Adenomyosis

@Loz2467 @Tillybabs
Ive just read the whole of your post and am in such similar positions to you both.
How did you get on? Any positive news?

Hey can I ask how you got on with your journey? I’ve recently had adenomyosis diagnosed part way through my first ivf cycle

@Loz2467 yea same but this is last chance saloon for me as I’m 43 in Jan and don’t want to carry on if this last one doesn’t work so I’m throwing everything at it.

@Tillybabs Wishing you so much luck in your next one! So the one I got implantation on it was with the pred and the blood thinners so I’m hopeful for you that it might be what you need.

Im worried to pay for all that for immunes and then it end up being an issue because the adenomyosis is focal.

Because my blasts are only early blasts and a day 6 I kinda wanna do a fresh cycle but I have to use these first.

Have you? That’s good as it’s meant to control inflammation isn’t it. I have to be honest I struggle making dietary changes when I feel IVF and TTC has already ruled my life for 3 years. I’ve no will power. :(

@Loz2467 sorry to hear about your loss.

I am in a similar position. I’ve got 2 day 5’s left.

Im currently on downreg for 2 months then prepping to try another transfer with both embryos. I’m going to take prednisolone and clexane with this cycle. One thing I’ve done as well is cut out all pasta, bread, rice, dairy and sugar. I found before I went into downreg that it made a positive difference to my periods. They were less heavy and not clotty at all.

@Tillybabs I forgot to update but my third transfer after the 3 month down Reg and the steroids and blood thinners was a success rhen a loss :(

All I have left now is 2 early blastocyst (not even full blast) and 1 day 6.

Was considering full immune testing with Dr Gorgy but it’s thousands!!! As you said! Already added onto the rest of the costs but I have seen hydroxycloriquine used and low dose naltrexone with adeno or endo.

I just feel nervous to throw more money in too when I don’t have the best quality blastocysts left.

@Tillybabs that’s amazing! What dose are you on? Was the BC instead of another prostap? Have you heard of letrzole to reduce the estrogen too? I don’t know how severe my adenomyosis is but I’m assuming pretty severe if 2 failed transfers and one after down Reg and the week of brown spotting pre period and after. It’s frustrating the patch is on my lining and not further into my myometrium. Yeah I’m private as I have a 4 year old and I had a 20 week loss so I have to pay. I’m happy your Dr has listened and you’ve got something extra for your protocol.

@Loz2467 im so glad you mentioned that because it was something I wanted to ask my Dr. I’ve just spoken to the clinic and they are going to prescribe it for me

@Loz2467 Wishing you luck too! We have very similar issues regarding the lining not thickening. I have read that other women with adeno have taken Predisolone too and it has helped. Are you doing IVF privately? I'm wondering if my Dr will prescribe that to me

@Tillybabs wishing you so much luck! I agree about the costing for everything. I’m coming to the end of another down regulation and this time my dr had agreed to add Predisolone and blood thinner but I don’t think it’s the missing ingredient to be honest and the anxiety is starting as it’s another transfer coming up in September and I don’t know how much I can keep going. My lining doesn’t get very thick either and I have a large patch of adenomyosis on the lining but not in the cavity which might be affecting blood supply to the lining. :( I just wish I knew about that area before commiting to IVF because I can’t see it working with that being there.

@Loz2467 sorry I forgot to tag you

Hi sorry for some reason I can’t reply via the app.

I asked to go back on BC and about to start another cycle. I didn’t bother going with tests with the immunologist as it was going to be so expensive. Instead I’ve opted for PRP treatment if my lining doesn’t thicken which is something I was struggling with before. It wouldnt get past 7mm

@Tillybabs how are you? Do you have any updates from seeing the immunologist? X

@Tillybabs im so sorry! It’s so hard isn’t it. :( before them finding that “area” I was hopeful about the down Reg as I’ve read so much on Reddit etc how it brought people with endo or adeno success etc. I’ve noticed in the US they start the estrogen 28/29 days after there last down Reg injection whereas here they had my starting my estrogen 14 days after so I feel like I’ve only had a 6 week down Reg. If that makes sense? My lining only got to 8.4mm which I know they say seems okay but my periods keep getting lighter so I’m sure before my issues my lining was getting to more than that 100%. Also thinking is it not getting thicker cos of the adeno. It’s so hard isn’t it.

so did you ask for BC rather than a prostap? Fingers crossed for this next cycle. I’m hoping mine will give me immunes too but I doubt it.

@Loz2467 hey. My FET failed too. Downreg didn’t really work for me. My lining also wouldn’t get past 7mm

I’ve been on BC and will be starting again soon. I’m seeing a reproductive immunologist first and may try PRP to help with my lining

A woman I follow on insta has this and has gotten pregnant twice naturally despite being told it wouldn't happen

@Tillybabs How are you getting on? I’ve just had my FET fail and that was after 2 months of prostap :( they have found a small “fibroid” on my lining. Well it’s always been there: they’ve said they can’t remove it as would cause more damage. I’m sure it’s what’s causing the failure. I wanted another prostap and then straight into another FET. Then if that fails I’ll get a laproscopy even though the fibroid can’t be removed it could check my tubes and endo.

I just don’t want to have to wait for another bleed because it will take ages Because of the prostap so would they administer it on cycle day 21? Xxx

@Tillybabs ah I’ve just seen you mention the immune protocol too! So frustrating mine won’t give it. I especially after down Reg for so long I just want to throw everything at it xx

@Tillybabs I’m so sorry I’ve literally only just come across this reply! So much to update on.

