Feeling discouraged after clomid failure

My first clomid cycle has been a complete and utter disaster and I don't really know what to do now... :help:

I think the biggest problem I'm facing here is the desperate need for a new fertility specialist, one who is actually a fertility specialist, and not just a gynecologist who dabbles in prescribing clomid.

I had my day 21 blood test on Tuesday, as per instructions, but was unable to get results out of my specialist until 5pm Friday. I was on my way to my acupuncture appointment, walked in and promptly burst into tears. A progesterone level of 1.5 is might depressing!

I have PCOS, and had absolutely no improvement on metformin, apart from losing a little weight. I'm now out of the "overweight" category.

Right on the point in my cycle where I was told I could be expecting to ovulate, I developed major anxiety problems due to stress at work. We don't know yet whether the meltdown was triggered by the clomid, or the meltdown interrupted the ovulation process. Either way my GP has advised me not to try another clomid cycle until after the end of the school term, when I'll be on holidays and under less stress.

My gynecologist went from "sorry, clomid didn't work" to "perhaps you should consider IVF". Rather a leap there, it feels! I've tried on cycle on 50mg of clomid. My DH has a testicular varicocele and we are awaiting a specialist appointment in order for him to get it repaired. The current specialist just rambled on about how we both have problems and that the risk of miscarriage and chromosomal abnormalities increases with age so we don't want to waste time on this and perhaps we should consider IVF.

Is it possible that 50mg of clomid can fail to have any effect at all, but 100mg or 150mg might actually work? Or is this an indication that we're looking at injections in order to induce ovulation?

I figure that I really need to get myself referred to a fertility specialist who is attached to an IVF clinic so that I can actually be monitored all through the cycle so that we know whether or not things will work before the event, not nearly two weeks later! This is the point where I get extremely confused. It appears that in Sydney there are 4 different IVF clinics, and I just don't know which one to choose! What sort of things should I look for in choosing a fertility specialist?

:confused: I feel way out of my depth here and I'm hoping that someone can give me some advice, recommendations and/or point me in the right directions. :help:

BW

BW - wondering whether this was your first ever cycle with Clomid? I know it can take a few cycles to work thats all. But I agree that you should really be seeing a fertility specialist - and I think that really is a big leap, although unfortunately many of them tend to make that same leap it seems (fertility specialists included!)....

I am currently going through IVF Australia and they have been wonderful so far. I previously went through SIVF and was not happy with them. I think it is pretty hard to just 'pick one' but its pretty much exactly what you have to do... look up on the net for any people's comments about them and also look into their qualifications, whether they still do research (because I believe this is important because if they do they are usually more aware of recent developments etc), and then I guess personality has a lot to do with it too...

BW - not ovulating on 50mg of clomid doesn't mean yoou won't ovulate on clomid. Sometimes the dose needs to be higher for it to be effective. If your GP is good they can arrange for the monitoring throughout the cycle too (like u/s to check for follicular development).

I saw one IVF speciallist who I was so so about, mainly because his focus was on the fact that I was overweight when he didn't ask me about my diet and exercise (or the fact that I had been doing 4-5 hours of cardio per week for 8 weeks without losing a single gram of weight AND being on a low GI diet). I have a recommendation from a midwife friend for a different IVF specialist but this doctor is in the city so probably a bit far for you. Sometimes finding the right doctor is a matter of trial and error (and trialling personality) which is frustrating when you just want to get it sorted ASAP.

BW, I am sorry to hear that your first Clomid cycle didn't work out. It is true that some people need more than 50mg, so it might be worth asking whether you should try that.

I agree that it's difficult to choose a FS and I can't offer any specific suggestions coz I'm not familiar with NW Sydney. However, most of the IVF clinics have lists of affiliated specialists on their websites and I found that a useful starting point. If you tell your GP what things are most important to you then he/she might be able to help you select one.

Good luck, I hope you find some answers soon. :goodluck:

Yes, it was my first ever clomid cycle. What really struck me as odd with the current specialist is that there were no instructions to increase the dose, just have another blood test next week if I don't get AF... which I probably won't, and I'm definitely not going to get another blood test! At least not one where the results go back to this guy!

I did tell my GP I wanted a fertility specialist like my rheumatologist... and that's when he suggested the specialist a friend of mine hated and swore she would never go back to, but has been highly recommended by other people. I'm becoming more and more inclined to trust my GP's judgement on this one, simply because trying to find an alternative is proving to be a very difficult process.

The one thing that's really thrown me with the clomid not working is that I was having lots of side effects from it... Do people for whom clomid doesn't work still get all the hot flushes and sleepless nights as well?

I think that just as a bit of an experiment, I might try a 100mg clomid cycle once we reach school holidays, but get my GP to run the blood tests and maybe try to track hormone levels from the start of the cycle, to see if we can find any sign of it doing something for me. I'm guessing it will be ages before we get an appointment with a new specialist, anyway.

