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Bus 9 - Donkey Cart departing soon, all aboard with ivf, pcos, endo, sub/unexplained fertility jump on

993 replies

Marvellouslymadmum · 25/07/2022 17:38

New thread 😊😊

OP posts:
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22
Alexis7890 · 17/12/2022 15:18

@MrsBiddy hiya I’m with the nhs in Bristol so different areas might be different. I was referred by my gp in January and had the first appointment with general fertility in early February, lots of ultrasound scans and tests all finished mid may with the HSG (tube check) as the last test and was able to move straight to ovulation induction using letrozole now moved on to injectables. Plus husband had to do 2 SAs 3 months apart so one in feb and one in may. So once all tests and results sorted then treatment was able to start immediately. I don’t know about ivf referral, do you know if they want you to go straight to ivf or start with ovulation induction? I have pcos so don’t ovulate naturally so started with ovulation induction

kerrym87 · 17/12/2022 15:27

@MrsBiddy usual weight loss stuff doesn't work well with pcos generally, I was recommended infolic alpha as a start, try looking at kym Campbell for dietary changes which are quite helpful and you can do as much or as little as you want. Its a hard journey and I still struggle but I lost 4 stone by portion control initially but thing that helped most was cutting down slowly on sugar and processed food as well as alcohol (put weight on me straight away). By having a balanced meal with plenty veg, slow release complex carbs (which I reduced my portion size a bit), lean meat and more protein it's helped loads. If I want a treat I have it but I get for example darker choc and individual wrapped ones which are easier to control. Or I go for a healthier option like nuts, fruit etc. If your thyroid is underactive and not treated properly that will make it harder for you with weight and conceiving, might be worth a gp or consultant visit, you could as to try metformin x

kerrym87 · 17/12/2022 15:30

@MrsBiddy I'm so sorry if that seems like unsolicited advice! I just know I had to do my own research for ways of helping my pcos and most clinics have bmi limit of 30, occasionally 35 depends where you are. They may be willing to try letrozole or clomid before anything more drastic x

MrsBiddy · 17/12/2022 15:43

Alexis7890 · 17/12/2022 15:18

@MrsBiddy hiya I’m with the nhs in Bristol so different areas might be different. I was referred by my gp in January and had the first appointment with general fertility in early February, lots of ultrasound scans and tests all finished mid may with the HSG (tube check) as the last test and was able to move straight to ovulation induction using letrozole now moved on to injectables. Plus husband had to do 2 SAs 3 months apart so one in feb and one in may. So once all tests and results sorted then treatment was able to start immediately. I don’t know about ivf referral, do you know if they want you to go straight to ivf or start with ovulation induction? I have pcos so don’t ovulate naturally so started with ovulation induction

@Alexis7890 thank you

I'm in Berkshire, so not sure but I will ask when the nurse calls in Jan.

I think I just read some horror stories saying a year 😱 I think they want to do HSG before medication and I'm guessing if they are blocked then it would be ivf? Not sure if I'm honest, as far as I got was internal scans (pcos) and SA (which was normal). Then told to reduce my bmi and that's it 😕.

Thank you for your reply ☺️

MrsBiddy · 17/12/2022 15:59

kerrym87 · 17/12/2022 15:27

@MrsBiddy usual weight loss stuff doesn't work well with pcos generally, I was recommended infolic alpha as a start, try looking at kym Campbell for dietary changes which are quite helpful and you can do as much or as little as you want. Its a hard journey and I still struggle but I lost 4 stone by portion control initially but thing that helped most was cutting down slowly on sugar and processed food as well as alcohol (put weight on me straight away). By having a balanced meal with plenty veg, slow release complex carbs (which I reduced my portion size a bit), lean meat and more protein it's helped loads. If I want a treat I have it but I get for example darker choc and individual wrapped ones which are easier to control. Or I go for a healthier option like nuts, fruit etc. If your thyroid is underactive and not treated properly that will make it harder for you with weight and conceiving, might be worth a gp or consultant visit, you could as to try metformin x

@kerrym87
Thanks for replying.

