Support and advice appreciated!

on 6/14/16 9:20 pm

Hi all!

After wasting the entire day at the ER for nothing, I'm at my breaking point and really need advice. A bit of background... I've always had very normal periods. Since puberty, I've never missed one and I'm 31 now. I just had my first baby in December and conceived the first try  (likely due to my clockwork cycles). Pregnancy was normal, but I gained 80 pounds. I've always struggled with my weight, I've always had skin breakouts, I've always had excessive dark hair. I think that covers the background.

I had my son in December, had a terrible labor and recovery. Post-delivery, I started my period right on the mark like I never missed a beat. I was surprised that it wasn't heavier or longer since I had a baby. My cramping was normal and light. Month two, post-delivery, same thing. Only, on day four, when I'd normally be winding down and tapering off, the flood gates opened and I bled worse than when I had my son. I thought that must be what my periods were going to be like now and I just got lucky my first cycle. Three weeks later I was still bleeding at that rate and I became very weak and tired and queasy. Every time I'd stand, I'd feel like I was going to hit the floor. After an ER visit, a handful of doctor visits and an ultrasound, I was diagnosed with PCOS. My doctor gave me Provera to stop the bleeding, which worked a little. The only thing is, she'd give me a 7 day supply and the bleeding would come back full force as soon as I stopped taking it. She said the Provera was a bandaid and I needed a long term plan. 

Next up, she put me on the birth control and metformin regiment. The bleeding hasn't stopped, it's been incredibly heavy and 17 days into this, I'm on my way to feeling terrible again. When I called her to let her know it wasn't working, she referred me to a GYN. Their office can't get me in for a month, so I called my doctors office back again and asked what I should do until then. I can't bleed for that long, at least not to the rate I'm going (a pad AND super tampon per hour with clots the size of my hand). She directed me to go to the ER. Of course, I sat and waited, sat and waited... you know how that goes. They did blood work to tell me I'm now anemic, but just said to follow up with my doctor. 

I feel like I'm just being tossed around. Everyone sees me as their "job", not a first time mom, running a business, working 13 hour days, feeling terrible and moody and just trying to keep it all together. I'm miserable! I'm emotional! I can't wear real clothes and the pads I've upgraded to are worse than what they sent me home from the hospital with after I had a baby- a whole baby! I know many of you can relate to my suffering and depression and hopelessness. I'm literally fighting the tears a few times a day when I'm constantly reminded that there's no apparent resolve to what seems like my new life.

I'm crushed and the bleeding is really starting to get to me. I cancelled my vacation in March because I was bleeding so badly. I have another scheduled in 2 weeks that I'm also considering cancelling. Also, any amount of walking seems to create a complete hemorrhage. Just when I think I couldn't possibly bleed any worse, I do a little shopping and walking and pay severely for it. Obviously, that eliminates any type of exercise which would generally be beneficial in dealing with the PCOS.

So what are your thoughts / experiences / advice? 

Who has had this problem- bleeding out and what worked for you? Where should I go from here? What kind of doctor should I seek a referral for? Isort the bleeding every going to stop?

on 6/15/16 12:17 pm
RNY on 08/01/13

I'm sorry that you are suffering this way right now.  I have no been in your shoes in regards to the bleeding - but I can suggest that you get a referral to an endocrinologist.  It's possible that the gyno you are waiting to see may know about PCOS, but most do not.   Good Luck!