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PCOS Success stories please

29 replies

Staceyk · 06/07/2004 18:31

Feeling really fed up at the moment, Feels like we've been ttc forever (18mths) I have been told I have PCOS,and the doctor announced "it is highly unlikely you'll ever get pregnant" So wondered if anyone out there has any possitive PG with PCOS stories for me.

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WedgiesMum · 06/07/2004 19:01

ME!!

I had several years of TTC before I was diagnosed with PCOS (and my ovaries looked exactly like the 'classic example' picture you get in the leaflets about it) at the local hospital fertility clinic. I had less than 1 period per year and did not ovulate at all.

I initially tried Clomid which didn't work and made me feel funny (hot flushes and dizzy). I was then told that my best chance of success was an ovarian diathermy which I had in May 1998. After that we had to wait for one period to start trying and so I was testing to see if/when I ovulated. I then had 'regular' periods. the first month of trying I didn't get pregnant, but the second month I did and had DS in May 1999.

From then on I had regular periods, but was told that I would need another diathermy to get pregnant and the one blood test I had showed I wasn't ovulating. As we knew we wanted another child we asked our Dr to put us forward to the clinic for an appointment to go on the waiting list quite early on and an appointment was made for October 2000. I found out in the September that I was pregnant completely naturally, and had DD in May 2001.

I now have regular periods (after 20 years of less than 1 per year this is wierd), know that I ovulate and a recent pelvic scan showed that I don't have any cysts on my ovaries - so go figure that one!!!

If there is any more information I can give about the treatment I got then please let me know. I hope that this inspires you and that you don't give up hope.

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Staceyk · 06/07/2004 19:12

Thanks Wedgiesmum,
I stopped taking the pill in Jan 2003, and after 8 months of no periods went to doctors, who tried giving me Clomid, for 3 months, to no avail, then another doc worked out if I took Progestrone tablets, it would make me have a period. I was still unable to do this on my own, I then went to specialist at Hospital who confirmed I have PCOS! Didn't know much about it, still don't really so many contradicting stories! My Hospital doctor told me it is highly unlikely for me to ever have children! Out of the blue I had a period on my own in March (04) I then started Metformin, I started on 1000mg a day, and am now on 1500mg a day! and yes it is awful, I find although this is my 16th week on Metformin, I still get very bad tummy. Nothing happened in April, and then in May 04 I had another period. I don't know if it's due to Metformin or just me? However I was hoping that Metformin, would help me lose loads of weight! thats not the case, I've stayed exactly the same, I don't understand, as I'm eating a lot less. I used to eat very big meals, but since taking met I cannot consume as much, and also with the upset tummy, you'd think I have to lose weight! I was booked in for a lap & dye in June, but as I had 2 Af's they postponed to Oct. I am feeling very very depressed with the whole thing. and very scared I might never be able to have a baby. I've tried reflexology and everything!

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taramac · 06/07/2004 19:23

Staceyk I have had 2 ds's on my own - naturally!! My periods were always scanty and I never thought I would get pregnant - I wasn't actually diagnosed until after I had my first ds!

Since then I have tried metformin but hated it. I tried accupuncture and it worked for me I have had pretty regular periods for several years now even after finishing my treatment. Exercise also really worked for me - it seems to help the body kick back into action and regulate the hormones.

I have had 2 miscarriages whicih I am sure had something to do with my pcos but I have had 2 healthy ds's -so I am quite happy. Let me know if you want to talk @ it anymore - or have a moan - I'm here and I know how frustrating it is to feel that your body is not working as it should - especially as a woman.

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WedgiesMum · 06/07/2004 19:25

Oh Staceyk it really sounds like you are going through the mill with this one. I have loads of sympathy for you, it is so heartbreaking and tiring to keep putting yourself through the whole hope/BD/period thing.

Why did your doctor say that though?? Does your hospital only offer non operation forms of treatment for PCOS?? With mine he told me that the diathermy has about 70% chance of working (don't know if you know much about it but basically it is keyhole surgery where they stick red hot needled into the cysts to pop them and leave clear areas of ovary that can then produce eggs). They also did a laparoscopy at the same time which showed I had some endometriosis too. I know that not all hospitals do it and I was lucky in that my local hospital did and that the hospital in nearby Sheffield has the UK expert on this kind of operation.

