Painful Ovarian cyst

[blessed32]

Hi Everyone,

I don't know if I posted this in the right forum or not.  I am a newbie.

I am 32 yo had a hysterectomy in 2002 (ovaries were left).  For the past two months I have had excruciating Lower back pain that runs down my leg, and my side hurts and my left ovary hurts.  I went to the Dr. told her about the back pain and she sent me for an MRI.  The MRI showed a large hemo (sp) cyst.  So my GP didn't seem to concerned so I took it upon myself to make an appt. with my GYNO.  My mom's cancer started in the ovaries and she died 9 months latter.  

So I went to my GYNO and he sent me for an Ultra sound.  I went for my ultra sound today and she said yes I have a cyst and that is all that she said.  I called my Dr. he said he doesn't have to results but finds it hard to believe that a cyst would cause all of this trouble.

I am only 32, I cannot function I am in so much pain.  I literally have to stay on pain killers. (which only half way work).  

What do you do to get Dr's to listen?  I have been in so much pain, I cannot live my life this way!!  He says maybe it is something to do with my back, well my mri showed nothing wrong with my back.  

He is insistent that a cyst doesn't cause this.  

Has anyone else has this problem?  Please share, I am at my wits end!!

[Casey06]

I suggest you see another doctor and tell them to kindly figure out what the pain is from.
Don't let them tell you it is in your head.

Good luck.

[blessed32]

Well my gyno said my cyst has gone down to 1 cm and there is no way that it can cause all this pain.  So I went to a spine surgeon and he says my back is fine.

So what do I do?  I think it is the cysts.  Some days I am ok, others I am not.  It hurts where my ovaries are and my side hurts as well and the back pain is horrible.

I guess I will just have to live with it : ( everyone thinks it is in my head!

[hatgal]

One more tap I have that I will NOT use - my brother is a pharmaceutal (sp?) rep for a very well-known company (he's their top rep year after year); I'll tackle him some other time.  Actually, several months ago I did tell him I wanted to talk to him about something along these lines, particuarly the LPA test that has "fallen off the shelves".  For any of you that don't know what the LPA is - briefly - it was a test that was being researched in Tampa, I believe, that detects OVCA 95-97% of the time and just for OVCA, nothing else.  Pretty good odds, wouldn't you say?  Well, I think the research project ended up in the wrong hands, and "dump" - it was no longer out there as an option or even on the books for approval or final testing.

I think you can stil look it up on the web; put in LPA ovarian test in the search engine and see what comes up.  I will do this again when I have time.

OK, that's it for now.  Best to all again....... Elizabeth

[hatgal]

I sure hope I didn't offend anyone with my "male" remarks, but God help us .... it's so true!  You're absolutely right, Star.  They certainly don't blow off (no pun, please) men the way women are.  That would be a great lead in line (or headline) and it would turn some heads, hopefully in the right direction.  I'll tell ya what doctors tell men for everything - from a nose bleed to a prostate issue - let's run all sorts of test and get to the bottom (no pun, please) of your pain........ I live in the Chicago area and if I can get some newspapers rolling on this when/after the article is set, I will do everything in my power and tap every resource I have for this.  I have family members in some high places (politician, doctor (ob/gyno, in fact), lawyers, techies, teachers, etc.).

I'll be there Sunday and I will try to be as tactfull as I can, but apparently tact has gotten us women not alot of places.  Seriously, I just want to state the facts, ma'm!

Best to all......... Elizabeth

[Casey06]

Female docs are no better as far as I am concerned (this cavalier ,uncaring approach is not gender specific). I saw 2 different female Ob/Gyn's, 1st one tested me for lupus and B12 deficiency (didn't quite get that), 2nd one said my symptoms were no way caused by the puny cyst and I was drinking too much coffee...i'll give you coffee..right in your lap lady! Finally saw Gyn/Onc and he wasn't that much more compassionate, but at least we could discuss the facts intelligently and he offered to do surgery and explained the reason for it and all. Funny thing was the 2nd Ob/Gyn did not recommend surgery until the Gyn/Onc did, then she wanted to do the surgery herself, which is a big no no, if cancer is even remotely suspected (which she finally admitted was a possibility). Why would I let a less qualified surgeon do the operation when the gyn onc had already scheduled it. I sensed selfish motivations (like the $20K+ fees!!). It's really unbelieveable, but apparently not uncommon.

