Infertility help

[AniSL]

Hi All

I hope there may be some lovely people on here that can help me. My DH and I have been TTC for about 3 years, we decided to go to our GPs for help. Our GPs (unfortunately we have separate ones) clearly were not comfortable talking to us about it. My DH GP had no idea what to do, my GP referred me for a 21 day blood test. I advised my DH GP about the referral process (my GP told me the where to refer my DH to), his GP referred him for SA, it came back with no sperm present and he was asked for another sample. During this time, my 21 day test came back that I was not ovulating, my GP prescribed Clomid and advised that he would make a referral to Wexham Park Hospital infertility team. My DH was then referred to a urologist at WPH where we were told azoospermia, he advised us that IVF with ICSI would have to be applied for and securing funding would be difficult but we would be good candidates. My referral was never done to a gynaecologist, I had to chase this up again. I initially received a choose and book for Hillingdon, but at the insistence of my DH urologist, I changed it to WPH.
My first appt was awful, the gynaecologist did not treat us with any dignity or respect, she asked why we hadn't got the basic tests done, I asked her 'how were we to now what tests needed to be done before the appt?', she insulted my husband then laughed at our names, then further insulted me by not believing me when I told her my BMI, she also questioned our enthusiasm. She even berated my DH urologist to undertake 'such expensive tests' for him. She continued to then tell us that because of my age - I just turned 36 three weeks ago, there was no way we could get funded for IVF/ICSI and she would consider us at her private clinic.

We left in tears, such horrific news delivered to us in such a nonchalant stoic manner. She has ordered me to undertake the FSH/LH blood test which I have done and an abdominal scan and a follow up in 3 months.

Please can anyone tell me if I can change my gynaecologist or be referred to a different hospital? What is the process of IVF/ICSI - do they undertake these at the hospital or does the NHS provider refer to a specialist clinic where it will take place?

Thanks in advance

AS-L

That is horrific. I am so sorry you have gone through this. What an arse!!!! I would probably leave it and write a complaint when you feel able/ have seen someone else.

The criteria for IVF varies across the country and is a total post code lottery. It depends on your CCG's specific criteria available here:

www.fertilityfairness.co.uk/nhs-fertility-services/ivf-provision-in-england/

I am trying not to speak for everyone here, but it may be the case that you have to become your own advocate when you are at your most vulnerable. It's not fair. The system is crap and there are a lot of insensitive medical professionals out there.

There are specialist infertility clinics within hospitals that the NHS uses. I would go back to your GP (both of you can go together) and get a referral right to the fertility clinic as they can address you as a couple instead of individuals.

Thanks physicskate

This whole process has been so draining. I lost over 10kg and still counting to prepare myself, spent money of pre-conception vitamins for both me and hubby (I'm sure you all know how expensive they are), changed my whole diet whereby I am not consuming any processed food, exercising, my DH has quit smoking. Neither of us have children and I have never been on the pill or any other medication.

I am so lost about the process. They don't ever tell you what the exact process is. I was under the impression that we both needed to be referred to the fertility clinic which involved me seeing a gynaecologist and my DH seeing a urologist. My first appt letter said that I had to bring my DH which I did.

I know that the Thames Valley CCG says women must have been referred before they turn 35, pretty much throws me out of the picture. But I also read that you can apply outside of the criteria but will need the support of the fertility specialist - which is my gynaecologist.

I wouldnt say the gynaecology referral is the same because they look at you, not you AND dh. Go back to your gp asking for fertility, not gynae.

Once that happens it seems different things can happen and there doesn't seem to be a clear path as it depends what's wrong. There may be options.

There are many other far more knowledgable women round here who will hopefully come along. I'm basically a newbie at 17 months ttc. I've just started on the referral train after having to self refer. My gp wouldn't run any tests and told me to have some more miscarriages (I had one chemical pregnancy after ttc 11 months and I suspect I had one after 4 months ttc).

I'm still learning to become my own advocate... my thread is called timelines and you can see loads of other info on these boards. Woulda thrown myself off a cliff long ago if it weren't for the wonderful info and help on these boards...

Thanks Psychickate

I will take a look at your thread. In terms of a direct referral, would it be my DH GP or mine?

I can't believe a medical professional could say that! How moronic and insensitive can someone be.
I hope you get some good news soon

AS-L

Hi. So sorry you were treated that way. It's awful enough going through infertility without having medical professionals act like that.

Every ccg is different but for me, our gp referred us to gynae who have 'fertility' clinics. At that appointment they reviewed my 2 day 21 blood tests and my dh's 2 SA. They then ordered a scan to check no obvious issues with my womb/ovaries and referred us to the assisted conception unit, with the fertility specialists. So gynae were the 'gatekeepers' as it were to the fertility specialists. I would ring gynae and make a complaint about the doctor you saw and get a 2nd opinion.

