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PCOS - is there hope?

(30 Posts)
runtus Mon 18-Apr-05 10:19:17

Thought I'd start a dedicated PCOS thread for those of us under treatment at the moment and finding it hard going. I know I am.

Just finished my 3rd unsuccessful course of Clomid and now awating news on what to do next........don't know if it is just me but I've started to find it really hard going with all the disappointment and constant setbacks.

Any advice on how to deal with it all?

RTKangaMummy Mon 18-Apr-05 10:28:04

I have PCOS and am fat and drs didn't want to give me clomid but I changed hosp. and got it.

After several cycles got preg.

DSD is nearly 10 years so wish you all good luck.

runtus Mon 18-Apr-05 10:46:22

More good news stories welcome!

hunkermunker Mon 18-Apr-05 10:48:38

Runtus, I have endometriosis and PCOS and was told I'd never conceive I fell pg on my first cycle of Clomid and DS is now a year old. So yes, there is hope - I was having follicle tracking, so knew exactly when I ovulated - are you having this? xxxxxx

RTKangaMummy Mon 18-Apr-05 10:49:12

oops meant DS

runtus Mon 18-Apr-05 10:52:40

Whats follicle tracking?? Sounds good..............

hunkermunker Mon 18-Apr-05 10:54:41

It was a series of internal scans to check I'd not produced 25 eggs from my first cycle of clomid - I hadn't, I'd produced one.

Whereabouts are you having treatment? I had this done at Chelsea & Westminster (on the NHS - not quite sure how, since it was in the private clinic - I never quite got to the bottom of how I was treated there!).

artyjoe Mon 18-Apr-05 10:57:17

I have PCOS and numerous other gynae probs and was told 9 years ago after 2 years of private testing that I wouldn't fall pregnant...went for a final batch of tests before giving up last year and on the day I received the Metformin I found out I was pregnant...completely naturally!

I fell pregnant 7 days after moving house and business and feeling like I was having a nervous breakdown, never been under so much pressure, but never thought about conceiving due to the obvious distractions, somewhere must have had sex and hey presto! It must be true what they say in terms of taking your mind off it because that was the first month I didn't check my LH or eat or avoid certain foods or check for ovulation, it really never crossed my mind.

Try to remain hopeful, I'm sure your time will come x

runtus Mon 18-Apr-05 11:47:26

I'm being treated at the Hampshire Clinic in Basingstoke, under private health insurance. I'll hopefully be able to raise the idea of folicle tracking with mr Consultant this afternoon, depending on what he says...........

all good positive stories and advice though so thank you girls!

feelingold Mon 18-Apr-05 12:58:48

I was diagnosed with PCOS 15 years ago after failing to get pregnant for over 2 years trying. Clomid didn't work for me (got up to 4 tablets a day), so progressed onto pergonol (injections in bum + nasal sprays) was on pergonol for 2 years before finally becoming pregnant with dd. I had ovarian drilling 6 years ago and went back on injectons and got pregnant just 1 year later with ds.
There is hope for you but you do have to be patient i am afraid, unfortunately it takes them a very long time to work through to the correct dosage for drugs etc.
I know this is very hard when you are desperate to have a baby now.When I was attending my infertility clinic the clinic sister used to send me to sit and chat to all of the new ladies joining us there(who very often thought that now they were attending the clinic they would be sorted out and pregnant very quickly) and try to let them know that I had been coming X amount of years and that this was common and so not to expect things to always progress very quickly.
My kids are now 9 and 4 but this doesn't stop me wanting more, but I can't put myself through the fertility treatment again. The endless round of injections, blood tests, scans etc as I know from experience it takes over your life and at the age of 40 I can't put myself, my dh or my kids through this again.
I do have 2 fantastic kids and although I went through a lot of pain and heartache to get them they were worth it, so I would say DO NOT GIVE UP, but just be prepared for the long haul ahead.
Good luck and lots of us with PCOS do have kids.

kid Mon 18-Apr-05 13:16:06

My sister has PCOS and has 3 children (11, 8 and 1)

runtus Mon 18-Apr-05 14:45:44

Thank you so much for your post Feelingold, has really pout things in perspective for me.

I think half the problem is that when I was first diagnosed my Dr said basically "I'll put you on these drugs and expect you to be pg within a couple of months", which kind of gets your hopes up even though inside you are going 'just be patient, it won't be that quick'.....I suppose the hope gets the better of me each month, so I build myself up for a disappoihtment.

I know deep down that it can take years and I am only at the start of a long road but I have to keep reminding myself of that.

Thank you everyone for posting and making me feel better - don't know what we would all do without each other sometimes!

feelingold Mon 18-Apr-05 16:00:40

When I first started out on the fertility treatment it is like you say, they give you clomid, they say this works for most people and you think great this is going to work, what they don't tell you is that you have to have 1 tablet per day this month, oh that didn't work but we will try 1 tablet per day again, then when that doesn't work 2 tablets per day and so on and by the time they have decided this isn't going to work you have wasted 9 months.
Then the injections start, 1 ampule per day, then 2 per day and so on. Getting the drugs right can take ages as they do not want to overstimulate, you just need a hell of a lot of patience, but I think if they told you this right from the start, your expectations of these drugs wouldn't be so high.
It will happen for you I am sure, its just a matter of when.

