TTC with PCOS (Thread #2)

[RoseBud2015]

If you have been diagnosed with PCOS and would like a small group of very friendly ladies in the same position as you to talk to, then this is the thread for you!

You can find our first thread >>>>>>>>> HERE

You can find the stats >>>>> HERE

Chandelier I am so sorry to hear your sad news. You are an inspiration in perseverance patience and strength.

Rosebud what a nightmare week. When do you have your scan booked for? Sounds like you have a really good plan if this cycle hasn't worked but it's so disappointing when the goal posts keep shifting.

chandelier I'm so sorry - please know that we are all thinking of you take it really easy. look forward to hearing from your when you're good and ready.

this site hack has been a right pain in the arse!

damn phone!

the gp appointment was a huuuge waste of my time - it could've been done over the phone last week. formalities, got to go for blood tests 7 days before I'm due on etc etc (which is REALLY easy when you're irregular ) and a dildo cam scan. All fun things. I've had all this over and over - I really miss my old GP. She was just so no-nonsense about everything. bottom line is, I'm glad I didn't wait until November (the cut-off date I gave myself for no apparent reason ) to get help as this is going to take a while. If I didn't have DD, I would be finding this a lot harder. So I just wanted to say I really admire all of you - your strength and perseverance is incredible and I truly hope all of you will get your babies. fuck PCOS!

pontygirl I love your kick ass attitude

rosebud I didn't mean to hold back, it just didn't seem right to post my news after yours and chandeliers updates.
My results were good - 63 - highest I've ever had. Apparently anything over 30 means I ov'd so good news. However, I now have low level cramping and think AF is on her way I'm on cd 30
I'm not sure if I'm over-analysing every niggle and twinge because I feel so anxious or if I have just learnt how my cycles work and am just better at spotting the signs. And I am of course fretting that we didn't dtd enough, although every other day for 2 weeks almost broke us.

Fingers crossed for some more good news soon

Rosebud massive hugs and keeping fx for your scan. As for plan B, I hope you don’t have recourse to need it, but I’m on a couple of threads at Fertility Friends and there are several women who’ve travelled to the Czech Republic and sing Reprofit’s (and Gennet’s) praises

chandelier thinking of you. You’re in all our thoughts xxx

Ponty fuck PCOS indeed! it’s not fucking fair. Why do ‘bad’ people get knocked up just by looking at a fella and we have to struggle so much for what seems like an impossible dream. I know you’ll all get there!

IsIt it sounds like you guys did everything you could, and your body did brilliantly by laying that egg! I have no doubt you’ll be getting your BFP before long

Well, will see what my consultant has to say when I see him in a fortnight, but I’ve read some really interesting stuff from a fertility clinic in NYC that specialises in treating women with diminished ovarian reserve (DOR) and premature ovarian ageing (POA), and they say they treat a quite a lot of slim women who were given a lean PCOS diagnosis when younger, and who then come to the clinic in their 30s with POA. They call it ‘burning out PCOS’ - the ovaries got used to being in a hyperadrogenic state (too much testosterone) when younger and burned through eggs at a faster rate, and then presenting with a hypoandrogenic state (too little testosterone) when older. It seems to be a particular genetic mutation, and it all pretty much seems to fit exactly with what’s happened to me. There’s one study that even says they start to see patients presenting with DOR at around 32/33. I am 33! When I presented as PCOS I had acne, and my testosterone was in the middle of normal range - now I have no acne, and my testosterone was barely detectable in my recent bloods.

So if I have this shitty gene, I’ll know it was just my lot, and the tests weren’t wrong, but we’ll know what we’re dealing with. And apparently androgen supplementation can make a significant difference. Oh, and this gene also apparently guarantees autoimmunity which makes implantation less likely and the risk of miscarriage much higher, without aggressive immune treatment. Brilliant.

I’m fucking fed up. I got dealt the shitty hand of having to live in constant pain after breaking my back. I got dealt the shitty hand of epilepsy. I got dealt the shitty hand of what I thought was common garden PCOS but turns out to be the shittiest kind with the worst prognosis. I wish my Mum was around so I could talk to her about this, but she died 3 years ago, and it breaks my heart that she wasn’t there for my wedding, and if we do ever manage to conceive, that she’ll never be able to share in our family.

I’m sorry to be such a moaning minnie, I’m just devastated that things have turned upside down from where I thought we were. I thought my problem was that I didn't ovulate. Not that my body was secretly burning through my eggs and that my body would attack any successful attempts at conceiving. The cards seem so stacked against me. Rant over

bananafish you have had the worst hands dealt to you and I can only say how very sorry I am that all this has happened to you, especially losing your Mum which is devastating.

What I can tell you from the short time I have spent on this forum with you is that you are a really strong person, and you will get through this. Most importantly you are allowed to feel angry and upset and pissed off that this is happening to you, but you also are someone who will keep looking for solutions and not give up!

Finally, you have your other half, he is there for you and loves/supports you, and that is really special. You'll get through this.

