Recently Diagnosed and a Tiny Bit Scared?

JandLea · 04-12-2005, 12:28 PM

Hi everyone. I posted last week but I kept my posts to the "Have you ever had this" or whatever it was called board thinking that my questions would get answered from other Cysters that had been there. I guess that maybe my symptoms/problems are unique because I didn't ever really hear very much! I was scanning through the posts today and decided that I'd post on this board and see if anyone else is/was/whatever as scared as I am.

I'm 26 years old. I've been married just under 6 mos. to my wonderful husband John. We were married on our 5 year anniversary. He's well aware of my "female problems" and we knew that conceiving might be tough but we've been thrown a new curve ball.

I'm admittedly overweight. Three weeks ago I went to my gyno with lower abdomen pains that we thought were the result of yet another ovarian cyst. I have a history of them and have had to have 2 laps to rupture cysts and clean out endometrial scar tissue. I was diagnosed with endometriosis when I was 20 and have done a round of Depo-Lupron shots and ovarian suppression therapy. That therapy consists of taking BCP all the time and never taking that "last week" so (other than minimal breakthrough bleeding) I haven't had a period in just over 6 years. Last week I went back for a sono and a follow up appt. At that time my gyno tells me that it's not just ONE cyst but that both ovaries are covered with cysts and some of those cysts are rupturing. EW. (BTW, I also have PKD (Polycystic Kidney Disease) so I'm like a cyst factory) Oh yes and that my ovaries are unusually tiny.

So my dr. puts on my Darvocet 4 times a day to help with the pain and I've been taking 2 BCP a day for 3 weeks now. He said that if my pain was not 50% better by yesterday, he was going to have "to go in there and look around." We didn't get into much detail because we were both hoping that I'd no longer be in pain by the time I got back.

I seriously got the impression that J and I are going to have to start TTC or I'm going to have to end up having a hystorectomy and getting rid of everything. Again, that's just an impression. I couldn't see the dr. yesterday because he had to go deliver a preemie for a first time mom but I'm going back today.

I'm happy to have found Soul Cysters so I know that I"m not alone...but I haven't really seen anyone say anything about being in my boat. I've not taken any of meds yet (other than the Darvocet for pain) and I haven't cycled in years so I'm really sort of scared about how that will go. (When we stopped the periods I was having 24-28 day periods with 2-3 days off and starting again. I was bleeding soooo heavily I was going through nighttime pads every hour or so and I was ridiculously anemic. )

Has anyone done any of this? Has anyone had surgery due to having lots of cysts and some of them rupturing? Has anyone not had a cycle in a long time intentionally and then come off? Has anyone been told that they have small ovaries? Is that a bad thing?

Thanks in advance for any encouraging words or advice. Or even NOT encouraging words! haha

I wish everyone else lots of luck-I'm glad that Soul Cysters is out here...at least I don't feel that alone anymore!

Thanks!
Leasa

lisadukk · 04-12-2005, 01:13 PM

i wish i had some words of wisdom...but i am sure someone will...good luck and you are not alone

Lisa

acrowe · 04-12-2005, 01:14 PM

I have tons of cysts on my ovaries--they freaked when they saw the ultrasound. But, surgery was not recommended because it does not fix the problem of cysts. I have gone almost a year without a period before and it is scary. The best thing I am doing for my body is diet and exercise...because you NEED a period. And, I have lost 30 lbs and see AF pretty regularly. Just keep coming! Don't be scared...and good luck!

CathyWood · 04-12-2005, 07:31 PM

HI Welcome to SC. I am glad you found us. Feel free to contact me if you wish.

angel_sl · 04-13-2005, 01:17 AM

I don't know about the small ovary thing or about the cysts rupturing, but I was told that when I wanted to TTC, laproscopic surgery may be the best option. The dr would go in and pop all the cysts and then I would take clomid and that should give me a window of 6 months to a year to get pregnant. Hope this helps!