# Please help Ruth. I don't know who to talk to.



## LilyAnne (Oct 18, 2003)

I have now had 7 doses of clomid: 2 at 50mg no ovulation, then 1 at 100mg with ovulation, followed by another 100mg without ov. Then lost 2 stone and ovulated on 50mg, then didn't again on 50mg, and haven't this month again on 100mg despite my BMI still being 23, and exercising and being on 2000mg metformin.

I have no idea who to talk to as my Gp doesn't like to interfere with my consultant's policy of the need to have at least 6 ovulatory cycles before being considered for anything else. My fertility nurses are only available via answer machine, and although they do telephone back within a few days, continue to tell me I have to have 6 ovulatory cycles before seeing the consultant who will probably only tell me to continue with clomid until I have 12 ovulatory cycles.

CAN YOU TELL ME IF THE RELATIONSHIP BETWEEN CLOMID AND LONG TERM EFFECTS SUCH AS AFFECTING WOMB LINING AND OVARIAN CANCER CAN STILL OCCUR IF I HAVEN'T OVULATED. My clinic have the opinion that if I haven't ovulated then my body hasn't reacted to the drug and so it can't have done any damage either. I'm getting really scared though as despite not ovulating I am experiencing changes of twinges, light menstrual flow that only lasts 3 days now, deep sadness that I've never felt before but can't seem to help and very hot flushes that feel like I have the bars of an electric fire right next to my face.

Sorry if I've written too much for you to read Ruth. Thanks if you're still hanging on .... Please help. I don't know who to talk to. I've tried going for egg-share but wasn't accepted and NHS IVF hasn't even started here yet, let alone being on the list.

Love Rowena.


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## lilly2k3 (Sep 20, 2003)

Hello Rowena,
I am not a nurse but just wanted to ask if there is not another clinic which you could try as this one dose not seem to be supporting you or listening to your concerns.
Also, is there no counseling available from your clinic?
This would not help with medical side but could help with the sadness you are feeling.
I hope you get some answers soon and begin to feel a bit better


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## LilyAnne (Oct 18, 2003)

Thanks Lilly,
This is my the 2nd clinic I've tried. The first was even worse, with no emotional support whatsoever and did not have the facilities to try anything other than clomid: not even injections because of lack of scanning facilities. I was told bluntly by the consultant there that if I could afford IVF privately he suggested I do it unless I wanted to wait a long time to see if clomid eventually worked, which he doubted it would. At this 2nd clinic the support is better (I am already seeing a counsellor to cope with my feelings), but I am worried about the treatment I am having, but as IVF is not yet available on the NHS at either places, they are being strict with their policy of 6 ovulations before seeing the consultant. In over three years, I've only ovulated twice and that was with clomid. I'm really worried and don't know who to turn to next.


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## jess p (Sep 25, 2004)

Rowena, Where on earth do you live?

Your clinics sound very unhelpful. I've been pretty lucky at Ipswich but they don't have much sense of urgency! Also, they don't volunteer any info I have to ask questions all the time & until I found this site I didn't know what to ask!

Check out this nhs site which seems to be guidance for nhs workers:
http://www.prodigy.nhs.uk/guidance.asp?gt=Infertility 
I found it useful & tells you about clomid. Definitely think you need to question being given more clomid.
I have had all the side affects - including one migraine where I was paralysed all down one side! Very scary, only ever had one like that before!

Also, can't remember your age, but if you're over 35, i would be pushing for iui or private ivf.

Hope this is of some help.

Jess x


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## lilly2k3 (Sep 20, 2003)

Rowena,
That sounds so silly making you go that long.
I would try and look in to changing clinics again if that is possible. It may be there policy but it sounds no good for you at all.
If I were you I would look on the hfea web site for information on local clinics, the hfea's own guidelines and maybe you would also find information on who you can talk to for information.
I also have an ov problem, in one whole year or scans i only grew follies twice and once they did not ovulate.
My clinic have moved me on in treatment so i don't see why you could not find a clinic which will be better for your needs.
Best of luck in whatever you do, lilly xx


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## LilyAnne (Oct 18, 2003)

Dear Jess,
Thanks for replying. Don't worry I am big on asking questions too, but keep being told I have to be patient and that DH's sperm haven't been given a fair opportunity to see if they can do the necessary. Fair enough, but in 3 years of trying and 2 years of medical supervison, I've only ovulated twice. I've checked out the website you suggested and have written to the CSM to ask about clomifene and whether it's ok to take more than 12 times if you haven't ovulated whilst taking it. I'm not happy to, as depite not ovulating I still get the hot flushes, so something must be happening. I'm 30 by the way, but feel like I'm wearing out from all this getting nowhere.

Lilly, Sorry to hear you've been having ov trouble too. You said you've been moved on in treatment but haven't said in what way.

Love Rowena.


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## daisyg (Jan 7, 2004)

Hi Rowena,

I think you need to get a second opinion and change clinics if you can. You don't say how old you are or where you live? Have you and DH had a full fertility work-up to identify causes for not getting pg? I am so sorry you are having to go through this.

