I’ve was following the Verity twitter feed because they were Tweeting live from a one day conference they held on PCOS and fertility. For those of you that don’t know, Verity is the patient group that supports UK women with PCOS and you can find the twitter feed here :
Here are most of the day’s tweets in order.
Oh and the abbreviations you might need to know:
FSH = Follicle Stimulating Hormone
LH = Luteinizing Hormone
NICE= National Institute for Health and Clinical Excellence.
PCT= Primary Care Trusts
No increased risk of miscarriage is not greatly increased if at all in women (long-term study from Finland)
one reason miscarriage reported to be higher in PCOS women is due to following pregnancy from very early stage
Hmmm these first two sort of make sense to me and they leave me feeling somewhat hopeful… wonder if I can find more details on this study!?
Follicles get ‘stuck’ in women with PCOS, probably due to abnormal hormone environment & suppression of FSH
Abnormal hormone environment: higher levels of LH, high levels of insulin (in overweight women) & lower levels of FSH
Overweight women who lose 5-10% can see vast improvement in symptoms (Kiddy 1992, Clark 1995, Normal 2002, Steele 2005)
This I know to be true just from the improvement I saw when I was lighter two years ago as compared to now. Getting my weight to stop swinging from one to the other though… uuugh frustrating!
Clomid has been used for more than 40 yrs as an estrogen blocker to increase FSH levels & trigger ovulation in PCOS women
Clomid has 75-80% ovulatory rate but still has multiple pregnancy rate of around 10%, ultrasound monitoring should be in 1st cycle
Clomid generally not recommended to be under GP in 1st cycle as they don’t have facility for ultrasound monitoring.
Slim women with PCOS generally have surge of follicles with Clomid, so dose would be reduced on next cycle
Women with higher LH & testosterone can be Clomid resistant, not generally given with BMI over 30 & preferable <25
Yikes I’m sitting here with a BMI around 37 and raised testosterone levels, a lot of work to do if I want this drug to have a shot at helping me .
Women with BMI over 30 that have tried to lose weight can be tried on Clomid.
I’m a pessimist I guess. This sounds like a set up for heartache to me :S
Low-dose, step up FSH regimen has been used for more than 20 yrs. typical start at 50 units per day, then 75, 100 and 125
Clomid used on women with BMI >40 *CAN* work but is very rarely successful
Must lose weight Ali … must try harder.
Ovarian drilling is successful but not quite sure why – success rate btwn low dose FSH & ovarian drilling is comparable
Dutch study: conception rate in Clomid & Metformin = 40% … Clomid & placebo is 40%
Nth American study: live birth rate w Clomid & Metformin = 26.8%, Clomid & placebo = 22.5% and Metformin & placebo = 7.2%
Man those live birth rates SUCK 😦 … I say again PCOS you are a bitch with little mercy and feeling less hopeful again
Metformin has a place in reducing insulin levels but not as a line of fertility treatment.
In a great number of women with PCOS, it is possible to restore normal ovulation.
Wonder will I ever be on the right side of these numbers … hmmmm ?
Q: Thoughts on ovulation prediction kits? They are useful but not accurate in women with PCOS due to higher levels of LH
Cervical mucus comes just prior to ovulation. Temperature rise is after ovulation. Egg disappears quickly after ovulation.
Oh for the simpleness of have sex, get pregnant without ever hearing the phrase cervical mucus … Sadly it was not to be.
Q: Clomid ovarian cancer study – thoughts? A: after initial scare, studies have been reassuring… will go up to 9 cycles.
Q: if you don’t get pregnant after 6 Clomid cycles, what’s next? A: Look at low dose FSH injections
Q: Correlation btwn severity of symptoms & fertility? A: Not a lot of difference in rates of ovulation & pregnancy.
