adenomyosis? IVF

[busybee2334]

I am was wondering if anyone else has been in a similar position? I'm 40 with one embryo in the freezer. Docs at our private clinic suspected adenomyosis on ultrasound which was confirmed after we paid for a private MRI. It's fairly small and localised, but it is there. I've had 2 months now of GnRH prostap (which i HATE. headaches, mega hot flushes, grumpy all the time lol). I dont know what happens after I've finished with the prostap though? Could i go straight into some time of hormone replacement? our consultant is v nice, but not very communicative :-/

[quote poppet131]@OhPeanuts Thanks for updating and congratulations!! I have mild adeno and suspected endo and male factor. We’re going down the ivf route this spring if no bfp by then (secondary infertility). Can I ask which fertility clinic you were with and did you make any dietary changes (cutting down gluten/dairy) ahead of your successful FET?[/quote]
Good luck with your next few months and if needed your cycle!

My adenomyosis is also mild and they said most people have both adenomyosis and endo but I’ve never had it investigated so I can’t say for sure.

The clinic that identified the adenomyosis by ultrasound was Care London. The drs seemed pretty in the know about it so I was impressed with that.

No I didn’t make any dietary changes myself, just a normal healthy diet eating everything and plus my usual treats once in a while. I did the whole diet and supplements things over the years and it made no difference so I gave up on it

My husband was taking proxeed though for the male factor so not sure if that helped with the male factor issue. It seemed to improve things for us overall though comparing sperm analysis from before and after he was taking it.

@OhPeanuts Thank you! And did you have your IVF with Care London too? X

@poppet131 I had my stimulation and egg collection and ICSI at the wolfson (freeze all) but they kept closing down due to covid and after over a year in delays I moved my 4 frozen embryos to Care London where I had both FETs

@OhPeanuts I hope you don't mind me asking, did Care suggest the Prostap for your Adenomyosis? I'm in the middle of a round with them and when I asked if my adenomyosis would be an issue (my main issue is very low egg reserve and male factor) they said it wouldn't be a problem. Now I'm worried I should have been on Prostap... I definitely don't have Endo as I had a laparoscopy in October. I'm really worried this round is already ruined before we've even done egg collection x

[quote Dbop100]@OhPeanuts I hope you don't mind me asking, did Care suggest the Prostap for your Adenomyosis? I'm in the middle of a round with them and when I asked if my adenomyosis would be an issue (my main issue is very low egg reserve and male factor) they said it wouldn't be a problem. Now I'm worried I should have been on Prostap... I definitely don't have Endo as I had a laparoscopy in October. I'm really worried this round is already ruined before we've even done egg collection x[/quote]
Hello @Dbop100 no problem. Yes they suggested prostap for me based on how my uterus looked on ultrasound to put me into a month long menopause to calm down the adenomyosis before a frozen embryo was transferred (i.e. after egg collection etc) so I would say if they haven’t suggested it for you then you probably don’t need it 😊. But if you’re worried please give them a call and ask

Thank you @OhPeanuts I will check with them. Sorry if that sounded a bit OTT but Gosh there's so much to worry about. Only got the 1 follicle growing so it's all riding on this and it just feels like so many things could go wrong x

@Dbop100 no problem, I completely understand. It’s so hard having everything riding on what is essentially out of our control and all we can do is try to get the best cycles we can! I hope this one works for you and wish you all the best! X

Hi 👋 thank you for sharing your journeys as this it’s not a topic I can find very much detail on. I have just recently miscarried after my embryo transfer in January and it’s believed to be as a result of my adenomyosis. They have proposed I have Prostap to reduce the adenomyosis thickness. If all goes well I will prepare to transfer in May. Thank you for sharing your journey as it gives me hope :)

@AmyFerguson hello! That’s the problem isn’t it, hardly any info on it and not much solid research either. I read every single study on it I could find that was relevant and all of them say the same thing in that further studies are needed 😒.

Very sorry to hear about your miscarriage, I hope you’re doing ok. Look after yourself. Let us know how you get on with prostap and your next transfer. I wish you the best of luck with it!