And when it is all just too damn much, you have us xx

bananafish I will rant with you

AF started about 20 minutes ago. I was in a meeting and I felt it. So now I'm in the toilets trying desperately to put my face on so people can't see that I've been crying I'm not doing a very good job of it either.

This whole ttc thing is shit. And heartbreaking. I just had to tell DH and he's so lovely that I'm crying for him too. It's his birthday this weekend as well.

Banana and Isit

None of us seem to be having a very good time of it at all at the moment.... we need a BFP from someone to get us all back into a positive frame of mind.

Isit Great news that you ov'ed though, and a nice strong ov at that! You are one hurdle closer x

Ponty Loving your attitude- yes FUCK PCOS! lol

Dollface Your words are always so supportive and heartfelt- you are fab x

I'm so sorry for my stroppy pity party - I was having a v whinging cow moment! You're all so lovely and I can't think of a nicer (and more deserving of BFPs!) group of wonderful women.

You're all so lovely and I appreciate your kindness and your patience with my poor-me rant!!

Rosebud you're the most incredible cheerleader for this group - what would be do without your fantastic positivity and amazing support?! I hope you're feeling less spacey and am keeping everything crossed for good news at your scan, we're all rooting for you xxx

Yes we def need a BFP soon!!

dollface echoing rosebud - your words are so moving and it means so v v much. How are you feeling? Hope everything is going well and your sticky bean is snuggling in nice and tight

In the mean time I LOVE ponty's FUCK PCOS. I might make a Zazzle.co.uk FUCK PCOS mug for my green tea! Though as I don't have any kids I appreciate it wouldn't be the most family friendly crockery to have in the house

IsIt huge big sloppy hugs lovely. I'm so pleased you ovulated and so so hope that next month you'll be getting your BFP. My AF is due tomorrow and had a temp drop this morning so I think the witch is on her way. Sounds like we're cycle buddies! Hope we're celebrating your BFP with you this time next month

Thanks for your infinite patience - and for indulging my whiny poor me moment.

And huge massive hugs to you all. Onwards!!

Xxx

banana so sorry to hear your shitty news. And yours isit.
Dollface is completely right and you are entitled to feel how you do. It's encouraging that there is information out there about your condition which means you are not alone and there is hope. This whole process is long winded, and I think we just have to remember to try and not put our lives on hold whilst we are going through this. Easier said than done I know, and I don't follow my own advise either!

Big waves to you all

Ahh you guys blush

I'm so glad we have this group, there really isn't another one like it! And I mean every word

I'm doing good thank you for asking. It's all a bit surreal and I am trying (failing) hard to not look at all the things that could go wrong on mn. So far so good and bean is sticking. Made it to 8 weeks 3 days. 12 week scan on 15th Sept so fingers crossed.

I can tell you all that the knicker checking doesn't stop at your BFP haha. I am like a woman possessed. Between that and checking my boobs still hurt every few hours my colleagues at work must think I am mad!

x

doll face completely normal crazy pregnant behaviour! do what you have to do to keep yourself ticking over until your scan.

is it so sorry AF got you it's so fucking disappointing when it comes. Here's to the next cycle BFPs ahoy hopefully!!

Hello lovelies. Your kind messages have got me through four very tough days Thank you all

You know this had been a rollercoaster? Well, it carried on and is only just over! You really couldn't make this up. Honestly. The short version is: surgical management on Tues... couldn't locate anything but tore my uterus. Scan no.5 found the mmc (10 wks pg, 5 wks size ) located in my totally retroverted, flexed uterus right behind my bowel!!! (Never knew!!) Put on antibiotics for tear in uterus (which was torn because it wasn't where it should be!) Second surgical procedure undertaken using ultrasound guide with senior consultant/consultant. All fine and discharged with oral antibiotics. Oh, then I had an allergic reaction to the drugs today so was readmitted!!!!

I am hoping that this is the end of this story and well done if you read this far (there was more!!)

So, I have new knowledge about my dodgy body (banana you know that feeling, I know!) but I have a new, pretty amazing consultant who has given me an awesome plan for the future (no ttc for 3 months though) and will he keeping an eye on me. He was amazed I'd had relatively few problems ttc the pregnancy (didn't mention the SI ) given the PCOS and the awful state/position of my scarred and twisted/upside down/back to front uterus. This gives me hope for the future.

Will now go and catch up on your news

Dollface Knicker checking is perfectly normal. Not long until your scan now

IsIt Boo hiss to the witch arriving but great news about OV. Bring on the next cycle eh?

Ponty Loving the fuck PCOS attitude If my children weren't able to read, I'd get one of those mugs that banana posted about! Shame you had a wasted appt (and a crap GP!)- it all just feels like you've lost time, doesn't it?

banana You carry on bringing that pity party to us and we'll share in it and help drown those sorrows. You have had so, so much to deal with in the last few years and it just seems to keep coming at you! It sounds like you have an amazing DH though; keep talking and taking care of each other.

