Progesterone, progester-woes, when do we stop it? Nobody knows

I called my clinic on Official Test Day to give them the good news, but I also had a list of questions. One of my questions I believe I already wittered on about in my last post, is that my clinic normally stop progesterone on OTD rather than after the viability scan or at 12 weeks. My question was why?

The nurse I spoke to is lovely. I’ve met her a few times, and she seems genuinely lovely. Did I already say that? Lovely. Lovely, but she doesn’t speak very good English. Our conversation was highly, highly unproductive and awkward with me asking my questions and her not understanding them, followed by her trying to answer my questions and me not understanding her. I really just wanted the rationale behind their decision as although it’s not unique, it certainly seems more unusual to withdraw progesterone at OTD. It was a difficult conversation, but eventually she said that she would ask the doctor to write me a prescription for an extra couple of weeks if I had concerns.

She then transferred me to reception to pay, but Reception Lady was on her lunch break. She said she would call me back. I waited. I waited more. I waited a bit more, then I called. Straight to voicemail. I waited 5 minutes, I called again. Voicemail. I repeated the calling-everything-5-minutes-technique for an hour, voicemail, voicemail, voicemail. At 3pm I gave up and left a bloody voicemail. I kept on calling now and again. I left another voicemail at 4.30pm. Nobody called me back. I waited on Monday morning, no call. I called again, voicemail. I THINK YOU GET THE PICTURE. I left 2 more voicemails. I kept calling. Straight to voicemail. I was about to spontaneously combust when I left a fifth voicemail on Monday afternoon. There must have been an edge of fury to my tone because a miracle happened, and the nurse called me back an hour later! Hallelujah. She hadn’t sent my prescription off because I hadn’t paid yet. I took a deep breath, pulled my hair out by the roots and bashed my head against the wall and asked to pay. She transferred me to reception. At least I presume she meant to, but she actually cut me off. I called back. Wanna hazard a guess? Straight to voicemail.

I could go on, but lucky for you I have a maximum paragraph length tolerance threshold and I just reached it. Suffice to say, I never got through, I left more voicemails and nobody called me back.

There are many things you don’t know about me because I am very mysterious. One of the things you probably don’t know about me is that I have recently relocated. Yep, relocated during IVF. I’d like to say this wasn’t planned: it was for work, we had no choice! I’d like to say that, but it’s not true so I can’t. I didn’t realise IVF would be quite the time consuming escapade it turned out to be. Whatever the reason, my stupidity or otherwise, it means that I now live 230 miles from the clinic. Crap. Town. It therefore meant (*does hard maths*) a 460 mile round trip to collect my progesterone. Good going Betty, you complete idiot.

[Note for concerned readers: Don’t worry, I’m changing doctors soon, but I have to wait until after the viability scan when I should, God willing, be discharged from the IVF clinic.]

So anyways, you get the picture; getting through to the clinic was hard and I live far away. It’s also sweaty and hot in England at the moment. I had a sweaty and hot journey on public transport and I arrived at the clinic, rather unsurprisingly sweaty and hot. For your pleasure and enjoyment, I shall transcribe the conversation I had with the nurse (note: a different nurse to the one I spoke to on the phone).

Me: Hello, I have come to collect a prescription
Nurse: What for?
Me: It’s for Barren Betty and it’s progesterone
Nurse: Oh yes, I’ll get it
Me: (wipes brow partly from sweat and partly in relief that the bloody prescription has arrived)
Nurse: Here you go. Why do you need it? Have you run out?
Me: Well, actually I called up on Friday because I found out that I am pregnant.. (mouth still open but unable to finish sentence before nurse interrupts)
Nurse: Ah, you were a little bit worried?
Me: Yes
Nurse: Well, progesterone does no good you know. It’s totally pointless
Me: Err, okay
Nurse: It just masks the symptoms when something goes wrong
Me: Well, I guess I just want to make sure I’ve done everything I can
Nurse: If you are going to miscarry, it will happen anyway
Me: (makes some silly light hearted remark to make the nurse feel better for being such a bitch)

Apart from being made to feel like a moron, I don’t that think that she is completely correct. Yes, I know it won’t prevent a miscarriage and it can mask symptoms, but progesterone is hugely important in early pregnancy. Do they know my progesterone levels? No they do not. Do plenty of clinics continue with progesterone until weeks 7-12? Yes they do. Does it do any harm? No it doesn’t. Maybe there is only a tiny chance that my body isn’t producing enough progesterone now to sustain a pregnancy, but there was only a tiny (1% chance) of a cyst developing after cycle number 1 and I hit the jackpot then. There was only a tiny chance (1 in 40) that the down regulation drugs would fail. I was in that tiny minority both times.

