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Author Topic: What UK Women Need to Know About Progesterone  (Read 5055 times)

Alice

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What UK Women Need to Know About Progesterone
« on: June 11, 2011 at 06:22 AM »
What UK Women Need to Know About Progesterone

  • Pregnant women with a short cervix or a previous preterm birth are at risk of delivering their babies early.  (Generally, less than 25mm is considered a short cervix.)
  • Progesterone has been shown to reduce the risk of preterm birth in singleton pregnancies (not twins or triplets).  It has also been shown to reduce uterine activity (contractions).
    • Progesterone is widely prescribed for this purpose in the US and Canada, but less so in the UK.
    • There are two forms of progesterone used, vaginal pessaries and the injectable form, 17 alpha-hydroxyprogesterone, which I am not aware is available anywhere in the UK.
    • The pessaries are not licensed in the UK for the prevention of preterm birth but can be prescribed ‘off-label’ by a cooperative doctor – you may however need to pay to see an obstetrician privately if your own doctor does not know about progesterone or is unwilling to prescribe it.


My Experience:

Our beloved twin sons died in infancy after being born at 27+4 on 5th September 2010.  I was identified during that pregnancy as having a short and shortening cervix in the weeks leading up to their birth, when I went into spontaneous preterm labour and they were delivered by caesarean section.  I had been having frequent painless contractions for a number of weeks before the birth, which I had been told were Braxton Hicks.

I was taking things easy and had been given steroid injections but was not put on bed rest as my hospital University College London Hospital (UCLH) does not recommend it as it is unclear whether it does any good, and may pose extra risks such as blood clots.

I work as an analyst and researcher, and have read all the research I can find on the prevention of preterm birth.  I am now 26+4 weeks’ pregnant with a baby boy. I have been seen in the Preterm Birth Clinic at UCLH since 16 weeks, when I started discussing progesterone with my obstetricians there.  They were unwilling to prescribe it, saying I would only be given it as part of the Optimum study into it that they are carrying out.  As this is a double blind placebo-controlled study, signing up to it would have meant I may have been unknowingly given a placebo instead of progesterone. 

Because of this, I went to see Professor Kypros Nicolaides (who has published research into the use of progesterone in preventing preterm birth) at The Fetal Medicine Centre in Harley Street, London. He does not actually consult, but you are able to see him as part of a scanning clinic. The clinic is run somewhat eccentrically and they warn that there may be long waits – this is because he is the preeminent professor in the field, and something of a celebrity in UK obstetrics. I waited over four hours to see him, and then had to ask my assigned scanner if I could see him personally.  He agreed that I was an appropriate candidate for progesterone and wrote a letter asking my GP to prescribe it. 

My husband was nervous about my taking something that had not been prescribed by my UCLH doctors, so we agreed to hold it in reserve.  My cervix has been regularly measured and has been holding steady at around 28mm.  I have had two negative fetal fibronectin tests at 22 and 25 weeks. I first noticed painless contractions at around 18 weeks.  By 25 weeks they were very regular (often more than 5 an hour) and I began taking 200mg progesterone vaginally each day.  My contractions have since become much less frequent and less intense.  My sense is that this is due to the progesterone, though it is possible that they would have lessened anyway.

The main reason why the obstetricians in the Preterm Birth Clinic at UCLH are cautious about treating patients to delay preterm labour is that they think it may do more harm than good.  They had previously had some success delaying labour using antibiotics, but subsequently found that the there was a higher rate of cerebral palsy in children treated this way.  They believe that this is a result of keeping babies in a sub-optimal uterine environment by suppressing inflammatory processes related to labour.

With regards progesterone, the follow up data on children is limited but shows no increase in problems. My own view is that the proven benefits of progesterone, and the known effects of preterm birth (death and disability) outweigh the possible theoretical risks of progesterone.  That is a decision that each individual must make for themselves.

Personally, I am very glad that I found a way to get progesterone against the advice of my doctors, and I hope that this post will help other women in similar situations make informed decisions about what action to take.

Other Information:

The other potentially effective treatments to prevent preterm birth are cerclage and tocolytic drugs such as magnesium sulphate and nifedipine.  From what I have read, cerclage is not risk free but appears to be useful when used appropriately and is widely used and understood in the UK. 

To my understanding, while in the US and Canada doctors use tocolytic drugs aggressively, prescribing ongoing maintenance doses of nifedipine to prevent preterm labour, in the UK they are rarely used and generally only in hospital to delay labour by 24-48 hours while a course of steroid injections is administered to prepare the baby’s lungs.  Tocolytic drugs can have serious side effects, and research into their efficacy is mixed and patchy.  I have not formed any firm views on their use.

Please note: All views expressed here are my own personal views.  While I feel that I have researched these topics thoroughly, I have no medical expertise whatsoever and anything I say here could be incorrect.  If you are at risk of premature birth, I’d advise you to talk these issues over with a good obstetrician if you can find one, but also bear in mind that your doctor is not always right and where possible it may be worth making up your own mind.

Sources:

Prophylactic administration of progesterone by vaginal suppository to reduce the incidence of spontaneous preterm birth in women at increased risk: a randomized placebo-controlled double-blind study.
Am J Obstet Gynecol.  2003; 188(2):419-24 (ISSN: 0002-9378)
CONCLUSION: Prophylactic vaginal progesterone reduced the frequency of uterine contractions and the rate of preterm delivery in women at high risk for prematurity.

