Tests, tests, tests!!

[CountryCat]

Hi, I am new here. Going through a very tough time at the moment - 42 years old and never been pregnant. Apparently, I have primary unexplained infertility, which is maddening as one cannot even assign a reason (not that a reason changes the situation). I have spent 18 months (and 6 failed rounds of Clomid) going through the system with an NHS hospital and have now been told that they will no longer treat me because of my age. I am not eligible for funded IUI or IVF either. Although I have known that I didn't qualify for some time, it was gut-wrenching to receive the letter that said 'there is nothing more we can do for you.'

If I want any chance of having a child now, IVF is the only option. We can't really afford IVF in this country (UK) so have been left feeling very lost and isolated. My husband has suggested we look into going overseas for IVF, but it is such a big decision we do not want to rush into anything. But on the other hand, I am rapidly running out of time.

Anyhow, excuse the long preamble, but what I wanted to ask was this: one clinic we have spoken to re IVF has said that all of our tests are out of date and that if we wished to proceed, we would have to have ALL the blood work, semen analysis etc done over again. Obviously, we'd have to pay for this. I am probably being very thick, but do I just ring up a local private clinic, tell them all the tests I need done, schedule them and go? Or do I go via my local NHS clinic and explain that I will be paying for the tests, but have them done there? Can you even do that?

Any advice would be very gratefully received! I only found this site 2 days ago, but am so glad I did. This whole, long journey (3 years) has nearly finished me off and I have just started counselling to try and cope with the fact that it may never happen for us. Thank you in advance x

[yllek1982]

Hi!

this group is great for advise and support so you've definitely come to the right place.

In regards to paying for tests etc- I have a lovely nhs doctor who has done some of the tests for me which has meant we didn't have to pay out again. We are on our 4th ivf cycle at the moment and certain blood tests and chalmydia test had run out but she just did them for us and then the clinic could just look them up on their system. I wonder if you have a doctor who maybe sympathetic to your situation and that would help?

What would normally happen in regards to tests in a clinic is that you have an initial meeting where they discuss everything and get you to fill in forms etc and then they tell you what needs paying for and you have the tests etc done there at the clinic-they would normally sort that for you.

This is a random thought but I wonder if you have tried acupuncture? It's something that my clinic had advised I had (not through them there is a local lady to me who is recommended).

Wishing you all the best xxx

[CountryCat]

Thank you so much for your thoughtful response. I hadn't even thought about going to my local GP for advice about testing, but as you say, they may be able to help. The consultant I have been seeing has, to be honest, just been box-ticking and I have never felt confident with him. One waits weeks and weeks to see him and so I probably would try my local clinic first over trying to pick his brains about this.

Thank you too for mentioning acupuncture. I have tried Reiki and massage before - both made little difference to my ability to conceive but were enjoyable anyway. I went to see an acupuncturist in July but he was honest and admitted he wasn't specialised enough to help. He referred me to another practitioner but I had no joy getting an appointment (I live rurally, not a lot of choices re alternative treatments). However, I appreciate your suggestion and am going to look into it more seriously.

This forum has made me feel slightly less alone...wish I had found it years ago! All the best to you xx

[yllek1982 in reply to CountryCat]

I found it particularly tricky finding a doctor to help me for quite a while but feel very lucky that the new doctor my surgery has now is being brilliant. Do always question (I'm sure you do anyway) but I didn't for such a long time and do feel if I had pushed for tests etc earlier on then I wouldn't be in this situation now. (I've had years of bad periods since a teenager and has got steadily worse and wasn't believed when I went to doctors-I'm nearly 35 now).

My acupuncturist specializes in gynecology and has been practicing for many years- I've been seeing her since June/July time and in that time my period has reduced from 3 weeks to 5days (it was always heavy and horrible) and I did have a BFP the last cycle which unfortunately ended in miscarriage but I feel as though it's the closest we've ever got. We've been trying for over 5 years now. Everyone's journey is different though and what would work for one may not work for others but I Just thought I'd give it a go even though I pass out at needles-ha ha!