If your ccg require you to be referred prior to 35, that seems really unfair. You might be able to argue that you are only 36 and with your dh having azoospermia you have 0 chance of getting pregnant naturally.

Until that is sorted it doesn't matter that you don't ovulate. I think with azoospermia the urologist will need to determine the cause because sometimes it can be fixed. If it can be fixed then you could go on clomid to ovulate and then you might be able to avoid ivf. If the azoospermia can't be sorted they would likely need to do a surgical procedure to remove sperm and then do IVF/ICSI. My dh had low sperm count and once they saw that they weren't bothered about me having an hycosy (checks tubes) bc it was irrelevant with IVF. They referred us straight to IVF due to the low sperm count.

Hope that wasn't too confusing!

Hey Anisl.
If I was you I would go back to my GP and ask to be refered to another hospitals/clinic. It will be your GP not your hubby. Hope you get sorted xxx

Thanks bluebird and friends123

Bluebird - no the information was not confusing although the whole process is. So from what I gather, my husbands urologist needs to refer to IVF based on his azoospermia. At this point it's taken out of the hands of my gynaecologist?

The fertility clinic in WPH is very very confusing. Pathways are not clear, GPs don't know what they are doing either

Hi AniSl. I am so sorry to hear your story. I agree with the comments until the azoospermia cause is clarified by the fertility clinic you won't have a clear idea of the next steps. Unfortunately, it is a growing problem (ow.ly/uEwX30e6CMD).

There are possible solutions that could help. While you are waiting for an appropriate NHS referral, I could suggest looking at removing endocrine disruptors; the stuff that messes with your hormones, sperm production and fertility (ow.ly/kPmp30e9ERK).

Would you like me to post some tips in this thread?

Thank you FamilyCoach.

Any advice and help would be wonderful. I am quite careful what I consume or put on my body, I mostly eat fresh organic fruit and vegetables, my products are SLS/phthalate/mineral oil/paraben free. I even bought a water purifier from black and blaum to make sure the water I consume is the best.
Hubby is not as in board as I am, this is because his job is 12 hour shifts and you can only eat in their cafeterias which don't provide the best nutrtion. He has however quit smoking and drinking and is consumed ubiquitol, fertilaid and Shilajeet daily.

Any advice would be most helpful

A

Hi

We have a diagnosis of azoospermia too. We were referred to a fertility clinic, via NHS, had the surgical sperm retrieval. We had sperm so went on with an IVF cycle. It wasn't successful, so we looked at self-funding another two rounds. Just before we were due to self-fund another round, we had a bit of an emotional breakdown and decided we needed more answers about azoospermia. We did some research and found a great urologist.

The suspected diagnosis is now that one teste is obstructive and the other is non-obstructive.

My husband is now on a hormone treatment for the non-obstructive teste with a view to try a surgical reconstruction for the obstructive side.

Seeing a knowledgeable urologist has worked wonders for my husband's mindset.

There is a great male factor fertility group available on Facebook, just for men, which is supportive and great for further information.

I'd be happy to try and answer any questions I can too. Wishing you all the best.

Thanks bagely

Waiting for results of his ultrasound then will know what's going on

So I had my first infertility acupuncture today in a clinic in Windsor. Lovely clinic and lovely knowledgable practitioner too. My consultation was really thorough and I told her about my fertility consultant. She told me that she has heard many negative things about her over the years, steadily more and more complaints. She also asked about my tests that I have had done and advised me that my consultant had told me to have them done at the wrong time. Will be requesting my GP to redo the tests. Fantastic session and will be having a follow up in two weeks. Fertility massage in 5 weeks

we also had an utterly horrible experience on the NHS. Decided to go private. At least the clinic has excellent success rates (no comparison with the local NHS offer) and they are helpful and professional. Also by the sound he of it, you might struggle if you're over the cut off age so you could end up wasting a lot of time trying to get treated on the NHS and might not be eligible anyway.

Thank u JoJo, ideally we would love to go private but we don't have the funds at the moment. We will have to save for it!
I am doing everything possible to get my body and DH ready for whatever path we find ourselves on.

So I had my US abdomen scan, the consultant told me that the right ovary looked normal, the left looked slightly big. Both had follicles and the uterine lining was 5.5 - apparently the right thickness for the day in my cycle. I have also had blood test results back FSH 4.5 and FAI 5. All I was told that the FSH reading was normal but FAI is too high. Does anyone have a clue what that means

Just did a quick google. Above 5 could be an indication of PCOS. But your ovaries didn't have a large number of cysts?

www.gpnotebook.co.uk/simplepage.cfm?ID=x20110323210745766773

The lady who did the scan saw no cysts, she said it was a slightly different/larger shape but didn't say much more other than in some women it's normal and in others it indicates PCOS.