I am on the NHS waiting list for a lap. The day after I started stims in January I got a phone call for my surgery! You just couldn’t write it. Everything was ready for IVF and 10k out of pocket so we said we would carry on. Lining got to 9mm I think and trilaminar but the fresh transfer didn’t work. I didn’t really expect it to but I was still heart broken as it was exactly 2 years since the loss of our daughter.

My follow up review I asked for down Reg as suggested by you ladies on here. Buserelin is out of stock so I’m on lupron - prostap. I asked her for 2 months as she only wanted to do 1 month. I had my first injection only 3 weeks ago so still a long way to go for me! Worried my lining won’t thicken up after it and I’ve read lots of success stories for it but also it not working so I need to be prepared either way. ALL my friends are pregnant! It’s so hard! I also wanted to have some letrozole into the month I start my estrogen to keep the levels down and I have cyclogest and lubion for after my transfer. How are you getting on? I even asked for predisolne but she won’t let me. :( just as I know that’s often in an endo protocol.

Only Symptom is brown spotting before and after periods. Every single month! It’s draining! I know women used cyclogest and conceived but it didn’t work for me so it shows it’s a deeper issue than what they had. Xx

@Loz2467 the Dr is calling me today so will discuss with her.

I have one more transfer on the NHS. She said if it doesn't work she would refer for surgery but that doesn't always work.

I had a few cycles cancelled because my lining just ever was to stay in or thick but the adeno was affecting it so she even said to me at one point have I considered surrogacy so I feel like she was just giving up on me and just rushed through this transfer

What I am going to suggest is that I go back on the pill for at least 4 to 5 months and then I try again and I feel the pill is the only thing that suppresses my adenomyosis sufficiently enough. what I'm gonna going to do is speak to a reproductive immunologist and get some test done but I'm not going to tell her about that I'm gonna do that separate to this and see if I need to be put on an immune protocol because I've read a lot about it and it and it could be that I have another underlying issue.

For this transfer I had three months of Zoladex and then the first cycle after the down-regulation got cancelled because my lining was too thin so for the next cycle they decided to just pump me with lots of oestrogen and obviously my lining thickened but it made the adenomyosis worse I think. I was also on viagra vaginally

I'm going to have a break from it all and try again next year and go back on BC and see the RI

I would get a laparoscopy I think if I were you. Are you under the NHS?

@Tillybabs it’s just the unknown isn’t it and the nurse has really worried me. It’s a lot of money just to throw risks if I should be getting down regulated :(

Im so sorry your transfer didn’t work. Was it your first one? Any changes for your next protocol?

With my periods they aren’t heavy I wouldn’t say but definitely a different texture to what they used to be. Sorry for TMI but they are like fertile mucus but red :( so something must be wrong.

@Loz2467 definitely speak to them about your concerns. I think a heavy period is normally an indicator of adeno so you might be ok and maybe have it mild?

@flippetyflaps that's interesting regarding clomid. Is yours diffuse and severe? Mine is! And it seems you have the same periods as I do. I too have bled through once!

Sorry I took so long to reply. My transfer was unsuccessful. I'm having a break and will try again next year. In the meantime I'm going to see a reproductive immunologist.

I'm ok although my manager messaged me yesterday to tell me she's pregnant and wanted to let me know first. Horrible timing but I'm happy for her even though I had a little cry.

@Tillybabs I’m really crossing everything for you for this transfer 💗🤞🏼 Hoping the longer down Reg has helped for you!

It was difficult to talk and I usually have my note book when my Dr calls me but we was away for the the weekend! So not great timing but I didn’t want to wait till today to speak to him. He didn’t say what type it looked like I had because he said it’s hard to find evidence through TVS and MRI etc and it’s a vascular area and the black dots could of been thicker areas in the lining but I can’t help but think it’s cysts and fluid.

Sorry for TMI but my periods aren’t heavy at all however they are thicker and slick and don’t flow that easily like they used too, so I’d say more clotty? Seems like more estrogen present etc. Then I always have the spotting.

I guess I’ll go for my egg collection in January and hope for the best 🤞🏼 Maybe all drs have diff opinions about the down reg but I’ve seen it’s a must really so I’m worried.

I did lots of different protocols, some with downreg and some without.

My adeno was diagnosed via MRI but I had horrific flooding which meant I couldn't leave the house for 2-3 days each cycle unless I knew I'd have access to a loo every 20 minutes at most. I had one particular incident at a black tie event where I soaked through my dress onto a white chair and only realised when I got up after the speeches...thankfully the dress was black and the other guests very sympathetic...it was like the Texas chainsaw massacre 😂🙈

@Loz2467 I've been pregnant a few times previously but not had a child.

I'm 41 now and for the past two years and been TTC but haven't had one positive.

My adenomyosis is significant. I'm not sure if I've always had it as I've been on and off the pill for years.

When I came off to TTC my period were normal and then maybe 8 months or so later they got heavier.

I don't get much pain but very heavy periods for 2 days or so.

Mine is diffuse so not in just one place.

Yours could be diffuse or focal. Yours could also me mild. An MRI would show if it's affecting your lining. It can also make your uterus bulky.

A longer down regulation is the gold standard for adenomyosis but yours might not be significant enough to need it.

I would perhaps ask for an MRI and work from there? Or ask more questions.

Is it diffuse or focal. Is it affecting your lining. If so, you could do a modified downregulation