Frustrated beyond belief

From: Suz (
Tue Jun 5 16:47:49 2007

Hello All,

This is my first post to the site - I came across it a few weeks ago while trying to explain to my friends what I was going through (so far I've found it to be very useful - thanks!).

In brief (sort of): I'm 42 and have had various ovarian cysts, ovarian masses, and fibroids for the past 30 years that led to several myomectomies and eventually a hysterectomy at age 36 that included taking my compromised left ovary and part of my cervix. At the time of the hysterectomy my physician voiced serious concerns about the scarring from the previous procedures (done in the same location) and possibly subsequently from the hysterectomy, but I didn't comprehend quite what she was saying (despite having worked in health care for 6 years! But that was a while back).

Over the last couple of years I've had increasing abdominal pain, usually in the lower right quadrant, that was associated with acute IBS (something I've also suffered from for more than 30 years), muscle strain, hemorrhagic cysts on my remaining, right ovary - even hypochondriasis! (thankfully ruled out almost immediately)

The pain is now so intense I am unable to sleep for more than an hour at a time; this has been the case for more than 8 months. My GP referred me back to my OB/GYN, who then explained to me what she's been worried about all these years. At the same time I have several growing (although they hope hemorrhagic) ovarian cysts, the largest being 7 cm. at last assessment. No one wants to do surgery because they believe the adhesions are so severe I would at least have a temporary colostomy bag from damage done during surgery, with a very high risk of permanent damage. As a result I'm being bounced around from doctor to doctor with no viable solution in sight, no one confident enough to help me (my take - but that's probably because I'm so frustrated right now).

I also do not/will not take narcotics because of other medical conditions. When I say I can take pain, please believe me - I'm tattooed and pierced and have a rather high pain tolerance. This is incredible - this is the kind of horrific pain that grabs if I'm not still or in just the right position. As an active person I find it horribly debilitating and depressing, and getting more so every day.

I guess I just want to find a community of people who 1) get it and 2) may be able to communicate some suggestions for getting my state of mind in a better frame. I've tried yoga and think it's great - I'm looking into acupuncture, too. I believe in mind-body healing and realize my downward spiral isn't helping, but when you get a "we're sorry but we can't make it better" response from your care provider it can really get you (me) down. *sigh*

Looking forward to your responses and reading through the archives. Just knowing I'm not alone helps, and I'm open to all sorts of responses - please don't let my clinical approach put you off but I'm trying very hard these days not to let it all get me down; it keeps me from being my normal, chipper self.

Thank you, -Suz

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