Any more periods since May?? I lost loads of weight before I was referred to the hospital as my Dr told me he wouldn't refer me until I had as the hospital would only send me away until I had lost the weight (5 stones). I did it through the Rosemary Conley clubs, which I found suited my style of eating and exercising. Losing weight didn't help me have periods though. Do you have much to lose??

WMXX

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Staceyk · 06/07/2004 19:41

I have lost a bit in Feb this year I was 16 st, now I am 14 st 8lb. but at 5ft5" think I have a lot more too lose. The hospital tried to do a hycosy in Feb, where they put probe in and use ultrasound, aswell as flush fluid into you, to test for blocked tubes etc, but problem was they couldn't get tube in, they said womb to far back, and I was too tense!!! So thats when they said kinder to put me completely out for lap &dye! which I think is for them to check tubes, I guess until tubes etc are given the ok or not, then not really worth tackling the PCOS!
I sincerely thank you for you thoughts and time, it is very much appreciated

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Staceyk · 06/07/2004 19:44

No, no more periods since May, I'm trying to resist doing a pg test, but really I should wait til the end of this month, as my last 2 cycles have been 60 days.

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gothicmama · 06/07/2004 20:11

ignore your doctor I got preg with pcos and 1 fallopian tube - like wedgiesmum had diathemy treatment- also beware up to 12weeks after conception your body may reject it because of the hormones produced by your ovaries hang in there it is a frustrating procees

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hmb · 06/07/2004 20:30

Two of my friends were told that they had PCOS and that they would never concieve naturaly. They both stopeed using contraception, neither were trying to concieve at the time. They both became pregnant by accident! And one of the two has gone on to have a second child naturaly.

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bran · 06/07/2004 21:08

A friend of mine is due to give birth in about 10 days despite having PCOS, she was going to take Clomid but concieved without any assistance in the end.

I have PCOS and had IVF which wasn't successful, but there were other problems too, both with me and dh.

I have had accupuncture for my PCOS too, and have gone from having one or two periods a year to being a bit more regular. It can be quite expensive though as I had 6 treatments in a row, and I think I may need to go back for more.

Don't give up hope and stick with the weight loss, my friend who's about to give birth thinks it made all difference for her.

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lou33 · 06/07/2004 21:41

Me . I went on to have 3 children after diathermy treatment in 95.

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princesspeahead · 06/07/2004 22:12

friend of mine had one child naturally and quickly, spent 18mths trying to get pregnant with 2nd to be told she had pcos, put on clomid and was pregnant 2 months later. due end august!

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katie37 · 06/07/2004 23:58

I had to fight to get treatment as I was told I was too fat.

I changed hospitals to one that specilised in PCOS and pleaded to be just given a chance with Clomid after 3 cycles I was pg!!

My doctor was amazed.

I knew I had PCOS from teenage years. I have hirsuitism as well.

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WedgiesMum · 07/07/2004 01:48

Sorry not got back to this sooner hon! Left work just after last post and this evening has completely got away from me.

And losing a stone and a half is really quite an achievement - Well done you! What taramac said about exercise seems to make sense too, if you are eating healthily and exercising then your body is getting all the right things to kick it into behaving (relatively) normally.

From what I understand if your cycles are at 60 days it would seem unlikely that you are ovulating though. Have you done the blood test for ovulation?? It seems such a waste to make you wait until October if you aren't ovulating?? They could do a pg test before to check if you were/weren't wouldn't they?? Do you feel like the hospital are dragging their heels a bit??

Having regular cycles in a body not used to them can really knock you sideways though - you just aren't used to the ups and downs of hormones and it can make you feel really disorientated. I now get terrible PMS and can feel when I ovulate (bad, bad pain). Very very odd.

I'm off to bed soon but will check back on this tomorrow to see how you are.

WMxxx

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Staceyk · 07/07/2004 11:22

Thank you all so much for your positive stories, I really appreciate them, more than you know.
WM I have no idea if I am ov'ing I have heard that OPK are a waste of time for PCOS and not accurate at all, so I have never tried, and temping seems far too complicated. However I did get the egg white CM?? By rights I should have af about 21st-22nd this month! think I will wait til end of month before pg test, can't face dissapointment at the mo.