Thank you for your kind words, I am looking after myself and will be sure to keep you updated. Baby dust for us all xx

Hi everyone :)

im just wondering if there is any updates. I’ve been struggling with infertility since my miscarriage back in Feb 2021. I was just getting ready to start IVF so I went for my AMH and follicle scan done on Monday and I was shocked as the consultant said she expected adenomyosis! I have no symptoms of this and it’s never been picked up on any of my other scans but maybe this explains the secondary infertility :( is my IVF journey over before I’ve even started? I’ve done nothing but cry!

@Loz2467 hi, sorry I have only seen this now which is very late. How are you doing? Have you started a cycle?

I would say don’t give up hope! I was lucky enough to have a successful pregnancy so it’s not impossible with adenomyosis but it does seem to be much more of a struggle for us

@OhPeanuts thank you so much for replying! Congrats on your pregnancy. How was the IVF etc for you? I had a call with the Dr after the nurse making those comments and he said adenomyosis is very hard to determine and he said yeah I had a few white lines going through my uterus but not something to affect the IVF and implantation. I did then also say I was worried about endometriosis as I have brown spotting for a whole week before my period. He said a lot of women can have a mild degree of endo but if it’s severe they usually get cysts instead the ovaries which I don’t have and it affects the egg quality. So I just guess I need to try and believe him but I can’t help but have some doubts which I feel is normal? I’m on norethisterone and I’m now 7 dpo and the brown spotting has started. I start my injections on the 5th Jan. the cyclogest stops the brown spotting so I’m wondering if it’s a drop in progesterone or egg quality. I just don’t know 😞 I’ve got a 3 year old concieved first month trying then got pregnant again when he was 15 months old and then lost her at 18 weeks and haven’t got pregnant since. That was Feb 2021. So secondary infertility for me.

I haven’t been offered any Prostap or any down regulation?

@OhPeanuts I’m hoping you can help me whilst I’m in my TWW meltdown. After my scan last October showing suggestive adenomyosis my Dr tried to reassure me. Anyway fast forward to January and I’m starting my stims for IVF. I went for my lining and follicle scan on Saturday 14th. Nurse said everything looked okay 9mm lining, triple layer and a good quality and counted my follicles. Anyway then the area just above my lining showed up. Maybe looking like focal adenomyosis. I didn’t have the black in the lining but maybe I do post ovulation like last oct.

I had my egg collection. 13 eggs. 10 fertilised and 7 made it to 5 day blasts. I had my fresh transfer on Saturday and I don’t think my lining looked right although I know it’s abdominal ultrasound and completely different now the progesterone has worked etc. I’m nearly 5 days past 5 day transfer and I’ve felt NOTHING! Not even one twinge so I’m convinced in hasn’t worked and fell down a complete rabbit hole on google about adenomyosis and IVF.

I’ve finally got a lap date in feb where I feel I need the brown spotting Investigating and Maybe the adeno but then I’m worried I’m going through surgery when I can have success from a down regulation but what if I can’t because it’s so close to my lining etc. I’m just in a huge meltdown and can’t stop googling! :(

Hi @Loz2467 sorry for the late reply! Congrats on your transfer and your lovely embryos!

ok so you may have tested by now but if you haven’t please don’t worry about feeling no symptoms yet, it’s normal. If you think people with normally achieved pregnancies don’t even test until after a missed period you are so early on so it’s not unusual. I myself had zero symptoms until day 5 and then some funny things began happening.

regarding your scans, if your dr thought your lining looked good they did the transfer, trust their expertise. If they thought it was all wrong they would’ve told you.

also obviously we want it to work first time but statistically it’s not that likely, most people (80%?) have success after 3 transfers. I had success on my second transfer. So don’t beat yourself up if this isn’t the one. You have lots of lovely embryos to try with and if you need tweaks like down reg you can do that next time.

I had my hysteroscopy for the brown spotting I have and the dr found absolutely nothing, all clear in there and the biopsy came back normal. It still worries me but I’ve had all the investigations and seems clear so there isn’t much I can do!

let me know how you get on with this transfer, what date is test day?

