New to IVF - looking for advice please!

[bettercallpaul]

I’m finally at the stage where I think IVF is our only chance at getting pregnant. I have never had a positive pregnancy test.

Background:
We’ve been trying around 2 years in total (had to have a break in between as I was diagnosed with Graves’ disease so it was too risky to continue trying apparently).
My left fallopian tube is blocked (no hydrosalpinx)
I have low vitamin d, low iron & low progesterone. I’m on strong vitamins for the vitamin d and iron.
I have spotting for 7 days prior to my period which my endocrinologist suspects is estrogen dominance due to my stress levels.
Partners sperm analysis was normal - no concerns on his half health wise either.
I’m 32, partner is 33.
No endometriosis or any other concerns (I’ve had a laparoscopy and hysteroscopy). Smear test is also clear.
I am slightly overweight - nothing concerning but I know I ought to lose weight.
I’ve been suffering from severe stress for the last few years (which endocrinologist suspects is the cause of my graves diagnosis).
Graves’ disease is now under control - my thyroid is optimal level but I am still taking PTU.

Can anybody please advise:

1. If anyone has any experience in the Nottinghamshire area of a good ivf clinic?
2. Will I require my blocked fallopian tube removing prior to IVF?
3. How long roughly does it tend to take for one cycle? Apologies if that’s a stupid question, I’ve avoided looking into it all in depth as I’ve been in denial for so long.
4. I suspect I’ll need progesterone - can this be taken in injection form?

Thank you so much, sorry if I’ve asked silly questions!

Sorry I don't know about 1 or 2 (although i would guess the answer to 2 is no, but it is a pure guess!) but in terms of how long a cycle takes, it's not usually long. It basically mimics a natural cycle so you'll do 10- 12 days of stims (injections), then a trigger shot to activate ovulation and have the egg collection around d14. And then if you do a fresh transfer, they'd usually transfer an embryo 5 days later. Obviously everyone is a bit different so you might stim for shorter or longer periods depending on how you respond and you might have additional meds etc. Some people also down regulate before starting stims but I've never had to do that so not sure how much time that adds on. In terms of progesterone, I'm not sure about injections. I've always had pessaries prescribed (three different clinics now) and I think that's definitely more common but there might be times where injections are appropriate/possible. If you haven't already started, I'd definitely start on some good quality supplements for you and partner. Ovum is good for women and impryl/proxeed good for men.

@bettercallpaul not silly questions, this is all a bit of a minefield and there's so much info to gather and understand!

I can't answer all your questions but on an IVF cycle, you can do a short or long protocol, my experience is short and for that you start at the beginning of your cycle. My clinic does a baseline scan and then you start the stims injections to grow the follicles for 10-14 days or so, maybe more, before egg collection. I did a freeze all cycle but on a fresh cycle, you have an embryo transfer 5 days after egg collection. After embryo transfer you do a test 2 weeks later to see if its worked Prior to starting the cycle there's a lot of variation in how long it takes to get started with clinics in terms of consultant appointments and getting set up with your protocol and meds. If its a long protocol, you down regulate with meds in the cycle prior to starting. That's a rough guide!

You can take progesterone as pessaries or as injections, I did both in a medicated frozen embryo transfer cycle. It seems a lot of people just do pessaries, they tested my progesterone and it was a bit low hence the injections as well. I think everyone takes progesterone in IVF no matter what kind of embryo transfer they do but I might be wrong

Good luck!

Hi OP,

I’ve answered below. You definitely need to get your iron and vitamin D in a healthy range before you start but sounds like you’re on that. One thing to mention is there is a lot of evidence about stress levels and success rates, both naturally and via IVF. So definitely focus on yourself and getting into a good headspace. Acupuncture has quite good evidence behind it for IVF for example.

1. Not sure sorry.
2. Definitely doesn’t need removing, I have the exact same, IVF negates the need for the tubes anyway! If going down the NHS route they may ask you if you want to investigate the blocked tube further to see if you can unblock or if you’d prefer to just go straight to IVF - I picked straight to IVF but I have a very low ovarian reserve and my partner has poor sperm morphology.
3. per PPs, from start of scans/stimulation meds to transferring and embryo ~17-20 days, preg test 10-14 days later. Note that they may get you to ‘down regulate’ the month before meaning you take pills for about 2 weeks before you start to time your cycle correctly.
4. progesterone comes in injection and pessary forms. If you are doing a fresh transfer (ie not a frozen embryo from a previous cycle), they’ll likely just give you some pessaries.