MeerkatsUnite Mon 18-Apr-05 16:26:21

Hi

I have PCOS and was diagnosed with it back in 1997.

I became a parent as a direct result of a keyhole surgery operation called laparoscopic ovarian diathermy (its also known as ovarian drilling but its not drilling in the usual sense of the word).

I was not given clomid as my LH levels were too high for it to be given to me. In my case clomid would therefore not have been helpful.

Keep talking with your consultant and make sure you are seen as often as possible by the gynae unit. You ought to be followed up regularly.

Generally speaking a person should not be left on clomid without any form of monitoring as there is no way of knowing if clomid is actually working to its best effect.

PCOS is not an absolute barrier to conception but it can become a long slog. Your situation is not entirely hopeless believe me. If clomid does not work after six months of being on it there are other options open to you.

There is a UK based charity for PCOSers - its called Verity. Their website address is www.verity-pcos.org.uk. Is worth a look-see.

I wish you the best of luck - don't give up!!!.

runtus Mon 18-Apr-05 16:31:50

I think that is what I am just realising, that it can take ages to work and the road is certainly a long one. I know they have to be positive with you and give you all the best hope the treatment will work but in some way I kind of wish they had been more frank about it......I can take it and would prefer to be realistic than be disappointed over and over again.

Oh well, I guess I will have to just keep on trudging! Your comments have been invaluable though so thank you so much for taking the time to write. Gives us all hope!

CHUNKYMUNKEY Mon 18-Apr-05 21:46:21

I have just had some blood test results back which suggests PCOS and waiting to hear about the next step, as want to conceive. I am trying to lose weight as i am about 4 stone overweight, i have heard that this is a big factor in PCOS, i am trying to lose weight but am finding the weight loss quite slow, is this quite common? I have had one period since roughly April 2004, I have a dd of 3.8 yrs and pre-pregnancy was 4 stone lighter with regular periods. Sorry to hijack thread

RTKangaMummy Mon 18-Apr-05 21:53:49

Still fight for clomid I was way way more overweight than 4 stone

I had to fight cos I was told it would never work

well it did

and he is asleep upstairs




GOOD LUCK

edam Mon 18-Apr-05 22:15:48

YES there is hope! I'm very excited tonight have posted a birth announcement for my niece - sister has ghastly PCOS, had been trying for 8 years with ex-boyfriend, went on clomid etc. etc., pregnancy was a complete, unplanned shock.
Not sure whether it was down to her new boyfriend or dramatic weight loss or just a lucky break though - take your pick!

feelingold Mon 18-Apr-05 22:53:29

Losing weight definitely helps but is sooooo difficult when you have PCOS. My consultant told me I would find it very hard to lose weight, but anything I could lose would be a bonus.
I would also ask about the ovarian drilling, when I had it done 6 years ago it was a fairly new procedure but I think now it is a more common procedure.
Even when I was younger (and much thinner) I never had regular periods (I have about 2 per year) so they presume I have had the condition a very long time.

hunkermunker Mon 18-Apr-05 22:57:08

Runtus, did you see your consultant today? What did he say?

And also, without wishing to sound indelicate, has your DH had tests too?

runtus Thu 21-Apr-05 09:54:11

Sorry been away for work.....just got back.....

Spoke to the Consultant and now been put on Metformin as well, thinks that might do the trick. Got to take one tablet a day this week, 2 next week and three from the week after onwards.......siode effects are ghastly so far which is to be expected apparently.

chunky - have you tried doing a low carb dieat? I only ask as I was told by my GP that it would help, with PCOS being connected with Insulin sensitivity and the effect of carbs on your metabolism. Worth thinking about....

MeerkatsUnite Thu 21-Apr-05 17:30:16

No, not low carb!!. Not the way to go if you are a PCOS patient. Too hard to sustain long term.

Would instead suggest you try following a low GI eating plan. Rick Gallop for one has written such a book. There is also a cookbook written with PCOSers in mind by Collette Harris (herself a PCOS patient).

Have a look at Verity's website. Verity is the UK's support group for PCOSers. Their website address is www.verity-pcos.org.uk.

HTH

CHUNKYMUNKEY Thu 21-Apr-05 19:02:17

I have lost 10 pounds in 12 weeks and getting really fed up. I wondered if this was anything to do with possible PCOS. A few years ago i lost 2 stone in 3 months, so am finding this slow weight loss frustrating. I have an ultra sound to go to next week, have had blood tests results back and one of my hormones is very high, so hoping to get to the bottom of things soon. I have only had one period in a year. Thanks for the verity website address, shall check it out.

bubbaloo Fri 06-May-05 23:27:59

i also have pcos,am very overweight and was told it would be extremely difficult to get pg.
was on a long waiting list to have the "ovarian drilling" and the day the appointment came through i found out i was pg.we had been ttc for 7 years and now the baby is due in 4 weeks time so dont ever give up!!
wish you all the best and that book by collette harris is well worth reading aswell as another called "when the doctor says its pcos"
good luck

munz Sun 08-May-05 09:57:27

rantus - nothing constructive to add, just wanted to add my support for you as have been thinking about how ur doing lately ((((hugs)))) we will get there girl. don't give up hope. ((((hugs)))))

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