Multiple cysts, POF and hormone replacement

[gatorgal]

I am 41 yo and was diagnosed with Premature Ovarian Failure 3 years ago. I am on hormone replacement. About 6 months ago I began having recurrent ovarian cysts. My CA 125 was 4. I had an ultrsound yesterday due to pain  which showed 3 cysts on the left ovary with the biggest one 3cm and 2 cysts on the right ovary both less than 1cm. There was also a large amount of free fluid which is actually pushing the uterus forward. I am waiting to hear from the dr today to see what he wants to do which will probably be removing the left ovary. I am nervous about having surgery because I feel that the cysts are symptoms of my hormone replacement not being accurate. I feel like I need more progesterone.
But on the other hand, I really don't need my ovaries anyway and the cysts are quite painful. But why would I be getting cysts when I have POF?? Is the hormones causing them? I am just really confused and would appreciate any input.
Thanks.
~Gatorgal

[painterchic]

Hi, I am jumping in with my two cents after being away for a few days...I agree with fungirl, the doctor isn't the one experiencing your pain or your hormones, so if YOU don't feel that it is right, then I would go with that feeling and maybe get a second opinion. Trust those gut feelings, that's why you have them. Fungirl, that is very interesting, I had no idea that could happen. I learn something new everyday here. Like Morrowville says, the more you get involved, the more you learn, (and the more amazing women you get to know!!)
I wish I had more info to offer, but I am only on day three without my ovaries and day two with my hormone patch...I'll let you know how it goes. Too soon to say, but I don't miss those cysts I tell ya!!  Good luck,let us know how you are doing...

[fungirl1011]

Hi, I hope your pain is doing better today.  I am one of the women that Shawn mentioned that is still getting cysts after my ovaries had been removed.  I am getting them because when my ovaries were removed, they were attached to my bladder, bowels, and colon making it impossible to get all of the ovarian cells.  Now, my ovary has regenerated itself and is producing estrogen again.  I have not had to be on any HRT since the removal of my last ovary 2 years ago.  Is it possible for you to get a second opinion?  You should not have to deal with the pain.  Keep in mind that WE know our bodies better than anyone, and if you feel your hormones are out of whack, then they probably are.  Getting a second opinion never hurts.  Please keep us posted on how you are getting along.

Hugs,
Kasie

[Morrowville]

I hope that the weather in Jax is as nice as it is in Chicago.
I can't really speak to your issues either, but would love it if you would keep us posted on here.  And feel free to get involved, the more women (and men) talking together, the more information becomes available for others.

Thank you for your post,

Kind regards,
Morrowville

[gatorgal]

Well, 3 months ago he wanted to do surgery immediately and I wanted to wait. Now, he just wants to wait and repeat the ultrasound in 6 weeks. I keep asking to maybe change my hormones but he doesn't want to. I guess that I am stuck for now.
Thanks for replying.
~Gatorgal

[ShawnP]

I really don't have a response to your question.  I was curious to  find out what your doctor said today.  I had my ovaries removed at your age due a complex cyst and adhesions, but I can't take HRT.  Did he mention removing them for biopsy?

You may have read through here that there are some women that are still getting cysts even after their ovaries are long gone.  I think the bottom line is if your hormones are out of whack, the cysts will keep forming one way or another.  So if you ovaries are malfunctioning, it might be throwing off the HRT as well.  I'm just guessing.  I really don't have a clue.  Just trying to help.

Keep us posted,
Shawn