endometriosis gripe thread

Discussion in 'Women's Issues' started by mamaboogie, Jun 6, 2006.

  1. mamaboogie

    mamaboogie anarchist

    called today to have my medicines refilled. So if it's working, why can't I just continue to take Tylenol3 and progesterone cream? I'm happy with this situation, I can function, I am able to take care of my kids except on the very worst days. Doc won't refill my T3 without me seeing him again (I just saw him a few months ago), says if the pain is that bad we need to reevaluate. But the pain isn't *that* bad, not if T3 takes care of it, at least in my opinion and from my past experience with endo pain. It's not like I'm on oxycontin or morphine or something like that!! geeeezzze

    I know what he's going to say already. I'm totally not open to a hysterectomy, or to birth control pills, those are the options he gave me before, and I talked him into the progesterone cream instead. It helps some, it doesn't make the pain go completely away, but it does help. I'm just terribly disappointed at this point. I know I'll probably feel better about it after talking to him, but right now it just sucks. :$ And another surgery so soon after the last one isn't an option for me, not yet anyway. If mr world-famous doctor couldn't make the pain go away any more than this, my regular ob/gyn surely can't! I hate doctors, I really really do. They've screwed me around my whole life, only thing different now is that we know what is causing my pain, and I can actually get medicine for it (sometimes).
  2. Maggie Sugar

    Maggie Sugar Senior Member

    I can TOTALLY relate. I've had endo as well as horrible, intractable migraines which respond to NOTHING other than narcotics and a little bit of Zoloft. I had a lot of the same treatments you did, also to no avail. (as well as chiro, accu, herbs, crystals, massage ect.)

    It took me years to find a doctor who wasn't afraid to prescibe actual PAIN killers for actual PAIN. It is hard to find a brave doctor, but they are out there. You may have better luck at a big University Teaching Hospital. I found these doctors are up on the newer therapies (which include using pain medication for pain....duh.....they needed 4 years of Medical School, 4 years of Residency and 25 conferences to realize this?) than community hosptial doctors.

    Also, I have found that (OMG, I am gonna get it for this) male doctors are an easier touch for Pain Meds than female doctors. I think because, in order to get through med school as a womyn, you have to deny yourself pain, so you may not have the empathy for other womyn who are having the pain you don't have. Also, if a womyn HAS endo or migraine, med school would be almost impossible to finish, so mostly really healthy womyn get to finish. (Just a guess.)

    There are also Pain Clinics which deal exclusively with pain patients. If the "standard" endo treatments don't work, then you have a pain problem, and Pain Clinics are the place to go. Ask your doctor for a referal, if s/he won't give you one, try the internet.

    The reluctant doctor just makes me nuts. People in pain should be treated with respect, not contempt or like junkies.

    I hope you can get some help. The idea behind pain treatment is to get the pateint to a place where she can function, no matter what. And if the T3 works for you, there is NO reason to take out your uterus. I don't know in what Planet taking OUT an organ, is preferable to prescribing pain meds, but too many doctors have this idea. I'd like to ask your doc if he had a choice between taking narcotics or removing his own testes, which would be preferable, but you'd probably never get an other pilll from him.

    Take care, honey. I hope you can get relief.
  3. lola78

    lola78 Member

    I don't have chronic pain from endo but I have chronic pain from a traumatic hip dislocation which pretty much ruined me and I see a pain management specialist. I have no touble getting a script for Narcotics if I need them. I think in cases of chronic pain a pain specialist is best. They seem more helpful than general MD's. Who are afraid to give the drugs to folks who really need em.
  4. hummblebee

    hummblebee hipstertist.

    (((((mamaboogie))))) I hope you get the relief you need, and it all works out for you! Don't hesitate to find another doctor if this one gives you too much trouble for wanting control of your own pain, life, and reproductive system!
  5. mamaboogie

    mamaboogie anarchist

    thanks you all! My doc is okay, and after I see him I won't be so pissed off. No, really, he is one of the good ones. And I do know how few and far between they are. And I know he's probably just covering his ass by making me come in and see him before he'll prescribe more pain meds. It's near impossible to get pain medication in Tennessee anymore. All the doctors are afraid because a few years ago the FBI and TBI had a sting operation where they set doctors up by sending phony patients asking for drugs and then sending the doctors to jail when they tried to help them. From what I've heard, the "pain clinic" here in town is just a bunch of psychiatrists who help you deal with imaginary pain... but I've never been, so I don't know firsthand. I have been referred to head shrinkers before by docs who didn't believe I was really hurting, and I was even prescribed antidepressants for it, too. Suprise suprise, it didn't make the pain go away!