[cirella]

Hi Marty,
I wasn't sure if you wanted these type of opinions for Sunday but after reading hatgals post I'm going to really try to be there.  I already went to the room to check it out.  

Take care,
Lori

[SimplyStar]

just thought of a wonderful leadin for our newspaper artical    According to 99% of women interviewed  all say ovarian cysts cause pain,  just like prostrate cancer does. But women are told it is all in their heads, what do doctors tell the men? Pain means something is wrong.  A womans ovary is as important to her as that darn bag is to men.   lol   Just kidding gals, this would blow the lid off somewhere  .  Marty

[Ms_Makita]

I agree with all of you!!! they have no idea how cysts are and the pain can wreck havoc!!! I been over a year dealing with them and  along with 120lbs weight loss and ovc symptoms.My cysts are complex on both ovaries and 3cm....in a year have not went away or grown.They tell me isnt root of my pain but I been in hospital for partial small bowel blockage in Oct,and many er visits for cyst pain......as I understand ovc can cause  bowel blockage too? had colonscopy and its normal.I'm at my wits end getting any dr to listen to me and be took serious to get to bottom of pain and ongoing (worsening) symptoms.Helps to know I'm not alone....God bless all of you!
                           Stephanie

[hatgal]

I DID break down in my doctor's office last year (both my gyno and the onco/gyno) and they just patted my hand and told me to get my stress level under control (meanwhile I had a TVU and soooo much pain to prove that there were cysts and fbroids).  That was the last time I went back to any of them, until now because although the cysts have been a bit less painful throughout the year, the ones I have now (and probably the bigger fibroids) are causing excruciating pain.  For all I know they may be left over from last year and have just twisted a different way or are leaning on a nerve again.

I've got one for ya - suppose instead of a nice pre-test to show prostate issues, they rip open a man's balls and anus because that is the only way they will know what is going on with all the prostate pain and limpness the man is having.  Yeah, don't think so.  That's all we women have now is exploratory to actually confirm WHAT is going on.  However, the doctor's are reluctant to do that (and I don't blame them for THAT as it is kind of radical), but they must realize until they get off their research ***** that this is the only way and it's not a good one to detect something in us women.  I hope to be on Star's chat on Sunday to speak my mind very clearly about all of this!

Oh, goodness, best to all of you.  I think I'm heading to the ER tomorrow morning as I cannot go another day with this pain, fatigue, etc., etc.  I am absolutely not myself and I hate it!

Take care...... Elizabeth

[stephlovespeter_xo]

Sorry, another thing i wanted to add that i forgot to add in my previous post. Isn't it funny that the doctors most of us usually have to fight with about all of this are the men. I just think it's funny that they can sit there and tell us that a large foreign object that shouldn't be in our body shouldn't hurt - those doctors are full of it. Who are they to say that, they don't know what it feels like? they don't go through it. I get mad at my boyfriend all of the time about it because it frustrates me so much. When they get kidney stones, they are the biggest babies (I know that kidney stones hurt) but living with the pain that we live with day in and day out, it's horrendous for some of us. They need to learn to stop making comments like that. I would just ignore any rude comments that your physician says to you. They should try living with a large cyst in their body and than get back to us. I'm so sorry, it just makes me so mad. I'm going through one of the hardest times in my life and some doctors have the nerve to say that it doesn't hurt. Please!
Hope and Faith to all:)

[stephlovespeter_xo]

