we would watch it every 3 months. I don't know about some of you here, but I just couldn't see myself on a monitoring program and wondering if this time would suddenly be the time for surgery. I want more control than that. If these things are in there and don't belong and there's only one way to diagnose them, then I say let's take them out now while I have the best insurance policy available to me and my work is at the lowest lull it will be in for the year. So, he and I decided the best route for me with all things considered is surgery. I wanted to keep my ovaries but he said he was not comfortable with that - at my age 47 - they are at the end of their usefullness and the chances of them being problematic only increases with age. We talked about what all that would mean for me and the decision was agreed upon that it is the best choice for me in my given situation to remove both ovaries. He will begin with a laporoscopy and 6 incisions and will use a robot - 2 hospitals in Portland have them but one has a more sophisticated model and we agreed that would be the best choice since he does think he will encounter scarring and adhesions from 3  previous abdominal surgeries. If he needs better access he will make a 2-3 inch incision starting low and going up toward my belly button.  If things look cancerous he will simply extend the incision further up and do what he needs to do. I feel better knowing we have a plan both of us are comfortable with. He was fully supportive and said my approach to this has been very reasoable and even finished my appointment by giving me a hug. I will have surgery on December 6th and will let you know how it turns out. How are things with you?

[pjlm]

I am glad you finally got to meet with the doctor.  I am sorry that they are going to take your ovaries, as I know you did not want to go that route.  Sounds like you have a very good plan in place.    Isn't a fluid filled cyst with solid compents a complex cyst?

I had the MRI and x-ray's.  The MRI showed a problem with my spine, and the hip and pelvic x-ray's were fine.  I asked if the spine problem would cause the pelvic pressure and hip pain, and he seemed to think it could, BUT..he said it was imperative that I have a colonoscapy (sp) sooner than later.  He said that a problem with my colon could also be the cause of all the discomfort....SO....I again asked him if the cyst could be causing the problem, and he said he didn't think so.  So, my next ultrasound for the cyst is 12/5.  I am not 100% convinced, but I do feel a little better about the whole thing..atleast in the fact that the lower back pain has a cause..I will have to wait and see.  If the cyst looks different (bigger) to the doctor when I go back for the next ultrasound, my husband and I decided we would ask the doctor to remove it.  My understanding is a complex cyst could go away on its own, so I am really hoping at  my next ultrasound there is NOTHING there!

Thanks for the update, and please let me know how you make out with your surgery.  I wish you lots of luck!!  

[Fiveft4]

I thought a simple cyst (fluid only) could resolve on its own if it's due to ovulation - it's my understanding that the complex cysts are the ones most likely to be problematic, and less likely to resolve on their own, and I have one of each. Hopefully someone here can clarify this for us :-)  I'm glad to hear the doctors are listening to you and your symptoms and are doing the necessary tests to find the cause of your discomfort. Yes, I was hopeful at least one ovary could be saved, but when I look at it through my doctor's eyes I am able to see the wisdom in removing them. Looks like both of us will be busy the first week of December :-)  My very best wishes to you.

[pjlm]

Sharon, I know your surgery date is coming up on Thursday.  Wanted to wish you the very best!  I have an appointment tomorrow - we will see how that goes...still in a lot of discomfort, nothing has changed, other than experiencing the "period" from hell...which has NEVER happended to me in all these years.  We will see what the doctor has to say about that.  I will keep you posted.  Please post and let us know how you make out on the 6th!!!  Thinking of you.

[Fiveft4]

Thank you!! I will get back on here as soon as I'm able to let everyone know how it went. Today is my last day at work until January 7th, and tomorrow will be spent doing all the 'prep' stuff...I can't have anything but clear liquid after noon today...so, I will be one hungry girl by surgery time at noon on Thursday! I'll check back in tomorrow night to see how your ultrasound went. Thanks again for your kind words and thoughts :-) Same to you. Take care and stay in touch.

Sharon

[cath66]

A related discussion, worried was started.