PLEASE HELP! Clomid confusion!

[Avocadosmoothie]

I'm not sure if this is best on the infertility or conception board but I'll start here as I'm desperate for help.

My husband and I have been struggling to conceive and our GP referred us to an NHS fertility specialist. When we finally got a date, it was 10 months off so we decided to try a private clinic to see if there were any simple tests or appropriate affordable treatments we could try in the meantime.

The private consultant reviewed the blood tests and scans I had done by the NHS and said although my scans show that I ovulate (corpus luteum present), I have the hormone properties of PCOS (mainly slightly raised androgen and low(ish) progesterone). He suggested that I try 3 months of Clomid on the lowest does - 50mg. He told me that because I already ovulate, it might not help me but would be worth a try before invasive IVF. I've finished my first round with no side effects. I was scanned at CD12 and told there was no over stimulation. Based on largest follicles of one at 14mm and one at 9mm on CD12 the nurse said that the Clomid probably hadn't had much of an impact.

A few days after this, I got a cancellation appointment with the NHS. The NHS consultant said she would not have prescribed Clomid to me and was actually quite surprised that a doctor had prescribed it. She excused herself to leave the room and came back with a senior consultant colleague. The senior consultant said that I should stop taking the Clomid immediately (in quite an alarming manner). When I asked what the problem was he cited higher risk of multiple births and that I was speeding up egg release which is counter intuitive for people struggling to conceive (I'm 29 with good FSH so I was surprised that was a problem). Confusingly, both the NHS consultants said I was borderline PCOS - I thought Clomid was a standard PCOS treatment.

I'm really confused and don't know what to do - is it best to take the Clomid or not?

[Avocadosmoothie]

On one hand, the private clinic has financial gain in prescribing Clomid (the fees for the scans and consultations I have to have whilst taking Clomid). On the other hand, the NHS is under unprecedented budget pressures especially in relation to IVF that NHS consultants would naturally be against a treatment with little/no proven benefit (I mean because I already ovulate naturally).

What do you think?

[highinthesky]

Do not take the Clomid.

There are many causes of infertility, it's better to work out what it is in your case and target cause rather than putting you at risk of multiple births. The NHS consultant should create a plan with you, stick to that.

If you are eligible for NHS treatment, disregard costs. It's more expensive in the long run to go down the wrong route, so trust the NHS fertility team.

[Avocadosmoothie]

I think my cause will be unexplained though. We've had all the tests. The NHS consultants have recommended me straight to IVF, no intermediate steps. So do you still think no Clomid? I appreciate and understand the risks around multiple births but I think that risk is even higher under IVF. Would Clomid not give me a last shot before my only option is invasive IVF? Thanks for your advice!

[highinthesky]

Don't think of it in terms of an "extra shot", Clomid is not without risks and for that reason prescribed with caution. With IVF, you can decide in agreement with your consultant how many embryos are implanted. (One would be enough!).

I know it's really hard and you're focused on the outcome - a healthy baby - but it really is best to stick to one plan, in this case from the NHS.

[toffeepuddin]

Hi OP. I was in a similar situation myself a year ago.
While I was waiting for my NHS appointment, I had went to a private fertility clinic, London Women Clinic. I got blood tests done, pelvic ultrasound scan of my ovaries,hycosy test and 2 months of clomid. The private consultant told me I had unexplained infertility and I should go for IVF (6k privately).
Around this time I got my first appointment at NHS, I again had a pelvic ultrasound again.
My NHS consultant told me I had 30 plus cysts on each ovary and a bulk in my womb (suspected fibroids or adenmyosis, this is to be confirmed when I get the camera in my womb) so my experience of private is not good at all. I think there all just for the money, NHS yes you have to wait but I think there more thorough in their investigations.
Had I went ahead with private IVF, i would have had implantation issues and it would have failed -it would have been a waste of 6 grand!

[Avocadosmoothie]

Thanks toffee, similar situation! Was you NHS IVF successful?

[highinthesky]

OP, I have to agree that private clinics prey on the desperate.