Hello!
I hear this way too often - Doctors who just don't listen! As I was reading your post, it sounded a lot like what I am going through. I have been dealing with reoccurring cysts for just over 2 years now and they have completely ruined my way of living. My pains have always been bad but about 5 months ago, my pains went from bad to horrendous. I wad adamant that there was something seriously wrong. The thing that kills me is that we all know our bodies; we know when there is something wrong, not them. Sometimes all it takes to make them listen is to not steer away from what you want, do not give up - I didn't. Sometimes it takes being annoying in that sense that you don't let up on asking your physician for options or for tests. I know for me, when I first started going to see my current ob/gyn, he was a little worried to be doing surgery on me again. I just recently had a 2 laparoscopy's and a laparotomy in Jan & Feb of 2006, one being general surgery and the 2nd being emergency surgery. My ob/gyn was afraid that we would run into major complications due to all of the adhesions and swelling in my lower abdomen. I remember one time in particular that I broke down crying in his office with my mom sitting next to me because of how the pain has ruined the last 2 years of my life. It was a low moment for me but I felt like that day he got a real sense of how badly this pain affects me on my daily life. You need to remain adamant with your doctors, if you know within yourself that there is something wrong, don't give up - keep fighting. There is a logical explanation as to why you are in so much pain. 1 year later, and my last ultrasound came back with the radiologist's first consideration being given to ovarian malignancy; I have 2 cysts (1 being complex, and the 2nd with echoes) measuring up to 9.2cm as well as an enlarged ovary, in total, everything measuring up to 15.9cm. Please, don't give up. Had I given up, they probably never would have found this and I just might have left this too late (if it turns out to be ovarian cancer). I can't help but blame my doctor. The ultrasound that found the malignancy was in May of this year but my doctor chose to disregard it because of my age. He's one of those doctors that likes to think he has a crystal ball in front of him - he told me that the radiologist probably said that to cover his own butt. Now, 5 months later, I have a report that comes back saying I have a complex cyst and I am scared to death that it could be cancer - a part of me blames him. Had he not been so cocky, this could have been fixed so much earlier. Do everything you can to make your doctors listen. No one should have to live with the pain that we have to live with day in and day out. I stuck it through and am now having surgery next Thursday. You can do it! You will be in my prayers.
I hope that this helps.
Hope and Faith to you during this troubling time,
& keep me posted on what happens!
best wishes.

[cirella]

Elizabeth - Good for you!  I'd not thought about taking the posts to the doctor.  I keep saying that it's so hard to believe that any GYN would not know that cysts can cause pain.  If they did a poll of their own patients I bet 90% would say they had pain with cysts.  Why do they poo-poo it?

If you have to, jump through the hoops (GI route).  It's their way of ruling things out.  Unless you get a sympathetic GYN who will actually listen you may have to do this.  There's always the ER for the pain but I wouldn't let them throw more painkillers at you until they've checked you out.

Blessed - Given your family history I would think they'd be a little more proactive.  So sorry about your mom.  All this must scare you.  

Take care,
Lori

[junamgen]

Good for you!!! Very pround of you and GO FOR IT!!!! BTW I was 43 last year when I was dx

jun

[hatgal]

Oh Lord - If I hear this once more........ I am going through the exact same thing with doctors and all kinds of them say that cysts don't cause this pain.  I TRULY DON'T UNDERSTAND THIS when all of us that have them and all of the others that actually have OVCA say they absolutely do cause all this pain.

I am also on pain killers and, as you say, only work a little to ease the pain.  I have a cyst on each ovary and fibroids and they are causing EXTREME pain in my groin, abdomen, thighs (inner and behind) down my legs and into my calves.  I've been on the doctor roller coaster for about a year now and after a major flare up of cysts last year, they came and went with some pain, but the ones I have now are making my life normally unlivable!  One gyno a couple weeks ago prescribed vicoprofen and the nurse today at another gyno's office told me to take some advil - I almost jumped through the phone - I said, honey I'm taking narcotics that hardly touch the pain and she was like, huh, I don't think cysts would cause that pain, have you seen a GI doctor yet?  I almost went ballistic on her!

I have two appointments with two different gynos for next week and by the time I leave each office, they will know that cysts DO cause this much pain!  I am printing out several posts from this forum and marching right to their face!

So I urge you also to take the advice of junamgen and seek the help she advises; I am basically heading in that route myself.

I am so sorry for you; I literally feel your pain (and I am only 43).  Take care....... Elizabeth

[junamgen]

Sorry to hear what you have been through. I'm jun was dx 3c last Nov.  I do have back pain when get dx, also have seen a lot of posts with leg pain you mentioned. Since your mom died fron OVCA. I would highly recommend you see a GYN/Oncologist. Unfunately you do have to push every step youself, belive your feeling and stick with it. get to the bottom of your pain.  It is your body your are the one experience the pian, not your Drs.  I can assure that back pain can be caused by a cyst when it press on nerves.  Tell your GYN/ON dr your mom has ovca. If cyst is big and you have so much pain. Then surgery should be a way to go. Remember the best surgen for these surgerys would be a GYN\Oncologist. Please let us know your progress. Jun