I am currently on Metformin and levothyroxine, the 1:1 diet is working for me, I have lost 1.5st and my cycles have gone from 40-44 to 29-31days.

☺️

Alexis7890 · 17/12/2022 16:45

@MrsBiddy did they tell you what the treatment options are likely to be? I found out quite early what the various outcomes would be but I did ask a lot of questions as I always like to know the plans! Yeah if tubes are blocked ivf would be the option(that’s what they said to me when I asked about hsg outcomes). As you have cycles I assume you do ovulate? If you are ovulating naturally I don’t know the path, I didn’t have natural cycles so started with ovulation induction. Things get moved along quite fast here so hopefully you have the same where you are x

kerrym87 · 18/12/2022 06:09

@MrsBiddy first off well done, it's so hard isn't it! I ovulated but they tried letrozole first, didn't help me but I also have endo on one ovary hubby has sperm issues so tried 3 rounds letrozole before moving to ivf. We are quite complicated though! For me it's an egg quality issue too when they've retrieved so I'm on all sorts of supplements which can help, will see in January if it's worked or not...

kerrym87 · 20/12/2022 11:07

Has anyone else's nhs clinic tested progesterone after transfer? Mine just does transfer and then say right off you test on this date. Unfortunately as I had nothing to transfer 2nd cycle they don't class it as repeated implantation failure yet. If we end up private think I'll go to town with everything as it was hard enough 3 years down the line ti badger them enough to scan and for them to figure out hubby's low count and volume was caused by a cyst partially obstructing his epididymis....

MIW01 · 21/12/2022 00:48

@kerrym87 when I went to the early pregnancy unit RE my miscarriage at end of August this year they said they would support me to get progesterone testing and be prescribed high dose progesterone when I'm pregnant again. NHS clinic wouldn't even give me value for my lining at transfer. Just said, "it's fine, we wouldn't do it otherwise," still waiting for my medical records to be posted to me. I think I'll need to have another day 21 progesterone test before we can go private

Honestly never felt so low about all this as I do right now. Floods of tears this evening and can't sleep even after sleeping pills. In a pit of utter despair.

thislittlebird · 22/12/2022 17:02

@Narwhal88 congratulations! hopefully all is ok.

I've just skimmed so haven't caught up with everyone properly. Generally depressing days continue over here, not sure whether to try to wean myself off MN for a while really. It's increasingly hard to watch everyone else succeed when you can't, I've been hanging here around since the end of 2019/start of 2020 and it's hard, I dunno what to do. We can't even try again until the summer when I'll be 40 probably, my husband has to be 3-6 months clear of a fever/virus/infection which will likely take us to May/June and the chance of success feels like it's diminishing by the month. The clinic told us the sperm were atrocious for our second cycle, basically, and we're seeing NHS Andrology in February but I'm not optimistic it'll be useful, might have to go private for that and pay again.

Hope everyone is ok, thinking of @Misty84 @Lauralozzle @Marvellouslymadmum @kerrym87 @MIW01 @Alexis7890 and sorry to anyone else I've missed. This is a really shitty time of year for the long time ttcers.

We're entertaining the in-laws and I'm hoping it'll be a nice distraction, just sad we can't give them any nice news, and neither will we be able to next year since IVF is basically a mid 2023/2024 event for us now. I probably need to stop expecting we'll ever have the good news to share.

@kerrym87 my clinic tests on the day of transfer and they had already increased what I was having from just cyclogest to cyclogest and the injectable one.

Alexis7890 · 23/12/2022 20:01

Hey everyone hope you’re all good and finding ways to enjoy the Christmas time!

