TAH or watch and wait

[nina04]

Hi I posted previously about the necessity of doing surgery for a persistent complex cyst.  At the urging of some of you i asked to follow up the US (the fourth one since May) with an MRI.  
The most recent US (Jan)said:
1.

[kmarsh]

i too developed high bp after the birth of my second child and since then have had a fiboid that was diagnosed, and 2 cysts and i am waiting now for my second lap. i dont think this is suspicious for malignancy as they think its suggestive of haemorrage. i keep having spikes in bp and i think there could be a hormone link to this, the cysts and the fibroids. i have recently had a test for an adrenal tumour too. my ca 125 is normal and they have also done a cea test.

[JGMom]

I also had low BP before this summer.  When I developed that cyst, my BP became extremely high (250/160 was a common reading!).  All of the specialists I have seen claim that it not related to that cyst, but I disagree. Something happened rather rapidly and I just don't believe it is mere coincidence.  At least the internest I see agrees w/ me.  I have 3 family members who are Drs and I have also gotten to know my son's immunologist well and they all agree that there is likely a connection.  Also, I'm not sure if you saw my earlier post asking about a connection b/t ovarian cyst and high BP, but some other people on here responded there and to other posts - there seem to be a few of us who developed high BP w/ our cysts.  Can that jsut be coincidence too?

I'm also really bloating out and have urinary frequency like you and other people on here have mentioned.  I don't know how exactly the cyst is causing this  - if the cyst is pressing on an artery? - the things they kept looking for w/ me was renal artery stenosis and adrenal tumor(s) - which they couldn't find.  Or the other thought is that when you start reading the literature, you see that there is actually not that much understood about the play b/t the endocrine system, the immune system and adrenal - never mind each of these sytems in isolation.  I think even the hormone imbalance caused by the cyst may cause havoc??  They don't even understand why some people get eclampsia or toxemia of pregnancy (high blood pressure usually late in pregnancy).  I had this immediately post-partum oddly enough.  Is it the hormone change, the immune change or what?

I read an interesting article today about an association b/t certain angiotensin I-converting enzyme (ACE) gene polymorphisms and susceptiblity to endometriosis.  Also ones about transforming growth factor beta and IL10 (immune mediators) relationship to endo.  These are all interesting to me since I had a lot of trouble w/ other BP meds until I tried lisinopril, which is an ACE inhibitor.  The immune articles are intersting to me b/c both my son's and my immune tests have shown abnormal production of IL10 and TGFb.  I am just sure there is a relationship b/t the BP and the cyst thing, but unfortunately, I'm not knowledgable or smart enough to figure it out.  I'm just hoping that getting this sucker out will improve my BP too.  I just have to believe that if there are this many of us on this forum that have this "coincidence", then there are many more women out there and I wonder why no one is putting it together.  The Drs I've seen all act like it is the first time they saw it.  Arggghhhhh!

[JGMom]

Your symptoms really sound like endo - all of what you describe is so similar to how I felt when my endo was at it's worse. The right smaller cyst not seen on MRI could have been corpus luteum or just part of your cycle considering you had other smaller follicles on that ovary????  Maybe it shrank b/t the MRi and U/S w/ your cycle???  There is no easy answer about surgery - especially w/ your clotting disorder.  You could try one of the other approaches for endometriosis like lupron (though I couldn't tolerate it).  Also, I'm not sure if you see an immunologist, but maybe this would be helpful if you have a clotting disorder and also endo, which is an autoimmune disease?  Someone like that may be better able to assess your risk for surgery from the perspective of your clotting disorder?

I have really high BP which developed when the cyst developed and I'm uptight about having surgery b/c of that (and also just that I'm uptight about surgery in general - who isn't?).  I feel for you; I don't know what I would do.

[lacjmc]

Is the cyst causing your blood pressure to go up because mine has been extremely high at times lately.  I usually have very low blood pressure.  I am also retaining fluids big time.

[nina04]

thanks, everyone.  i realized i posted the rest of my comment incorrectly, but some of you found it.  i will have to look for more endo info.  i'm also seeking a second opinion...
i too have heard about 5 cm cysts and up requiring surgery, but not sure where.  
I have had a ca 125 done....in may itwas 30, in nov, 22, jan, 20.
Now the onc/gyn is ordering two i haven't done yet: ca15-3, and ca19-9.  anyone hadthese?  are they as unreliable as ca125?  I'm just wondering why, and didn't notice those checked on my order til i wasn't in the office anymore.
at 41, and with four kids, fertility isnt an issue for me, but i do hesitate to remove organs.  the onc/gyn wants to eliminate the need to repeat surgery, since it's such a high risk with the clotting disorder, but i will ask the hematologist about that.  

[greenThumbs]

So, your insurance can deny payment because they don't think the the cyst is large enough???  Are you speaking in regards to a HMO?