Good luck!

Thank you so much for your replies. I’m resisting googling as I end up in a Google hole with so many conflicting facts so I’d much rather hear from actual personal experiences!

With the progesterone pessaries - basically, I’m a wimp and I read ages ago that you sometimes have to put them up your bum! I have real difficulty even having a smear/swab (I had a bad experience many years ago and it just makes me completely tense up - I understand I’m going to have a huuuuuge reality check when it comes to ivf but as long as I don’t need to put them up my bum I’ll force myself to manage with the rest! 😂).

Hi OP

on the pessaries - I was told I could put them in either ‘hole’, except the morning of transfer day I had to put it up the bum as they don’t want a load of waxy stuff down there in the way of the transfer. I ended up alternating as they can irritate your cervix sometimes if always using vaginally, but this totally depends on each person.

as you say though, IVF is something that involves a lot of other discomfort, lots of ultrasound scans via the vagina and the transfer itself is a bit like a smear test but it goes on longer and you have to have a full bladder 🫣. Honestly though, you get desensitised pretty quickly!

@Zypig

hi! Thank you for your replies - I’m pleased (in an obvious non pleased way!) to hear you have a similar issue to mine regarding the tube. After my laparoscopy the consultant said it would need to be removed to prevent fluid dripping into my uterus with IVF BUT it definitely wasn’t hydrosalpinx in that tube so therefore how can fluid possibly drip?! It never made sense to me and unfortunately the consultant was extremely unhelpful so I’ve always asssumed it would need removing prior to ivf- hence why I’ve been in denial so long. The tube is ‘kinked’ so it wouldn’t be able to be sorted via surgery unfortunately.

My vitamin D and iron is really quite bad so I do think I’m probably a little further away from beginning ivf than I’d hope to be - my iron especially im finding so hard to improve, my endo even recommended I had an iron infusion but I just can’t afford that on top of the ivf and the private endo appointments for my thyroid. Will definitely look into acupuncture!

thank you so much for your help - I hope you found/find success with yours! X

Hi OP, that’s interesting from your consultant. I was told that provided it wasn’t hydrosalpinx they didn’t need to remove it. My blockage is too high up to unblock so we basically just decided to leave it. I was told that one blocked tube didn’t halve your conception chances, as the other tube could move to catch the egg from both ovaries so you end up with something like 80% of the chance you’d have with 2 working tubes. Given you don’t have any other permanent issues you probably stand a good chance both naturally and via IVF once you sort your temporary issues out (iron, vitamins and stress).

I presume you’ve been via your gp for iron and vit D, they have quite a bit they can prescribe to get this up quickly rather than just relying on over the counter vitamins, e.g. ferrous sulphate for iron deficiency.

Good luck with the path forward!

@Zypig

yes this is what I was told too, he was very optimistic I’d conceive naturally but 2 years later and nothings happening. It was only said it needs to be removed for ivf - but he then literally refused to discuss it further!!

It’s my endocrinologist who has prescribed the iron and vitamins - he hasn’t actually suggested anything other than gentle iron and an iron spray which im taking both yet he says my iron deficiency is really bad. I’ll have to look into other options too x

My right tube was blocked and clipped due to hydrosalpinx. During the op they discovered my left tube was also blocked, severaly scared and swollen. They did say my left tube could eventually go the same route as my right with hydrosalpinx but they never felt the need to do anything about it during the op and my left rube was left alone. I've since started IVF and had no issues or delays due to the left tube blockage, all they were bothered about was sorting out the right hydrosalpinx before letting me start ivf

@Whowhatwhere21

Thank you for replying with your experience. This is what I was told too if hydrosalpinx was found. I’ve got the photos and written and verbal confirmation from
the consultant that I definitely did not have hydrosalpinx, that’s why it always confused me why he then said it would need removing for ivf to prevent fluid dripping (fluid that isn’t even there!!)! I was mad that he’d not said this prior to surgery as I’d have definitely opted for it to have been removed even just with the blockage. My right tube is clear and healthy but I’ve never been pregnant. I put it down to the overactive thyroid that I unknowingly suffered with for at least 6 months preventing pregnancy and then I’ve had to have a year off to wait for that to become stable again. We’ve been officially trying again since January this year after the break all of last year.

