What questions should I be asking about infertility treatments?
January 23, 2017 1:23 PM   Subscribe

My husband and I have been trying conceive since we got married 18 months ago. Unfortunately I have two big factors working against me - my age (40) and my PCOS, which I was diagnosed with when I was in my 20s. I was prescribed Clomid to make me ovulate, but after the first two cycles it stopped working. We're going back to the specialist this week: What are the options now and what should I be asking my doctor?

A few other possibly-relevant bits of information:
- I am F, and turned 40 at the end of 2016
- Husband is late 30s and had some tests done when we first talked to a specialist - he's fine;
- I have the 'skinny' type of PCOS, and shortly after we got married I was a bit too thin, at under 110lbs; I have been trying to bring this up a bit and am now at a slightly healthier weight. I don't have an eating disorder but tend to lose weight when stressed, and the big life changes coming up to and after our wedding meant I was very stressed for a while and dropped some weight I didn't need to. I don't know if this directly affected my menstrual cycle, but it probably didn't help;
- I've taken Clomid for six cycles, and although it worked in the first two, it stopped working after that, and increasing the dose hasn't had any effect;
- Thanks to past questions on Metafilter, I've got a copy of 'Taking Charge of Your Fertility', which has been really useful; unfortunately a lot of its advice is geared around tracking your cycle when you're already ovulating. However by using the book's charting technique, I've been able to establish the cycles in which I didn't ovulate (and this has been confirmed by the scans I've had too). The PCOS means that the ovulation tests I've been using have been giving false positives.
- We are in the UK and are going privately for treatment

Essentially, my questions are: What options are there for us now? Is IVF the next step, or are there other treatments I don't know about? What should I be asking my doctor?
posted by meronym to Health & Fitness (14 answers total) 6 users marked this as a favorite
Sorry if you've already looked at this, but, since PCOS is a diagnosis of exclusion, did your doctor check to make sure that you aren't actually suffering from congenital adrenal hyperplasia (late-onset/nonclassical)? There is some overlap in presentation and both affect fertility. The CAH test is relatively straightforward to do though a little time-consuming.
posted by praemunire at 1:31 PM on January 23, 2017

You'll want to ask about ovarian reserve testing.
posted by bq at 2:06 PM on January 23, 2017

Anecdotal: A close friend who had issues with PCOS and anovulation became pregnant successfully after ~3-4 months of vitex/chasteberry supplements at 1000mg once daily; she was on no other medication/supplementation at the time. There's little to no quality published data on the issue - a quick perusal of PubMed shows only this study and this review - but if your fertility issues are progesterone/luteal phase related, it could be of use.
posted by givennamesurname at 2:14 PM on January 23, 2017

bq has it; Ovarian Reserve Testing is the first stop on the infertility train for any woman over 35 who has not conceived in six months.

Unless something has changed in the past five years, the traditional progression if you have good eggs is Clomid > IUI > IVF. However, if your clinic allows it, you should ask if you can move directly to IVF. IUI is much cheaper at around £1K per go vs IVF at £4K per go, but it has a much higher success rate and you will be very, very frustrated if you end up spending money on failed IUI that you could have spent on IVF.

And I am not a fan of woo, but when you are spending this kind of money and living on this kind of hope, you may want to know you did everything you can every cycle. Studies show acupuncture very slightly boosts IVF success, so that's something you can think about if it is of interest.
posted by DarlingBri at 2:25 PM on January 23, 2017 [5 favorites]

Anecdotally 2nd'ing acupuncture. A friend had been trying for months and then got there two weeks after starting that.
posted by Reasonably Everything Happens at 2:26 PM on January 23, 2017

Yes , make sure you get the blood tests that estimate your ovarian reserve. It'll give you a better idea of what you're working with. Personally, at 40 I would push for IVF if you can afford it. I did five rounds before getting pregnant; I also did acupuncture that last cycle.

Also, stock up on cheap pregnancy and ovulation test sticks that you can buy online. You can use them at home on the months you're not doing treatments. You can pee on them as much as you need to check if you're ovulating or pregnant, no guesswork or charting required!
posted by exquisite_deluxe at 3:52 PM on January 23, 2017

As others have said, definitely get the ovarian reserve test - it's called the AMH test here in the states. As far as what to ask your doctor, it may be helpful for you to know your chances of success based on your particular case. They usually like to frame it in terms of "pregnancy rate" but the "live birth rate" is really what's important. Some people don't care about success rates because they will do procedures as long as they can keep doing them emotionally, physically and financially, but I found it to be helpful in the decision-making process.
posted by purple24 at 4:09 PM on January 23, 2017

I do think that I would pronto have you see a fertility specialist (board-certified ob/gyn in Reproductive Endocrinology and Infertility) if that is not the type of physician that you are seeing. I suspect you are not, because these tests of ovarian reserve would have been among the first an REI would have performed, along with imaging for tubal patency and a spermanalysis for your husband.