The practitioners will go to great lengths to explain the science behind their logic, but if you look at it in terms of the cycle : live birth rate ratio and then extrapolate into monetary terms it would probably put you off! My observation is that consultants with NHS posts are probably the least exploitative and most realistic, those from abroad that don't have any NHS responsibilities see it as a licence to print money.

You qualify for treatment under the NHS, so go for it. Either way it's not an easy journey.

[Avocadosmoothie]

I think I am slowly coming to that conclusion. I'm just disappointed because the Clomid and zero waiting time for IVF at the private clinic felt like the progress I really wanted. Back at the NHS all I can do is wait for the next call which will be to start IVF which the consultant said could 'take up to a year' - apparently central Manchester has one of the longest wait list in the country

[Frazzled2207]

Assuming you are still being looked after by the private clinic I would continue with the clomid unless there is some definite issue with you taking it. I saw a fairly useless nhs consultant who prescribed clomid despite not really having a clue what was wrong- I almost certainly was ovulating. Anyway I got pg immediately. It might well not work for you but you've not been given a good enough reason not to take it IMO.

[Frazzled2207]

Sorry to clarify above is what I would do but would never "recommend" that you go against doc's advice IYKWIM.

[Avocadosmoothie]

Thanks frazzled. My gut feeling is that I've not got a good enough reason not to take it and I can see from googling that many women are prescribed Clomid when they are known to ovulate. I know there are risks with Clomid but both the NHS and private consultant agree it's extremely likely I will need some level of fertility treatment to conceive so the likelihood is I will need to take on some level of risk.

It's just that I would be going against the advice of a consultant if I carry on with Clomid.

When you were prescribed Clomid, did you have any fertility issues at all? Even mild one? Do you know if you released more than 1 egg?

[Frazzled2207]

I had had various blood tests, scans and hcg and there was nothing obviously wrong just no pregnancy. Looking back however a dicky thyroid might have been a factor.
Can't be sure how many eggs I produced but by the time of an early scan just one sticky bean (now nearly 4). I know of several clomid babies and they are all singletons.

[Frazzled2207]

Oh and one mum I know with definite polycystic ovaries conceived a baby with clomid twice, both singletons.

[seastargirl]

I was diagnosed with pcos privately and prescribed Clomid by the same consultant on the nhs. I didn't ovulate on the 50mg dude so she told me to double that, I had two eggs release and we conceived one baby. I count myself lucky, I know of plenty of people who've had no luck with it but equally baby who have.

Are you doing the ovulation sticks and tracking temps, my consultant frowned on them, but it really helped me as I could see the effects.

Good luck it's a shitty road to be on, I hope you get the positive test quickly!

[Avocadosmoothie]

Yes I'm doing the ovulation tests, I can see the surge (with and without clomid). How many months did you have on 100mg before you conceived?

[seastargirl]

It was the first month on 100mg. I guess the difference is that I ovulated once without chlomid in 2 years of tracking though.

[toffeepuddin]

I have my IVF scheduled this may but depending on the results of my camera test, it may not go ahead. Luckily up north our waiting list isn't long. I would recommend doing investigations privately to speed things along, I didn't have to have my tubes tested because I had it done privately.
I know your anxious to get pregnant and yes the NHS are a tad slower but more thorough, cheaper and I think actually care about what's best for you

[Avocadosmoothie]

Hi toffee, I've had my tubes tested privately. The NHS recommended me to go straight to IVF without any further testing as I've had everything done now. I'm up north too - Manchester. Long waiting list here!

[toffeepuddin]

I'm in the north east and it was quick. I got put on list in November and my top of the waiting list appointment was end of January. You may get a cancellation

[Toolchest13]

Hello
I was prescribed clomid by my NHS consultant even though all tests had come back clear and I ovulated. She thought it might be worth a try at 50mg whilst waiting for IVF. I was unsure as I wanted to be on the waiting list straight away! I can't remember having any severe side effects and I now have a healthy 2 year old. At the time being pregnant outweighed the risk of multiple births (I might think a little differently now 😄)

[Avocadosmoothie]

That's interesting to know toolchest! So did you get pregnant on 50mg clomid?

[Avocadosmoothie]

Sorry toolchest just noticed we were talking on another clomid thread and I've realised you already said the third month of 50mg was successful!