Adenomyosis

[Lanicholla]

Hello ladies. I found few older threads about it, but wanted to hear more comments who suffers with adenomyosis, have you managed to conceive without ivf? And how was the pregnancy? We ttc for over 3 years. Developed adenomyosis after my 1 only pregnancy. Have been trying for another one, numerous tests and scans, IUI (is there even point), no results... feeling down 😔

@Lanicholla Thank you! I really don’t feel hopeful by the way the specialist was talking a few days ago. I’m sure it’s been caused by that infection as I never had these issues before :( I was down to have a Laproscopy I got referred in January and they got a cancellation in July but I was on holiday. I paid private for the hyterscopy that was 2k but the lap is around 4K and I thought that’s money towards IVF and I expected to get another appointment but I haven’t. 😞

Thats good to know. Did the burselin shrink it? Mine was picked up on a scan. Literally had 4 signs of it and it was really clear she picked up on it straight away. Xx

@Loz2467 so mine was diagnosed via an MRI scan. It is oestrogen dependent so the best way to have success is via a longer downregulation.

I have 3 months of Zoladex but it wasn't long enough and so really I need a longer suppression but everyone is different.

If this FET is unsuccessful in going to go back on BC for at least 3-4 months and just have a break as I've had so many cycles of different drugs and heavy periods. I will go for another cycle next year after a break

@Tillybabs I had so many signs just on ultrasound. I had the cysts in my lining and then you could see a mass of it and then also the “vertical blind” appearance through the uterus. 😞 ugh it’s so hard isn’t it. I was thinking of booking an MRI to see the extent of it and which type it is.

So if we go ahead they will down reg? I was meant to start IVF on cycle day 1 and now it’s all changing and could be months away and I’m just getting older and don’t know if I want years of this. I’ve already missed out on so much of my three year olds life because of the loss and feeling depressed I feel so much guilt. Xx

Hi Everyone,

I wrote last week about the adeno signs seen on my ultrasound scan at my clinic and obviously felt concerned but then reassured after speaking to you on here about the down regulation so I thought maybe we have some options.

Anyway Friday we had a call with my Dr and he said he doesn’t have any concerns. He said you can only diagnose adeno by hysterectomy. Which I knew but obviously ultrasound and MRI can show it can’t it. He did say I had some white lines going through my uterus and I did have 2 small black dots in my lining but he said it’s such a vascular area to be scanning etc. I didn’t really ask about down regulation as he said he didn’t have concerns? And it was only a few months back since my hyterscopy which was fine?

I just can’t help but worry or wonder that I should be on a down regulation incase I do have adeno? But I don’t want to look like I’m doubting his choices.

Wishing a big dollop of luck to those going through IVF. I had six unsuccessful cycles a few years after conceiving my son (naturally), but went on to conceive my daughter with the help of clomid, after stopping IVF having being given a 5% chance of ever conceiving again. I recently came across my old ivf meds case in a cupboard and burst into tears; it was a decade ago now but brought back so much emotion.

I have adeno btw, forgot to say that upfront!! 🙈

@flippetyflaps congrats on your daughter! That’s amazing news! I have tried clomid for the last 5 months and no luck. I’ve got pregnant naturally twice. Then nothing since my MMC 18 months ago which came as a shock to me as I naively thought I’d get pregnant again. I feel doctors are too nervous to diagnose adeno without a lot of evidence. Did you have symptoms of it? Or it showed on scans and I know unfortunately your IVF wasn’t a success but did you down regulate? Sorry for all the questions. My Dr doesn’t want me to down regulate but I can’t help think that this sudden adeno I have is stopping any natural implantation.

@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

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 😂🙈

@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.

@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 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 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 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

@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 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

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

@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

@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.

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

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

@Loz2467 sorry I forgot to tag you

@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 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

@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