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Unread 08-22-2012, 11:52 AM
New here with questions

Hi! First I want to say that this is such a wonderful place to have found!

I have a long story, but I will try to keep it short. I had my first child in 1994, in October 2005 after 6 months of constant bleeding and pain, I had a diagnostic lap and D&C. They found "adhesions consistent with, but not diagnostic of, endometriosis."

In November of 2006 I delivered my second child via c-section. A small fibroid was shown to my step-mom during my c-section. In 2008 I began having lower back aches, heavy bleeding and cramping. I was also having a myriad of other health issues and these were just kind of dismissed as they were far from the worst of my troubles. I was later diagnosed with fibromyalgia.

In 2010, I noticed a small lump on the right end of my c-section scar. Initially it didn't hurt, but as the months progressed it felt as though it had "roots". In October of 2010 I had a UTI that did not seem to respond to treatment. I was tested for UC, but the urologist deemed it too soon to make a diagnosis. I switched to a new primary care doc who has done a lot to assist me. I've been complaining of flank pain, lower back pain, bouts of naseau, pain under my right ribs, right pelvic pain and exhaustion for almost 2 years. I have been diagnosted with several degenerative spine disorders.

In 2011 my pcp sent me to a surgeon about the "granuloma" on my c-section scar and a "mucocele" on my appendix. The surgeon agreed with the diagnoses and set a surgery date, preformed the surgery, said all was well and see you in two weeks for a follow up. It was at the follow up that he told me that the two things he removed were actually endo. I had asked prior to the surgery if he saw other endo and/or adhesions would he remove them. He said no, he was only going after those two spots (I'm a charity care patient, meaning I have no insurance, and a mucocele on the appendix is a fairly rare occurance, I'm certain he was just hoping to remove one during his career). One small fibroid was noted in his surgical notes as well as a 4mm lesion on my liver. I finally was able to see the OBGYN that participates in this charity care program after a 12 month wait.

I have switched doctors within the practice because I am not thrilled with the manner in which I am treated. In fact, at my last visit, they told me that they (an obgyn!) couldn't provide me with an annual pap smear because I am a charity care patient; my pcp would have to preform it. At my last visit the new doc said "if you're so convinced that this is endo, I will put you on Lupron, take this info and read it and let me know what you decide". I responded that I am not convinced it is endo, but no one is telling me what it IS and this doc is not doing any investigating. I have had to have my pcp order ultrasounds and recently a pelvic CT.

Sunday night, I ended up in the ER because of severe pelvic pain. Pain in my pelvis unlike any I have ever felt. I think someone broke a knife and began trying to stab me to death from inside my uterus. The ER doc gave me one round of pain meds (I'm on vicodin for the back pain, but had taken it every 4 hours along with ibuprofen 600mg every 4 hours and it wouldn't even take the edge off), and ordered blood work and an ultrasound. The u/s tech was amazing!! She shared info with me, which I know she was not supposed to do, but I tried not to pry too much knowing she could get into trouble and thinking that the radiology report would have more info. Turns out I have 3 fibroids (don't know locations) but the largest of them is only 9mm. Isn't that too small to cause problems? Then my blood work came back: low red blood cell count, low white blood cell count, low platelets.

This morning my pcp did additional labs, and my last labs were in June because I was sick, I was told they were normal, but she pulled them to be sure. My rbc, wbc were normal then, but my platelets had fallen 20,000 since my blood draw prior to that (not sure when that was exactly but more than 6 months prior). I have an appointment with my obgyn in about an hour and I don't expect much. My pcp refused to give me additional pain meds as she decided if was a gyn issue then they should handle it. Except all of my docs will only allow my pcp to give pain meds. I feel at my wits end and no one is offering me any alternatives. I can't go get a second opinion because I can't afford it, we are a single income (mine) family right now and we have 4 kids between squeezing out an extra $200 for a new patient visit. Any thoughts or advise is welcome. I apologize for this getting so long. If you made it this far, many blessings to you.
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Unread 08-23-2012, 07:42 AM
Re: New here with questions

UPDATE: So the obgyn seems to think that I have a UTI, despite having two completely normal urinalysis. She sent my uring off for culture and put me on antibiotics. I think she's crazy, haha. I have had a few UTI's during my life, and none of them have felt like this. However she says that my pain is coming from my bladder and right ureter, that when she palpated my uterus and ovary, I didn't complain of pain. She suspects Interstitial Cyctitis (IC, I messed that up yesterday too, lol, and typed UC, please accept my sincerest apologies). She says if the urine culture comes back normal she will refer me to a urologist.

I asked about the possiblity of endo/adhesions causing the pain and problems with urinating and she did say it could be a possibility but that a laproscopy is a "major surgery" and we would only want to go that route as an absolute last resort. But, if I had something interesting or exciting going on, you could bet they would have me signed right up to cut me stem to stern...ugh, it's frustrating. We also talked about my period in depth (this was a NP, not the MD I typically see and she was very throrogh and asked lots of questions and actually seemed to care, despite the "major surgery" comment, I was really impressed with her level of care) and she said we would need to know about anything new, and I said, well the lime size clots are new and she said well going forward I mean. I don't understand...I'm telling you that there is something new in the last 6 months that no one else has taken note of but somehow that isn't relevant. I just can't win. Do you think her course of treatment is appropriate?
Unread 10-07-2012, 06:58 PM
Re: New here with questions

Hi Knowsnothing:

Has there been any improvement in your symptoms? I hope you will consider a 2nd or 3rd medical opinion.

I am sending huge cyberhugs

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