PCOS... losing hope

(27 Posts)
starrynight123 Sun 10-Nov-13 17:28:32

Hello,

I'm new to this site but finally signed up because my partner and I have been trying for a baby since last year and are starting to lose hope because nothing has happened for us. I have PCOS and only have around 5 periods per year (if I'm lucky) and have a whole bunch of tests lined up, including an ovary/womb scan (a couple of years back when I had my first scan, some growths were found) and I'm terrified.

I know in the scheme of things that 1 year is virtually nothing, but I'm now 33 and am scared that it will all be too late for me.

To top it all, some of our good friends have just announced that they are pregnant and although I'm so happy for them, it just made me feel even more sad and so low.

Reading this through, I appreciate it sounds really silly but I am feeling more and more depressed about it :-( I didn't expect conception immediately, but as more and more time is going by, I'm just feeling more and more desperate and scared :-(

Has anyone else experienced PCOS and does anyone have any advice?

I'd appreciate any comments.

Starry

woodwaj Sun 10-Nov-13 18:23:06

Hi! Your post is really similar to how I am feeling at the moment.

I am currently taking my 3rd round of clomid this month will be month 15 for me! I had one natural period in a year!!

I think sometimes the only thing we can do is vent!!

Are you seeing a GP or anything?

Tigresswoods Sun 10-Nov-13 18:27:11

I was you 4 & a half years ago. We got there in the end with Clomid. Have you been referred to a consultant yet?

woodwaj Sun 10-Nov-13 20:30:13

Hi tigress, how many rounds of clomid did you have in the end?

Tigresswoods Sun 10-Nov-13 21:12:32

It was month 3 & I thought we'd DTD too early & DH was then "too tired" to DTD when we were supposed to.

Luckily I was already upduffed.

Thought it would never happen. TTC with PCOS totally sucks.

woodwaj Sun 10-Nov-13 21:44:02

Im the opposite I think I ovulated earlier than I thought i would on round 2 and possibly missed it! We are giving it all on this last round.

Hoping I get some luck this time!!

everythinghippie29 Mon 11-Nov-13 00:10:56

Hiya, so sorry you are struggling at the moment. thanks

I was diagnosed with PCOS about 6/7 years ago. Generally I suffered initially with severe abdominal pains and heavy periods to just nothing period wise at all for two years. Last year I had 2 periods and the odd cramping.

I genuinely believed I would not be able to conceive, I found out in April this year I was pregnant and am now due in 4 weeks, despite not having any physical period 4 months before conception.

I'd say speak to your Dr about your concerns, but really my post is to just really give you some hope that good things can happen despite PCOS and ovulation issues.

Good Luck.

starrynight123 Mon 11-Nov-13 20:00:32

Thanks all so much for your comments. I really appreciate them.

Woodwaj - I am seeing my GP and she has just referred me for blood-tests and, once I've had those, she will refer me for the scan. She told me that I had to wait a year before she was able to do anything for me - including referring me to anyone - so, waiting all this time has been pretty hard too. She hasn't mentioned Clomid (or anything else, mind you) but I hope she will either start helping me or at least refer me to someone... Here's hoping.

It feels like such a long, lonely process and the excitement and anticipation we had at the start has evaporated. Instead, even thinking about it makes me feel hopeless, unhappy and, frankly, inadequate. My husband is being completely fantastic and keeps telling me that we have plenty of time, that it will be amazing once it happens, but it sort of just makes me feel worse!

woodwaj Mon 11-Nov-13 20:36:49

Its rubbish isnt it!!

I was lucky enough to be referred after 9 months. My GP took into account that the wait for appointments was 3 months. Now im in at the hospital they make me appointments in the future just in case. My next is 18th dec. Clomid wasn't mentioned to me at all till I was prescribed it so it doesn't mean your not going to get anything.