You are definitely not alone- although I totally get that you feel alone as even as I'm saying this I feel it sometimes too especially when friends and family are having children seemingly very easy around me.

Fingers crossed that you can chat with your gp and get some support from them xxx

[skatty in reply to CountryCat]

You might want to try this list of acupuncturists as they are qualified and experienced in fertility issues. zitawest.com/network/

Out of interest what's your blood stuff like - AMH FSH etc?

Finally I always recommend fertility friends as there are specialized boards for over 40s, over 45s and indivisdual boards for diff countries too. It's diff to here though as you have a lot of info to navigate there. Good luck x

[CountryCat in reply to skatty]

Thanks a lot for the response and the acupuncture recommendations which are so helpful

It is a source of some embarrassment to me that I stumbled quite blindly into treatment last year, believing everything the doctors told me and not (I bitterly regret) asking a million questions. My consultant spoke 'medical-ese' and although I am not stupid, I struggled to get the answers to basic questions from him. I therefore have had to educate myself and am now pretty clued up, but wasn't when all my tests were done 18 months back.

I have never actually seen the results of my blood work. I asked for all of it to be sent to me 2.5 weeks' ago but I am still waiting. I have had an MRI, an ultrasound, several internal examinations, a colposcopy, and an HSG which was perfectly clear. I was put on Clomid 50mg, because even although I do still ovulate on my own, I sometimes skip a month. I have no physical abnormalities apart from a dermoid cyst on my left ovary, which they will not remove due to the issues posed by scar tissue etc. But your very pertinent and reasonable questions, I cannot answer because no health professional has ever even brought these up. I don't want to NHS-bash, but the entire process has been like walking through toffee...slow and difficult.

I will check out Fertility Friends too, thanks for all the useful suggestions.

[City74]

Just wanted to wish you all the best with your treatment. I think Yllek's advice about going to your GP is a good idea - hopefully you will be able to get at least some of your tests done again that way.

I am nearly 42 (in about 2 weeks) and also don't have any children yet. I've been diagnosed with secondary infertility and that's because I've had a miscarriage (just going through another one now so I will have had 2). I was due to start IVF (after absolutely loads of waiting around) last week. I got a positive test instead of AF but I'm now bleeding heavily. I've been on to my clinic this morning begging them to just put me back on the list to get started again in January and am waiting for them to call me back. I think this whole process has taught me to be more patient as there is just so much waiting.

That's a good idea about counselling. I have also started to think that this might not happen for us and wondered what that might mean and how I could accept that. I hope you find it useful (and also of course that you don't have to accept it as you get your bfp).

Do let us know how you get on.

[CountryCat in reply to City74]

City74, thank you for sharing your story. I can't even begin to imagine your heartbreak and am so sorry for what you are going through right now!

I hope that it has a positive outcome, but feel you are immensely brave to be looking ahead with the hope of trying again. Hope is a massively addictive thing, but where would we be without it?

Take good care of yourself. I hope the outcome is different this time. Please also let me know how you are doing.

[City74 in reply to CountryCat]

CountryCat - thank you for your lovely reply. It means a lot. I agree that hope is very addictive but I just want to give myself the best chance so I don't regret not trying everything!

My clinic called me back and said that I could be back on the list for the end of January/February. I have to have one 'proper' period before I start (they said they don't class the miscarriage as a period which I can understand). I'm so pleased I don't have to go back to the doctor to get referred again. I have to go and have a cycle plan meeting in the next month so I'm going to get that booked this morning.

I've been debating about whether I should try again naturally before the next cycle. My DH is adamant that we should but I have surprised myself by perhaps wanting to wait. However I'm sure that in a couple of weeks I will change my mind and just go for it!

How are you today? Do you think you'll go to your GP for some of the tests?

[CountryCat in reply to City74]

City74, that is very good news indeed and what a relief that they will not make you get yet another referral...that is a result. Sometimes just being proactive and making plans/arrangements can make such a difference to one's outlook. It's in the diary so you can mentally prepare for it and there is quite a bit of peace in that.