@OhPeanuts thank you so so much for replying! I’m 5dp 5dt now and zero symptoms still and last 2 pregnancies I had bad cramps and spotting / implantation bleeding so I know for sure it hasn’t worked. I’m not an early tester so just gonna prepare myself for the worst to be honest and be prepared for the negative. Its not like I overly thought my first fresh would work anyway.

They don’t check your lining once progesterone has started do they? They check before to make sure triple layer etc. just the patch of adenomyosis seemed so big in my opinion and even now on my transfer pic it did look odd :( definitely not like everyone’s online to be honest. I’m stressing because of everything I’ve read about adeno and it’s so close to my linings it likely to be affecting implantation. Did you do just 1 month of down reg before your FET?

If you was me would you get the lap next month just maybe for some answers? I was like you nothing was found at my hyterscopy causing the brown bleeding so I swear it’s from endo or adeno.

Crazy how I’ve got pregnant naturally twice and now this :( it’s 2 years since we lost our girl next Wednesday the 1st Feb. If someone said you won’t have your rainbow baby or be pregnant 2 years later I wouldn’t of believed them. It’s so hard.

Do you still have the brown spotting now? It’s so frustrating not knowing where it’s coming from. Does the adeno move into the cavity or not? Just because on one of my scans I had 2 black spaces into the actual endometrial lining. Whereas on my stims scan it was very obviously above it.

Don’t give up hope yet, you just never know 😊. But it’s sensible to prepare yourself as well just in case. Do what you need to do to look after yourself.

You are correct, they didn’t check my lining again after starting progesterone, only before. Mine was like yours, I believe it was 9 or 11mm and triple layer. I remember thinking on transfer day it looked bad but they said progesterone makes it’s less fluffy or something so that’s normal. My adeno is right at the spot embryos tend to implant too - the fundus but it did work.

hmmm it’s so tough with a lap…I think if you need peace of mind then maybe. However downsides are:

• only hysterectomy can be used to confirm adenomyosis so it’s possible you’re not going to get a lot more information on that.
• it should be useful to see if endo is a problem? Most people with adeno have endo too I think.
• many abdominal surgeries cause adhesions so that’s always a risk in making things harder for yourself. I’m not sure how high the risk is with a lap though so check with your dr.
• if you do have a lap you’ll maybe learn a few things but the treatment will be the same with down reg unless your get the endo removed during surgery too.

I am so sorry about the loss of your baby girl 😢 it’s so hard isn’t it

I do still have spotting yes.

my down reg was one month.

my understanding is really basic but I think adeno is just in the wall of the uterus and doesn’t move into the cavity. Could be wrong but that’s what I thought.

hope I answered everything but ask away if there is anything else

@OhPeanuts I think that’s what I’m doing just preparing myself. I didn’t necessarily expect it to work first go but it’s still devastating and I think my emotions and hormones are everywhere because of the timing.

Yeah I think it’s hard to check when progesterone has compacted the lining isn’t it. Honestly my transfer pic looks nothing like anyone else’s!!! Even my uterus doesn’t even look in the same place. It’s strange! I know some people would say I’m over thinking but after infertility and loss it’s just so hard.

That’s what I’m thinking with the lap. Like I could down reg and have an FET and it work and then I could have 3 more not work and wish I’d got the Lap done.

Because I’ve got pregnant easily before and now nothing I’m thinking something is stopping it. So have I developed endo or something?

I know what you mean adeno can’t be removed anyway. Do you think that’s what’s causing your brown spotting leading up to your period? I do feel like my miscarriage has caused this because I never had any issues before and it started the month of my covid vaccine too which makes me feel uncomfortable. It’s obviously not egg quality because of my results so it has to be something to do with uterus / lining.

such a tough decision to make.

