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

[Marvellouslymadmum]

New thread 😊😊

@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 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 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

@kerrym87 I sound very similar to you in that I normally have regular ish cycles and clomid didn't work for me, I get multiple surges on opk and my fsh was half my Lh when tested in March 2021! I did originally suspect pcos but they ruled it out as I have fairly regular periods and testosterone tests came back normal, I'm now wondering if I have a bit of both pcos and endo!! 🤦🏼‍♀️

@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 😔

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

@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?

@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.

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

@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, 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.

@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?

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!

@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.

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

@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.

@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!

@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

@kerrym87 thanks, I need to get the report for my last ultrasound so I'll ask them for the referral at the same time and see what it says. I'm only 27 so not expecting to be prioritised but would have liked to have some idea about next steps!
@Narwhal88 I'll definitely fight my corner, my mental health has been shot through all this so I'm not scared to really push for myself anymore. I've done quite a bit of research so hopefully this waiting period I can arm myself ready for my appt, whenever it may be!

@kerrym87 I struggle with my weight, I have had a few ultrasounds but they can never see my ovaries! One of them just about managed to locate one last Tim right up out the way but couldn't really see it properly, which I think is the endo that's stuck them up out the way! I've got an appointment Monday but with the same gynae doc again, I definitely would like to see someone else though!
That's very frustrating about your dr not giving you a yes or a no! They don't seem to understand that we need the guidance 🤦🏼‍♀️

@MrsBiddy sorry to hear you're having issues, my area is up to age 36 as well, I wouldn't be eligible anyway as both myself and my partner have children from previous relationships but none together. The postcode lottery is ridiculous, it should be the same criteria for the whole country!

@Bookworm35 hi and welcome, I was referred to the gynaecology department for fertility and was told it was a 33 week wait until I could get an appointment and then up to another 12 weeks for the actual appointment in my area! But it actually was a lot less than that and I had my first appointment about 6 months after I was referred.

@MrsBiddy so sorry to hear NHS screwed you over too. They way they go about things is disgusting. Investigations took so long for us (went to GP aged 33) that I turned 35 (the cut off) before treatment started. Even though we highlighted the age concern and pushed and pushed our GP she told us as long as they received referral before I turned 35 we'd bed fine - GP was wrong! I got a phone call from consultant 1 month after my 35th birthday to be told we weren't eligible for NHS funding because I was 'too old' now (over 35) then ge went straight into asking how are we going to pay for our treatment!!! We moved GP surgery 5 miles down the road where the age limit is 40.

So sorry to hear that so many have been screwed over by the postcode lottery 😟

@MIW01
It's so unfair 😞 I'm struggling to find out what areas in the south that do fund for over 36? I'm in Berkshire, I know someone told me Wiltshire does.

@MrsBiddy im in the north Bristol/south Gloucestershire trust and they do up to 40 I think

@MrsBiddy yes. Wiltshire.

I've just booked my day 5 and day 21 blood tests. Hoping AF is on schedule for this! But GP says NHS doesn't fund AMH - wtf?! Anyway, I'm waiting for Access Fertility to complete their medical review and for TFP Wessex to contact me.

I am in so much emotional pain with all this atm. I am so ready for pregnancy and a baby now. I just want to skip all this testing and medical BS.

@MIW01 that’s very relatable, I’m more than ready and feel like I’m running out of time. If I’m honest I feel like I’ve passed the point I expect this to work for us. I got my first grey hair, I’m 40 in a few months and we can’t even try again until my husband has had various procedures and we’ve waited four months. Maybe I’ll feel different when we can try again. In the meantime I’ve got months of tests ahead, starting with immunes probably.

I’m off to work at an event and I’ve been told we’re not to stress out the heavily pregnant woman I’m working with. Cool cool cool. Love that for me.

Can confirm NHS won’t do AMH unless you’re at the IVF clinic, at least in my experience. I’ve also been through hell with them and now I’m having hell with private, but this time because the first private cycle we had was a disaster.