We have decided to give it one last try (naturally) this month which will take us up to Christmas. If we are unsuccessful again, I will be going to my GP in early January so we can get the batch of tests repeated asap. We are going to use the time to investigate clinics overseas to ensure that we make the right choice for us. We would probably only be able to do 1, maybe 2 IVF cycles, so need to try (in as much as we can control these things) to give ourselves the very best chance.

I am doing a bit better today thank you for asking. My husband sat his parents down (sans me, I was too fragile) to tell them that we now have only IVF open to us to conceive and I feel a bit better that someone else I trust, knows. I have no family in this country and my mother is deceased, so practically no one knows how hard things have been at times. This forum with its kind souls has helped no end in just a few days, so I am grateful for that.

Keep focusing on the positive fact that you are doing all you can xx

[City74 in reply to CountryCat]

Yes I have found this forum really helpful and supportive and glad you have found that too. You're right that planning appointments and things does help a bit. I'm just thinking that December will go really quickly as we're busy, we have our planning apt on 29th December and period should come around then too and then only a month later we can start so not too long!

It must be so hard with no family in this country - you are doing well and I hope that you can get support from your husband's family too. We haven't told too many people - just my parents and my cousin and a couple of friends - but I am grateful that some people know as they will be supportive.

That sounds like a good plan to try again naturally this month and then to go to the GP in January. I'll keep my fingers crossed that you are successful this month and don't need to go to the GP at all (only to tell them that you are pregnant!).

Take care of yourself and hope you have a restful weekend xx

[yllek1982 in reply to City74]

so sorry to hear what you are going through having been through it myself I know the heartbreak. Sending very best wishes xxxx

[ditsy999]

Hi,

If you get a list of all the test you require and take them to your GP. Your GP will be able to do some of these tests for you and for some you might get referred to the hospital for. You might have to pay for some x

[CountryCat in reply to ditsy999]

Great, thanks so much for your reply. I feel I have a lot more direction now thanks to all the sensible advice I have received x

[Mrsjj]

You story strike such a cord with me as we are so similar in situation. Had all the tests and nothing can be found as a problem. Tried holistic approach too to at least help me relax on this journey. In my four years ttc I don't feel I've barely seen anyone who cares about my situation. I had a glimmer of hope when I mentioned I had bupa insurance but that doesn't cover fertility. My husband had a daughter who was 16 when I met him (so hardly a child) and the NHS just wrote me off for help. I've lost myself many times on this journey and found myself again. I've now decided to get my NHS records and get a second opinion privately. I'll have to pay for all the re- testing because I just can't bare all the wishing a waiting I don't feel the NHS care about where we are at.

Don't give up hope we just have to find a new way forward xx

[CountryCat in reply to Mrsjj]

Mrsjj, it was really good to hear from you. It's awful isn't it? I, like you I am sure, am not looking for pity or sympathy, just someone who will not treat me as either a hopeless case or a walking wallet! I have been given conflicting advice by medical professionals, had my medical files lost, been confused with another patient and just treated my an air of general indifference. I cannot tar them all with the same brush...the countless nurses, phlebotimists and radiographers I have encountered couldn't have been more wonderful , but the actual consultants have been evasive and absent. I know I am one of thousands and I certainly don't warrant any special attention, but it would be nice to at least feel that the professionals we have been forced to turn to are on our side.

I wish you all the best with your decision. No one can tell you when to give up and put your most ardent wish aside and I am with you, I have not reached that point quite yet. Investigating the private clinic option is worth it, because they tend to move swiftly and you could end up with the answers you need within a few short weeks. Or at least maybe some more options. Options are always good.

Hang in there and I hope you find the compassionate guidance/advice that you have not found so far. xx

[CountryCat]

Nicknick, thanks for your post. The Polish and Czech clinics seem to be the most proactive and I have been fairly impressed with the information we have received so far.

You are absolutely right, we could get all of our bloodwork and other tests redone in whichever country we end up deciding on, but we thought it might be easier to do them here. If I don't have any joy in January getting referrals for tests locally, I would definitely consider it.

Best wishes to you!