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malinki · 07/07/2004 13:18

Hi Stacey

You know my story, you are doing great babe, hang in there!!! I know your feeling blue , but all you have to do is tell yourself, today i'm going to have a fab day , pick yourself up and dust yourself down , we're all here for you babe!!!

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Staceyk · 07/07/2004 13:28

What can I say? Thank you so much, I feel like a complete whinger, I know we are all having our trouble, which is why we are here.
But your thoughts and kindness really helps me.
Love & luck to you all

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808state · 07/07/2004 18:53

Hi Stacey K,

Well what can I say about your doc except to say that he is talking absolute B***ks!!.

I am also a PCOS success story; like WedgiesMum I also had ovarian diathermy and conceived two months post op. Your situation is by no means helpless.

I would say one thing about the cystic follicles not showing up on the scan; they are not always visible to the ultrasound operator for one thing and can require a trained eye as well as good ultrasound equipment. The cystic follicles associated with PCOS do disappear - only to be replaced by further cystic follicles.

If you feel the hospital are dragging their heels you can ask your GP to be referred to another unit. It is fair to say that some units are far more interested and or able than others.

You will need to be persistant in order to get answers. Do not be fobbed off and keep asking questions of these people.

HTH

Hawaii

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AliP · 10/07/2004 00:34

Stacey - just keep going and ask loads of questions - i also have PCOS and endometriosis(?sp!) but my dh was one last week.
one big thing my very sympathetic GP did was 'prescibe' me a month off work to just take things easy and calm down about everything - in that month i really looked after myself did lots of exercise and ate really well (I also take 1700mg of metformin per day and understand the grotty tummy scenario very well!). in that month i conceived. keep going the metformin does become manageable and its worth it. I am now back on the clomid as well as the metformin in the hope of having no 2!!

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Staceyk · 10/07/2004 15:23

Thanks Alip
Doubt I'll get a month off work!!
Did you conceive just by using Metformin?
Good Luck with no. 2

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fells · 23/07/2004 19:51

What are the tell-tale signs of PCOS? Know about a few of them but not all.

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Staceyk · 26/07/2004 10:05

Hi Fells

Well I came off pill and didn't have any Af's went to docs who tried everything, then to specialist who discovered PCOS, other symptoms are excess hair, body & or facial. Acne. and irregular/missing periods.
If you are in any doubt do push your doc.

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malinki · 26/07/2004 11:23

Hello Fells, I have PCOS and to be quite honest, everyones symptoms can vary so much, I have very iregular periods every 29 - 72 days sometimes longer, I weigh 16 stone and am 5'8", I have a few spots but only on my forhead and because my fringe covers them its not that noticable, but what is noticeable and I am so hateful at the sight of it is, I have a dark line of hair as thick as pubic hair, running downwards from my bellybutton, I would say about 15 hairs, but they are the most urgliest suckers you have ever seen, but thats all I have, I did have a dark line above my lip, but I bleach that about every 4-5 weeks

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neetsmassi · 12/10/2004 16:42

Sorry to be dense but what is a "ovarian diathermy " - I have PCOS and am TTC. Usualy ok but feeling particularly down today - in the middle of my period and it feels like I'll never get pregnant . Whinge over

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Chandra · 12/10/2004 16:48

I was told I had a proability of one in a million to coceive when I was 25, so I simply accepted the fact that I was not going to be a mother, when DH (then boyfriend) started to be serious about the relationship, I let him know that there won't be children and he accepted it as well. Five years later the gynecologist suggested to try and we tried not because we expected to get pregnant but because we thought we could not leave wth the doubt of not knowing if we had have the oportunity of conceivig and we had let it go away... so we tried... I fell pregnant at the first try. So good luck


PS. By the way, 30% of women had PCOS, so believe me, good research has beeen done about this and in most occassions than not, it works!

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Neena · 12/10/2004 17:26

Hi ovarian diathermy is sometimes called ovarian drilling. They drill holes in your ovaries with a laser (key hole surgery). This is meant to kick start your ovaries into ovulating normally for six months or so. I had this procedure done twice and also took clomid. Each time I conceived a few months afterwards so it was definately worth the slight discomfort. The first time I had it done on the NHS the second time privately as there was a one year waiting list. It cost around £1,500 as I recall. Hope this is helpful

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