I am currently 1 week into the 2ww following a trigger shot last Wednesday (they said to trigger but the follicle wasn’t looking great but they didn’t want to keep growing and overstim so the already crap odds are even more not on our side for success this time) and have been on cyclogest 3 times a day for if we have had some success, have any of you used it before? Had many side effects? I keep getting twinges on the right hand side when I sit down, jump, go for a wee so panicking it is going to be a cyst that means they won’t let us do another cycle in January!! Have had all sorts of cramps and twinges since being on cyclogest.

@thislittlebird i hope you have a lovely time with your in laws and can just enjoy the day, this time of year is rubbish but I hope you can find moments of joy in it

hope you all have a great Christmas x

kerrym87 · 04/01/2023 10:04

Access fertility have just stopped partnering with our only local clinic - so if this last nhs round doesn't work then not only will we have to navigate researching local centres without a payment/refund plan which is gona be big bucks again but if we want to use access having to travel 50 miles each way. I know people travel alot but with ME on top it's just ridiculous if it's a 100 mile round trip just for bloods 3 times a week. Anyone been able to take blood forms and get local blood clinic to do?

Narwhal88 · 04/01/2023 18:38

@kerrym87 my clinic is 50 miles away. We have no local ones. When I've needed some bloods they have sent me a test kit (like medichecks). However when it's an urgent blood test (day before transfer) I've still had to travel to the clinic. Despite working in a hospital next to pathology where bloods are taken! Very frustrating!
Do your local clinics do any payment plans etc? We are with Care and they now do their own packages like access.

kerrym87 · 04/01/2023 18:45

@Narwhal88 I also work in a hospital and the beaurocracy of arranging bloods at a different trust is stupid! Ironically I can do venepuncture but it's where it could be processed.....don't think any care clinics are any closer when we looked previously.

Narwhal88 · 04/01/2023 19:00

@kerrym87 oh that is even more frustrating for you then. Maybe have a chat with them and see if there could be another way.

Marvellouslymadmum · 11/01/2023 19:32

Hi everyone, hope you all had a good Christmas and new year, sorry for the absence, I've had a pretty busy time the last month with my sons 18th birthday, Christmas, my mum being in hospital with pneumonia my sister having her baby and still trying to find a house to move to as well! Oh and I'm currently on cd83 🙄 I did actually think that the long cycles I had before were because the clomid didn't work well on me, now I've no clue!! My partner thinks it could be stress with everything that's going on but I don't feel stressed. I don't know if it could be perimenopause but my levels were all ok when checked before, I've taken a total of 4 hcg tests in the 83 days all bfn, no results from the scan I had back in November yet and pretty fed up if I'm honest!

@Lauralozzle hi and welcome, I do recognise your user name from somewhere I think! my ovaries are usually both off in a wander when I have scans, hope you get your ivf all sorted now!

@Alexis7890 the nhs consultant I spoke to just refuses to believe I may have endometriosis or that it can be causing issues as I've had children previously (said children are now 16 and 19!)

@MIW01 that's an idea I hadn't thought of actually I may have to start looking at people I can complain to! Hope you're doing well? I too am happy to look at donor eggs if that's the way we need to go! Not sure how my partner would feel about donor sperm but it's something we will discuss when it comes to it!

@Narwhal88 wow £15k that's crazy amounts! The doc I have just honestly doesn't seem like she's interested in me at all, just says no you've had children before therefore it can't be endo even though they're late teens now and puts it down to my age! Congratulations I'm so happy for you, hope it's going well and is a sticky baby!

@anotherscroller clomid affected my cycles, but not shorter, they were normal length or longer but it's different for everyone so could've been down to the meds

Hi @Happyhappy39soon40 good luck on your journey

Hi and welcome @MrsBiddy sometimes I think these docs ar e just looking for a good reason to send us away again!

@kerrym87 that sucks about all the extra travel Again! I hope you manage to get something sorted

@thislittlebird I hope you're doing ok, I understand the 'this is never going to work' feeling, I'm right in there with you at the moment!

