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

@mrs biddy I'm sos pray it is such a postcode lottery. Someone on here ticked over that age bracket whilst undergoing investigations with clinic and they didn't tell her either. As well as gaia there are access fertility who do a similar money back scheme. Well done on weight loss, its so hard!@Bookworm35 you can ask for a copy of referral to be sent I imagine wait times are correct due to population getting bigger and hospital clinic resources not. I would make sure its for fertility clinic as thats more specific and less people tend to get referred, gynae covers a massive list of issues and age ranges.
It was about 3 months from referral before I was seen at the clinic (this was middle of covid so less people being referred) had my lap/endo removal and checked my tubes in the march. Had Letrozole from about June, 1st ivf cycle Jan last year. Unfortunately it is a long journey but if you're on the slightly older side with identified issues once investigations are done if you need ivf you'll be propritised. I went top of list due to pcos, endo, I was 34 and hubby had male factor issues

@MrsBiddy That’s rubbish about NHS criteria. It’s a bloody postcode lottery! Well done on your weight loss so far! That’s no small feat!

I hope everyone is ok. I’ll catch up properly later on.

After down regulating for 5 and a half weeks I have finally down regulated so hopefully I’ll start Stims soon!

@Bookworm35 you could email the GP surgery to ask specifically what the referral was for - he could have just referred for infertility and possible endo which would cover it. GPs often don't have a clue about these things. There is a lack of training on women's health in general, it's terrible. I don't know enough about PCOS but I think some other ladies on this thread do. If you have very painful periods it could indicate endo. Often for endo they fob you off with IVF but really you should have surgery to remove it. Unfortunately you often have to advocate for yourself and push doctors for investigations or answers, don't be afraid to do this. Fight for what you think you need and make sure you understand everything.

Sorry, still getting the hang of this. This was in response to @Narwhal88

@Betsy21 what would the criteria be? Apparently when I phoned the referral phone number, they said the clinic had reviewed my referral and classed it as 'routine' and therefore I had been put on the waiting list.

I did ask the doctor at the time whether it was for fertility too but he didn't really give me a straight answer and because it was over the phone, it was a little difficult. I was hoping the appt would be sooner so I could ask them questions. Tbh my GP didn't seem to really know much about any of it.
I've always had a lot of pain with my period but also ovulation pain and weird twinges and things throughout my cycle. My cycles are generally quite regular and I thought pcos cysts tended to be smaller and fluid filled?
I have previously tracked using both opks and bbt but haven't for a few months as it was stressing me out so much!

@Bookworm35 referral for gynae and fertility are often 2 separate things so check with your GP what they have referred you under. If only 1 then get them to refer you for the other as well. I was referred to gynae for endo and it took a few months to have my first appt but been waiting 2 years for a laparoscopy to actually diagnose it. It very much varies on the area. I went private for a consult (£800) and they found out exactly where the endo was in a day. However private surgery (lap and excision) is between £5-20k.
Cysts could indicate PCOS, do you have any other symptoms and do you track ovulation?

Hey, orry youre going through this. I'm not entirely sure if the wait time is correct but I'd imagine it may be due to the ongoing issues with the NHS with backlogs etc. Your gp may be able to do an urgent referral if you fit the criteria.

@MrsBiddy costs vary for ivf depending on clinic and your needs. It's worth doing the investigations first. I assumed your partner has been tested?
I would say probably £4-10k a cycle but you can get packages such as refund if you don't get a baby and multiple cycle packages. Gaia family also provide a payment plan so worth looking at. There are definitely options.

Hey, looking for some advice and to vent really, I'm new to posting on forums, although have followed them for a while.
I'm ttc #1, cycle 16. I've had two ultrasounds that my GP ordered which found complex cysts on my ovaries, they are querying endo since it runs in my family.
The GP referred me to the gynecology clinic at the hospital (would this be for fertility also?) But I've just found out the wait for an appt is 20-25 weeks. Does this sounds right? Should I be questioning it?
TIA

@Narwhal88

Yeah ☹️ it is bullshit 💩

I'm lucky in the sense I have paid for consultations and I've just paid privately for Hycosy. We do have savings, but not sure roughly a cycle would cost.

