Not really multiple related, but...

Rynleigh

I made a longer post in the February 2013 board, but, basically, my doctors are telling me that I need to have surgery during week 17 to remove BOTH of my ovaries, due to the cysts discovered last week. 

Have any of you MoMs ever had one or both ovaries removed during a pregnancy?? I posted in the high risk section about it, but no replies there, so far. The doctors are all trying to reassure me that the risk of losing the babies is less than 20% and that I probably have a higher risk of losing them if I don't have surgery and end up with one of my ovaries rupturing or contorting (which would require emergency surgery, possibly at a more dangerous point in the pregnancy)... but I'm really stressing out over this decision. I have to give my "final answers" by the last week of the month.... just looking for reassurance from anyone who has been through this and come out OK.  

shaunah816

No experience with this, but I just wanted to give you a big virtual hug. You are so strong!! 

Is this diagnosis from your MFM or OB? Do you think you'd be interested in getting a second opinion, just in case? 

Rynleigh

shaunah816:

No experience with this, but I just wanted to give you a big virtual hug. You are so strong!! 

Is this diagnosis from your MFM or OB? Do you think you'd be interested in getting a second opinion, just in case? 

The cysts were found/measured by the Perinatologist (MFM) who referred me to a specialist. The preliminary diagnosis was given by a Gynecological Oncologist, who is also a surgeon. OB saw the cysts on a roll-cart ultrasound, but didn't have anything to do with the measurements/diagnostics/treatment advice.  

The cysts are going to be checked for cancerous tissue as soon as my ovaries are removed, but the GOS wants to remove both ovaries completely because he firmly believes that if he just removes the cysts and leaves the ovarian tissues, that they will be non-functional due to the damage already caused by the cysts.. which means he would be making the surgery more invasive, longer, more risky to me and the babies... not to mention leaving useless tissue that could eventually become cancerous. 

Basically, no matter what, I'll be on hormone replacement therapy as soon as the babies are born - regardless of whether or not they remove the ovaries, and I need to expect to have everything (ovaries & uterus) removed by the end of next year... but I'm still really worried by the risks to the babies from the surgery if I do it before they're born... 

jessican08

I'm sorry I have no advice, just wanted to wish you GL in your decision. I hope someone out there can offer some advice ((HUGS))

Rynleigh

There aren't a whole lot of "better" second opinions I can get. There are very few practitioners in this state who specialize in this sort of thing, particularly during pregnancy... there are only two of them who work for all of my HMO in this state (which happens to be one of the largest HMOs on this coast), and there are few independent ones. Just on one plane of depth, my Peri could count well over 12 cysts just on one ovary, many of which measured larger than the babies did... The diameter of my right ovary was 20cm, my left was 15cm. They are estimating that they will find over 20 cysts per ovary, and they're not little PCOS cysts.... they're full sized 2-5cm cysts, all on top, beside, below, etc each other. 

idk I'm just a bit panicked because knowing that I could lose my fertility AND the twins is terrifying... having a miscarriage - hard... being permanently sterile - hard... both? Unfathomable, to me.  

BabyCarryingVessel

No experience with this either, but just wanted to let you know that I'll be praying for wisdom and courage for you to get through this. BIG virtual hug!

KarlsSweetie05

Personally, I would still ask for 3-4-5th opinions - out of state and out of network if needed... and google the heck out of your condition.

I wouldn't think too many girls have gone through this procedure, but surely there is someone out there you can talk to.

I'm sorry you are faced with this now instead of being able to enjoy your pg.  (hugs)

jellolz

d they know WHY you have these cysts?!

Rynleigh

Thanks for the motivation, ladies. 

I just emailed my Peri and voiced some of my concerns.. I'm going to wait until I hear back from her before doing anything else. I don't know how she's going to react to my letter, but I'm sure she's used to crazy pregnant women. 

 

My email:

______________________________________

Dr. //OBGYN Ocologist Surgeon// is adamant that they can't do anything to save the babies if I go into labor during surgery, the lack of probability of it being a cancer (according to him), and the fact that I had practically the same exact problem with my last pregnancy and the cysts eventually went away and caused zero other complications with my pregnancy.. saying I NEED to have both ovaries just completely removed and an eventual hysterectomy sounds unreasonable and extreme. I feel like he is very eager to just cut them out and be done with it, and I don't feel confident in that choice.

I know Dr.s in his specialty are limited and I'm not on the PPO plan, so I can't afford to go outside of //HMO// for a second opinion.... but all my instincts say this is a bad choice.

Reducing the cysts via laproscopy or some kind of drainage to ease any possible pressure, I can understand.. but complete removal of both ovaries changes the entire course of my life, permanently. I am really lost on this right now. Once we hit the scheduled surgery date, I'll already be further along than I was when hospitalized with my last round of cysts/pregnancy, but with 2x the baby I had then.. but the babies will be too young to survive if I go into labor and I was advised that nothing can be done about it if I do go into labor (pre-emptive pills, but no intervention). The argument I was given was if I ?wait and see? and something happens in the 3^rd trimester, surgery becomes more risky.. but the babies would also be more developed and closer to viability the later..

This isn't a choice that just affects this single pregnancy. It is irreversible and will affect me for the rest of my life, and could reduce my life span.

I feel like it would be irresponsible to wait to voice this concern until the ultrasound, when we will be so close to needing to make a final decision. Any possible ways to get more opinions, other options... anything, would be very much appreciated. I feel distressed.

______________________________________

@ Last poster, the general consensus as far as what makes sense is Ovarian Hyperstimulation Syndrome. The reason they think this could be wrong is because OHSS is almost always ONLY seen in women who undergo FSH/Clomid/etc therapy for stimulating the ovaries for egg retrieval, combine with HCG supplementation or HCG pregnancy production.

While I've never done ANY IF treatments, there is a very rare occurrence of people having a genetic mutation that allows it to occur in spontaneous pregnancies. I had almost identical cysts with my last pregnancy (tho my ovaries were smaller, at 11cm & 12cm, rather than 20cm & 15cm - but that was a singleton, and I would have had less HCG and FSH from a singleton than I would right now with twins, too). 

The other possibilities are cancer (which they don't want to biopsy for, they jut want to check the ovaries for cancerous tissue after they remove them!), or an unknown underlying cause... but everything in my history fits with OHSS (which they haven't done genetic testing on me for). 

Gah. We will see what my Peri says, and I'll go from there. I insisted on getting another ultrasound on the 22nd to confirm whether or not my ovaries have started to shrink at all... if they are down by even 5cm each, I think I might refuse to have surgery. Am I being reckless?? I'm so stressed and anxious and upset that whatever the hell this crap is seems so damn rare and I have so few stories to compare to!! 

tarajayne

I don't have any advice either but I will be praying for you and your LO's too.  Hopefully you can come to an informed decision that will be best for all of you.  *hugs*

MelleTX

I am so sorry you are still battling with this.

You are definitely right to keep asking questions and keep pushing until you get an answer you are satisfied with or a treatment plan you are comfortable with.

Many prayers and hugs to you!