I had my scan in September I didn't hear back so I presumed everything was ok. Ill bring it up in December though

Florin Mon 11-Nov-13 21:50:08

I have it too. It took me nearly 2 years to get pregnant however I now have a wonderful baby sleeping upstairs. I know how hard it is and specially when everyone seems to be either pregnant or having newborns around you it really hurts. If there is a long waiting list any chance you could go private? If you try clomid first it isn't ridiculously expensive as the actual medication only costs a few pounds plus a scan mid cycle which is under £200 per cycle. Chin up it will happen but it just takes a while. However it does make them extra special when you do have them. I am so thankful ever day for my lovely baby although I do find it really hard not to spoil him rotten and he is well over a year and I still haven't managed to leave him with anyone but my husband yet!

Tigresswoods Mon 11-Nov-13 22:19:27

I second trying to go private. I was fortunate to have bupa through work & they paid for part/most of the process.

What part of the country are you in. We went to a hospital in Woking & Mr Riddle treated us.

Lottystar Mon 11-Nov-13 22:42:42

Hi Starry,

I too have PCOS and I can completely empathise with your situation. In my early / mid 20s I used to have a one or two periods a year if I was lucky but through disciplined dieting, taking Agnus Castus and exercise I managed to get my periods up to around 8 a year. Luckily I met my hubby in my late 20s and we had two babies one after the other, both conceived entirely naturally. I put on weight with my pregnancies and having decided we would love another addition to our family, we started ttc last year. I had no periods for a whole 12 months. In that time I lost some weight and sought medical advice (a) as I was having no periods at all and (b) I am now 34 so age is creeping up on me... I fell pregnant on my second round of Clomid but unfortunately miscarried a few weeks ago sad

My advice to you would be to look at your diet and lifestyle, oddly PCOS is linked to our weight etc and that is something we can be proactive about ourselves. Research Agnus Castus too - this is a herbal remedy you can take whilst waiting to try other medications prescribed by the fertility doctors. Ask about Metformin (drug that manages insulin levels in the blood, that then effects hormones and ovulation) and Clomid. Try to insist on day 21 bloods if you are proscribed Clomid, in the end my GP did mine as the fertility clinic in the Great Western in Swindon don't offer them initially, they are just happy to up the Clomid dose without monitoring how your body is responding. You can also consider acupuncture and reflexology. If nothing they will relax you and ttc is utterly stressful but I have heard good things about both for PCOS ladies.

I hope that helps in some way, good luck with the baby making, it is a lonely and emotional path when you can't conceive as quickly as you would like or expect. Try to reassure yourself that it will happen one day. It is very difficult having others around you getting pregnant and having babies but just focus on your journey and try to be happy for them as they will be for you xxx

Tigresswoods Tue 12-Nov-13 08:41:42

Oh good post. I forgot about the diet thing. I've never been over weight BUT my husband & I did follow the low GI diet when TTC. Not to lose weight but to be healthier.

Not sure if it helped or not but nice to feel we were doing something positive.

Florin Wed 13-Nov-13 10:23:04

2nd the diet. I found a low carb diet was the only thing that worked for me. I dropped from 11stone to just over 9 stone when I conceived. Weight loss even just a small amount is meant to really help.

MrsMarigold Wed 13-Nov-13 10:40:56

My SIL has PCOS and so does her sister, both have children conceived naturally, neither like medical intervention. Both followed strict diets and are into sport and took Agnus Castus. Plus her sister who only has one period a year on average - peed on those ovulation sticks every single day for over a year.

Good luck

Thisisanoutrage Wed 13-Nov-13 10:51:31

I only have about 4 or 5 periods a year and my siblings and cousins all have PCOS so presumed i'd find it difficult to conceive. I started doing more exercise and eating a low carb, high protein diet. I also started taking agnus castus liquid in a drink twice a day, I think this is what really helped. Google it if you are not trying it already. My cousins have also had success with Clomid.

