polycystic ovary syndrome

[jona]

A friend of mine has polycystic ovary syndrom and is about to try and conceive. Has anyone else out there got this syndrom, and how if so, did you have any problems conceiving?

[MandyD]

Hi, I suffer from PCOS and was told that I would be unable to conceive without hormone treatment. First of all I was given a low dose of steriods to be taken at precise times of the day to "reverse the circadian rhythm". I did conceive but had 5 very early miscarriages (less than 9 weeks). A while later I tried Clomid (fertility drug) but didn't persevere due to relationship problems. A year or so I tried Dianette (a contraceptive pill, but it does treat PCOS) but no success. All these attempts were with the same partner.

Then my marriage ended and I met someone else, told him I was infertile, but within a year I was pregnant!

I had done some reading in the meantime and I concluded that the hormone problems associated with PCOS being an excess of testosterone, I'd need some female hormones to counteract this. As soon as I had a positive pregnancy test I was beating on my GP's door demanding the mini-pill, anything to get the progesterone...luckily she'd read the same as me and prescribed it, which she shouldn't have done as I was pregnant.

I got referred to the early pregnancy clinic (part of Women's Health dept at hospital, not obstetrics), had an 8 week scan and for the first time ever there was a heartbeat!! They prescribed progesterone pessaries to use for, I think, 8 weeks. 7 months later I gave birth to a healthy baby boy who's now a bouncing 3 year old.

[SueW]

Women's Health is an informative site which you might find useful. The obstetrician who maintains it used to post on the misc.kids.pregnancy newsgroup.

[lou33]

I found out I had pcos when i was trying for my second child. I was sent to the gynae clinics and prescribed clomid, but it didn't work, so they operated on me by giving me a laparocsopy and using a technique called ovarian diathermy. Basically what they do is "drill" tiny holes in the ovaries with a laser. They don't know why, but for some reason it works! I have 4 children now, so they obviously did a good job, and for the first time ever my periods became regular. The one thing they did say though was that I should complete my family within about 3 years because it usually stops working as well after that, although this was in 1996, and my last time pregnant was 2000, so I guess they can only estimate!

Good luck to your friend.

[Marina]

Hi Jona, a regular poster on here, WendyM, has PCOS and I hope she spots your thread and replies in more detail than I can. She recommends the PCOS support organisation, Verity, as a great resource.
For example, she pointed out earlier that PCOS does not necessarily prevent you conceiving, although it does lead to problems with some women who have the condition. I THINK infertility in PCOS is due to sporadic or absent ovulation, so your friend may be prescribed a drug such as Clomid to encourage ovulation if this is the case with her.
It does not seem to have stopped Victoria Beckham, who is now expecting her second child, so very best of luck to your friend.

[wendym]

Hi Jona I have PCOS too and it doesn't always cause infertility although sufferers are normally told it will. However obviously on this site you are only likely to find the successful ones. Women with PCOS may need medical help to conceive but there are some of us who conceive naturally. Some evidence that a diet based on foods with a low glycaemic index can help as PCOS may be partly due to problems with insulin.

There is a great deal than can be done to help and the best way to learn about it is to join either Verity, the UK mailing list or both. Your friend can find joining info at www.verity-pcos.org.uk. Another really great place to get information is www.inciid.org/faq/pcos.html The mailing list is the best place to find information on helpful consultants for anyone willing to post the nearest large town. Some gps don't understand that pcos is a metabolic disorder and can be very unhelpful.

I'm so pleased you're helping your friend, many cysters really lack that support.

[wendym]

sorry I didn't acknowledge your post earlier marina. I'm a slow typist, it must have appeared while I was typing and I had to dash off. Some PCOS sufferers aren't too happy about the publicity posh is getting. Generally we have any or all of the following - irregular periods or none, infertility, weight gain, excess hair, acne, depression. As posh doesn't seem to have any of those we wonder if she has polycystic ovaries but not polycystic ovarian syndrome. Women struggling with the sort of problems I've mentioned find it upsetting when relatives/friends say something like "oh you're just making excuses, look at posh". Even if she does have pcos she can afford electrolysis or laser treatment, a personal trainer, a private consultant.

