SHould I be concerned or am I panicking?

[ravenwood84]

Okay, uhm, I've been having some problems with vaginal bleeding and my doctors haven't been able to figure out is wrong.  I bled for 2.5 months straight, they took a biopsy and it came back clean.  They did an internal ultrasound and came back with some cycts but that was it.  My hemoglobin dipped fairly low so they put me on birth control pills to get the bleeding to stop.  (I had an IUD but apparently it took a hike.)  They were hesitant to put me on the pill because of my erythema nodosum due to the pill (diagnosis in 2007).  I've gone off the pills (as per the doctors instructions and have started bleeding again, but now I'm getting clots that are deep purple with white veiny looking stuff and they smell bad....should I be concerned or is this ok.  (I have not had sex in 16 months +- 1 month.)

[ravenwood84]

I'm going to try to answer your questions in order and put them in a sort of bullet form.

I spoke to the doctor (an OB I believe though I don't have her card handy to be certain) on Monday.  The day after I finished the pill because she asked me to call if I started bleeding right off the pill, which I did.  I called in again today and got the answer of:  "If it continues or worsens throughout the day go to the hospital, but we think this is normal because of how much blood you had built up in your uterus."

I have been put on several forms of the pill and they all cause the erythema nodosum to occur.  The other concern is that these pills can be contraindicated for people with epilepsy and depression like me.  So aside from the erythema nodosum they do tend to make my seizures and depression more unstable.  (***** to be me.)

I have asked about fibroids and PCOS, they are remaining relatively reticent about what their diagnosis is.  They waffle between, "well, it could bes."

We are uncertain what happened to the IUD.  I made a point of checking it (I had it for 4 years prior to this) at the first of every month and the end of every period.  When the excessive bleeding started I checked it the first of the first month (this was before the bleeding started on the 7th), the first of the second month this was going on and on the beginning of the third month it was gone.  I usually have very painful cramping with periods and had reported it odd that I was having no pain.  I did not find the IUD in any of my pads and it was not obvious in the toilet that I recall.  

They are uncertain, but doubtful that the IUD had anything to do with this.  

During the biopsy they checked for endrometrial cancer, infection and ednometriosis (I believe).  They all came back as negative.  

They do not have any answers for me yet.  Thank you for answering my question the best way you could.  Oh, and if it is important, I am 29.  

[specialmom]

Hi there and welcome.  Oh gosh, very sorry to hear this!  The clots sound scary and troubling.  Have you been back to the doctor since going off the pill?  Are there other hormones they can introduce to stop the bleeding like just progesterone?  Maybe a different birth control pill?  ugh, that is hard that you have the situation where taking them is a problem.  

Have they considered fibroids?  What about polycystic ovaries?  Of you have anything like pcos, they do treat with birth control but also straight progesterone pills or a drug called metformin with success.  When you say your IUD took a hike, what do you mean?  Could this be related to that?  Did you find the IUD?  Is it out?  I assume they've checked for endometrial cancer when you had the biopsy.  Glad that is not a concern.  

I honestly think you need to continue to be evaluated.  If your current doctor isn't sure, get a second opinion.  A gynecologist is really key.  A gyn/onc deals with cancer but also is very attune with abnormal situations.  Something to consider to figure out why this is happening.

Please come back and let me know if you get any answers!  peace and luck