Really sorry you are struggling. It will happen thanks

Hi OP, just wanted to add a tale of hope. I'm 31 and have PCOS, as do my mum and my sister. I had 14wk+ cycles and was trying for well over a year with no success. First round of clomid and I'm now 17wks with twins!

I had to demand to be referred, push for blood tests, push for scans and push for clomid. It took me marching into an appointment with a folder full of the NICE guidelines and every single one of my results to get them to diagnose PCOS and prescribe clomid - I'm not naturally confrontational but it was worth it because I was pregnant a month later.

Don't despair. I was you a few short months ago. Even if it doesn't happen naturally there is so much they can do xxx

Tigresswoods Wed 13-Nov-13 12:52:32

"Like" that post.

PinkParsnips Wed 13-Nov-13 13:08:12

Hi there, just to say your post doesn't sound silly at all..i have pcos - I only found out because I fell pg the first month after coming off the pill (quite common apparently with pcos) but had a mc and then no period again for months, went for tests and found out it was pcos.

My cycles were anything from 24-80 days.

We went for an initial appt at the fertility clinic with a view to getting Clomid - this was after 18 months of TTC. Anyway in the end we didn't need it as I fell pg while waiting for the next appt!! (now 3 days overdue!!)

I can only tell you what I did, not everyone will recommend these things and there's no way of knowing what helped us or if it was just luck but...

I took agnus castus - it regulated my cycles to 30-35 days pretty much instantly

Took a vitamin b supplement to help luteal phase

The month I fell pg I also took a selenium supplement

Used opk's - they dont work for a lot of people with pcos but they were ok for me (clear blue fertility monitor didnt work)

Went on a low gi diet - when I fell pg I'd actually started on a slightly different diet called CSIRO which is low gi / low gl.

Think that was about it!! Sorry if thats too much detail, obviously it will only help if you are ovulating on your own but wanted to add my experience as we were convinced nothing would happen without meds but you just don't know - wishing you lots of luck and everyone else thanks

MrsJamesMartin Wed 13-Nov-13 13:17:04

Never give up hope.

I have pcos, diagnosed age 19. At that time I barely had any periods, started ttc age 22 conceived at 24 had a daughter a week after I was 25. Conceived again at 28 after trying for around 18 months, am now 36 and 39+6 weeks pregnant with our third child, conceived within 9 months this time.
I struggle with my weight and losing weight is the only thing that helped me with my cycles, even 10% loss can make a real difference. I feel I am pretty symptomatic of pcos, very hairy and weight issues I've already mentioned.

Don't give up, anything is possible

starrynight123,

"Woodwaj - I am seeing my GP and she has just referred me for blood-tests and, once I've had those, she will refer me for the scan. She told me that I had to wait a year before she was able to do anything for me - including referring me to anyone - so, waiting all this time has been pretty hard too. She hasn't mentioned Clomid (or anything else, mind you) but I hope she will either start helping me or at least refer me to
someone... Here's hoping".

You will need to be persistent in order to get answers.

Not so re the waiting for a year, if you already have a PCOS diagnosis you should be referred far sooner than a year!. Infact the GP should refer you now, these tests can be done via the subfertility unit. All that's happening now will just cause you further delay.

My periods were very much like yours and I was referred to a subfertility unit after 6 months. It then took another 6 months for the appointment to arrive.

Clomid is not normally prescribed by GPs. It is quite powerful stuff so you should be monitored whilst on it preferably with both blood tests and ultrasounds. You must be monitored whilst on it otherwise you will not know whether its working or not. It is a drug treatment that should be given with a degree of caution to PCOSers as clomid resistance is certainly not unknown. It can also affect LH levels markedly, as many PCOSers have an excess of this hormone to start with clomid does not always work out well for some PCOS patients.

What can benefit you is a low GI/GL eating plan. This is also more sustainable long term than a low carb plan.

