need input, advice, suggestions...

  1. 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, unrelenting abdominal pain radiating to the back. She states it's in her back, but also has SEVERE menstrual pain. So far she has had GB ultrasound (ok), IVP (ok), ultrasound of the ovaries (she HAD an ovarian cyst.. resolved now, supposedly), a colonoscopy, no findings).. and just the other day a laparoscopy (OB GYN thought perhaps endometriosis)..nothing there. The girl is tired of living in constant pain, and is missing a lot of work, jeopardizing her employment. She's too young to be suffering like this, and we can't seem to get to the bottom of it, and I'm not at all sure I trust the docs these days. She keeps headaches all the time which sometimes are fullblown migraines. I was reading the fibromyalgia thread (SOME similarities, but no pressure pains) but some symptoms are similar. She has had a thyroid panel done and it looks fine... had a pyonidal cyst removed last year, and has been on WAY too many antibiotics over the past two years.. seems like she keeps infections, and the barrage of antibiotics are only making it worse by not allowing her body to heal itself.
    Don't know what's going on with her, but I'd sure appreciate any suggestions, input... besides seeing her PP which is leading nowhere.
    Thanx guys! :kiss
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  2. 23 Comments

  3. by   Vsummer1
    I know this is going to sound wierd, but Hep C has a lot of those symptoms (fibro like symptoms, flank pain, headaches). Has she been tested for that?
  4. by   jnette
    No.....never even entered my mind ! Wow...??? Would it not show up in her blood work? She's had ALL kinds of labs done over the past months...??? I'll keep it in mind, though.. ANYTHING is worth persuing at this point...she's getting really depressed...
  5. by   Vsummer1
    I had all of that and my LFT's were normal... then one day they weren't. Got tested, was positive. I started doing some research on it, and that is how I found out other people's symptoms. Once there is a problem with the liver, it can affect all kinds of things. Anyway, it is worth a shot...
  6. by   jnette
    Thanx, Val... funny, but I had just mentioned to her the other day that about the only thing left that hasn't been investigated was the liver, and that she might ask her doc to check that out. Especially with the location of the pain, etc. But I feel no enlargement, and her urine is not dark, nor her stools pale... but tha's not always the case, either, I know. I hate that she's on so much medication for pain and all the antibiotics.. she can't afford them physically OR financially. And STILL never knowing just what's going on!? She HAD been taking a LOT of ibuprofen with the headaches and other pain for a good while. I didn't know until later, and it disturbed me... I have a patient on dialysis for this very reason, plus I know it damages the liver as well. I'm at my wits end, and I know how SHE must feel, being the one with the constant pain and no answers... Thanx, though, and keep the input coming , everyone!
  7. by   sphinx
    with the severe menstrual pain, and the back pain....I wonder, is it the lower back? Does she have heavy periods? If the Dr considered Endometriosis and didn't find anything, another possibility, which doesn't show up on a lap is adenomyosis.....basically endometrial tissue growing within the walls of the uterus. Very painful, often with heavy bleeding, enlarged boggy uterus.....but definitive diagnosis cannot be made until uterine tissue is directly examined......at this time, that is usually with a hyst. Some docs will treat as if the pt has adeno, even if the diagnosis is unconfirmed, since a hyst is a pretty final step, ya know? Treatment medically includes birth control pills (often taken without the placebo), depo provera, sometimes a course of Lupron or Synarel.