@OhPeanuts im also starting to wonder how the adeno causes brown pre menstrual spotting? Is it due to the progesterone dropping and that’s why the cyclogest stops it? I’m just worried because of those areas seen in my actual lining. Like is it brown that’s come in but hasn’t shed because of the progesteone (that was my cycle last October)

I know I have no idea how it’s linked or if it’s linked at all. I’ve given up asking drs about it, they never seem to know what I’m going on about with adenomyosis, just get blank stares

@OhPeanuts I’m about to start the prostap in the next couple of days! I’m worrying about the side effects but it isn’t summer so let’s hope for the best! I asked for 2 months worth just to be sure… I can’t deal with more heartbreak so I thought I’d rather just wait and get another month in there but then I’m paranoid my lining won’t build after such long down reg. But surely they can just up my estrogen if that’s the case and I just hope it responds? I went on a live with an IVF specialist from London a few days ago and learnt a few bits about adeno which helped and he did say adeno and endo cause low prog hence the brown spotting. It’s just so odd it happened a few months after my MC but seems the inflammation and child birth made it happen. :( feeling nervous as I pick up my prescription today and waiting on my protocol being released. I’ve got my 6 Frosties so if this doesn’t work I’m thinking maybe the lap. Then maybe some immune testing etc. I don’t want to keep putting them back in without further tests.

How are you doing? Xx

Hi @Loz2467 ! Wow a couple of days for your start! That’s good news. I didn’t have many side effects from prostap at all actually. I had headaches, tiredness and felt a bit fuzzy headed. I didn’t get many hot sweats at all, maybe once. I had it for two months too and it was fine plus only one jab so it’s not too bad at all. Let me know how you get on.

Interesting about the specialist! Do you know their name please? I wonder if I should make an appointment too.

it’s good you got some answers on the brown spotting.

I am doing good thank you. I think I’m going to call my clinic about a transfer consultation in the next couple of weeks so might be heading down the rabbit hole again shortly…a little scared of that

@OhPeanuts Thats great you didn’t have many side effects from the prostap! Fingers crossed I don’t either! I hope I don’t get the fuzzy head it’s already bad enough after child loss and grief!!! I still struggle at work keeping productive. I used to be so switched on but things have changed!

Yeah sure I’ll get the details and he’s offering 30 minute free calls. He said a minimum of 2 months pro stap and then he said in the last month he likes to use letrozole because the prostap stops the estrogen from the ovaries and the letrozole from the actually adeno tissue or endo tissue but that’s not in my protocol but it’s something to consider if this one doesn’t work. My protocol was already done and obviously he is a complete different clinic.

I haven’t seen my full protocol yet but I have 2 months of prostap. Then Estradiol, then cyclogest and lubion. I asked for extra progesteone as I thought it can’t hurt. Plus with FET I’ve heard you sometimes need extra compared to a fresh.

I’ll have everything crossed for you next time around and hopefully now they’ve found the protocol that works for you it will be a known process. Do you still have some embryos?

Im sure it’s my childbirth and inflammation from my loss that caused the adeno for me :( because I’ve never had brown spotting or issues before. I got pregnant naturally twice on the first try and now I can’t even get pregnant with IVF. Makes me feel so sad. Xx

@OhPeanuts sorry I was also meant to ask because I haven’t seen my protocol yet what month should I expect transfer? Would it be mid - end of May if I’m starting prostap in the next few days?

@OhPeanuts thats me officially in down Reg. Had my prostap injection yesterday. I also found a big thread somehow about it. Not in mumsnet but it was basically saying once FET meds start within the third month to have letrozole days 5-9 or like 3-7. Did you have this?

Im also thinking the brown spotting before my period but my BBT staying high and my prog blood tests always coming back high… does it mean the lining isn’t coping with that specific amount of progesterone hence the cyclogest stopping the spotting? I just can’t understand it. It’s like there’s enough prog there but the lining was sloughing off without extra help? I’m just over thinking everything. Or is it simply out of wack because the estrogen is so high from the adenomyosis?

I also read that If the first FET fails with this just have another 1 month down Reg and try that because the prostap is still in your system?

Ive read so many success stories but I felt hopeful when I read tons of success stories of women taking cyclogest after ovulation and them getting pregnant but it never worked for me :( so I don’t wanna get my hopes up over the prostap either. So hard.

How are you getting on? X