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concern about scans (or lack of) while on Clomid

(23 Posts)
beanieb Wed 07-Oct-09 10:01:11

Hi

I am on my 4th lot of Clomid at 50mg.
when I had the first round I booked myself in for a scan on day 10 of my cycle but since then I have not been scanned at all apart from when I miscarried in June.

I called the IVF Unit (IVF Wales) yesterday to ask about being scanned and they said if I wanted a scan I would have to fund it privately!

I am a bit shock by this as I was under the impression that I should expect to be scanned to check for Ovarian cysts on a regular basis. I have been prescribed the clomid on the NHS.

Does anyone know (Attila?) if they are following procedure incorrectly or is it a discretionary thing?

OOOOOOOOOOOpsacoconut Wed 07-Oct-09 10:04:02

I think it discretionary as I had 6 cycles and they only did day 21 bloods. I was never scanned until I was pregnant.

TattyCatty Wed 07-Oct-09 10:08:01

I had around 6 cycles on Clomid on the NHS and wasn't scanned at all. I only got a scan on my last cycle, following my second Ovarian Drilling operation, which I paid for privately as my Consultant was willing to give me an HcG trigger shot if I had dominant follicles.

It was never mentioned to me that they would need to check for Ovarian cysts. I therefore think that it is a discretionary thing. Are you having Day 21 blood tests to ascertain whether or not you are ovulating?

beanieb Wed 07-Oct-09 10:12:02

No - I've not had a single 21 day test since I started. I fell pregnant (then miscarried) on the first round so they scanned me then.

I am already ovulating according to previous tests - they gave me the clomid as a boost.

Should I be asking for 21 day tests? Maybe I should go to my GP rather than back to IVF Wales every month?

TattyCatty Wed 07-Oct-09 10:18:15

The day 21 test is to look at your progesterone levels, simply to determine if you are ovulating or not. Obviously it does assume that you have a regular 28 day cycle, so may not be totally accurate. If ovulation is not thought to be a problem, then I'm not sure why they are prescribing Clomid (other than the fact that the NHS think that you have to try it regardless of the infertility issue - sorry, bitter experience!). Your GP could certainly do the tests on your behalf though.

Have you had any further tests to determine what the problem might be?

beanieb Wed 07-Oct-09 10:23:02

Hiya

sorry I should have put more info in the OP.

Have been trying 2 years. Have had 21 day and 3 day tests, HSG, AMH test, various scans and my DH has had a sperm test. The diagnosis was 'unexplained infertility'. Have managed to get pregnant once (on first round of clomid) but miscarried.

I am 39 and a half.

They gave me the choice of Clomid (as a boost) or straight on to IUI and IVF which I would have to pay for so we took the Clomid option first.

beanieb Wed 07-Oct-09 10:25:28

When I said 'I have not had a single 21 day test since I started' I meant since I started the Clomid.

TattyCatty Wed 07-Oct-09 10:31:19

I'm sorry to hear about the miscarriage. Given the length of time, I would be pushing for a scan on your next cycle so that they can see exactly how well you are responding to the Clomid. I have PCOS and we eventually determined after 2 years that I am Clomid resistant (even after 2 Ovarian Drilling operations), so had to move onto IUI with Menopur. Menopur is so much stronger than Clomid (injectections rather than tablets), and I responded well. DD is the result of my 2nd IUI cycle .

Go back to your clinic and start asking lots of questions about what they plan to do next. I found that I had to push my NHS consultant to get anything done (I found that floods of tears and refusing to leave the room until I had a date for an operation worked quite well wink. Like yourselves, we did end up having to go private for the IUI, but it is much, much cheaper than IVF.

mndeno Wed 07-Oct-09 11:04:50

Hi

I asked my consultant the same question yesterday as I am on 3rd month of Clomid. He said that scans were a waste of my time and their resources! He did say that I should have been having 21 day blood test though which had not been mentioned before - I saw it on here hence the reason for the call to him.

What I have discovered is that you really have to try to find out as much as possible for yourself and that person that you really want to come and take you by the hand saying "don't worry, I'll look after you!" unfortunately doesn't exist (unless you are really lucky).

Ask, ask and ask again. I have been forgotten about and filed away more time than I can remember so you really have to remind them you are there and in need of answers.

beanieb - you could almost be me with your history but I am 38 and a half! I will be asking for 19 and 21 day test due to stupid cycle but cons said I have to go to GP surgery.

TattyCatty - tears really do work wonders though its quite hard to stop once you start - my cons didn't know what to do with me so refered me to IVF on NHS - got refused as already have 7 year old and no medical reasons for infertility.

Wishing everyone good luck

x

beanieb Wed 07-Oct-09 11:10:17

Thanks for the responses. I am surprised to hear I should be having the blood tests but will call my surgery today.

I seem to be unable to cry when I am at the unit, even when they told me I was going to miscarry I didn't cry - I save it until I get home where I do A LOT of crying.

I always thought I should keep it together at the clinic but maybe I am just not being pushy enough. The fact that they are talking about funding my own scans makes me worry. Anyway I am saving up for IUI so will probably do that next. Thanks again for the responses.

mndeno Wed 07-Oct-09 11:23:35

I had about 4 appointments before I realised that the crying might work. I was always so upbeat and together when I went for them and was cross with myself for crying at times when no one saw me so didn't know how much I was affected. I had cried spontaneously when I had to stay on the ward in hosp after my 3rd miscarriage and I'm sure that was why they gave me a room of my own with ensuite bathroom and TV. As much as I don't like to cry in front of people, I had to try and make myself feel as bad as I could while waiting for appt. I thought that they had forgotten me and started to feel sorry for myself and was actually crying before I got into his office.