    I'm wondering if I should even bother asking for more migraine medication... the last refill I had lasted me four years, but when I need it, I need it and now I'm out.
    EXACTLY!! If I can function, I'm happy with how things are right now. Why go trying to find an alternative if this works??? I've been so bad I couldn't function, I'm not going there again. And what happens if they remove my uterus and I'm still in pain? I know three women, in real life, who had that experience and can't get anything for their pain because their doctors believe that they can't possibly still be hurting if they no longer have their uterus!! AAAGGGHHHH! Plus, I have no endo on my reproductive organs, so removing them makes no sense at all. It will probably mean another surgery for me sometime this summer... bummer. And with two kids to take care of, how am I supposed to recover? It took six incisions (lap surgery) to get to all the endo last time, and recovery took twice as long as any of my previous surgeries. bleh
  6. F8T11

    F8T11 Member

    I also suffer from endo and horrible migraines. I'm scheduled to have my 3rd laparoscopy, for endo this month. I had a sonogram last week and today I recieved a call from my Dr's office saying I'm pregnant! Here's the kicker: I haven't been able to have any intercourse in over nine months and I'm mensturating!!!
    Anyone have an idea what the idiot Dr could be reading from my sonogram? It's definately not a fetus and endo can not be detected via ultra sound. There's absolutely no way in hell I can be pregnant. Cancer? At this piont I'm so tired of pain, I just want it detected, treated, and over with. It's depressing.
  7. mamaboogie

    mamaboogie anarchist

    I suppose it could be a fibroid, maybe? Dunno, a baby is pretty unmistakable on ultrasound... call your doctor and demand some answers! That's the only reason I see the doctor I do, he listens to me and answers all my questions and never rushes me out the door or off the phone until I'm completely informed.
  8. Maggie Sugar

    Maggie Sugar Senior Member

    Not many doctors would tell you you are pregnant over the phone. Was a blood and urine test done? The hormones tested for in blood is almost never wrong, although they would do more tests if you can't be pregnant. But, even in early pregnancy, a pregnancy doesn't look like much else on a sono. considering after 8 weeks or even earlier, it's usually moving, and the shape is pretty definable.

    I hope you find out soon what it is.
  9. mamaboogie

    mamaboogie anarchist

    are you sure you want that doc doing surgery on you?? :&
  10. F8T11

    F8T11 Member

    That's my concern! ....If a gyn can't read a sonogram, I sure as hell don't want him cutting me open! They did do a blood/UA for pregnancy and it was negative. I am livid that the nurse would call me and anounce that I'm pregnant. If I didn't know better, I would have called my family and friends to tell them "the good news" only to be told on my next appt..."Ooops, sorry," Meanwhile I have to wait a week and worry about what IS on the sonogram. Just thought someone else may have had the same unusual experience. I've lost all faith in doctors. All they see is money.
  11. Maggie Sugar

    Maggie Sugar Senior Member

    I am so sorry you had to go through this. Try a doctor at a good Teaching University Hospital. I have always had better luck with everything, from migraines, to endo, to having babies to getting my child's Tourette's Syndrome diagnosed, at a University hosptial rather than a rinky dink "Community" Hospital. IMO, the only thing I haven't seen community hospitals mess up is simply putting on a splint (although when my dh hit himself with his own truck last summer, I had to TELL a nurse, after we were discharged, to simply WASH the GiNormous wound he had on his leg. (I tried to insist we go to Loyola, but he wanted to go Community because it was closer, we ended up going back and then to a decent hospital 2 weeks later, because the thing had gotten worse, and they had MISDIAGNOSED IT. How can you MISDIAGNOSE a car accident injury? (They said it was "soft tissue injury" and sent him home with nothing,. no bandage, no pain meds, no follow up, We went to a decent hospital and found out he had vascular injury and nerve damage, said it wouldn't have been as bad, and would have healed, if the doc at the community hospital had diagnised and treated him properly.)

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