Adenomyosis

@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.

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

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.

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.

@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

@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

@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

@Lanicholla @Tillybabs Thanks so much for both responding. I didn’t write everything just incase no one was active! @Lanicholla congrats on your successful transfer and everything crossed for you @Tillybabs .

I’ve got an appointment with my consultant tomorrow so I’ll let you know how it goes.

Basically when my periods changed after my 18 week loss I sensed something wasn’t right. Because I lost due to an infection and chorioamtetis I’m sure when they uterus is healing either from a c section, birth, surgery or an infection it can cause adenomyosis. I don’t have painful or heavy periods though so no symptoms of adeno so I was completely shocked. Especially as nothing was picked up on my scan in January and my hysterscopy in May. I did also have so many hormones over the summer on medicated cycles. Clomid, estrogen and progesterone. The estrogen could of made it worse :( the brown spotting I have before my periods is probably linked to the adeno isn’t it? But the progesterone stops it which is strange which I think adeno causes a resistant to progesterone.

is the best protocol down reg with burselin? Is that after egg retrieval?

xx

@Loz2467 I've currently 6 days post FET. My first one and 2 days ago I felt hopeful and then yesterday I had a little diarrhoea and period type cramps and today I feel sick but I get these feelings when AF is coming so now I don't feel good about it.

@Lanicholla 3 months downreg didn't work for me and my lining couldn't get trilaminar but they decided to go with it.

If this doesn't work I will go back on BC for a while to suppress the adenomyosis and then try another transfer as we still have 3 embryos

@Tillybabs how are you getting on? I was just about to start IVF and my scan showed adenomyosis. It didn’t in January or May but it did a few days ago! 😞 I’ve got a 3 year old. Got pregnant again easily when he was 15 months old. Lost her at 18 weeks in feb 2021 and have been TTC since. My periods changed. Sorry for TMI. Thicker in texture. Not painful at all. But then from July 2021 started having brown spotting for a whole week before my period.

i feel so down and waiting to speak to my consultant on Friday. Xx

Hi

I know this thread is a few months old but I've been TTC for 2 years now (although with some months out) and am going through IVF and struggling to get a good lining for my FET. I have adenomyosis and just finished a modified downregulation of 3 months on Zoladex. @justsatfloating could you please share the Instagram support page? Thanks 😊

@Katie567
Hey Sorry for late reply, so the chemical menopause is an artificial menopause. I was given an injection called Zolodex each month that put me into the complete menopause. It shut down my ovaries etc and pretty much gives you all the side effects from the menopause which wasn’t great for me. Hot flushes, no sex drive, mood swings, hair loss etc where just some on the side effects. It’s doesn’t stop the Adeno at all but it does help some the symptoms such as the heavy bleeding/clotting etc. This was a last resort for me though after years of meds and surgeries so not something I did lightly. Before I feel pregnant I started taking a multivitamin for women plus extra folate as mine was low, I started eating really clean (still having treats and some alcohol) I eas taking collagen and matcha daily and working out 6 days a week. I couldn’t say at all if that done anything as I was going it for me not to try for a baby but it didn’t do any harm if that makes sense.

Please do speak with your Dr about all your options for the Adeno and wishing you all the luck xx

@Lanicholla ahhh thank you. Still feels very surreal. Wishing you all the best xx

@Lanicholla - we actually had an appointment booked at an ivf clinic too and we genuinely didn’t think it would happen again for us. I had implantion bleeding during my first pregnancy (brown/dark red spotting for two days then tailed off), but this time, I had no spotting, cramps, or any symptoms. My cycles usually are 26-28 days and it got to day 29 so thought I’d test as our NHS fertility clinic had given letrozole to use in our next cycle before starting private ivf. I also took b complex and b6 vitamins to naturally boost my progesterone as my results were borderline (used the solgar brand - from Holland and Barratt or Amazon) x

I have adenomyosis. My first pregnancy was via IVF after TTC for 12+ months and that 'baby' is now 9 years old. After that, we had IVF to try for a sibling but were unsuccessful and decided not to go through it again. The following year, I fell pregnant naturally twice and did so again the year after that. Sadly all of these pregnancies ended up in losses and I believe this to be because of the adenomyosis. I think what I'm saying is although it is possible to fall pregnant naturally with adenomyosis, it's a long way from being the end of the road on that particular journey. Wishing you lots of luck 🍀

I have mild Adenomyosis, low AMH, a small fibroid, polycystic ovaries (but not the syndrome and I ovulate most months) and usually spot between 3-7 days before AF shows up every month. I have a little one but we struggled for over 18 months with secondary infertility. We both took supplements as DH’s count and morphology was low and I took omega 3 and cut down on dairy and gluten to decrease inflammation. The only thing we did differently this month when we finally got our bfp is acupuncture for myself and I had a hycosy on CD 10. But the adeno and spotting hasn’t got in the way of implantation so I hope that reassured you! X

Hello, congratulations! Just wondering, what do you mean by chemical menopause? Do you think this helped reduce the adenomyosis before trying? Also, can you tell me what supplements/ diet you were on? Just been diagnosed with this after ttc no. 2 for 2 years, feeling very down :(

Hey @Lanicholla

I’ve have had stage 4 Endometriosis and Adenomyosis for over 15 years now so sending love.

I had my first daughter with no issues and no ivf back in 2016 after I had my 3rd Laparoscopy for Endo (we fell the first month of trying and 6 weeks post lap)

In 2018 DH and I started trying for number 2. We fell pregnant again very quickly but sadly lost the baby later down the line.
I needed emergency surgery due to the MC and they informed me post op that my Endo and Adeno had become so severe it was all over my organs. I was advised to have another laparoscopy for the Endo and Adeno when recovered from the MC surgery and to try again for a baby.
So I had the surgery but was unable to conceive over nearly 3 years.
In this time of trying I became so unwell with the Endo and Adeno (I was basically bedridden, stopped work and was struggling with everyday tasks) that I decided I needed to put my health first and went into the chemical menopause to try and ease some of my symptoms and also decided a hysterectomy was the next step so was on on the urgent waitlist for the surgery. Although we were desperate for baby number 2 I was becoming bedridden from the Endo and Adeno so couldn’t even have sex to try and conceive. After the heartbreak and reality of being put on the waitlist for the hysterectomy at 30 we decided to focus on our daughter and live our lives as a family of 3 and enjoy the days we can when I was well enough.
We completely switched off from conceiving weirdly my health became really stable and I was able to became so much fitter and healthier, we changed up our lifestyles (eating clean, taking supplements, cutting down on drinking etc) and my health actually became the best it’s been for years (even lost some weight in the process too) We were able to go back to having unprotected regular sex and starting having my period regular every single month and after being told we have like a 1% chance of conceiving, baby making was the furthest thing from our minds. I didn’t track anymore, deleted any apps, didn’t pay attention to CM we literally just had sex when the mood took us and for fun if that makes.

It wasn’t until Aug last year I discovered I was late for my period (as I had been so regular for the last 8 months) so casually tested with a clearblue digital on a whim and to our shock it came up as Pregnant 2-3 ! We were floored to say the least and now I am a few weeks off meeting our second Son or Daughter (sex unknown) even at 9months pregnant it’s hard to wrap our heads around that we will have another baby soon after trying for so so long and being told it was near on impossible and that I should of had my hysterectomy last year!

Sorry for the waffle but just wanted to shine a little light how these things can happen and to really hold out as much hope if possible (I know that’s a pain in the arse when people say it but I do mean it)

Speak with your consultants and see what options you have etc and wishing you all the luck going forward. Xx