What else can go bad?

Discussion in 'Fibromyalgia Main Forum' started by dzlady, May 13, 2011.

  1. dzlady

    dzlady New Member

    I know this is a FM/CFS board, but I find the most support here. I have dx of FM, thinking I also have ME/CFS. I found out a couple months ago I have two bulging discs in my back that is causing extreme pain in my back and left leg. Yesterday, I got a call from the nurse at my dr's office. She has me going to a gynecologist about uterine fibroids, or so I thought. My appointment is on the 6th of June and I needed to have some blood work done prior to my appointment, a CA 125. This is a test to detect cancer!!! Then she tells me I have Complex Ovarian Cysts, which can be fatal if not treated quickly. I have been having this pain, associated with these cysts for YEARS! I have always been told that they were just ovarian cysts and nothing to worry about.

    From what I have found, these are rare, painful (which I knew), can be cancerous and can be fatal if not treated quickly. I am scared to death and on top of it all, I have to wait a month to get an answer. Not sure how I am going to get thru this...

    Teresa
  2. BSHLEEN

    BSHLEEN New Member

    Sorry to here.It always seems like bad news never good. Just believe!! I always try to go with Postive Attuide Brings Postive Results. take care I hope all turns out well.BSHLEEN
  3. Janalynn

    Janalynn New Member

    I'm sorry to hear about all that you're going through right now!

    I'm assuming they did an ultrasound and measured the cysts? I have a friend who actually had a COC. They danger is if they rupture, so I think a lot depends on how big they are. They are both solid and liquid filled.
    A positive note - she was able to have hers removed easily. Even if cancerous, if can be removed and no other treatment is necessary. It's been about 4 yrs since my friend had this done, so my info may be a little out of date. (and I'm not a Dr.!)

    I'm guessing they aren't thinking you need to get in "yesterday", so although it's torturous to wait, maybe that's a good sign?

    Time for some positive thoughts, energy etc. to come your way.... TRY not to think the worst. Arm yourself with knowledge but don't over-read. If you need to make a follow up call to your Dr. just to talk, to alieve some of your worries, I'd certainly do that.

    Sending good thoughts your way!!
    Please keep us posted.

    Janalynn
  4. dzlady

    dzlady New Member

    I went in yesterday for the blood test, the results of which I wont get until June 6th when I see the Gynecologist. I asked the nurse and the social worker (who helped because of the blood test needed) about getting the results of this test before then. The social worker tells me that this isnt a cancer detection test, like I have read all over the internet when searching for information. This is a baseline reading. Whatever! I am getting so aggravated with this doctors office.

    I had a transvaginal ultrasound and I too will assume they measured the cysts. The dr at the office for women came in and talked to me briefly and just said I had ovarian cysts. He didnt tell me they were complex. NO ONE told me they were complex. As far as I was informed, I thought this was something common, normal and no major concern. Other than that, they told me everything looked fine! FINE? Are you kidding me?

    Maybe I am getting upset over nothing, but a close friend of mine went to the ER and they found a mass in her stomach 2 years ago, and failed to tell her. She had to go back to the ER a couple weeks ago, the mass has gotten bigger and she had to have surgery to remove it. AND its cancerous. Was it 2 years ago, who knows? But the point is, they didnt tell her she had this so she could have gotten it removed back then. If it was cancerous, it may have spread unnecessarily to other organs in her body. And this is the same thing they are doing to me. I went to the same ER several years ago about abdominal pain so severe I couldnt walk. They said it was ovarian cysts, no big deal....or was it?

    Have I waited all this time, lived with all this pain and then come to find out I now have cancer, that I might not have had back then?

    Just makes me mad, ya know? This is my life here. I am not a doctor, I pay them to dx me correctly, do what needs to be done and TELL ME. If I were a doctor, this would have been taken care of ages ago. Or maybe they think what I dont know wont hurt me?

    Sorry, just very very angry right now!

    Teresa

    On the upside, I quit smoking 10 weeks ago after smoking for almost 20 years!
    [This Message was Edited on 05/19/2011]
  5. dzlady

    dzlady New Member

    Went to the Gyno and the blood test came back negative for cancer. I have a 2.2 cm cysts, a rather large fibroid on the back of my uterus, very thick uterine lining. I go in Monday for a endometrial biopsy and at that time, we will be scheduling a hysterectomy. This is what I wanted. I will have to take hormone replacement since she is concerned about heart disease, and that's fine, I suppose. I dont know enough yet.

    I am now concerned with having a huge flare. I have to take the bad with the good. What can or should I expect with having surgery and fibro?
  6. kat0465

    kat0465 New Member

    Had them for years, the one before I had my hysterectomy was 5 cm. And they said it looked like a tumor.

    Needless to say I freaked, they did a laproscopy, and until I woke up I didn't know if i would have anything left.
    Turned out it wasn't a tumor, I did have some endo and a fibroid.
    Doc said he bought me a few years before I had a hysterectomy.

    9 years later I had one. Between that time I had a cyst that ruptured, it was excruciating. And more cysts after that than I can count

    I had a total hysterectomy, I had another cyst that was resolving,a fibroid, thick uterine lining, paratubal cysts, and a little endo.

    I can tell you that surgery put me In a huge flare. I was so tired of being worried each cyst was cancer I had the surgery.

    Just weigh all your options, hysterectomys are the #1 unnecessary surgery for us women. There things they can do for the uterine lining if your bleeding bad.

