XP from TTCAL: Let's talk about PCOS and LEEPs (t&ps and advice, please)

eliida · November 2014

Good morning, everyone! Hope you’re all enjoying your Sunday. I usually stick to TTCAL, but someone mentioned that you wonderful ladies might be able to help me out. Does anyone have a moment to shed some light on a situation my sister is dealing with?

My baby sister (age 29) has the double whammy of PCOS and cervical dysplasia. Her most recent US revealed 21 cysts on one ovary. Over the past couple years, she has also had two LEEPs in response to Grade III CIN. This month, right as she was about to graduate to 6 month check-ups (vs 3), she had a bad pap and is being sent for a biopsy. She’s upset, to say the least.

She has a lot of anxiety about her condition(s), which tends to cause her blood pressure to sky-rocket during appointments and gets in the way of her being her own advocate. Here’s where I’m hoping 3T can come to the rescue: Tomorrow I am going to accompany her at her doctor’s office. What questions should I ask? (Doctor Google is scaring the hell out of me.) What kind of goals should we be setting? When is it time to switch physicians? This guy is great at monitoring her, but it seems like after two years we are no closer to a solution (if there even is one).

Thank you in advance!

lebradford · November 2014

I'm not sure if I have any answers, but I'm going to ask some clarifying questions! Is she TTC? If so, how long? Is she having regular cycles? If not, what is the primary concern? Just maintaining her reproductive health in general?

eliida · November 2014

@lebradford She is currently TTA. So far the doctor has been treating the PCOS with BCPs, which keeps her more or less regular. Her last LEEP was over a year ago.

The primary concern at this time is maintaining her reproductive health. Her doctor likes to lead with worst case scenarios and her combination of factors makes this pretty grim. (There's also concern that she may be developing diabetes.) Is 29 too early to talk about ER and freezing?

Thanks!

eliida · November 2014

@murrt This is super helpful. Thank you.

eliida · November 2014

@murrt The abnormal paps are definitely related to HPV. That's a good idea to talk about her current partner and what can be done to minimize future occurrences. She is no longer with the person she was when all this started. I think, like you, she has some denial (plus anger) and is not asking these questions.

Thank you so very much for taking the time to help me with this.

curve31 · November 2014

I've had a LEEP and two colposcopies. The second colposcopy was after my LEEP. I had a "bad" pap but the colposcopy was normal. I really think it takes time for you body to heal itself. And as overly cautious as doctors are, cervical dysplasia is super slow growing. The doctor who did my LEEP said afterward, it would take 10 years for what I had to turn to cancer. I kinda think PAPs every 3 months is overkill.

mharnicker · November 2014

I had a One LEEP procedure several years ago along with a few colposcopy procedures. I was told years before TTC that I would not be able to get pregnant. Here we are one year TTC (as of tomorrow) with no BFP yet, although with DH testing we found out he had very low sperm count. Anyways, during our first RE consultation. He told me the LEEP causes limited cervical mucus which makes it harder for DH small amount of sperm to swim. I don't know if this helps but this was my experience.

BandM14 · November 2014

I had a LEEP almost 2 years ago, and have had all normal pap smears since (I had to go every 3 months I think for a year, and now I'm back to once a year). My RE said my cervix looks perfect and there's no reason to think that the LEEP caused any of our fertility issues.. that being said, I definitely notice very, VERY scant cervical mucus since the procedure, which I know can impact fertility. We are looking to try IUI this month if I ovulate on my open side (I also have a blocked tube, yay!).

I don't know if this helps... I guess it's a personal choice if your sister wants to freeze eggs in case the dysplasia and PCOS might interfere with getting pregnant. The thing is, she might have NO problems at all-- it could be as simple as taking some medications to help with ovulation, and everything will go along fine. You really don't know until you actually start trying how fertile you are going to be... so she can either wait and see, or choose to take some action now just in case. But I don't think that either PCOS or LEEP procedures are "death sentences" for fertility by any means. Good luck to your sister! You are being a great support system by attending her appointment with her.

lebradford · November 2014

Neither of these issues would warrant freezing eggs, in my opinion.

I don't know as much about the LEEPs and fertility. I did have a different but similar procedure once, but my doctor has never indicated that that will be an issue for me in terms of pregnancy, so I'm not worried about it right now. I'm sure the degree to which this impacts your fertility varies though, so I think it's worth asking about. Egg freezing obviously would not solve a cervical problem anyway, so it wouldn't help even if this is an issue for your sister.

In terms of the PCOS, I'd say BCPs and staying at a healthy weight and potentially being screened for diabetes would protect her fertility for now. I don't think PCOS warrants egg freezing either. Even if your sister experiences infertility due to PCOS, she should be fine to do an IUI or IVF later on, and it'd be better to do a fresh IVF cycle or at least freeze embryos (instead of just eggs) when she's ready to TTC than to freeze eggs now. Maaaaybe if the cervical dysplasia is going to cause her to delay TTC like 5+ years, she might consider freezing eggs, but otherwise it seems unnecessary.

BunnyBerry · November 2014

This is all really, really great advice!!

It's so nice of you for joining your sis at the doctor and helping her advocate for herself.

I have HPV too, and it's kind of embarrassing, but more frustrating - no one warned us in health class that there's an STD that males carry without knowing even when they test negative for STDs; I didn't know I was at risk for something that could give me cancer or harm my ability to carry a baby to term! It makes me mad. I know I would have made different decisions in life.

I agree with PPs, PCOS and/or cervical factor aren't reasons to freeze eggs. At your sister's age, only a tiny percentage of women would have diminished ovarian reserve or egg quality, and egg freezing would not be typical.

eliida · November 2014

@Pickles4Prez did not oversell, you ladies are seriously amazing! Thank you. This is incredibly helpful information--I already feel better about her prognosis. I have a feeling that since her doctor likes to dramatically start with the most horrible of possibilities, my sister doesn't hear anything he says after that. I will share all of your wisdom with her.

I truly appreciate you all sharing your experiences and wish you the best of luck!

BTW- @lebradford Yes, diabetes is on her radar right now. She recently switched BCPs and the hope is that this move will help her get her weight under control. FX.

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