Lower stomach pain doc blamed in Fibro is endomitriosis

Discussion in 'Fibromyalgia Main Forum' started by cjcookie, Apr 18, 2009.

  1. cjcookie

    cjcookie New Member

    I posted a couple of weeks ago about a terrible experience with a doctor and nurse practitioner blaming my lower right quadrant stomach pain on Fibromyalgia and telling me my pain wasn't impressive. Well, my ob/gyn did a D&C and a scope yesterday and found tons of endomitriosis and said I'll probably need a hystercctomy. I had no idea that could be so painful - goes into my back and sometimes down my leg.

    Anyone else with Fibro also dealing with this problem? She burned a bunch of it off but said that was only a temporary fix. If that is so, I want the hysterectomy sooner than later

    Thinking I should call the administrator at the hospital on Monday to let her know what my problem was so she can tell that stupid doctor and nurse practitioner. Not that they would even blink an eye.
  2. TigerLilea

    TigerLilea Active Member

    Rather than phone the administrator, I would put it in writing and send off a letter. That way they have a permanent record of your complaint. I would also send copies of the letter to the doctor and nurse practitioner involved so that they are also aware of the facts. This helps both the hospital to make improvements, and also lets the people involved know of areas where they could do with improving their skills.
  3. Janalynn

    Janalynn New Member

    I agree, don't "think" about writing a letter, definitely do it! You could possibly save a life. Someone having horrible pain that indicates something really wrong, could have a Dr. write it off as Fibro.

    Make sure they know who you are Copying on the letter. Put a cc: on the bottom of the letter to all that you are sending it to.

    I think it's imperative to let Dr's know what's going on. Not even necessarily in a "you screwed up" way, but from an educational point. Unfortunately as patients, many times we do need to help educate anyone and everyone, including the medical profession.

    Im glad you found out what was causing your pain - now you can deal with it, get it taken care of. Sad to hear what you're going through, but you'll get better!!! Yea!

  4. AuntTammie

    AuntTammie New Member

    I have endo, too, and I have the stomach pain you're talking about.....but I don't think my stomach pain is caused by the endo, bc I am on the pill to deal with the endo.....anyway, before going on the pill, though I had horrible symptoms form the endo, so I just wanted to let you know that I can relate....I am glad you figure out what is causing your problem, too
  5. outofstep

    outofstep Member

    Women w/ CFS & FM have higher rates of endometriosis than the rest of the population but many doctors don't seem to be aware of it. You should definitely let the hospital know that this is something that they should be screening for. I'm so sick of lazy drs who blame every symptom on CFS or FM!
  6. 3gs

    3gs New Member

    Please write a letter. Too many docs are getting away with dismissing pts.

    I had a hyterectomy due to endomitriosis in 1983. I know now they have some treatments for it. I would try those first,surgery last.
    I well remember the painful periods and how heavy they were.

    cc letter to everyone you can think of
  7. TigerLilea

    TigerLilea Active Member

    I agree with Janalynn that you want to be careful how you word your letter. You don't want to come across as really angry and agressive. A polite and tactfully written letter will get a much better response and is more likely to get some action taken :)
  8. BeansMom

    BeansMom New Member

    I was diagnosed with the Endometriosis first...Fibro a few years later.

    I had it lasered during an endoscopy. I also did the Lupron hormone injection for 6 months. I haven't had the pain like I used to, but I still get frequent ovarian cysts, very painful periods, and I also have a fibroid that sometimes pushes on my bladder or is painful during my period.

    Yes, I also had the pain into my back and down my legs. It is HORRIBLE. I feel for you.
    Hysterectomy wasn't an option for me, as they were able to laser it all off (it wasn't a "ton" like you described) and I am also under 30...my ob/gyn proceeded more conservatively.
    I'm concerned that she did only a D&C to cut most of it out...I guess if she's going to do a hysterectomy later, it doesn't matter. But the endo also grows outside of your ovaries, uterus, and cervix....so that needs to be taken out as well.

    I was diagnosed with Fibro a couple years after that surgery. In fact, most of my all over body pain began around the time of my surgery. I have read there are a lot of fibro patients with Endometriosis...some people think there is a link. I don't know if there is any scientific evidence.

    I also know that my fibro "all over" pain gets much worse about 1 1/2 weeks before and during my menstrual cycle.

    I agree that you should contact the admininstrator or someone "higher up" and have it in your personal charts....they shouldn't have dismissed your pain as only fibro...pelvic pain should be investigated.
    [This Message was Edited on 04/18/2009]
  9. monica33flowers

    monica33flowers New Member

    I also had and still have endometrosis. I did have a full hysterectomy but due to scar tissue from previous surgeries my bowels were tacked to the inside of my stomach wall. The ob dr. could not remove the endo that was in my intestines.

    I also did the Lupron injections and they made the pain much worse for me. Plus, they put me on a hormonal rollercoaster which was worse than post parton depression. I do know the Lupron has helped many but for me it was a nightmare. Plus, a lot of health insurances will not cover the Lupron so be sure your insurance will pay for the shots since they were $2,000 two years ago and that was per shot!

    I finally had the hysterectomy and I had wished that I had done it many years ago. I felt so much better!!!! But after the hysterectomy came the fibro. for me.

    Be sure to keep everyone involved in knowing about your fibro. Especially if you do have the surgery I would be sure to tell the anesthislogist. They will help you deal with the pain of the surgery much better with pain medication.

  10. sorekitty

    sorekitty New Member

    I was dx with endo stage 1-2 in 2000 with a laperoscopy. They lasered it off. Endo is strange in that those with stage 1 can have massive pain and those with stage 3 (worse) do not even know they have it. My surgery helped a lot.

    I would take your time and research before you have a hysterectomy. I have heard that endo can still be present and grow after the uterus is taken out. So hysterectomy is not always the cure.

    Did they tell you what stage endo you have? I think stage 4 is the worst.

    GL with the letter writing. i think it is a good idea too.