Prevention of recurrent preterm delivery by 17 alpha-hydroxyprogesterone caproate.
N Engl J Med.  2003; 348(24):2379-85 (ISSN: 1533-4406)
CONCLUSIONS: Weekly injections of 17P resulted in a substantial reduction in the rate of recurrent preterm delivery among women who were at particularly high risk for preterm delivery and reduced the likelihood of several complications in their infants.

Cerclage for Short Cervix on Ultrasonography in Women With Singleton Gestations and Previous Preterm Birth: A Meta-Analysis

Berghella V, Rafael TJ, Szychowski JM.  Obstetrics & Gynecology. March 2011;117(3):663-71. 
CONCLUSION: In women with previous spontaneous preterm birth, singleton gestation, and cervical length less than 25 mm, cerclage significantly prevents preterm birth and composite perinatal mortality and morbidity.”

Follow-up of Children Exposed In Utero to 17 [alpha]-Hydroxyprogesterone Caproate Compared With Placebo

http://journals.lww.com/greenjournal/fulltext/2007/10000/follow_up_of_children_exposed_in_utero_to_17.21.aspx
Obstetrics & Gynecology:  October 2007 - Volume 110 - Issue 4 - pp 865-872 doi: 10.1097/01.AOG.0000281348.51499.bc
CONCLUSION: 17 ?-hydroxyprogesterone caproate seems to be safe for the fetus when administered in the second and third trimesters
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Lost beloved twin boys at 2 days, and one month, after preterm delivery at 27+4 in September 2010 and appalling medical care.

Healthy baby boy arrived at 33 weeks in July 2011 and is doing really well.

flowerchica

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Re: What UK Women Need to Know About Progesterone
« Reply #1 on: June 11, 2011 at 05:07 PM »
This is a good post. I can tell you - I'm on 17p shots (progesterone) and have a cerclage and it's the only reason I haven't lost my pregnancy yet :)
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Graduated from 104 days of bedrest. My IVF Baby girl born in July 2011 perfectly healthy @ 39w2d, 8lb9oz and 21 inches. 6 years of infertility battles have been overcome!

strangerjo

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Re: What UK Women Need to Know About Progesterone
« Reply #2 on: October 27, 2015 at 08:10 AM »
Alice,

I really hope you read this although I see that you have not logged in for a long time.

Likewise I'm a researcher/analyst and I've been reading journal articles to understand the evidence for treatments for an incompetent cervix, so I appreciate your summary.

I'm being seen at UCLH in the pre-term clinic. I'm 21 weeks pregnant and had a cervical length that went from 42mm to 24mm in two weeks, and as a result had a cerclage at 20 weeks. I'm interested in progesterone and would like to have it as a reserve in case my cervix continues to lengthen.

I have a few questions I hope you can answer.
- I was wondering why you weren't offered cerclage
- I have been told mixed things about bed rest. I'm very wary of it as I have other health problems that would be aggravated by bed rest for a prolonged period although it's something I would consider if there was strong evidence for it. I can't find any evidence for it although it intuitively makes sense to reduce pressure on the cervix. I was wondering what your views were of this.
- Have your views about progesterone changed since you last posted?
- I have read some cases (in the US of course) of people having cerclage plus a ring pessary plus progesterone. I can't imagine any UK doctor agreeing to all that but it's something I'd consider although there's obviously even more risk of infection with that. Do you know anyone in the UK who offers a ring pessary?
- Were problems with your second pregnancy related to your cervix or something else?

Any other info you could give would be great. I've found a lack of consistency between doctors. I am thinking of booking to see Prof Nicolaides also.

Thank you.

Alice

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Re: What UK Women Need to Know About Progesterone
« Reply #3 on: October 27, 2015 at 08:36 AM »
Hi StrangerJo,

Saw this as it came to my email.

I have everything crossed for a safe pregnancy for you and your baby.

It was some years ago that I researched and wrote this but I will try to answer your questions from memory.

Nothing specific was ever found wrong with my cervix and my two preterm births were due to unexplained preterm labour. I subsequently went on to have a 38 week pregnancy. It's possible that the first preterm labour was caused by my having twins and the second by being too close to the first - I delivered at 33 weeks less than a year after the first birth. I did not know at the time that short time between pregnancies raises the risk of preterm birth.


My views of progesterone haven't changed but I haven't done any recent research. You could check whether the data from the UCLH Optimum study is in?  Based on what I know in your situation I would try to get my hands on progesterone. I believe it helped me. It's a judgement call.

I wasn't offered cerclage in my twin pregnancy because it hasn't been shown to help in twin pregnancies. I would definitely have discussed it in my next pregnancy - I can't remember exactly why I didn't have it but I have a feeling it may have been because I was past the stage they use it by the time my cervix had shortened to the threshold level.

I don't know anyone in the UK who offers the ring pessary - if you see Dr Nicolaides ask him.

Bed rest: the data had not shown it to be useful in preventing preterm birth at time of writing. Intuitively I also think keeping pressure of cervix/cerclage is a good thing, and common sense can be as reliable as data at times. You'd have to weigh it against the risks from your other conditions. Perhaps there's a happy medium - I took it very easy without actually lying in bed all day. Or maybe do it just until you're past some threshold like 30 weeks, when many of the risks to the baby lessen.

I wish you the very best and hope you'll let me know how it all goes.

Love, Alice
Lost beloved twin boys at 2 days, and one month, after preterm delivery at 27+4 in September 2010 and appalling medical care.

Healthy baby boy arrived at 33 weeks in July 2011 and is doing really well.