OP posts:
kerrym87 · 12/01/2023 20:31

So had a weird appointment at ivf clinic with nurses just prior to hopefully my next (fingers crossed) ivf cycle. Its been 7 months since I started last cycle so I feel a reasonable time gap. I can't keep on with life on hold working with babies all the time to drag this out indefinitely. The nurse was trying to ensure we were not rushing and we were OK, and described having 3 ivf cycles in a year 'hardcore'. Seemed to be trying to counsel me to leave it longer whilst trying to ensure I was actually OK . Consultant accepted covid buggered it all up and as he took me a little earlier for collection eggs weren't mature. Nurse was suggesting it can happen with too little time between cycles (was 5 months between 1st and 2nd). Got a bit annoyed but then made me wonder what is best but equally I know my body and myself. They're looking out that we're not running ourselves into the ground and breaking our body but they don't live with it. It was well meaning judgement but hindsight is brilliant and I don't think I'll wish I'd waited any longer. Anyone else ever had this?

Betsy21 · 13/01/2023 17:08

Hi all 😀A bit of a long one here, please bare with me. Currently on cycle 1 of TTC with PCOS. I am hoping someone may be able to shed some light please.I had bloods done on 23rd December due to my PCOS, they measured my PCOS and progesterone levels, however I'm slightly confused.When they took my progesterone levels on 23rd Dec they stated I was borderline ovulating and advised to get some further tests done (1 week before my next period) I'm due these bloods next Friday. My period in December was 6-8th December and Flo app states my ovulation phase was 10th - 19th Dec (ovulation day the 17th). Is it possible I ovulated late?My Jan period was 1st - 4th with ovulating phase of 8th - 14th (ovulating day being today the 13th). I've been taking OPK's since the 9th and these are all coming back low and yet to reach peak.Again is it possible I am ovulating later or is this just my PCOS playing up?Thanks!

Alexis7890 · 13/01/2023 17:32

Hiya @Betsy21 i have PCOS and have been having fertility treatment for almost a year. One big thing with PCOS is that OPKs can be unreliable as PCOS tends to cause a higher level of LH anyway. But then it’s more likely they’d say you’re ovulating when you aren’t. I’m not sure what you mean when you say they measured your PCOS with a blood test? That isn’t how it’s diagnosed and monitored? I have it quite badly with no natural cycles at all. You could be ovulating later this time. Do you usually have regular cycles? If you do I’m not sure the nhs will do much until you’ve been trying for a while (if you’re with the nhs). It sounds like you’ve only just started trying? I got an immediate referral but only because I don’t have natural cycles at all. Sorry I’m not sure I helped you!!

Betsy21 · 13/01/2023 17:42

Alexis7890 · 13/01/2023 17:32

Hiya @Betsy21 i have PCOS and have been having fertility treatment for almost a year. One big thing with PCOS is that OPKs can be unreliable as PCOS tends to cause a higher level of LH anyway. But then it’s more likely they’d say you’re ovulating when you aren’t. I’m not sure what you mean when you say they measured your PCOS with a blood test? That isn’t how it’s diagnosed and monitored? I have it quite badly with no natural cycles at all. You could be ovulating later this time. Do you usually have regular cycles? If you do I’m not sure the nhs will do much until you’ve been trying for a while (if you’re with the nhs). It sounds like you’ve only just started trying? I got an immediate referral but only because I don’t have natural cycles at all. Sorry I’m not sure I helped you!!

Hi Alexis, sorry if it's a bit confusing I just had a bit of a brain dump lol. Yeah so I've moved house and registered with a new GP and they wanted to check my PCOS levels along with progesterone levels. I've been diagnosed with PCOS for about 5 years already. With my OPK's i've just started testing this week and they've all been very low around 0.11.I got a copy of my blood results and when they tested the LH on the 23rd Dec it was sitting at 15.7 (normal range 2.0 - 15.0).Yes I have very regular cycles, always have had thankfully. Tbh I think I was just expecting to have ovulated already and was unsure if late ovulation is normal with PCOS.Admittedly I've not really been taking care of my PCOS until recently as we were TTC until now so I'm just brushing up on things.