I would strongly suspect that you will need IVF.
posted by noonday at 4:16 PM on January 23, 2017

Someone close to me was in the same situation (although younger) and ended up going straight to IVF, despite it costing more. Considering your age, this might be a more efficient option if you have the financial means?
posted by ryanbryan at 4:36 PM on January 23, 2017

After Clomid was unsuccessful, my fertility specialist prescribed Femara. I don't have PCOS so not sure if this is contraindicated. I used it for two cycles and got pregnant the second cycle. (Ended in miscarriage probably due to undiagnosed clotting disorder.)
posted by erloteiel at 6:58 PM on January 23, 2017

Someone we knew had a cyst on her ovary (that is what the doc said and they did the surgery). That was a leading cause she had problems. However I would suggest always get a second opinion regarding surgery. Always.
posted by metajim at 9:26 PM on January 23, 2017

Hey! I feel compelled to answer this question, as a doctor who also has been diagnosed with lean PCOS. I went through infertility treatments just like this a few years back at one of the top academic medical centers in the USA, so I can tell you how my reproductive endocrinologist approached it.

- Full panel of blood work with hormone levels etc was first
- Pelvic ultrasound, HSG, saline sonogram
- Full 3 hr oral glucose challenge test for insulin resistance, drawing not only blood glucose levels but insulin levels every hour to see the response
- Based on the finding of insulin resistance from the GTT, I started on metformin
- I had done several cycles with Clomid already (unmonitored, with a regular OB/GYN), so I did Clomid + IUI for several cycles with monitoring. I had a trigger shot with this as well. Although I did ovulate, the cycles were unsuccessful.
- Next thing I did was the same deal, but using letrozole (Femara) instead of Clomid. I did not have any follicles on my scan in that cycle, sadly, so it failed.
- After that when I reconsulted, she gave me the option of IVF or injectables with another IUI. If I had been in a place where it was covered I would have definitely done IVF, because although it's more invasive, I really didn't want the increase in the risk of multiple pregnancy that came with using injectables + IUI (much higher risk of triplets or higher! This might not even be offered to you in a healthcare system like the NHS, with PCOS).
- In the end I decided to try one cycle of the injectables plus IUI and it was successful and I have one beautiful 4 year old daughter from that cycle.

As an interesting anecdote, 2 years later when I was back to my usual irregular periods (but I had restarted myself on metformin), I found out I was spontaneously pregnant with a baby boy. Didn't figure it out until I was at about 12 weeks along!! Biggest surprise ever!

Best of luck. Infertility with PCOS has a great prognosis! Feel free to message me. There are very few of us with lean PCOS out there!
posted by treehorn+bunny at 12:16 AM on January 24, 2017 [1 favorite]

I am also a "skinny" PCOS-er. Clomid also did not work for me at all, and when I did ovulate, I think it thinned my lining a lot. Not a fan. I was about to go to IVF when I got spontaneously pregnant when we actually stopped trying (got pregnant on a long vacation before we started IVF -- I hate this advice, it drives me mad, so I won't advise it, but sheepishly, it did work for me.)

Looking back what DID help I think was the HSG -- my doc had postponed this, and I got pregnant the cycle after I did it, and I've read online that this is common. I would also have liked to have tried Femara, but my doctor doesn't like to prescribe it -- it has been linked to birth defects but in my research this was a TERRIBLE study, and is actually not scientifically verified at all. I pointed this out to my doctor, but he still didn't want to do it.

Did not like IUI, but tried that twice. I think I would consider going straight to IVF if you can afford it if they are offering this.

My blood sugar and stuff was always fine, so I didn't try metformin -- not sure if it would have worked. I did do some woo stuff like Circle and Bloom, and honestly, I really liked it. Both times I got pregnant were the only two times I did the PCOS cycle -- surely a coincidence but at least it felt like I was DOING something.

I am also someone who had years of trying for a first baby, and then a very, very easy time conceiving a second baby if that's any help :). I think pregnancy just sorts the hormones out.

Please memail with further questions -- I found all of this really hard (esp as a skinny PCOS person so "losing weight" was no help for me).
posted by EtTuHealy at 2:24 AM on January 24, 2017

Sorry just to chime in one last time (I am a generalist gyn) but the issue is not just PCOS but ovarian reserve, youR best chance is probably IVF. I really would again strongly advocate that you see a fertility specialist. 18 months and failed clomid despite higher doses does not equal a good prognosis, I would hate to see you waste your time with potentially unsuccessful medical management.
posted by noonday at 6:44 AM on January 24, 2017 [2 favorites]

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