Well, excuse me if I want to make sure I’ve covered all my bases. It’s not like I can just do this again when they turn round and say, “Well, it was very unlikely, but unfortunately you are one of the few…” I’ve heard that enough already, thank you very much.

I read a clinical trial last week during my progesterone research phase that looked at withdrawing progesterone at 5 weeks and 8 weeks. The rates of miscarriage were the same, but the episodes of bleeding were much higher when progesterone was withdrawn at 5 weeks. Even if it just prevents that and gives me peace of mind, I think it is worth it… and that is saying something since it was an 11 hour round trip to go and fetch it. It wasn’t exactly free either. It’s morbid to say, but I’d rather miscarry at 6 weeks on progesterone than not. At least I can rule it out as a reason then. At least it would be one less reason I could use to blame myself.

If you’ve skim read this steaming pile of turd, I don’t blame you. The gist is: I told the nurse I was pregnant. An IVF patient pregnant after years of trying to conceive, operations and heartache and I was left feeling stupid, deflated and thinking about miscarriage.

I’m wondering how you all stopped progesterone. Did you go cold turkey, or were you weaned off it? I’ve consulted Dr Google and discovered much hysteria surrounding progesterone in general which was hugely unhelpful. I’m obviously not going to call my clinic to ask since I have clearly already been blacklisted. I wouldn’t be surprised if an alarm goes off in the building now when my number pops up on the phone.

BB xx

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35 thoughts on “Progesterone, progester-woes, when do we stop it? Nobody knows

  1. missymakes

    Ugh! That is one loooong trip for progesterone. I would have totally lost my shit on that nurse, so good on you for keeping it together. I never realized how lucky I was to have my ivf drugs shipped to my door overnight. I won’t be taking that for granted now!

    I’m curious to see how others stopped progesterone as well. I know I’ll be on it until at least my viability scan at 6w5d, but I don’t know if they plan to stop it then or keep going with it. Personally, I’d rather stay on it as long as possible unless they’re using blood tests to confirm I’m ready to stop.

    Reply
    1. barrenbetty Post author

      I arranged for most of the drugs to be delivered, but it wasn’t possible for this extra progesterone. Boo. I’ve got my grubby little fingers on another 3 weeks worth though, which will take me up to 8 weeks. There is no way in hell they will check my progesterone level, so I will just have to hope that the baby Betty is doing a good enough job of making its own by then. Fingers crossed!

      Reply
  2. IVFfervescent gal

    I don’t have any advice on the progesterone but just wanted to say my blood pressure went up when reading this post. The non returned phone calls, the calls going to voicemail, the sheer idiocy of an IVF nurse casually mentioning miscarriage. My god. The only good thing for me in this whole devastating IVF journey is how awesome my clinic is. But then again, I’d rather have a crap clinic and be preggers than a nice clinic and be non preggers.

    Reply
    1. barrenbetty Post author

      I was getting pretty irate about the phone calls. Err, aren’t calls to an IVF clinic usually pretty important?!! It was infuriating! Nearly spat out my dummy when she lectured me on miscarriage instead of saying congratulations, but decided against it. I won’t be sad to see the back of them that’s for sure! Soon enough you will have a nice clinic and be preggers and you will be completely winning in every way xxx

      Reply
  3. InLimbo

    Argh! How infuriating! I totally understand the phone call issues – I can’t tell you how many times I’ve been through that process just to contact someone about what is usually an urgent question! Why!? And I’ve also often felt that nurses at ivf clinics need some kind of sensitivity training, or preferably be infertile themselves – can you imagine that job description?

    Reply
    1. barrenbetty Post author

      It’s infuriating isn’t it? I feel like I spend half my time waiting… waiting for appointments, waiting for test results, waiting on waiting lists, waiting waiting waiting. We don’t need to have to wait for phone calls to be returned as well! Argh!