Im having my Hycosy next week, so I should have a better understanding of what steps are next.

I'm 36, so don't want to mess around and wait ages.

My bmi was 39.5 and have got my bmi to 35.1, privately bmi of 35 and under is allowed.

@MrsBiddy hey I just had a look for you for the criteria for your area just to double check. It is correct in your area the BMI must be under 30 and you have to be under 35 years to be referred. Which is just such a load of bullshit in my opinion. It's so wrong that it's a postcode lottery. Most areas the limit is 40.

fundingrequests.scwcsu.nhs.uk/wp-content/uploads/2021/06/011k-TVPC11g-Assisted-reproduction-services-v3-1.pdf

You could appeal and ask for an IFR (individual funding request) but I would imagine it would likely get rejected.
I'm sorry. Do you have the means to go private?

Hi all,

I had a fertility call with the nhs nurse today. Im left feeling very depressed. It's taken my a while to get my bmi down to 35, to have a Hycosy done.

I asked if my tubes are blocked and if that would mean ivf, she said no.

I thought oh it's probably because I need to be under a bmi of 30. She said correct but you wouldn't qualify for ivf funding because you are too old as you are 36.

Now at no point throughout any of my previous appointments was this made aware to me 😔

Now I guess it's private 😔

I fall under west Berkshire 😢 and I feel so upset about it all 😢

Anyone else experiencing or have experienced this? X

@Marvellouslymadmum I have normal testosterone but get lots of body hair, spots on face and back, struggle with weight, family history. It can usually be seen on ultrasound if ovaries appear pcos, think you need 2 criteria out of 3 to be diagnosed. It's stupid too as endo grows over time and just because you had kids ages ago doesn't mean to say there isn't a problem now, can you see someone else?

Just had baseline scan and bloods yesterday and progesterone is 2.6 I think, fsh is now 8.4 oestradiol wasn't back by 5pm despite having done 11am. Baseline scan shows 18 follicles which is about half my normal. Looks like we'll have to rescan etc next month but consultant just said its up to me if we go ahead however, still awaiting some results which may change his mind....nurse said results aren't bad but not great either and not my normal. I kind of hoped he'd say a straight yes or no. I'm not a specialist so bit annoyed if its a bit meh and expected to make an informed decision!
Think we're going to leave it this cycle but yet again were just stuck in limbo. Hard to admit too maybe I would benefit from more time as body clearly telling me it's not recovered yet 😔

@Betsy21 it's zita wests book on assisted conception, its heavy and thinking about how slow royal mail is.....would you like it sending or buy it yourself as they're pretty cheap second hand? Either way is fine by me.
I had letrozole but i do ovulate so it made no difference and we have male factor issues as well, for me it's egg quality. you can look at it starts with the egg as it offers many areas to help improve egg quality. Investigations they tend do also are flushing tubes with dye to see if there's a blockage for example, sometimes camera in belly button to see if any endometriosis, sometimes camera in womb. Also tend to do vaginally ultrasound of ovaries too

I managed to find my ratio via the premom app which is saying 0.11 that being the highest its gotten to in a week. Has the doctor provided you anything to help with ovulation? Oh that would be fab! Thanks very much! X

@Betsy21 I can see there that your lh (which is the hormone to cause ovulation) is more than double your fsh (which stimulates eggs and follicles to mature) which means your body doesn't respond to the usual lh surge and needs alot more. This is common in pcos, I have the same. As its always in high levels of lh in pcos opks are very unreliable. The best thing I use is monitoring bodily signs like ewcm, basal body temp and cervix position but it can only really confirm when you definitely have. I have a book which was quite helpful for that if you'd like me to send you it x

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

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.

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

@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 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!!

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.

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!!