Blimey Rosebud! Went back a page and read about your higher dose clomid experience! You poor thing I had a migraine the day after my highest dose of SI... Thought it was a coincidence at the time but now wondering if it was the SI I am so sorry that you had to abandon the cycle but hope that the four days might have done something. I agree that the funding thing is wrong and have also heard good things about ICSI abroad. Keep talking to us lovely

well there was me moaning about how long everything was going to take - I got a call yesterday saying hey had a cancellation today for a scan and so I'm booked in! Feeling a little nervous for no apparent reason. I'll let you know how it goes!

update - scan was fine, polycystic ovaries still going strong everything else looked fine though. She said they weren't the worst she'd seen, more like "fair to medium", whatever that means

That's great ponty now you have got the ball rolling. do you have a consultants appointment scheduled in?

You have to take what good news you can get eh? Fair to medium is a start Ponty Glad all went well. What next?

thanks Freddie and chandelier - got to wait for day 21 bloods now aka the impossible request! Even though I temp sometimes it takes at least a week to properly confirm ovulation and even then I may not ovulate and so knowing when 7 days before my period will come is something of a tall order!

how is everyone

That's hard ponty. Good luck! I am fine had my hsg injection on Friday as there was one follical but been struggling to Dtd as much as the nurse said. She said to Dtd Friday night Saturday morning and Saturday night and Sunday night????

But morning is impossible as ds is up at 6. Then last night the pressure got to dp a bit so we didn't manage it until. 4am. Pfffffttttt I hope it's enough.

Also have the delightful progesterone pessarys which are .... A bit grim.

Otherwise good. Day 21 Blood test on Friday. Trying to have no expectations at all but it's hard.

Hi. Firstly, sorry for my dad rant the other day. I cried on and off through cd1 but now, on cd4 I'm feeling kick ass!
AF seemed to have miraculously gone away today after being very heavy for 3 days. Tis very strange.
I'm ordering pre-seed today and keeping everything crossed.
Also found out that my friend who has been ttc for 4 years has started her injections ready for IVF.

Sorry I haven't commented on people's updates - internet is a bit dodgy where I am and I can't go back to check names etc!

chandelier blimey, that's an awful lot to take in! Really hope you're feeling better, and being kind to yourself after going through so so much over the past weeks.

Ponty keeping fx for you! It’s a bit of a tall order to ask you to predict 7 days before your AF is due when you don’t know when AF is due?! Hopefully OPK +charting should help you pin the bugger down…how quickly can you usually get an appt for bloods?

Freddie best of British! I was only told to DTD twice after trigger. Triggered Wed afternoon and consultant said Thu and ideally Fri as well. (I didn’t get a BFP but he said it was v v unlikely anything would stick as my lining was so thin, so was really just a ‘just in case’ go at catching it!). Sounds like your nurse was covering all the bases - am sure what you did was more than fine.

IsIt and she’s BACK in the game! Here with the pom poms cheerleading you on

Afm, I’m in much the same situation as last month, AF arrived in a manner of speaking, but (as the consultant said would likely be the case, as my lining was so thin) it’s hardly really a proper AF at all. In theory not supposed to count spotting as the start of AF, CD1 is supposed to be the first day of red flow. Except this month is like last month, where it’s just a bit of piddly brown spotting. I had maybe 5 mins of something vaguely approximating a period yesterday, so as things are petering out I’m gonna have to count yesterday as CD1 and go for my repeat Day 3 bloods tomorrow.

Will get all the virology bloods done while I'm there - so quite a few vials in one go!

isit you are perfectly entitled to rant! don't apologise! rant and rant if it's what you need. here is the perfect place.

banana when is your next consultant appointment? I haven't even had the bloods yet and I just feel so irritated! What bollocks this all is.

Ponty yep, bollocks is exactly the word! FUCK PCOS! I'm seeing the consultant on 3rd Sept. Terrified about getting results of tomorrow’s bloods in case my FSH has gone from ridiculous to stratospheric. I don’t know what kind of effect Clomid might have had - it’s designed to get the body to pump out more FSH so I don’t know if it’ll have any hangover effect, and have sent my FSH through the roof.

I don’t know if he’s redoing AMH and tbh I sort of don’t want to know that either. As things stand, my levels are so dire, I wouldn’t be eligible for NHS funding - and quite a few private clinics wouldn’t even accept me, as I’d likely bugger their stats. I think if it's got even worse I would lose any shred of hope, so would rather bury my head in the sand...

To rub it in, my local trust is actually one of the best in London for IVF - they give a whopping 2 fresh cycles - plus all viable frozen transfers. They also don’t have any restrictions on either partner having children from a previous relationship - not applicable in my case, but always struck me as one of the most unfair parts of many trusts’ funding criteria. But even if we had been trying the requisite 3 years, my FSH is too high and AMH too low to be accepted. And in 3 years time my levels can only get worse - I might well have dried up altogether! So there’s no chance of ever getting NHS funding for IVF unless my ovaries suddenly find a time machine