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If Clomid failed for you, why do you think that was?

19 replies

HeyHeyWhatever · 02/01/2020 12:53

I'm now starting my 6th and final round of Clomid. I have PCO, but not PCOS. Pretty regular cycles, but progesterone of 26 on CD21 test. Scan on 1st round of Clomid showed 2 follicles ready to pop. Side effects have been brutal, and no success. IVF is the next step.

I have read something that suggests that Clomid may become less effective over time. I'm not sure why it hasn't been successful for me, and I wonder if some other issue will be revealed when we start IVF.

I just wondered if anyone else had any idea or impressions as to why Clomid wasn't effective?

OP posts:
stealthbanana · 02/01/2020 13:12

It wasn’t effective for me. It just doesn’t work for about 20% of people. I don’t think there’s much of a reason as to why (other than if you’re not overweight it seems to be less effective).

FYI it doesn’t become less effective over time per se - but clomid only helps you to ovulate. Unfortunately it does also thin your lining so over a few cycles it can become ineffective as even if it is making you ovulate the lining becomes too thin for implantation. So most doctors don’t recommend more than 6 cycles max of clomid. You should know how thick your lining is from your scans - if it’s ok that’s great.

LondonUnited · 02/01/2020 15:06

I had Clomid twice. The first time I fell pregnant on the first cycle. The second time i had it for six cycles and not even so much as a hint of a BFP. I subsequently had IVF which worked first time and there were no male factor issues.

In retrospect I think the problem with Clomid may have been lining issues as the pp mentions - my lining was slow to plump up during my IVF and ended up on a double dose of progynova plus patches.

I don’t think it was ever an ovulation issue - when I started private IVF my AMH was 132 (PCOS) and my clinic was horrified I had had the unmonitored NHS Clomid cycles with that reading, as there were so many follicles that there was a significant risk of super-ovulation and high order (triplets/quadruplets) multiples! So maybe a lucky escape there.

Good luck Flowers

AliceAbsolum · 02/01/2020 15:33

Because it was unmonitored and my amh was 1. So the 50mg would have done nothing. That's the NHS for you.

HeyHeyWhatever · 02/01/2020 16:10

@stealthbanana Clomid works better if you're overweight? I hadn't heard that. My bmi is 27 so that would be me!

I only had monitoring on my first round, so who knows how buggered up my lining is by now. @LondonUnited my AMH was 64, and despite 2 follicles ready to go, there was no volunteering of any ongoing monitoring.

@AliceAbsolum That's shit. I'm sorry they wasted your time. How many cycles and did you move on to further treatment?

I know someone whose GP handed them out like smarties with no monitoring whatsoever. Not even a referral to NHS fertility.

OP posts:
AliceAbsolum · 02/01/2020 16:13
  1. Then 3 rounds of IVF. Worked 3rd time, but miscarried 3 weeks ago at 8+5 😢
stealthbanana · 02/01/2020 18:33

Unmonitored clomid? It should never be unmonitored! Both for risk of multiple follicles and the lining issue. Is it nhs doing these cycles? That is really shocking

LondonUnited · 02/01/2020 20:18

@stealthbanana it definitely was in 2015 in my area. TBH then I was grateful to get anything at all as I already had a child so didn’t qualify for NHS IVF. But yes, with hindsight it was risky!

@HeyHeyWhatever if you do go to IVF you should respond well with that AMH!

@AliceAbsolum so sorry for your loss Sad

SallyPS · 02/01/2020 21:15

Currently on clomid cycle 5-9 . Has anyone done the stair step approach and what are the benefits of these . I thought you could only ovulate 1 a cycle ? Confused 😐

HeyHeyWhatever · 03/01/2020 10:36

@AliceAbsolum I'm so sorry. Sending you lots of love.

@stealthbanana Yes, NHS. Both the GP and my clinic. A friend did Clomid (successfully) a few years ago and she had monthly monitoring, although she had to fight for it. It seems the cuts have well and truly taken effect.

@LondonUnited Thank you - I'm keeping everything crossed. I am getting worried that I'll discover that the Clomid has fucked my lining. It was pretty good before.

@SallyPS I'm sorry, I'm not quite sure what you mean. Have you already done 4 cycles and you'll be doing 9 cycles in total? And do you mean increase the dosage as the stair step approach? Any increase in dosage should be advised by your doctor following a scan or day 21 test. They'll only increase the dosage if it hasn't induced ovulation, and they should then continue monitoring to assess the effects.

You can release more than one egg in a cycle (i.e. fraternal twins). Clomid over stimulates the follicles, which means there can be an increased chance of multiples if it works too well.

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SallyPS · 03/01/2020 15:29

Thankyou for your response . Currently taking clomid cycle days 5-9 . And getting monitored regularly.
I didn’t ask many questions at the GP about it and I always feel like they are in such rush
Why is it not recommended to take clomid mid cycle ?