I was told that if the clomid didn't work then that was that apart from private IVF (which is def not an option for us without a lottery win).

Don't really know anything about IUI what is it?

AttilaTheMeerkat Wed 07-Oct-09 14:50:45

beanieb,

Have just seen your posting.

You should be scanned on a regular basis if you are on clomid as its quite powerful stuff. They need to know also whether it s working or not; no monitoring of any sort is bad practice. They don;t know if it is working properly for you.

Also clomid should not be prescribed unless there is definitive proof that ovulation is problematic. It is sometimes given when it is not needed because clomid has been so successfully used in women over the years. It can cause problems in normally ovulating women. Clomid's main job is to make the ovaries work harder; this is its main function.

"Unexplained infertility" is infact 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 patients when both parties have not been adequately investigated. I can give you a list of tests that are commonly missed; these if done can sometimes provide an answer as to why the subfertility is occuring.

beanieb Wed 07-Oct-09 15:51:59

Yes please to the list Attila. Should I be making a fuss at IVF Wales then? About the scans I mean.

Well, about everything really. I was only offered a choice of Clomid (free) or straight onto IUI (self funded). so are there guidelines I can maybe show them RE the Clomid?

beanieb Wed 07-Oct-09 16:12:32

Also can you provide me with any proper links to anything which shows the lack of scans/tests is bad practice as I am not sure 'someone on the internet told me' would go down well. Ditto the unexplained infertility diagnosis thing.

thank you everso much.

AttilaTheMeerkat Wed 07-Oct-09 16:31:25

Would suggest you look at the NICE guidelines on fertility treatment.

Also read "Infertility" written by Prof Robert Winston. He writes further about both clomid usage and "unexplained" infertility.

I would ask them how they know the clomid is actually doing its job if you are not being monitored regularly by ultrasound scans and or blood tests.

AttilaTheMeerkat Wed 07-Oct-09 16:32:38

Would suggest you look at the NICE guidelines on fertility treatment.

www.nice.org.uk/CG011

AttilaTheMeerkat Wed 07-Oct-09 16:34:21

www.netdoctor.co.uk/medicines/100000536.html

AttilaTheMeerkat Wed 07-Oct-09 16:36:50

The most common tests that tend to be omitted are:-

Adequate x-rays of the uterus which may show abnormalities not otherwise seen at laparoscopy.

Hysteroscopy - telescope inspection of the inside of the uterus which may occasionally show abnormalities not seen otherwise

Repeated sperm counts over several weeks and months to make sure there is no subtle abnormality

Testing the sperm in special media such as swim up tests and velocity testing. However, when they are done, they often uncover a hidden cause for the suppposed unexplained problem

Thorough hormone tests to detect abnormalities of male hormone or early falls in progesterone

Scanning of the ovaries to see if follicles really are developing and there are no sign of polycystic ovaries.

Any test result from beyond the past 6 months should be discounted.

beanieb Wed 07-Oct-09 16:56:59

thank you. As far as I know IVF Wales does not come anywhere near the NICE guidelines.

I am wondering if I should just go private and at least get all these tests done. i don't know where to start though, seems there are very few places in Wales which do infertility tests.

PicknMix Wed 07-Oct-09 17:01:34

I'm watching this thread with interest as I have been diagnosed with "unexplained infertility" after 3 years of ttc #1 with an underlying "possible PCOS" (not definite PCOS you understand, just possible) and have been put on clomid, unmonitored.

When I asked whether I needed monitoring the answer was "what for".

Hmmmmm

And then, after my miscarriage was confirmed (yesterday sad) the fertility nurse commented "at least we know the clomid is working".

Shocking but what can you do?

beanieb Wed 07-Oct-09 17:14:10

Am so sorry to hear about your miscarriage PicnMix sad

I hate that 'at least we know the clomid is working' it's not helpful at all and not accurate anyway specially if you already ovulate on your own. I have no idea if it was the clomid that got me pregnant it may have just been that I got pregnant!

I am getting so old that I am desparately trying to get my brain to accept that I will never have any children but it's so hard to do when I am still getting periods each month. How can a person stop that hoping every month even when 'having a break'? I't impossible.

I just wish I could forget wanting children completely, I wish I had never even started trying because now it is so much harder to give up. I don't even know why I want them anymore to be honest. Wanting them has done nothing but give me the worst two years of my lilfe and now the clomid seems to be effecting me too so I am constantly unhappy or crying.

mndeno Wed 07-Oct-09 17:16:57

Hi PicknMix

So sorry to hear about your miscarriage. Hope you are ok.

Fairygodmother1 Sun 25-Oct-09 21:10:10

Hi all,

I'm waiting for af after cycle 3 of clomid. I had 2 lots of day 21 blood tests. I only found out the results after I chased them. The first month said no ov but 2nd month said I ov.

No more bloods planned & when I asked for day 21 scans I was told that they don't do it.

The only person to confirm my pcos was the ultrasound lady said I had it!

Funny how the NHS can be so inconsistant!!!!

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