need input, advice, suggestions... - page 2

My daughter (25yoa) has ben thru H--- the past two years with a so far "undiagnosable" medical condition. Besides migraines, she has had kidney stones (apparently resolved now), UTI, and constant,... Read More

  1. by   sphinx
    There are new diagnostic and treatment methods about these days....try having her look for a specialist in her area, ie a pelvic pain specialist. Some peole go to a reporoductive endrocrinologist. If she can travel, there are several experts in the country who do whatever they can to diagnose and treat without going the momst drastic route. Off the top of my head, Dr. Andrew Cook is one. He has a website, can't remember the URL off hand, but you could probably do a search. Many women travel around the country to see him.
    I wish her luck. In my case, I tried many diagnostic tests, many non-invasive treatments, with no answers or relief. I finally opted for a hyst with a 50/50 chance of pain relief,and of course it would stop the heavy bleeding I was having. I had a TAH, LSO in May, and even though the path report found nothing grossly abnormal to explain the extreme pain, the pain has NOT returned. Strange. But I am 34 and have my 2 kids, and was done anyway......your daughter is still young, and if she wants kids, she should try everything under the sun before going that route, since it is, of course, permanent! Keep us updated!
  2. by   jnette
    Thanx Sphinx !

    I'm keeping notes on all the responses, the various "possibilities". I'm having her see a new doc who is supposed to be quite good.. my nurse coworker swears by him and wishes she was her "everything doc".. so we'll try him first. I'll bring the list of possibilities with me and share what you all have told me.. see if he can glean anything from all the input.

    Of COURSE a hysterectomy would be the very LAST option at her age.. she'd be devastated. I'm still wondering about the fibromyalgia, too.. she has a lot of neck pain.. CONSTANT.. along with all the other pain.. I'm just at a loss.. it's all so confusing.. can't seem to pinpoint anything "specific"... hope we'll get some answers soon.. this is beginning to really wear her down emotionally, and she doesn't like taking all the pain meds ALL the time with no end in sight, and never knowing what's causing it ! But we won't give up.. surely we'll find the answer and get it taken care of.. hopefully sooner than later !
    Thanx again for all the input and the concern. Will keep you posted as we find out more.. could be awhile!
  3. by   renerian
    Jnette I had alot of those symptoms particularly the migranes and radiant to the back pain, does the pain also radiate to her rectum? I had fibroids and enlarged uterus. I could not take it any more and had a hysterectomy. I felt like a new woman once they got my hormones regulated. I had a total hyst as I had one ovarian cyst after another. My one ovary was so adhered to the abdominal wall they had to make an incision to get it out the front while the other was removed vaginally. I don't know it that helps or not. As soon as I had it my migranes stopped. Only had two in almost four years now.

    What type of other drs. has she seen? Is hyst an option she is considering.

  4. by   jnette
    Hi Renerian !

    So far she's only seen ho-hum type docs.. insurance, y'know.
    But as stated above, I do have a good recommendation to an OB-GYN doc whom I feel I can trust. We'll go there next. Bring him all the input I've heard from you all and let him mull it over.

    The scary part in all these responses is that it seems that only with the hysterectomies did they ever find out what the problem even WAS.. or that after the hyst'y, the pain was gone, regardless. She's only 25. Engaged and definately wanting children someday ! But she's been so miserable the past year or two, and in so much pain (abdomen, back, neck, head..) that she's not even her usual, merry self. She VERY discouraged, and afraid that people will start thinking it's all in her head ! I know at her job, they are becoming a little irritated.. and if she loses her employment, there also goes her insurance! So she goes in, and when the pain is intolerable, takes the pain meds..(now on darvocet.. don't like that, either..) and gets all "woozy" from the meds and can't function properly at work. So she can't seem to win for losing ! She just wants some answers ! And so do I ! Please keep us in your thoughts and prayers, cuz she's really down now. I tried to tell her about all you guys and how long you suffered never knowing, either... maybe that will give her the consolation that she's not the only one and it's not in her head !
    Thanx again. If y'all have any other suggestions before her new appt. with the new doc, be sure to let me know ! :kiss
  5. by   moma is rn
    Hello everyone!
    I am jnette's daughter, i went through all the registration to let all of you know that i appreciate you! It means a lot to me that there are people out there that do care for one another. I have put my mom through a lot in the last couple of years, and she means the world to me. She is getting ready for her clinicals, and is trying to study and deal with me too. She is an amazing women. I want to give a special thanks to all of you who have helped her out. I also want to give a special thanks to:
    Vsummer1, sphinx, konnihall, Glad2behere, kids-r-fun, renerian.
    Thank you so much for your input. That is what i need, input. Like Johnny 2 "Need Input". Please keep them coming, because i am truley sick of this nonsense. I dont know how much more i can take. Thank you again, and I love all of you!!!!!!!!
  6. by   CaliNurse
    I can't give input on the OBGYN stuff but I can say that I have fibro and this doesn't sound like it. The headaches are the only thing that I find in common. Some have fibro worse than I do but I can not find any other symptoms alike. I am not an expert however, I have only been diagnosed a little over a year ago. With fibro you feel like you have sever arthritis but it is not the bone it is the muscle, ligament, and tendons that hurt.

    I hope you can get to the bottom of it. In the end if the only answer if a hyster HARVEST those eggs first for her future! (:>

    Good Luck,

  7. by   jnette
    Thanx, Calinurse !

    I have my doubts about the fibro.. sounds more like ob?gyn...but the headaches, neckpain, etc..???? Just don't know. Hope we'll find out soon. Thank you so much.. hope the hyst. won't be necc'y... surely there are other ways to dertermine what's going on !! And yes, must save those eggs .. this mom wants grandbabies !!!

    And Jess, your "moma" is not YET an RN ! But very soon....

    NCLEX RN by Christmas ! And what a pleasant surprise to see your post this morning when I woke up ! A real shock ! :kiss

    See, guys, her little "spotty dog" might be the only grandbaby I ever have..
    Last edit by jnette on Sep 26, '02
  8. by   sphinx
    jnette, don't give up on that grandbaby yet, these are just possibilities we've mentioned based on experiences some of us have gone through. They are always coming up with new diagnostic and treatments. It's hard to be in the position your daughter's in....not knowing, and living in pain........and I hope answers are forthcoming. The answers *are* out there!
  9. by   JUSTYSMOM
    If you think endometriosis is a possibility, I would say go to a Reproductive Endocronologist ( infertility specialists) and NOT a gyno.. You can always check with a chapter of RESOLVE in your area for a referral.

    I can't begin to tell you how many women I know and how many stories of going to their gyno for years...ONLY to finally go to an RE and they find the cause of their infertility.

    Not to say that your daughter has fertility probems, but SEVERE menstrual pain & abdominal pain would certainly send me running to an RE (to ensure that my fertility is intact).

    I was one of those women who went to my gyno because I was having continuous pain in my lower abdomen (especially during intimate times). He kinda laughed it off and said it was nothing.

    Nothing huh? One trip to a famous group of RE's in S. Florida
    and they immediatley did a series of tests and found out my tubes were completely blocked..Long story short, I went through IVF to get pregnant with my son.

    My best wishes..
  10. by   jnette
    Thank you ! Will definately keep that in last attempt at this new doc...if no results or not satisfied, will try the other. Appreciate the input !!!
  11. by   recnurse1
    Hi, jnette, Geez... I just found this thread. I was not aware of the problems you and your daughter were suffering through! I pray that you both come through this and have happier days ahead!