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 😔

I did! I also have endo. Conceived naturally when I was 29. Now 34 and trying again… had surgery a few months ago so hoping that does the trick as I had a massive polyp. Sending baby dust to you, adenomyosis is horrible to live with xxx

@Endomummy

I did! I also have endo. Conceived naturally when I was 29. Now 34 and trying again… had surgery a few months ago so hoping that does the trick as I had a massive polyp. Sending baby dust to you, adenomyosis is horrible to live with xxx

Same situation here, conceived naturally at 30, now 36 and have been trying. Did they diagnose polyp through the scans? Good luck

Hey OP,

I am in a similar position to you although not 100% diagnosed. I have been having investigations done since 2017 where the doctors believed I had endometriosis. I have had a fight on my hands as the gynaecology at my local hospital are not much help at all. I have not seen them since may 2019 and I have been trying to get another appointment since November 2019. It's impossible down here at the moment.
I was admitted to hospital for something unrelated in November last year and they did a precautionary ultrasound. While conducting the ultrasound, they found evidence that I have adenomyosis and me and my partner have recently started TTC.

If you guys have any insights into the condition that would be greatly appreciated.

@Gillseybear

Hey OP,

I am in a similar position to you although not 100% diagnosed. I have been having investigations done since 2017 where the doctors believed I had endometriosis. I have had a fight on my hands as the gynaecology at my local hospital are not much help at all. I have not seen them since may 2019 and I have been trying to get another appointment since November 2019. It's impossible down here at the moment.
I was admitted to hospital for something unrelated in November last year and they did a precautionary ultrasound. While conducting the ultrasound, they found evidence that I have adenomyosis and me and my partner have recently started TTC.

If you guys have any insights into the condition that would be greatly appreciated.

Hey!!! It depends what symptoms you have and how does the adenomyosis show. My doctors didn't see it either but I had some symptoms. It's an estrogen driven condition and while ttc it's hard to maintain it at bay. I have been taking progesterone pills and now pessaries after ovulation to slow symptoms down and help implantation. We have tried for a 1st year without any luck and any medication. There are many many woman get pregnant with adenomyosis no problem, so go ahead on your ttc journey!!! Baby dust

@Lanicholla thank you so much for your reply and understanding. I cannot remember what it was the found of the top of my head. Going to give gynaecology a ring tomorrow and see if I can get through to them.

[quote Gillseybear]@Lanicholla thank you so much for your reply and understanding. I cannot remember what it was the found of the top of my head. Going to give gynaecology a ring tomorrow and see if I can get through to them. [/quote]
Good luck 👍

I have endometriosis and adenomyosis, they could make them easier to spell and pronounce for starters!

I have two teenagers and recently had surgery for endometriosis, I'm part of a big community over on Instagram, so was just going to say if you don't already head over to Instagram there is so much support there l.

Awful conditions to live with but I have 4 pregnancies and two births and took about 18 months to conceive my first and about 12 months with 2nd.

On the plus side labour was a breeze, I'd had worse cramps.

@justsatfloating

I have endometriosis and adenomyosis, they could make them easier to spell and pronounce for starters!

I have two teenagers and recently had surgery for endometriosis, I'm part of a big community over on Instagram, so was just going to say if you don't already head over to Instagram there is so much support there l.

Awful conditions to live with but I have 4 pregnancies and two births and took about 18 months to conceive my first and about 12 months with 2nd.

On the plus side labour was a breeze, I'd had worse cramps.

Thanks for sharing ! I'd love to join Instagram community as I just need some support, knowledge (if when you know that you know everything, there is always something you don't know ) I'm glad there is a hope for normal pregnancies and delivery and yours sounds a real breeze After I gave birth 6 years ago, and been ttc for over 3 years now, it didn't even stick once !

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

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 :(

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

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 🍀

@poppet131

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

Hey thanks for sharing ! Congratulations on BFP!! Its so noce to read stories like that.. Kinda feel like we in the same boat. I spot few days before period as well and my AMH on the low side too.i have tried acupuncture as well but did stop after few months ! Can I ask if the bleeding stopped after bfp? Xx

@Nurselife2020

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

Hey!! Thank for such a lovely story, made me smile! You are a fighter as well. I can imagine what it was to go through all the surgeries and diagnoses. Having a nice life balance is the key! We going for another IUI and IVF, we don't know how bad my adenomyosis is, as i haven't done a surgery. I am so frightened and the funny bit- I work in a medical clinic myself sticking needles into people arm :) Wishing you an amazing delivery!!! xxx

@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

[quote poppet131]@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[/quote]
Because adenomyosis gives so many symptoms through the cycle, it kind of makes sense that there is none if you get pregnant! No symptoms for a change
We have another iui scheduled for April and ivf in May! Deep inside I hope it won't be needed ..

@neverendingnightmare

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 🍀

Thanks for the message ! We gonna do another iui next month and ivf in May..

@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

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 😊

@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

Hey girls ! So an update on my post: we have ended up going for IVF, they only managed to have some sort of outcome by downregulating hormones, so I was on injection for few weeks of Buserelin. Xx I wish you all the best! Seems like IVF its the only way to go with adenomyosis

@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

That's similar to our situation , seems like Buserelin injections worked for me best. After ET I had still some bleeding, cramping and was convinced it failed! stay hopeful. Positive thinking as you still have 3 embryos!

@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

Hi !! I am very sorry for your loss.. I hope you will get pregnant soon again!
So adenomyosis has many triggers and no cure really, as just adjusting hormones. Progesterone would suppress adenomyosis symptoms slightly, as its lessens aestrogen levels. But yes , it's purely driven by estrogen. For ivf they had me taking estrogen tablets and I bled non stop. With Buserelin it's injections to down regulate hormones before stimulation. I actually had no bleeding or pain. The only way to diagnose adenomyosis is through laparoscopy. But mine was seen on scan and thickness of uterus is always higher and inflamed.