Progesterone levels concern after 2 failed ET’s – seeking advice

[ZG888]

Hi, so nice to find somewhere to speak to fellow women going through something similar!

Background: I did my first egg collection in September, was initially disappointed to only get 4 eggs but we got 2 embryo’s. We did a fresh transfer and I took 3 x Utrogestan pessaries daily. My period came within a week of transfer. I just did the FET with the remaining embryo and this time took 3 x Progynova daily from day 3 of my cycle, adding in 2 x Cyclogest pessaries from day 17. I had the FET on day 22 of my cycle but started spotting from 4 days post transfer and had it confirmed it hadn’t worked via a negative HCG blood test yesterday.

I already had a short luteal phase – about 8 days – and will spot for at least a few days before my full flow comes. I have told my clinic this numerous times – an NHS clinic – but they don’t seem to think that’s a problem. They even put me through 3 cycles of unmedicated IUI before doing IVF, which I realise now was such a waste of time and NHS funding! They have never once tested my progesterone levels prior to embryo transfer or during the 2WW. They have also told me inflammation from my endometriosis and interstitial cystitis will not affect implantation, which really worries me they do not know what they are talking about.

We can still have 2 more NHS funded cycles, which I know we are very fortunate to get, but I can’t help feel very frustrated with them and think we might be best to go private to get results. I’ve asked for one more doctor’s appointment at the NHS clinic to see if they will do more with regards to my progesterone levels. I have asked previously if I can purchase Lubion privately and if they’ll help me manage my progesterone levels but they refused and advised me not to buy Lubion.

Has anyone else with a short luteal phase or a problem with low progesterone found something which worked? Advice will be very welcome! I cannot have another transfer till I find something which works as and can actually give my embryo’s a fighting chance.

Thanks

[Lauren80]

Hi,

So sorry to hear of your failed transfers and your frustration with the NhS. I am currently with the NHS and have had 4 failed transfers, I do believe they don’t really test for anything l, I almost feel like they just keep transferring embryos until we have had our funded rounds.

I also started bleeding early on my fresh transfer but that apparently is a lot more common. Have you considered seeing a private consultant and getting a progesterone blood test through them but still using NHS? I’ve been seeing a private consultant in between my transfers, just to try and get some more answers. Mine does do a progesterone test so I imagine most will.

Good luck 🤞 xx

[ZG888 in reply to Lauren80]

Hi Lauren80, thanks for replying

I agree, they do seem to want to keep following their own procedures until you have exhausted your funded cycles. Genuinely cannot understand this attitude as surely it would cost the NHS less to do fewer egg collections!

I was more worried bleeding 4 days post frozen transfer as I was told the HRT would prevent me bleeding early. According to the clinic this is very rare, which I find hard to believe and why I joined this network to try and see if other women have had a similar problem. I think I may need to start seeing a private consultant concurrently with NHS treatment, especially if I need a prescription for Lubion. Do you mind sharing what your private consultant has advised with regards to getting higher progeterone levels?

Best of luck to you too 🤞 x

[Lauren80 in reply to ZG888]

I say this to my husband all the time, if they did things a little better I do believe it would save them a lot more money.

So I didn’t bleed early on my other transfers so I haven’t actually had my progesterone tested with him, however I’ve always considered it so asked him about it and he said he could do it and the cost. I have seen him for some tubal issues the NhS thought I had but turned out it wasn’t. We also after our 4th failed transfer got some blood tests to look at natural killer cells and coagulation. It is quite nice to have it available along the NHS, all be it very expensive each time I see him 😅, but if it helps brings us a miracle baby it will very much be worth it.

Have you tried fertility forums to see if anyone is selling lubion? I’m Lucky in that respect, my clinic will give me lubion if I want it. So I’ve tried just lubion x 3 a day, just pessaries x 3 a day and twice now I’ve done a mix so one lubion and 2x pessaries which I prefer. Hope this helps

Xx

[ZG888 in reply to Lauren80]

If the NHS continue to refuse me Lubion then I will definitely buy it privately. A lot of women on here have said one lubion injection a day plus 2 or 3 x pessaries has worked for them so would like to try that, plus do progesterone testing so I can increase the dosage if required. I've always thought there was something wrong with the balance of my hormones as have always had PMDD, but no doctor has ever taken me seriously if I mention that!

It's been good to find someone who is seeing a private consultant to compliment their NHS funded treatment. It's a shame we have to, but like you say, if it brings the miracle baby then it is so worth it. X

[Lauren80 in reply to ZG888]

I hope you manage to get some 🙏🙏, I’m on a few fertility groups on Instagram and sometimes other people are selling off their lubion. Might be worth looking on there?