It's totally understandable you being mad about the situation!
I've had a cyst on my right ovary for 2 years with bloods confirming it's chucking out hormones. They also left that alone during my op as they said it wasn't a problem and wouldn't cause any issues for ivf. Went to start ivf and they refused because of estrogen being high thanks to the cyst! I was fuming they didn't get rid of it during the op and it meant delays for us starting.
I really can't understand your situation though, if there is no fluid to drip then what is the issue?! If they are so sure it's a problem then why the heck didn't they deal with it during your op. It's horrible to wait as long as you have only to now have more setbacks

@Whowhatwhere21

I also had a couple of small cysts on my ovaries which were removed - I wasn’t even aware of these prior so it seems ridiculous that they didn’t remove yours that you were aware of!! I hate questioning them as they are obviously the experts but I feel like the amount of research I have to do myself is unreal.
Exactly. And they have said repeatedly it’s definitely not fluid - he has photographic proof etc too that they took during the laparoscopy. I questioned why they didn’t just remove it anyway and he said because I didn’t give permission to. I wasn’t even asked in the first place! They just don’t seem bothered at all, he then said oh you’ve got until you’re 39 before you’ll have issues anyway so you’re fine. Great, thanks for that!

Mine has been there for at least 2 years and I've always been told it won't be an issue. It was only decided it was an issue when I went to start stims and my estrogen came back high, yet the following month they let me start without even checking my estrogen. I've had to do a freeze all and didn't know estrogen has to be taken for a frozen transfer, so now I'm worrying again that they are going to refuse the transfer until the cysts is removed/drained.
Your situation has baffled me tbh. If there is no fluid and no hydrosalpinx, how can there possibly be a risk of fluid leaking!? Was it just a general gyne surgeon who did your op, or was it one from the fertility clinic you plan to use? Mine was done by my clinic consultants team so they did what they deemed necessary for them to take me on for ivf. As far as I was aware I was going in for my right tube clipped, but came out having my tube clipped, some adhesions separated and dye ran through my left tube to check it was blocked. I didn't agree to this beforehand or know it could be a possibility but they did it anyway.

@Whowhatwhere21

It almost seems as though it depends on whoever you see if they deem things as an issue or not! I’ve often read that cysts on your ovaries are actually best left anyway so not to cause further issues by removing them.
My laparoscopy was done by a general gynae surgeon but I did research him beforehand and he was the top one/best one at the hospital. He was just so dismissive of me in general and said you’ll easily get pregnant bla bla and told me off for crying! I assumed he was just fed up as mine was the last appointment before Christmas.

Personally I'd go ahead and pick your clinic and get booked in then let them decide. I've had 2 gyne surgeries previous to IVF and they did what they intended to do then told me afterwards that I had issues that could cause fertility problems. It's only since being referred to my clinic and letting them take a look that it was decided I needed another op for the hydrosalpinx to make IVF an option for me, and other things that I was told in previous surgeries that could be a problem have been left as the clinic didn't deem them a problem. Your clinic will be able to look at the findings from your op and them decide if anything is there that could affect your chances. They are better placed to make that decision than a general gyne surgeon is. You've been told there is no hydrosalpinx yet also there's a risk of fluid dripping, if this is genuinly going to be a problem for you then your clinic will hopefully pick it up on the initial scan they do like they did with me.

I think with the cysts it varies. Some contain hormones, and some don't, and from what my clinic have said they tend to expect the cysts to go away on its own with your next period. Obviously mine didn't and has been sat there for at least 2 years, add in that it contains hormones and its just become a problem. I think if it didn't contain hormones and was of small size, it wouldn't have been such an issue 🤦🏼‍♀️