      Reply
  4. sadietrue

    I feel so angry for you just reading this. I’ve had similar experiences with nurses making me feel stupid and my clinic seemingly deliberately trying to make my life harder (not calling me back, not answering my questions, not sending blood test requests through to pathology). It was so bad I ended up changing clinics. I simply don’t understand why these people aren’t consciously trying to make our lives easier instead of so hard. IVF is traumatic enough as it is without adding all those extra dramas. Good on you for pursuing this like you did and standing your ground on the progesterone. You should feel proud of yourself.

    Reply
    1. barrenbetty Post author

      Aww, thanks! At the time I just felt stupid – like I was a panicking silly little girl. Now I’ve read your comment and had time to think about it I am glad I stood up for myself and got the progesterone. I won’t have any regrets now at least. I’m sorry you had a crappy experience… I totally agree, IVF is traumatic enough without having to deal with any extra dramas. I hope your new clinic is more on the ball! xx

      Reply
  5. Bachelor's Button

    How frustrating! And rude… I find clinic etiquette odd. I spend masses of time speaking to clinic answering machines and waiting for tardy phone calls. I had to take progesterone jabs for six months with my pregnancy. If preg this time am told 12 weeks. However my dose has also been halved this time as apparently too much progesterone cd now be a bad thing (in the two years since my successful treatment!!) hx

    Reply
    1. barrenbetty Post author

      Interesting! How much progesterone are you taking? I’m devising a weaning plan for myself! I’ve read that certainly by 12 weeks your body is producing so much the extra jabs etc are a drop in the ocean in comparison.

      Reply
      1. Bachelor's Button

        I’m having jabs of 50. I was on 100 last time but had lots of possibly related (now two years on the theory goes) bleeds. However, bleeds can also be because not enough progesterone…. I think until 12 weeks is probably plenty. Hx

  6. newtoivf

    Oo my god what a total nightmare! This is so awful, you should complain…. not over the phone obviously! Can’t believe the nurse, what a total bitch. IF just manages to finds a way to smack you every time huh?

    Reply
    1. barrenbetty Post author

      It’s just one big face smack!! The nurse said it with a big smile on her face like she was being dead nice. It was very confusing for me. I just went along with it, and it wasn’t until I was walking out of the hospital that it dawned on me how unnecessarily rude she had been!!

      Reply
  7. journeyformybaby

    Oh my!! I would have done the same regardless if they say it isn’t nessassary. peace of mind. I weaned off mine starting at 14 weeks or so. I started every other day. it was sometimes around there. But the RE said to stop cold turkey at 10 weeks. i disobeyed lol.

    Reply
    1. barrenbetty Post author

      Interesting, thanks! I’m devising a weaning plan for myself. I feel much more comfortable knowing I’ve got another 3 weeks worth to keep me going, even if they think it’s useless! They have talked in absolutes to me before (eg presuming down reg drugs would work when it turned out I was in the minority that they didn’t work for), which makes me feel slightly distrusting of them now.

      Reply
      1. journeyformybaby

        I understand. Frankly, I don’t get their hesitation. Peace of mind is extremely important in pregnancy and even “if” the extra progesterone isn’t needed, it really, truly can’t hurt anything! I’m glad you got it. I think you are doing the right thing to trust your gut.

  8. hopefulandhungry

    Um….wow, I can’t believe that nurse had the nerve to say what she did to you. It sounded completely unprofessional and incorrect. I’m sure you handled yourself with grace. I think it is smart to continue with the progesterone!

    Reply
    1. barrenbetty Post author

      She said it with a smile on her face. It was confusing! I just laughed it off in the clinic and made out I was being daft. I certainly felt like a silly little girl. It wasn’t until I was walking home that I realised how rude she had been! Who brings up miscarriage to a newly pregnant IVF patient?! I wasn’t exactly asking for her advice! Urgh.