    But that's just a thought. Only because I myself went through some similar stuff recently. I hope they can figure something out........
  8. by   jnette
    Thanx, Sphynx !
    Yes. there's heavy bleeding and severe pain . They took a biopsy of what they termed as "fatty peritineal tissue" but haven't received the results yet. I believe the pain is as you said, in the lower back.. will have to get with her and detemine more specifics. Asked her to start keeping a "diary" of sorts; to note the times of the pain, where, how long, when, etc. Maybe we'll get more specifics that way. I'll keep the adenomyotis in mind, and perhaps she can mention this to her doc and get an opinion. We'll keep plugging away... sooner or later, I hope we can find the problem.
    If anyone else has anything to offer, I'd sure appreciate it !
    Thanx, everyone... keep the suggestions coming !
    ps..
    BC pills didn't seem to help much at all, so they put her on the "patch"... we'll see if that helps any.
  9. by   whipping girl in 07
    When I read your daughter's list of symptoms, I immediately thought of endometriosis. I then saw she had already had a lap and nothing was found. However, talk to the doctor about his/her experience with endo because it does not always look the same. The classic lesions are black but can also be white or red (obviously making it difficult to discern from ordinary tissue). I wish I had a dollar for all the women I've encountered over the years who were told they didn't have endo who really did since it was found on a later lap by a more experienced doctor. The truth is many OB/GYNs spend most of their time catching babies and just don't have much experience with gyne surgery.

    I have suffered from endo for several years now, and after my first lap I only had symptom relief for about 3 months. I take Aygestin (progesterone) daily now, and that seems to keep my pain in check as long as I don't miss a pill. I know of many women who had years of misdiagnosis of this disease and even more years of trying to find the right remedy, as, unfortunately, different treatments work for different people.

    As far as BC pills go, estrogen is supposed to aggravate endo and make it grow more; my symptoms decreased when I started taking just progesterone (although I had to try a couple of different ones before I found the one that worked for me).

    I also had to change my eating habits as well. I eat very little dairy and really watch my meat and fat consumption.

    If you have any questions, feel free to pm me. I'm slow at times but I will respond.

    And I'll keep your daughter in my prayers.
  10. by   jnette
    Thank you, Konnie !

    Am keeping a list of all the suggestions. She is to see her doc again in one week for an "update". I'm trying to get all the input I can until then. I know endometriosis can run in the family, and my sister had it at about my daughter's age. Left a lot of scarring, and never was able to bear children...

    I've had a recommendation by a fellow nurse coworker for a wonderful, KNOWLEDGABLE gynocologist.. will try to get my daughter to switch. From what I hear, he is QUITE competent. Appreciate the help.. keep it coming, perhaps by the time she goes, we'll have something to go WITH!
  11. by   Glad2behere
    My ex-wife went through all of this. The symptoms are almost identical. Especially the migraines, bleeding, and pain. She ended up having a very low grade PID, causative agent, an IUD from her youth had adhered to the uterine wall, developed scar tissue, with an ongoing infection that had walled itself off. All the lab was negative, and she saw 3 gyns. Imitrex Im had just been introduced, what a wonderful drug. Helped the migraines a lot. She finally had to have a hyst, and that is when the answer was found.
  12. by   jnette
    Thanx, Glad... appreciate the response. She has never had an IUD or anything of that nature.. however, at this point I must add (reluctantly and sadly ) that she was raped 4-5 years ago. Did not get pregnant, has never BEEN pregnant.. but wonder if being raped may play any role in this at all? Just something to ponder. Don't know whether she has mentioned this fact to her doc or not.... not sth. she likes to talk about.

    Keeping track of all the responses, and appreciate so much all the input so far ! You guys are super... THANK YOU. :kiss
    Last edit by jnette on Sep 24, '02
  13. by   kids
    I had very similar sx for several years...a very good OB/Gyn did 2 exploratory laps and never found any signs of it. In '96 I had a TAH w/USO (for several reasons not just R/T my sx). Doc found MYOmetriosis...is basiclly endometriosis within the uterine muscle...it "cured" my sx.
  14. by   jnette
    Thanx, KiDs !
    So what's the next step? She's only 25...wants kids someday....

    How do we persue withOUT the hysterectomy? Sveral posters have mentioned that the problem was found only after/during the hysterectomy...

    I'm having her switch doctors. Perhaps he will have some ideas before we go that route.

    Thanx again.

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