    Also they put mesh in me to lift up my bladder, if they suggest that do not let them put plastic mesh in you!!!!

    My body is rejecting it now, I won't tell you where it's trying to exit from.... Although you can probably guess. So thats another huge surgery for me,which I dont know my body can handle :(

    Get a second or even third opinion!!!!!!! In my opinion.


    Kat
    [This Message was Edited on 06/15/2011]
  7. kat0465

    kat0465 New Member

    Had them for years, the one before I had my hysterectomy was 5 cm. And they said it looked like a tumor.

    Needless to say I freaked, they did a laproscopy, and until I woke up I didn't know if i would have anything left.
    Turned out it wasn't a tumor, I did have some endo and a fibroid.
    Doc said he bought me a few years before I had a hysterectomy.

    9 years later I had one. Between that time I had a cyst that ruptured, it was excruciating.

    I had a total hysterectomy, I had another cyst that was resolving,a fibroid, thick uterine lining, paratubal cysts, and a little endo.

    I can tell you that surgery put me In a huge flare. I was so tired of being worried each cyst was cancer I had the surgery.

    Just weigh all your options, hysterectomys are the #1 unnecessary surgery for us women. There things they can do for the uterine lining if your bleeding bad.

    Also they put mesh in me to lift up my bladder, if they suggest that do not let them put plastic mesh in you!!!!

    My body is rejecting it now, I won't tell you where it's trying to exit from.... Although you can probably guess. So thats another huge surgery for me,which I dont know my body can handle :(

    Get a second or even third opinion!!!!!!! In my opinion.


    Kat
  8. TigerLilea

    TigerLilea Active Member

    Glad to hear that your test was negative for cancer.

    As to the surgery and having Fibro, my sister-in-law has had several surgeries and they have not affected her fibro at all. One of those surgeries was for a hysterectomy.
  9. JewelRA

    JewelRA New Member

    I'm am SO happy to hear it is not cancer!

    I hope the hx will provide you with some much needed pain relief. Of course, it will be hard to go through, but once you recover, you will probably feel better.

    I have never been through it myself, but I have several friends who suffered with cysts and fibroids and they got SO much relief through hysterectomy. I hope the same for you!
  10. dzlady

    dzlady New Member

    I go in for the endometrial biopsy tomorrow at 1:45 and will be scheduling surgery at that time. They will be taking a small bit of my uterus to look for abnormal cells, just to be sure there is no cancer, since I have had abnormal paps in the past. She says it shouldnt be too painful, but recommended I take a mild pain reliever prior to coming in. I am a big baby, especially with pain there, so I have a low mg oxycodone that I will take when I leave the house (its an hour drive to her office). I am hoping for a hx soon afterward. If she told me to come back the next day for surgery, you bet I would be there!!!

    I opted for the surgery instead of medicinal treatments because of the frequent, urgent urination, heavy, prolonged bleeding (for months at a time), sudden severe ovulation pain and all the other problems I have been having. I have a good friend who had one for the same reason and she says she feels so much better now.

    I am just hoping that its a speedy recovery. The Dr is wanting to use the Da Vinci machine and says that if she is able to do that, I will be in the hospital overnight (barring any complications, of course) and that the recovery time will still be 6 weeks recommended, but I wont be in near as much pain as if she cut me open. The Da Vinci robot (as its called) allows laproscopic surgery where she wont get dirty...lol. She will sit at a tv that will show the surgery in all dimensions and she operates the robot. She will be in the room with me, so if there is a problem, she will be able to jump right up and take over manually.

    I'll keep everyone posted....
    Thanks for the support!
    Teresa
  11. dzlady

    dzlady New Member

    I had the biopsy done and my land, It hurt so badly. She went thru my cervix to take scrapings off the uterus, TWICE! It was awful and even with the percocet I thought I was going to start crying from the pain. She said she wasnt able to get much...felt like she ripped it out!

    Hysterectomy will be either the 26th or the 28th, depending on when they can get the Da Vinci robot. She will be removing everything. Post updates later.
  12. Starr913

    Starr913 New Member

    Good luck, Teresa.... my prayers will be with you! SO glad there's no cancer!

    hugs!
    Starr
  13. JewelRA

    JewelRA New Member

    Ouch! That does sound painful! I hope you are feeling better now.

    Will be praying for you in your upcoming surgery!
  14. rickj44

    rickj44 Member

    KAT i just seen one of those lawyer commercials on tv talking about a surgery , using mesh, on women, might want too look into it..
  15. dzlady

    dzlady New Member

    I seen a tv commercial the other day about that mesh too. And when I read the comment, I immediately thought the same thing.

    Sorry, I didnt clarify, july 26th or 28th, not this month, unfortunately. And Yes, It was VERY painful. I am still hurting today. I have to "lounge" on the sofa, kinda on my hip with my feet up on the sofa. If I sit upright, it hurts so much worse. And, I have a lot of pressure.

    I am so anxious to have the surgery done. I have been in the bathroom so much today. frequent and urgent is for the birds.

    Thankfully I had quit smoking about 3 months ago with the help of a personal vaporizer (aka an e-cig) which will make the surgery much easier on me, she says.
  16. rickj44

    rickj44 Member

    Good for you dzlady for stop smoking,you have did your health a huge favour not easy too do..my mom couldnt quit and died in 1997 of lung cancer, she really suffered..never forget the pain she was in.
    good luck with your surgery. Rick