WOMENS-HEALTH Messages for February, 2000: where to from here?

where to from here?

From: anonymous@obgyn.net
Wed, 1 Mar 2000 00:03:55 EST

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Previous message: Kelley: "The great mystery needs to be solved!"

Dr. M:

Okay, I've been on the Lupron for several months now - despite the fact that at the time of my surgery in November to remove the ovarian tumor and left ovary (during which time I was ovulating also) there was no evidence of endometriosis. The pain in the area of the right ovary is still the same - still increases with activity, which limits my life so much - this all began in August, so it's seems like it's been a REALLY long time. I think the reasoning behind trying the Lupron was in case there was some microscopic endo somewhere, although the pain is constant and persistent and doesn't come and go, along with the nausea, inability to eat much at a time, etc......now all of which has been further complicated with the side effects of the Lupron - my hair has even thinned out by 50% with not much signs of slowing down - I didn't realize this could be a side effect, and as my luck has been going, seems like I'm catching a lot of the unpleasant side effects. Now I'm at the point of totally being unable to tolerate food intake......probably from having taken so much Motrin during the past forever months to try and decrease the amount of narcotic pain pills I have to take.....it's typical signs of possible ulcer - stomach burning, food makes it hurt, drastic increase in the nausea despite phenergan and Zofran, although I did start taking One Source vitamins, along with Oscal with Vit D, Vit C, and am trying to supplement with Boost, but still am losing a lot of weight, and no matter how much rest I try to get, still feel like I just can't get enough rest. I'm still managing to work a few nursing shifts each week, although they seem to really sap what little bit of energy I do manage to create, as well as increase the pain in the right peritoeneum.

I called my gyn about the stomach stuff, and informed him of the continuing pain, side effects, etc.....and he told me to call my primary care manager (we are military - so the buck gets passed a lot it seems) to see him and get a referral to a gastro.

I was thinking, while trying myself to figure out what could be going on on that right side to have so totally disrupted my life for almost a year, that the only things in that area would be, and correct me if I am wrong, bowel, omentum, peritoneal tissue, and of course the right ovary, which still has the same 3-4CM cyst that shows up on the ultrasounds (this has shown up for 5 months already). With this going on for this length of time (the right ovary, nor peritoneum, nor omentum, nor lymph nodes (right inguinal lymph node still enlarged all this time) weren't checked at my previous surgery. Would it be too much of me to ask when I go back at the end of March that we now check all of these areas? Especially considering our family history on paternal side of peritoneal cancer - which although is very very rare, has already afflicted 3 of my first cousins on that side. I mean, I understand the watch and wait, but just how long do I have to "watch and wait" with no improvement in anything? Would it be acceptable for me to go back in and say hey, this has gone on long enough, I have had no life, I seem to be deteriorating further instead of improving, and I want my life back, I want all of this thoroughly checked. I mean, if we find nothing significant, we've lost nothing anyhow, but if we do find something significant, or a cause, which surely there has to be a cause for pain that is constant for 7 months, then we've made progress instead of just letting this keep riding on.

I did find out that the cystadenoma burst when they went in. Could this have a play in things as it evidently went into the peritoneum? Of course, the right ovary was hurting before the side with the tumor started hurting, so it's history is there about 2 months prior to the tumor, which grew very rapidly and was the size of a small volleyball by surgery time.

I guess after all of this time and feeling so crummy and so much worse than in the beginning, I 'm just getting frustrated and tired of being tired and hurting and unable to live a very productive life.

What is your take on this? And what do you think could be some possible possiblities of what is or could be going on?????

With kind regards, Vicki

Previous message: Kelley: "The great mystery needs to be solved!"

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