BW

Sorry to hear you have not had success with the clomid. I personally think that your cycle should be monitered with U/S to track O, as I was ovulating late still on clomid. Not to mention the chances of multiple pregnancy using clomid. There wasnt much change to my cylce while taking it. I have heard that it may take up to 3 months for results, and that you should only take it for a max of 6months. Personally i think you would have more success with a fertility clinic, and consider IUI or IVF. Theres so many more things that they can help you with.
All the best.xxx

BW - sorry to hear the the first round of clomid didnt work for you.. I agree with the other posts that it can take more than 1 round and more than the lowest dose to get everything working.

From what you have said it sound like you are not happy with the Dr u are currently seeing for treatment.. if this is the case then I really do recommend looking for a change. I know it is a pain waiting to get into a new Dr, but a FS would know more about TTC with fertlilty problems (I am assuming this is the case) and also when you do get your BFP you would continue to see the same Dr and if u r not a fan to start with it could end up being a VERY long 9 months!

Re the Dr not giving any instructions to increase the dosage - I do know of some Drs who like to give the lower dose a couple of goes to see if it will work. I guess he IS a Dr and would know your medical history and has most likely made his judgement on all things considered - based on that I dont know if increasing the dosage on your own accord would be the best thing to do... Totally up 2 u, but maybe the Dr didnt increase the dose for a reason IYKWIM????

Whatever you decide to do (sorry i cant recommend anyone - my Dr was awesome but in QLD :rolleyes: ) I hope it all works out for you and soon!!

Hi BW!
Sorry to hear your cycle wasn't successful, I did 8 clomid cycles before going to see my ivf Dr. I know your friend didn't like him but he totally suited my DH & I & as you know we were successful with our 1st cycle under him.
There is another Dr there called Kim Matthews, she has offices in Penrith & also sees patients out of the North Parramatta clinic.
Good luck with making your decision!
Lea

I really think that its important to be seeing a specialist iykwim Is there a fertility clinic you can go to? I agree with Ally regarding ultrasound. I'm actually really cross for you. I hate the stuff around some women get with regards to fertility I swear some of it is more about the $ than it is about the results. Don't stop until you get some advice or plans you want. I am a bit shocked that he suggested going straight to IVF with my Dr he gave me a plan of attack straight away. And the guy I saw specialised in PCOS. Can you get referrals? If not I'd be happy to contact my Dr and find out if he knew anyone in Sydney that is highly qualified. I know its a PITA to change Dr's but it might be worth it. I like the others don't feel one cycle is enough to class it as not working.

Goodluck!

*hugs*
Cailin

I'd actually gone to my GP to get a referral to a new specialist a while back, he talked me into waiting to see if my DH had a varicocele to explain his bad SA results, and to see if the clomid would work - just so I had more information to take to the specialist when I did go. I guess we've got the answers we need now. :rolleyes:

Cailin, I'd really appreciate it if you could get hold of names of PCOS specialists in Sydney, particularly in the north-west areas of Sydney. At least then I have a range of options and can discuss with my GP which one might be the best one for me.

I know some people prefer a non-intrusive approach to dealing with infertility, but I've had quite a few different health problems over the years, and I've come to appreciate the aggressive, leave no stones unturned approach to dealing with things. Everything is much less scary when you know what's going on in your body at each stage. I like specialists who give me all the information and let me participate in the decision making process and who can accept that I'm going to do a lot of reading and research of my own.

Lea, the thing that worries me with regards to Kim Matthews is the fact that PCOS isn't her area of special focus. I'm sure she's wonderful, but I want someone who's going to know the finer details of the condition... particularly as I don't seem to fit the typical profile of a woman with PCOS.

BW

IKWYM BW I have PCOS as well & as my Dr puts it I'm 'not a classical case' PITA really isn't it!!!

Hope you get the answers you are after ASAP!

BW that is EXACTLY what my dr did for me, laid it out straight no BS gave me a time plan for each treatment and told me what it all involved. I knew what to expect next every step of the way and it sure does make a difference. I'll do some research for you and be in touch. The other thing I appreciated was the option, I didn't want to go straight for IVF I wanted to exhaust all other avenues first so he catered to that. I think input on our TTC journey is extremely important and it also helps IMO with the grief that each unsuccessful cycle brings as at least you know whats next iykwim? But like everything everyone is different so whilst this was what I needed to help me stay positive for 24 mths it may not be the same for everyone.

*hugs*
Cailin

That sounds like the kind of doctor I want, Cailin! I think I've been spoiled by having a rheumatologist that is just like that. I've been seeing him for years now, and the first thing he did was test for absolutely everything he could think of... and then a few more tests when they all came back clear, and so far, even though he keeps running tests and occasionally thinks of something new to try, the only thing that shows in my blood tests is that there's some sort of inflammatory process going on.

When it came time to decide on a long-term treatment plan, he told me everything about the three different drugs I could choose from... I knew how long I could expect to wait before each drug had an effect, I knew what side effects I could expect, what dosages and treatment plans I could expect to follow with each of them. Then it was up to me to decide which way to go. For short term relief, he accepted that I was extremely reluctant to go with one particular drug, even though it would have been one of the best options for me, and he helped me hold out for as long as possible before I had no choice... then he taught me how to adjust my dosages so that I could be on the lowest possible dose needed for relief, and I knew what steps I needed to follow each time I needed to increase/decrease a dose. And then we discovered that the usual steps in increasing dosages were too big for me and we had to go slower... It's more like he's taught me how to manage my disease rather than him managing the disease for me.