I understand that taking clomid for more than 3-6 months can be counter-productive for conception as it can dry up cervical mucous and thin the womb lining. You need some help, and you need the clinic to monitor you with regular scans and blood tests to see what is happening in you cycle. I don't believe you should be left on Clomid like this at at all. Here is a link to info. on clomid

http://www.inciid.org/article.php?cat=infertility101&id=26

I know how hard it is when people don't seem to be listening to you or helping you. Can you afford a private consultation? Perhaps that might give you some more information in order to proceed.

Please ask if you need any help.

Daisy
xx


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## jess p (Sep 25, 2004)

Hi, Rowena,

I'm not a nurse but from reading tons of these posts on various threads, your symptoms sound very similar to PCOS - you mentioned that you'd lost a lot of weight & being over your desired weight often goes hand in hand with PCOS.  Have you had this checked out?  I think it can be done via a blood test but not certain - there are other girls on this site much more qualified in the subject than myself!

Also, have you tried angus castus (think that's how you spell it!) lots of women on ff who don't ovualte swear by it, some claim to have got pregnant within weeks of trying - others seem to think it does more harm than good - also you can't take it with clomid.

Anyway, good luck - you'll get there in the end!!

Best wishes, Jess x


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## LilyAnne (Oct 18, 2003)

Dear Daisy and Jess,
Thanks for caring. Yes, I do have PCOS. We have had lots of investigations but are now at a standstill. The situation is I'm not ovulating. I have PCOS but my BMI remains at 23. My DH has had 6 sperm tests in 2 years at the various places we've been to: all of which have been less than ideal (eg, sperm average of all tests = 17 per ml, motility ranges from 20-61%). I know what our problems are but don't know how to het the right treatment. The clinic I'm at have been very good at trying to sort us out but haven't got IVF available to offer as yet. We have seen a private consultant, who said that it could be possible for DH's sperm to fertilise an egg, but not if I'm not producing any! They recommended IVF. We felt that we could try a bit longer and give DH's sperm a chance if we could get me ovulating. But that doesn't seem to be happening and I'm scared and extremely worn out from taking this clomifene and not getting anywhere. 

Please Ruth, I would appreciate your advice. Does clomifene still affect the body if it hasn't caused ovulation? My clinic have told me it doesn't and it doesn't matter how many times I take it, I just have to have 6 ovulations before I see the consultant. I've had 2 so far out of 7 clomids. I'm supposed to be starting 150mg on try no.8, but I'm scared as to what effect this is having on my womb lining etc.

Apart from paying for IVF, I don't know what else to do. I don't know who to turn to as we really can't afford IVF. I was told for maximum success that we would need IVF and ICSI and preferably blastocyst transfer. That with drugs will amount to nearly £5000. But do we really need it? I keep getting different opinions and feel like I'm losing control of my goal.

Please help me in the direction we should go Ruth.


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## MichelleK (Sep 12, 2003)

Hi Rowena

I was really upset by your email - your clinic sound like they are fobbing you off - both you and your partner have problems and it sounds like you might need to go down the IVF route. If so the following might be useful - Primary Care Trusts need to be able to provide NHS clients with one round of IVF treatment under the new NICE guidelines and it is not good enough for them to state that they are not providing it yet - you can certainly take this up with them.  I would definitely give your Primary Care Trust a call to find out where they are with the NICE fertility guidelines.  I have loads of information on this so im me if you want - if you tell me where you live I can probably find out who your PCT is.  Sometimes you need to make a fuss about funding - your GP should also know who you need to speak to!  You should be entitled to one free go of NHS IVF from April this year. There maybe a waiting list but at least you can get on it now - they may also have some social criteria that you need to get through but again they should tell you what this is.  I hope that you get some answers but if you need any more advice just give us a shout.  I also have a flow chart from NICE which Doctors use telling them what they should be doing which I can send you or if you phone NICE on 0870 1555455 they will send you the guideline on what you are entitled to on the NHS - the guideline is called assessment and treatment for people with fertility problems, understanding NICE guidance - information for people with fertility problems, their partners and the public - their booklet reference NO466.

Hope this is not too confusing!
Michelle


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## LilyAnne (Oct 18, 2003)

Dear Michelle,
Sorry for upsetting you! and congratulations on your surprise pregnancy.

I have sent you a personal message. Thanks for helping.

I've just heard that IVF may be available in this area, but need the consultant to recommend I need it and if the 150mg clomifene doesn't work, then it's a trial of 1 year's injections (that will be 4.5 yrs ttc). I'm still really worried as we don't even know if DH's sperm will perform right on the necessary day - his results have been so amazingly varied. Also, with PCOS and increased risk of OHSS I'm wondering whether a year's injections whilst we wait and see how DH's sperm do are the right thing to be messing with.

I'm confused. Looking forward to hearing from you and anyone that might be having such a difficult time getting the treatment that's right for them. I'm beginning to feel like a failure, but I feel like I'm speaking to as many people as possible about what's going on. The consultant I see for other things isn't impressed with the fertility care I'm getting, and my Gp asked ME last week what my clinic's policy currently was on IVF as she's not overly happy I keep taking the clomifene either, but doesn't seem to feel she can interfere with the consultant's protocol.

Hope I'm getting somewhere. This is hard. I feel like it's a test for survival of the fittest. Wonder if I'll ever pass my genes on?


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