# Confused by the experience so far



## Kwasiorkor (Nov 4, 2017)

Ok, so this is a bit of a rant but bare with me. 

We have been referred to NHS fertility services at a hospital further from our home than I would like (we’re physically closer to another NHS service but due to postcodes they wouldn’t refer us). We’ve had a sperm count (normal), blood tests (they told me all normal), STI testing (normal), pelvic ultrasound (normal) and hysterosalpingogram (normal but bloody painful). My husband has been with me for all the appointments and I’m really confused by the whole experience.

The plan given to me was: it tubes blocked after HSG then straight to IVF, if clear then Clomid.

I asked what the specific indication for clomid (ie is it PCOS) but just got told it would increase the chances of a pregnancy.

I had my first clomid scan and had 4 follicles. I tried asking again about why Clomid specifically if I didn’t have an ovulation problem or PCOS, but he wouldn’t give me a straight answer. 

I left the appointment (with my husband feeling more confused than ever). We were told to do ovulation testing and have lots o sex. 

I’ve tried calling them to ask questions of the specialist nurse but all I get is ‘I’ll ask the consultant to call you’ and no one ever does. I’ve had 2 months of clomid and have never had a positive ovulation test and I’m not sure how to even address it with them. 


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## Tincancat (Mar 19, 2012)

You say you don't have a problem with ovulation then say you haven't had a positive ovulation test with Clomid: that doesn't add up.  You need to call them and explain you are not getting positive ovulation tests.  
TCCx


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## Mercury (Jan 31, 2012)

Exactly what Tincancat says. If you feel they aren't giving you answers then speak to the PALS team - every hospital should have one and they're there to liaise between patients and clinicians.


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## Kwasiorkor (Nov 4, 2017)

I’ve told him last time that I’d never ever had positive tests but he said as I was having a monthly period I was ovulating. I presumed that I wasn’t catching it on a test at the right time. 

With regards to complaining I find that a difficult one as I work in the NHS and it’s not the crime of the century. It’s a hard one professionally as the NHS is a small place


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## Mercury (Jan 31, 2012)

Using PALS is a long way from complaining, it's a way of addressing issues where there seems to be a breakdown in communication which is what you've described. In fact, the whole point of PALS is to avoid formal complaints. I also work in the NHS and have used PALS at my own hospital and at another hospital to chase lost referrals and it was fantastic.


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## bobo66 (May 1, 2012)

Hi! I agree with the others that this doesn’t add up and you should ask for a proper explanation. I’d say keep asking - I don’t have personal experience of PALS but I know many others have found them good. I had to keep arguing for proper testing before going on Clomid, but they did in the end!

Did you have day 21 blood tests done for progesterone? They should give an indication of whether you’re ovulating on your own if you have a 28 day cycle (they need to measure progesterone 7 days before your period). And are you getting a period at 28 day intervals on Clomid? 

The ovulation tests - are they urine ones? The difficulty with those is you can miss ovulation quite easily (and if there’s a possibility of PCOS you can get false positives with urine ovulation tests). Certainly on your first cycle on Clomid it’s best practice to have a blood test for progesterone as that gives a more reliable idea of whether you’ve ovulated but again they’re only helpful 7 days before your expected period. If blood tests show you aren’t ovulating, they should be able to increase your Clomid dose to see whether you ovulate at a higher level - most people are started on 50mg and can usually go up to 150mg.


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## Kwasiorkor (Nov 4, 2017)

bobo66 said:


> Hi! I agree with the others that this doesn't add up and you should ask for a proper explanation. I'd say keep asking - I don't have personal experience of PALS but I know many others have found them good. I had to keep arguing for proper testing before going on Clomid, but they did in the end!
> 
> Did you have day 21 blood tests done for progesterone? They should give an indication of whether you're ovulating on your own if you have a 28 day cycle (they need to measure progesterone 7 days before your period). And are you getting a period at 28 day intervals on Clomid?
> 
> The ovulation tests - are they urine ones? The difficulty with those is you can miss ovulation quite easily (and if there's a possibility of PCOS you can get false positives with urine ovulation tests). Certainly on your first cycle on Clomid it's best practice to have a blood test for progesterone as that gives a more reliable idea of whether you've ovulated but again they're only helpful 7 days before your expected period. If blood tests show you aren't ovulating, they should be able to increase your Clomid dose to see whether you ovulate at a higher level - most people are started on 50mg and can usually go up to 150mg.


I just don't want to ruin my chances by making a fuss.

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## Tincancat (Mar 19, 2012)

I work for the NHS and I've taken a number of things to PALS to get sorted..... sometimes it's the only way when you are struggling with communication.
TCCx


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## WatermelonBelly (May 18, 2017)

The communication sounds very poor. The people are there to treat you and it’s part of their job to communicate and explain things to you. You’re not asking the consultant to do circus tricks, you just have very basic expectations of basic communication and shouldn’t lower them. You’re the one going through treatment and having meds so you need to know why. Good luck being a little more asssertive.