I know it's a slightly different situation with the whole PCOS and TTC thing... but I want a specialist like that!

BW

Hi BW,
I too have PCOS and I am not a classic case. I may be a little overweight now but up until I was 23 I was as thin as a rake. So I used to get frustrated by doctors who said I needed to lose weight to get pregnant. As far as I was concerned I never ovulated nor had periods when I was thin for 10 years so why should losing weight be my answer. I also tried Metformin and it did nothing for me. So when I finally went to an FS with a clue about PCOS it was wonderful. The first magic words he said were 'well you're thinnish so weight loss is not going to help you.' How long had I waited for someone who saw my PCOS as an individual case! So I fully recommend seeing an FS who knows about PCOS.

The other thing my FS said about clomid was sometimes women with PCOS won't ovulate on clomid and the less likely they are to ovulate on clomid the more likely they will on injections. Although I really think you have alot of clomid attempts to try first. As my FS would put it 'with 50mg it is only really the smell of an oily rag.' There is still a lot of hope for you on higher doses.

Good luck!

Thanks, Poppy.

You sound very much like me... As a thin teenager I would go for ages without having periods, once well over a year. I thought it was wonderful at the time, but now... not so much! My weight has gone up a little after being on prednisone for arthritis over one winter, and I've managed to get most of it off. I'm now sitting just within the healthy weight range calculated by BMI. Any extra weight I do carry tends to go straight to my belly, never bottom, hips, thighs.

So... I have PCOS... yet I'm not overwieght, have never had acne in my life (not even as a teenager! I used to wish I could get acne as then my skin would be oily and not so dry that it itched constantly!), I'm small-busted and I don't really have a problem with excess body hair (I know of women without PCOS who have more trouble with hair in the wrong places than I do!), my hormone levels all test within normal limits except for free androgens which is only "slightly elevated" in the words of my specialist. I have polycycstic ovaries and I don't have anything even remotely resembling a normal menstrual cycle. For all intents and purposes, it appears that I only have a "very mild" (also in the words of my specialist) case of PCOS... BUT WHY WON'T IT RESPOND???? It should have been easy to fix, but it's not!

Poppy, you've given me a lot of hope that a specialist who knows their PCOS is actually going to know what to do with me.

BW

BW,
It would be best if you went to a FS who is also a Reproductive Endocrinologist. They usually have CREI after their name I think. It is an overseas qualification I believe and they have studied the endocrine issues that can affect fertility and PCOS is one of those. To find my FS, although I was not sure that I was going down the IVF path, I went to the websites of the 2 IVF places in Melbourne and they have the doctors profiles on them and I picked the one that had the qualifications and interests that most matched what I needed.
good luck. sounds like a change of doctor is just what you need.

Thats a great tip Anney :) BW I will make some calls next week, but in the meantime I think Anney's tip is a great one.

*hugs*
Cailin

Thanks for that, Anney.

I've noticed that some doctors are listed as reproductive endocrinologists, but don't necessarily have CREI after their name. Could this just mean that the qualifications aren't listed, or that they aren't as good as one with a CREI? Or being an overseas qualification, they've just never bothered to get it?

At least if I don't come up with the name of a doctor that leaps out at me and screams "I'm the best doctor for you!", I'm certainly building up a list of questions and requirements that should help my GP determine who would be best to refer me to. Through this, I've actually managed to scratch Sydney IVF as a possibility as none of the doctors at the clinic closest to me are reproductive endocrinologists, just OB/gyns with an interest in infertility.

I'm starting to feel like I'm getting somewhere now!

BW

BW, I agree with the other girls. Just because you didn't ovulate on 50mg doesn't mean you won't on 100mg or 150mg. There's quite a few steps between here and IVF for you missy!! I am glad you are seeking out another specialist. I did too and am so glad now that i did.

Remember what happened with me? I started on 25mg and nothing happened. My dose was increased the next cycle and my prog. levels went from about 20 to 60 so it can definately make a huge difference.

GL with finding a new dr. I'd recommend mine (he's the same specialist that Keen sees) but he's in the city and I know you wanted one closer to home.

Hi BW,
I just wanted to correct what I said about the CREI, as I just looked it up on the internet and it is an Australia/NZ certificate that Obstetrician/Gynaecologists can do, Seems that you will only find them attached to IVF clinics as a requirement is to be working with infertility for a large percentage of their time. If you google CREI you will see a result titled Certificate in Reproductive Endocrinology and Infertility. the file it points to has a list of doctors with that certificate in each state. Perhaps the ones that don't list it after their names have done something similar overseas and don't list it as would not be easily recognised.
I don't think Keen's doctor is on the list but I believe he is overseas trained so may haev done the equivalent overseas.

failed x3 rounds of clomid i am on my first round of perugon i have been on it for 19 days and no luck my doc has increased my dosage. i am so sick of these needles we have been ttc for nearly 2 years and i am 25 years if age. its been an emotional rollercoaster. its really hard as i have pcos i dont know what to do i get very emotional.