Alexis7890 · 13/01/2023 18:29

@Betsy21 irregular ovulation is common with PCOS so it can be earlier or later or not at all. I have not at all so never have natural periods (or maybe one a year at best!) hopefully you are able to get pregnant naturally soon!!

kerrym87 · 13/01/2023 21:41

@Betsy21 I have relatively regular cycles but the opks were useless as always faint positive, had multiple surges within a cycle. Pcos varies person to person and there isn't one size fits all, however we are all prone to insulin resistance and difficulty controlling weight. The things I wished I knew earlier (if I'm telling you how to suck eggs just tell me to bugger off😅) were diet and lifestyle based. Such as a lower caffeine (helped with ibs), definitely reduced alcohol and a diet which has a little less dairy(helped with spits and body hair) reducing but still having a bit if you want it- anything with added sugar (biscuits, cakes, choccie etc) .Focusing on plenty of veg/fruit, protein and slow release carbs, eating regularly can help, stopped my blood sugar swings and I lost 4 stone and it stayed off. Stress plays a major part for a lot of people and again affects blood sugars, cortisol and insulin, I had awful anxiety which is much better with all these changes. I did one thing at a time though as its too much too do all at once. Fertility clinic suggested inofolic alpha as well but thats expensive but evidence it helps.
What's your FSH to LH ratio as thats a good indicator of whether your hormones are out of balance? I had letrozole before ivf but I was ovulating, my issue is egg quality. I think you could ask for referral to fertility clinic with known pcos but you probably won't get a referral until you've been ttc for at least a year -we got the referral then despite nor having confirmation of pcos, endo or male issues x

Betsy21 · 14/01/2023 23:59

kerrym87 · 13/01/2023 21:41

@Betsy21 I have relatively regular cycles but the opks were useless as always faint positive, had multiple surges within a cycle. Pcos varies person to person and there isn't one size fits all, however we are all prone to insulin resistance and difficulty controlling weight. The things I wished I knew earlier (if I'm telling you how to suck eggs just tell me to bugger off😅) were diet and lifestyle based. Such as a lower caffeine (helped with ibs), definitely reduced alcohol and a diet which has a little less dairy(helped with spits and body hair) reducing but still having a bit if you want it- anything with added sugar (biscuits, cakes, choccie etc) .Focusing on plenty of veg/fruit, protein and slow release carbs, eating regularly can help, stopped my blood sugar swings and I lost 4 stone and it stayed off. Stress plays a major part for a lot of people and again affects blood sugars, cortisol and insulin, I had awful anxiety which is much better with all these changes. I did one thing at a time though as its too much too do all at once. Fertility clinic suggested inofolic alpha as well but thats expensive but evidence it helps.
What's your FSH to LH ratio as thats a good indicator of whether your hormones are out of balance? I had letrozole before ivf but I was ovulating, my issue is egg quality. I think you could ask for referral to fertility clinic with known pcos but you probably won't get a referral until you've been ttc for at least a year -we got the referral then despite nor having confirmation of pcos, endo or male issues x

Thank you for the response it's been really helpful. I have regular cycles with the average length being 26 days, I thought because I had a regular cycle that the OPKs may work since they were regular.

I'm unsure of my FSH LH ratio? How would I work this out do you know? My FSH levels from my bloods were 6.5 u/l and LH was 15.7 u/l

anotherscroller · 15/01/2023 07:49

Hello everyone. I find your messages so interesting to read. Thanks for this thread.
Still on IUIs over here. Does anyone know if there is anything that can be done to make them work? I mean, the (good) sperm is put in, then I get ovulation pain four hours later… then nothing. My FSH (is that it, the egg one?) is “better than it normally is for my age” (I’m 33). Why oh why doesn’t it work?
thank you. Ttc number 2 14 months now.

anotherscroller · 15/01/2023 07:49

(I’m on monitored cycles with letrozole and ovitrelle. Doc says everything is working as it should be)

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