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## Ljp64 (Nov 23, 2013)

I used PALS when I had an issue at my NHS hospital and they were fantastic. I'd contact them if you don't hear back from the consultant. I was worried that I'd be treated differently if I contacted them but tbh all it did was improve things and a consultant rang me bloody quickly! 
When I began my initial tests i was diagnosed as unexplained and I asked for clomid.  I was told I'd be better off going straight for IVF. I wasn't told why but I was told they don't use clomid as readily as they used to. I was also told elsewhere that it's possible to shed the lining of your womb without ovulating which is why they do blood tests at a specific time in your cycle. It turned out I had hydrosaplinx anyway so clomid would have been useless for me but as I said they wouldn't give it to me initially anyway. 
Good luck


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## bobo66 (May 1, 2012)

From what you’ve said, my worries are they’re not communicating with you properly as the patient so they’re not getting your informed consent properly for the treatment they’re giving you. And also they don’t seem to be following best practice recommendations for Clomid - it can only be given for a limited time, so not knowing whether it’s leading to ovulation or not isn’t helping - and it could be ruining your chances of Clomid working for you because you might not be on the best dose. I don’t know what your role is in the NHS, but there are policies in place to protect people who point out bad practice, and anyway I’m not sure this would be classed as serious as that so you really should be protected. Sometimes I’ve found I’ve got consistently better treatment after asking questions because they know you’re likely to point out things which aren’t quite right.

You said you were having a bit of a rant here and that’s totally fine! Several of us have suggested you ask them to communicate with you better, but it is up to you and what you feel is best for you.


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## jblox78 (Dec 6, 2011)

Kwasiorkor - sorry to hear you've been having a frustrating experience - unfortunately I found the same when we were with the NHS for our first two cycles and it's really hard to deal with.

On a side note I went to the Fertility Show as a volunteer this weekend and was working on a stand with Marilyn Glenville who is an expert in women's health and fertility. I am a trainee nutritionist in my final year of a 3 year diploma so found it really useful from a professional and personal point of view. Dr Glenville did a talk on natural support for fertility and mentioned a scientific study related to the use of Vitamin C supplementation alongside Clomid - apparently it improves the occurence of ovulation.

https://www.ncbi.nlm.nih.gov/m/pubmed/24011/?i=7&from=vitamin c clomiphene

I've had a bit of a Google and it seems it's quite common knowledge so you might be doing this already but I thought I'd let you know anyway in case you wanted to discuss with your doc.

If you do decide to take Vit C Dr Glenville said to make sure it's something like magnesium ascorbate rather than ascorbic acid as the acidic form can make your cervical mucous a bit too acidic.

Best of luck!

Jen x


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## Kwasiorkor (Nov 4, 2017)

bobo66 said:


> From what you've said, my worries are they're not communicating with you properly as the patient so they're not getting your informed consent properly for the treatment they're giving you. And also they don't seem to be following best practice recommendations for Clomid - it can only be given for a limited time, so not knowing whether it's leading to ovulation or not isn't helping - and it could be ruining your chances of Clomid working for you because you might not be on the best dose. I don't know what your role is in the NHS, but there are policies in place to protect people who point out bad practice, and anyway I'm not sure this would be classed as serious as that so you really should be protected. Sometimes I've found I've got consistently better treatment after asking questions because they know you're likely to point out things which aren't quite right.
> 
> You said you were having a bit of a rant here and that's totally fine! Several of us have suggested you ask them to communicate with you better, but it is up to you and what you feel is best for you.


They told me the clomid was working because I had 4 follicles when I had my day 10 scan after my first cycle. I came away really positive after that but then immediately crestfallen by always getting negative ovulation tests.

I'm due my period tomorrow and hence clomid the day after. If I still don't get any positive ovulation tests then I'll call them. The tablets make me feel like hell on earth and I'm a mess, so if they're not working then I want out

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## bobo66 (May 1, 2012)

That sounds confusing!

If they’re urine ovulation tests, it’s possible you may have ovulated but not quite caught the time with the test.

I’m sorry you’re having such a hard time with Clomid. Definitely check and don’t put up with it if it isn’t helping. I hope they’re helpful.


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## Kwasiorkor (Nov 4, 2017)

bobo66 said:


> That sounds confusing!
> 
> If they're urine ovulation tests, it's possible you may have ovulated but not quite caught the time with the test.
> 
> I'm sorry you're having such a hard time with Clomid. Definitely check and don't put up with it if it isn't helping. I hope they're helpful.


I started taking the clomid at the beginning of my cycle and all was going well..... until I was in a car accident. Long story short, car is write off and I have bruises across my chest and abdomen. I'm feeling decidedly fragile, and lo and behold I get my first ever positive urine ovulation test.

for positive tests and VERY gentle sex lol

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