EL8888 · 03/01/2020 15:59

I think it’s because we are unexplained infertility, NICE guidelines don’t advise Clomid for this. The real reason it does then lm not sure. I don’t think it was my lining as private tests l did separately and pre-tests for IVF always said it was great. We have done failed cycle of IVF since and still no hints about our issue (s). Cynically l think Clomid is a “shut up drug” so doctors say they are doing something for people

@stealthbanana it still happens! I have 4 cycles left and none will be monitored. Cycle 1 all they did was 21 day bloods and cycle 2 was nothing. We might use the other 4 cycles, we might not

HeyHeyWhatever · 03/01/2020 16:07

@SallyPS So the GP prescribed it? What other tests have you had, and have they indicated what they think the problem is? Have you been referred to a fertility consultant? What monitoring are you having? Sorry for all the questions!

Taking Clomid on cycle days 5-9 seems quite late to me, but I'm not a doctor! I've been taking it on days 2-6, and that seems to be pretty common. Even if you had very long cycles before, I think in theory the Clomid should shorten them.

I guess it's taken early in the cycle to stimulate the ovaries to produce the follicle, then to ovulate on around day 14 or so. I would guess it needs those days to work.

Did the doctor say why to take it on days 5-9?

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HeyHeyWhatever · 03/01/2020 16:10

@EL8888 I think you're absolutely right - it's often a "shut up drug". I've heard lots of stories of other women with no issues with ovulation being put on Clomid. With the side effects and the long term implications, it seems like madness.

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AttilaTheMeerkat · 03/01/2020 16:22

HeyHey

This is a scenario I keep on seeing; clomid then IVF.

Why have they suggested IVF as a next step for you as a couple and on what basis do they deem this necessary?. Do you actually have a diagnosis of the underlying problems?. What about tests to date; how thoroughly have both of you been tested to date?. Are there male factor problems?.

AttilaTheMeerkat · 03/01/2020 16:28

I would be asking the fertility team here dealing with you some very pertinent questions.

Clomid's been so effective as a treatment that sometimes it is given when it is not always needed.

Some women can become resistant to clomid; that is certainly not an unknown scenario with PCO or PCOS patients. Clomid's main job is to make the ovaries work harder.

A patient should be monitored closely whilst on it because it can affect hormone levels, LH in particular, markedly. As many women with PCO or PCOS have an excess of this hormone to begin with, more LH is not needed. My LH levels were very high compared to that of FSH.

I was not given clomid because the consultant at the time said it would not help me. I feel he made the correct decision.

AttilaTheMeerkat · 03/01/2020 16:29

EL8888

Unexplained infertility is no diagnosis at all; all this means is that they have failed to find out what is wrong. Sometimes it is a "diagnosis" given to couples when they as a couple have not been adequately investigated.

HeyHeyWhatever · 03/01/2020 17:13

@AtillaTheMeerkat

I had 2x CD"21, AMH bloods and CD2 tests (wasn't told the results of that because consultant said it didn't matter as my AMH was high). Also had a scan and an HSG. It all felt pretty thorough at the time.

In terms of "diagnosis", one CD21 result was 26 and the other 36, and they said that indicated I didn't always ovulate. Scan showed PCO, but was told I don't have PCOS as I had pretty regular cycles and no other hormonal side effects. I think I probably ovulate more often than I didn't because most months I would get +ve OPKs, but who knows.

DH has been tested and his results were all good.

So, was basically told Clomid would make me ovulate. We were to try that for 6 months, and if no joy we would then move on to IVF. No suggestion of any other investigations.

What questions do you think I need to be asking? I've tried my best to research and arm myself with some knowledge, but it's hard when it feels like you're fighting a service which just doesn't have the capacity to help effectively.

OP posts:
EL8888 · 03/01/2020 17:15

@AttilaTheMeerkat oh, l know. I’m just too lazy to write or say our diagnosis is “the doctors haven’t worked it out yet”. We have had various tests, both on the NHS and privately. Naively l thought the IVF might have shed some light on it but it never did. Our tests and stats were good there but the transfer didn’t work.

SpyroC · 04/01/2020 10:34

It's really hard to say without the monitoring scans. I think it's crazy that access to this varies so much based on your postcode and possibly consultants opinion. I was monitored throughout on the nhs. Initially I thought this was ott but as the months progressed I could see why it was important and I realised I was lucky. Monitoring resulted in a change in dosage and a change to letrozole. One month they found I needed a hcg trigger. It took 4 rounds for us to fully understand what is happening. It didn't work for me but I do feel I have a good understanding of what is going on and can at least say I know for sure that ovulation is not the problem. Following this I did some thorough research and pushed myself to ask loads of questions at my review consultation.

Keep pushing-I hope you get some answers x

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