[Marina]

Wendym, I'm sorry, I really had no idea that VB is not considered helpful to promoting the cause of PCOS patients. Just goes to show what lazy reporting can do...I can see how her situation could upset people in the light of what you've said. Apologies.

[dm2]

jona - I found out I had PCOS after having my 1st child. I was just starting investigations for infertility when I decided to go on a low glycaemic index diet (purely to lose weight) and I relaxed about the whole baby issue for the first time in years. All of a sudden I had regular periods and was pregnant within 3 months.
According to what I've read since, high insulin levels in your blood kick off the abnormal levels of testosterone etc. if you control your insulin by changing your diet then the syndrome comes under control. (hard to type as have poorly babe on my knee - hope you know what I mean).
I'm back on the low GI foods again now - makes me feel good, keeps the weight from piling on, and makes the chance of having babe no 2 greater.

[MandyD]

Wow - that's interesting! I am a diabetic who takes insulin by injection and also suffer PCOS! As I take a set dose of insulin every day, and don't eat exactly the same food every day, there must be many times when there's too much insulin in my system. It was in fact the diabetes consultant who first suspected PCOS and referred me for tests.

[mommy]

So what is a 'low glycaemic index diet'????

[SueW]

This has suddenly got quite interesting for me.

My sister in law developed diabetes at puberty. She lost her sight in her early twenties, as a result of diabetes.

During both her pregnancies she had far fewer problems with her diabetes and her insulin seemed far more under control. I have no idea whether she has PCOS or whether it has ever been discussed with her as a possibility. We have often discussed the possibility of it being hormone related but her consultants haven't seemed very interested in the theory, except one she saw some years ago.

[wendym]

marina I wasn't upset just pleased that you'd reminded me about posh so I could warn jona that her friends problems might be more troublesome.

A low glycaemic index diet is one that avoids potatoes, most bread (granary and rye in moderation), rice unless it is basmati rice, cooked but not raw carrot, some other foods. Good books to read include Eat Yourself Slim by Michel Monignac and The GI factor by Dr Anthony Leeds. I've heard good reports too of the Insulin Revolution and one by Leslie Kenton called The Syndrome X diet but I haven't read them.

The diet has changed my life a lot. Unfortunately I'm not losing much weight but I feel totally different (more energy, much brighter) so I rave about it.

Age onset diabetes is an advanced form of insulin resistance although I don't imagine this applies to your SIL SueW. There have been major advances in the understanding of this sort of problem in the past few years so she could try asking again.

[Chelle]

My sister was diagnosed with PCOS while pregnant with her first baby. She had had very irregular periods since puberty (often only one or two a year) but nobody thought to investigate this nay further. While she was having an early scan done during pregnancy (suspected ectopic) they identifiec polycyctic ovaries. Since baby was born she has had lots of further testing and has been told she is clinically infertile (so explain the baby, then ) which has impressed her dh no end claiming he has "sperm of steel"!!!

She is on hormone treatment at the moment (contraceptive pill, Diane?) and has been told that the only way she is likely to conceive again is with fertility drugs of some kind. As her baby is nearing 12 months old now and she is thinking of trying for another, this is all starting to get her down a little bit. Does anyone know of any support group or similar she could contact in Australia?

[Chelle]

A second thought......

I don't want to offend anyone here, but something similar to PCOS occurs quite often in cows used in artifical breeding programmes (please don't think I am comparing anyone to cattle but coming from a rural background dh refers to my calving date and the habit is kind of wearing off on me)....anyway...the point of all this is that in cows with cow PCOS, the vet can manually manipulate the ovary to "squash" the cysts which can often be enough for them to get in calf again. Could this be a similar (but more crude) technique to one described her by Lou33? We can also use hormone treatment for the PCOS cows.

The reason I mentioned cattle at all is because bovine and human reproduction/hormone systems etc are very, very similar (very similar gestational times as well) and the extensive research conducted into human fertility has lead to huge advances in breeding technologies in cattle...so it is relevant but I would like to stress that no offence is meant by comparing human women to bovine women

[wendym]

chelle sorry I don't know of any australian support group but the verity web site probably has a link to the American support site and they may be able to suggest somewhere. The pill she is on may be dianette. She needs to read up as much as she can about the condition and ask her doctors about metformin. It's a drug originally used for diabetics but increasingly used for PCOS. If she can't find anywhere else I don't think we'd prevent anyone joining the British list.