Q: what is top end BMI range of treatment? A: >30 if they have lost weight. Not sure if it is weight or nutrition related
Q: Am of normal weight, but even when I put a few pounds on I notice huge difference in severity of symptoms
A: It’s the change in weight that’s important, not the weight itself
Q: if I am in high end of normal BMI – will getting on the lower end of normal help? A: No, it won’t help
Q: Blurred vision on Clomid, can I take FSH? A: Yes you can take FSH
Q: If I have IVF & live birth, w 2nd pregnancy is 1st line of treatment IVF? A: Worth trying Clomid again as things change
Q: vitamin D deficiency in PCOS? A: link between vit. D & insulin resistance.. Normal levels of vit. D can help PCOS women
Q: can I get vit. D test from GP? A: you could, but not sure if you should have regular tests. We need more research & info
Q: is there a min. BMI for treatment? A: European origin generally >19 for treatment, but can depend on ethnicity
In the UK, funding for fertility treatment is very very poor in comparison to other European countries
Suck sucks..SUCKS !
NICE recommended 3 cycles of IVF and it is not progressing across PCTs throughout the country
In the 5 yrs since NICE guidelines came out, services have improved and East of England is providing the best service
Uughh so … relocate to the east of England to give me the best change of winning the NHS postcode lottery. WHEN will our government realize that THIS is not good enough and actually DO something about it…
Impact of infertility is misunderstood… it doesn’t just affect two people, but their friends and family also.
Govt. considering national tariff to set standard cost on IVF and fertility treatment.
GOOD IDEA… watch this space.
http://www.fundingforfertility.com has template letters for you to send off to PCTs and MPs about your lack of funding.
People (infertility patients) need to make a fuss, as PCTs think that people don’t care when fertility funding gets cut.
Mmhumm people who can have kids don’t care … and people who can’t have kids don’t like to talk about it so much. So very sad.
Q: Why do they cut fertility funding? A: It’s an easy thing to cut, as people / public don’t make a fuss
What is the point of NICE guidelines if decision making is made on a local level with no enforcement as to how £ gets spent
Best place to live in London for IVF funded treatment? East London
Delegate got told that wouldn’t get fertility funding from Berkeshire PCT as they lost £90m in the bank crash.
Q: what are the IVF waiting lists like? A: Good, because we (UK) don’t fund very many, should happen within 18 weeks
Good news for all the wrong reasons.
Q: how much does IVF actually cost? Q: Between £3k and £5k … lower end from £2k plus drugs (= £3k)
Actually this is LESS than I thought.
There is still a stigma attached to infertility, and that our body is letting us down… feel angry, ashamed & frustrated.
Whoo… check, check and check… I certainly feel all of those things on a regular basis.
We don’t realize how many babies there are until you can’t have one yourself & it feels like our life is on hold waiting.
“I felt like everyone else that couldn’t have a baby was dealing with it fine except me”
– Then you should read more blogs you are not alone my friend… not at all.
Infertile couples often find themselves feeling jealous of people / friends / family with babies
There is no doubt that TTC and baby making sex puts a huge strain on relationships
Support (especially peer support) is not as common and forthcoming for men going through infertility
Yeah you know I think the guys have a rough time of it 😦 infertility hurts everyone involved
If you are going through treatment, it’s important to talk to your partner about whether you both attend appointments, etc.
More and more women are turning to complementary therapy, but not as many do and they can be as beneficial
Tell your employer you were undergoing fertility treatment? 1/3 of people don’t as they fear being treated differently
Do you tell friends & family? Consider telling them you are doing it, but don’t tell them *when* you are doing it
Counseling can make a *big* difference in how you cope with fertility treatment – see a fertility friendly counselor
Keep stress down as much as you can… TTC is *very* stressful, but help to lessen that as much as you can (comp. therapy)
Learn as much as you can about treatment, it helps you feel empowered. Main difference is getting support & help
OK, so that’s the lot. I actually learned a few things which is always good for my own part. Mother nature decided to celebrate the fertility event by sending AF to visit me late last night just in time making my last cycle 85 days long. This sucks because until now I had been doing so well – hitting regular cycles of around 32 days. It also sucks because unlike AF’s previous two visits that have been totally pain and stress free, this time things are definitely starting to get a lot more painful and uncomfortable again. Just when I thought I was making a little progress… *sighs* I wish I understood my body better.