I would avoid taking anything herbal like AC, self medicating from the likes of Holland and Barrett is rarely if ever a good idea and can make some underlying hormonal problems worse.

starrynight123 Sat 16-Nov-13 09:51:53

Thank you all SO much for all your support and advice. I can't tell you how much it means to me. I've decided to try and be more proactive and less down-in-the-dumps (I don't particularly like the miserable, envious sort of person I am becoming).

I've been spending some time looking into low GI eating and am hoping to join a gym nearby (trying to find one that doesn't cost the earth... ). I am a little hesitant to start taking herbal remedies that affect my hormones in case they affect any bloodtest results, so won't be taking agnus castus etc at the moment.

@Attilathemeerkat - I didn't know my GP could refer me before a year is up. I had asked my GP about just trying to sort out the PCOS but because I wanted to do this in order to get pregnant, I was told I had to wait the year. Infuriating!!

Tigresswoods Sat 16-Nov-13 18:32:25

I bought the good housekeeping low GI book. We still do recipes 5 years on.

SaidTheSloth Sat 16-Nov-13 21:02:49

Some good advice on here OP.

It took well over 2 years and 8 cycles of clomid to conceive my DC1. It was a very very hard time.

Things that helped me cope in that time were:
Reading lots about PCOS - arming myself with knowledge I suppose. Trying alternative therapies alongside medical investigations/treatments.
Eating in a low GI/GL way.

I was surprised to find my periods regularised after I stopped breastfeeding DC1. They'd been very few and far between when I was TTC previously, without clomid. I fell pregnant with DC2 very quickly and without any treatment.

Good luck with everything.

firemansamsmam Sat 16-Nov-13 21:26:00

I totally agree with managing your pcos with diet. I had been TTC for nearly 2 years, with two MCs a year apart.

After the second MC I decided to stop getting stressed and to do something positive about it. I saw a nutritionist who advised a low GL diet, certain b vitamins, angus castus and selenium. She highlighted specific food that I should be eating (broccoli, cabbage, onion, chickpeas) as well as the general low GL diet. I cut out sugar as much as possible. The good thing about the nutritionist was she listened to my personal medical history and tried to pinpoint where the problem lay for me.

I was allowed wine in moderation grin

I did it from May-sept, felt fantastic, lost 5 lbs (I was 9 1/2 stone to start with) and got a BFP on 1st sept. Then got morning sickness and could only stomach carbs!! My body was a temple until then though!

God knows whether it was the nutritionist and the diet that helped me, whether it was coincidence or whether it was the fact that I was doing something positive and so was less stressed.

Anyway, I think it is worth giving it a go. I am not great at sticking to diets but with this one I had a very good reason to and I found it relatively easy.

ImNotCute Sat 16-Nov-13 21:33:43

Hi OP, glad you're feeling a little more positive than when you first posted.

Just a quick post from me to say I'm a mum of 2 with PCOS. Both DCs took over a year to conceive but didn't need any particular treatment, just more time.

I hope you get good news soon!

starrynight123 Wed 27-Nov-13 04:07:25

It is so heartening to read your stories, so thank you so much for sharing your experiences with me. This might sound miserable of me, but part of me still thinks it happens for other people but not me - I guess it's a pretty normal thing to think until it happens for you! Oh well.

I actually had a period last month and got some test sticks for identifying when I was ovulating. I was surprised that I did actually release LH but whether I actually ovulated, ice no idea.

Anyway, I'm going to make an appointment with my GP to take the next steps towards ttc. Do you have any advice what I should ask about?

The last time I saw her, she mentioned a scan. But is there anything else I need to get booked? Should I ask about clomid or bloodtests or something else?

I feel as though I'm going into battle, and although I know what outcome I want, I don't quite know how to get there(!)

In terms of diet and exercise, I have been making changes like 20mins cardio every other day (got to start somewhere!) and reducing sugar and carbohydrate intake while upping veg. I've also got a good multivitamin (well woman) but should change that to their trying to conceive one.

So, it's something.

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