      Reply
  9. catschristmas

    God it bugs me when I hear of bad clinic/chemist/Dr experiences like that – dont they know that if you are IN that place at all than chances are you are vulnerable for some reason – why must they put the most cold people in the customer facing roles?! Gah!
    Anyway to answer your question, my progesterone was stopped about a week after the positive result. Dont know whats considered normal protocol, but hey, normal is whatever works for YOU!!! xx

    Reply
    1. barrenbetty Post author

      Ahh, very interesting Miss Cats Christmas. This puts my mind at rest somewhat! Did you have any bleeding or anything? I think I will stop at 8 weeks now. That nurse has upset me before. She is very loud, bossy and opinionated. The word “formidable” springs to mind. I think she has quite an inflated opinion of her own medical knowledge and doesn’t like plebs like me questioning the rules of the clinic!!

      Reply
  10. Nushi

    How frustrating! My clinic wouldn’t tell me how long they intended to put me on it. The nurse just kept saying until the doc is certain that the pregnancy is safe. I know much is this is precautionary but my doc continued them until the end of my first trimester.

    Reply
    1. barrenbetty Post author

      Thanks Nushi. I can’t believe how far along you are already! That’s brilliant. It does seem pretty normal to keep taking progesterone until the 12th week just to be on the safe side. I’ll just have to make do with 8. I certainly feel better doing that than stopping at 4 weeks!

      Reply
    1. barrenbetty Post author

      Thanks – I’ve read the same thing. I read that the placenta should take over between weeks 8 and 10. My plan is to keep taking them until 7.5 weeks, then eke out a reduced dose to get me to almost 9. I just hope I get that far!

      Reply
  11. redbluebird

    This makes me so angry I want to call your clinic!!! You should give us all their contact info so we can inundate them with complaints and scientific articles about progesterone during pregnancy.
    My RE told me to stop cold turkey at 9 weeks. He thinks the placenta is functioning at that point & added progesterone isn’t necessary. I had an extra weeks supply, so I’m taking it until 10 weeks. I’m stopping (no weaning) this weekend & am scared, but am also looking forward to no daily gel up the hoo-ha.

    Reply
    1. barrenbetty Post author

      I think I’m going to try and wean myself off them a bit, just to eke out my supply for a bit longer so I can stretch taking them to about 9 weeks! In a way I am looking forward to stopping too… I swear they are giving me pretty bad bloat. I appreciate pregnancy ain’t going to help with that, but at the moment I definitely have a drug bloat and not a baby bump!! Good luck with going cold turkey… You will be a proper preggo then! xx

      Reply
  12. lamentingthelentil

    That nurse is a horrible witch. What an awful thing to say to someone! I mean. Perhaps it’s true. Probably it’s true. But how can you not have an imagination capable enough to understand that this is not the way to go about presenting it. And if a woman has just been through everything that you have just been through, and she wants to continue to take progesterone for ease of mind, WHY THE FUCK NOT LET HER JUST GO WITH IT?

    Ok, now that that is out of my system, I will go on to tell you have I have no answer to your question. I will be kept on progesterone until 12 weeks, provided that this little thing inside of me keeps growing for that long (please UNIVERSE make it happen). Glad to know we’re in this together. It’s going to be a rough (but also wonderful, I think) few weeks!

    Reply
    1. barrenbetty Post author

      Amen to that! They must get so many people calling up asking for more. I would have probably been happy with a proper explanation of why they stop early, but since they didn’t give me that I’ll just take the progesterone ta very much. Seems pretty normal to keep going until 12 weeks… I sort of wish I was, but I will have to make do with 8. I feel much happier with that anyway than stopping at 4 weeks. Hope you are getting on okay. Time is going incredibly slowly for me at the moment!!!

      Reply
  13. mammacod

    I have no progesterone-related recommendations, but I wanted to say how happy I am for you (not so much about the absurd lack of communication at your clinic nor about your lengthened commute) for your BFP!!! I’m so so so thrilled for your good news, and I’m sending positive thoughts that everything continues to go swimmingly. We’re hoping for the same result for our next round …

    Reply
  14. Fertility Doll

    Ok.. after reading your post I have now accepted that some medical staff are just morons. Maybe we need a global fertility moron Google map – clinics and hospitals noted for douchebag service.

    Reply
    1. barrenbetty Post author

      To be fair, I guess the vast majority are not morons. Of all professions, I feel that there is no room for any morons in healthcare. I like your idea… That might eradicate them completely!!

      Reply

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