[SueW]

Chelle, had to laugh re your bovine message. A friend's husband has recently completed a PhD in bovine fertility (involved him taking cow's temperatures at all times of day and night - rather him than me). One day his wife and I were having a conversation about 'women's things' and I was talking about the book 'Taking Control of Your Fertility' She said her DH would probably love to read it!

[Chelle]

Thanks WendyM!

LOL SueW!

[hwr]

Sorry, but as someone with PCOs I wanted to defend Posh! She may not have any obvious symptoms now but she was a spotty when younger and somewhat more generously proportioned (not fat though!) I have pCOs but no obvious symptoms now, but I had terrible acne for 18 months.

I was told i'd be unable to conceive naturally by 3 specialists so dd (1 yesterday!) was a bit of a shock. Weirdly, I've still been told to complete my family by 30 as dr is certain that dd was a fluke and fertility treatment is very unlikely to work after that age.

[wendym]

Didn't know posh was spotty when younger. The problem is that a lot of pcos sufferers get told that its all their own fault, sometimes even by their doctors. But if they manage to get to an expert in the field thay discover there is an endocrinological reason for their problems and probably a genetic component. If I can quote one of the people from the list - her MIL said she didn't know why DIL just didn't get on and provide her with a grandchild when posh had done it. Very hurtful for someone desperate to conceive.

Not sure I'd trust any of the 3 specialists about fertility if your only fertility problem is pcos. PCOS sufferers often find their periods become more regular for a time when they are older. Obviously not something to rely on but it does provide hope.

[wendym]

This is from one of the people on the pcos e-mail list (yesterday). It is a good article.

Am I the only one here who reads the Guardian?? I spotted this article when
I was reading the paper at lunchtime. Follow the link and see what
you think, I think it's pretty good.

www.guardian.co.uk/Archive/Article/0,4273,4364656,00.html

[MandyD]

I thought it was very well balanced, although perhaps veering toward the tabloid style of writing particularly towards the end! I wasn't clear what was meant by the comment about Kym Marsh being in pain with PCOS. I've never had any pain with it at all...

[bluebear]

I have PCOS (diagnosed after the birth of ds) and have been having good results from careful diet control, but I can't say I've looked into it very deeply.
Have just looked at the verity-pcos website and seen that one symptom of pcos is miscarriage.. (hadn't realised this before.. was more concerned with ovulating) Anyone know if this risk decreases with careful insulin/hormone control? I haven't found anything on my searches so far.

Not preggo yet, but looking ahead.

[angharad]

Have PCOS and am now expecting no 4, no miscarriages. I was told at 16 that I'd never have kids without fertility treatment and that if I didn't have them before 30 wouldn't have them at all. There's an interesting book called "A woman's guide to dealing with PCOS" cAN'T REMEMBER AUTHORS which is a mine of info. Also explains that the miscarriage/infertility thing tends to be overstated as there are other factors involved.

[aloha]

Just been to visit my friend who is 32 and the very proud mother of a beautiful 6week old little girl. She has PCOS and has had one m/c but got pregnant again without too much delay.

As for Posh, she is still pretty spotty (remember how much retouching there is in magazines), and went through hell at school being tormented for her acne (she was known as Sticky Vicky). She's very bothered by it. And she had problems conceiving both times, apparently. Has been seeing a specialist, I understand.

[Tillysmummy]

I had PCOS and was also told it would be difficult to conceive.

I came off the pill before DD and was going to wait 3 months but accidentally ended up preggers before the 3 months. I was very worried about the baby etc because of all of this waiting 3 months advice. My doc told me that they only say this because they can't accurately predict conception and due date because ovulation is all over the place when you first come off the pill and needs a few months to settle. My dd is testimony to the fact that there is nothing wrong with getting pg straight after coming off.

In fact for next time my doctor told me to try immediately after coming off the pill. People are very fertile immediately after coming off.