Xx

[StarsAllAround]

I'm really sorry your going through this, can you change clinics? I had my NHS cycle through a private clinic the extra medication like lubion and tests I needed that were not covered by the NHS I just paid the clinic for. Only have 1 round on the NHS in my area and the funding only covers basic treatment so I still had to pay a few thousand for the extra medication and tests needed. I think most clinics will take NHS patients.

[ZG888 in reply to StarsAllAround]

Thanks for responding to my post

I could change clinics, but that would mean going privately and we have 2 more NHS funded cycles. Plus the only private clinic near me has only male doctors and I'm really uncomfortable with them being in that area! I'm hoping at this stage to find a clinic to work with alongside NHS treatment, but so far my NHS clinic won't accept me taking privately prescribed Lubion. It's very frustrating! It's not fair we get different NHS funding in different parts of the country but really hoping your first cycle works and the extras privately were worth it 🤞 x

[Kerry1487]

I’m so sorry about your experience. I would be pushing for more advice from your NHS consultant, you shouldn’t be having to seek help privately if you’re still funded.

My luteal phase is normal but I spotted 2 days before my OTD with my fresh and that was enough for a consultant to say I needed more progesterone. I’m now on 1 lubion and 2 cyclogest per day. A different consultant wasn’t prepared to give me any progesterone so I queried this and they still agreed for me to have the lubion added all under my NHS cycle.

I asked for a progesterone blood test on transfer day which they did and so far haven’t billed me. They told me my level was good but this can fluctuate on different days and I wasn’t offered a follow up.

I hope you get more help from you clinic as IVF is stressful enough but I do find you need to do a lot of your own research and advocate for yourself xx

[ZG888 in reply to Kerry1487]

Thanks for responding to my post

I've pushed a few times and was told HRT would stop me bleeding early, and yet it still happened 4 days post FET. I do feel like I'm banging my head against a brick wall with the NHS! That is good to know that you got lubion on your NHS treatment.

It is crazy how much we have to advocate for ourselves, but thank god for forums like this where we can support each other and share advice x

[Catlover89]

I understand your frustration with this as I had something similar.

I had two failed FET with 5AA embryos. The first I started bleeding a few days before test day. I explained I was worried about progesterone so they said take 3 cyclogest next time instead of 2. The second transfer also failed although I didn’t bleed. I was still concerned about my levels, they told me that the prescription is more than my body produces naturally so should be enough for me. They too didn’t suggest a blood test at and point. For my 3rd transfer, we had to do it private (same clinic) as no more nhs funding and I asked for blood test which they did day of transfer, next day had a call to say it’s came back too low so they had to urgently send me lubion injections 2days after my transfer. I’m now on 3 cyclogest and 1 lubion daily. This time round I had a positive test, fingers crossed it all works out ok but I think if you are concerned and don’t feel your being listened to, it might be best to switch clinics. I’ll never know if this was what caused my previous failed transfers but I’m glad I did my own research and asked for the test as the clinic would never have suggested it xx

[ZG888 in reply to Catlover89]

Thanks for responding and congrats on your positive test

I don't understand why we're all having to do our own research and ask for extra progesterone and they never suggest it but I'm glad you did it and it has worked out for you. Based on what you, and other women, have said it seems mixing lubion daily with pessaries works well so I'm going to keep asking until they accept it, even if it does mean buying it privately.

Wish you all the best in your pregnancy x

[Catlover89 in reply to ZG888]

Thank you I know, I assume that they just don’t want to pay for extra progesterone and just tell you to continue the same standard protocol until funding runs out however meanwhile you end up wasting embryos because they’re not doing basic tests and missing something. It blows my mind that my clinic didn’t even suggest checking it even for the 3rd private transfer. Good luck with your future transfers I really hope it all works out for you xx

[Lauren80 in reply to Catlover89]

congratulations on your BFP 😊🎉, o hope you don’t mind me asking how you are managing to space the lubion and pessaries out throughout the day? I’m on the same but they say 8 hours between which is impossible 🤣🙈

Xx

[Catlover89 in reply to Lauren80]

Thank you

No I don’t mind at all. So no one has told me it needs to be 8hrs between…just that cyclogest needs to be about every 6hrs, so I start taking my first cyclogest around 6/7am, and then I do the others every 5/6hrs, and they just told me to then to the lubion in the evening before I go to bed. So I end up taking progesterone 7am, 1pm, 7pm and like 9pm. Since the Lubion I do sometimes take the pessaries a bit earlier than the scheduled time to make sure i don’t take my last pessary too close to the injection. Hope that helps and all the best to you xx

[Lauren80 in reply to Catlover89]

That’s really helpful, thank you so much 😊. Hope you are doing well xx

[Lauren80]

Out of interest as well, does anyone get any symptoms taking progesterone? I read on here people say sore boobs etc. I get nothing on all my transfers I’ve taken them.

Xx