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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Original poster

Pregnancy with Adenomyosis

78 replies

Lilbear14 · 28/09/2018 13:32

Afternoon all! I am new here and I am currently 5 weeks pregnant.
A few years ago I was diagnosed with adenomyosis and in all honesty I thought my child bearing days were over.
Luckily, we have managed to conceive and we are really excited.
But I am also absolutely terrified something will go wrong.
I'm due to see the midwife for the first time in 2 weeks, which I will be mentioning my concerns.

Has anyone got any experience with pregnancy and adenomyosis ?
Biggest concern is that it's not going to be taken seriously by any health professionals as noone seems to know much about it anyway.
Thank you all

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CrabbyPatty · 28/09/2018 13:36

I think I have adenomyosis, although no confirmed diagnosis. I have had a miscarriage, but I'm currently over half way through a healthy pregnancy. I hadn't heard of the condition until my miscarriage. My symptoms were heavy periods and pain during sex. I also recently discovered I had an enlarged uterus. If I hadn't of got pregnant so quickly after miscarriage I'd definitely have explored this further,

Original poster
Lilbear14 · 28/09/2018 13:42

Yeah I had all the usual symptoms. It was after a miscarriage that they all got worse.
3 cycles before we conceived my periods actually died down and were "normal" and I still see it as a sign that it was our time to have a baby haha.

This pregnancy is very different to my others already, symptoms started a lot earlier and I have had dull aches on and off for a day or two before I got a positive test.

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IngaMB · 06/10/2018 07:44

I have also been diagnosed with Adenomyosis as well as Endometriosis. Please try and get yourself under the care of a gynecologist. From my reading I see that late miscarriages are a possible outcome due to the wombs’ inability to stretch. These are conditions that are little talked about by medical professionals and I imagine your midwife will not be educated in this so don’t take any chances. Let me know how you get in and best wishes. Xx

Original poster
Lilbear14 · 06/10/2018 09:11

Problem I have is I have very little chance of seeing a gyno unless I go private and that simply isn't an option. I know the risks and misscarry and prem birth are more likely.

I will be expressing my concerns to the midwife and I will just have to take it from there.

OP posts:
BLM18 · 06/10/2018 10:09

I had a scan at 5 weeks due to bleeding and was told I have adenomyosis. 8 years ago I was told I had endometriosis. Scan didn’t show any baby but possibly to early so going back Tuesday for another scan. I definitely have pregnancy symptoms but they want to see it located in the right place. I don’t know much about adenomyosis but wondering if that’s why I had early bleeding. I’ve also had cramps and aches on and off

Original poster
Lilbear14 · 06/10/2018 10:24

@BLM18 what weeks did you have the bleeding?
Did they do an internal scan? And have they done your bloods? I'm 6 weeks and 2 days now and I've not had any bleeding however, my last cycle was 42 days not my usual 28-30 days. So that has concerned me, they tried to book my first midwife app at 8 weeks but I asked for it earlier as I do have concerns.
The only thing different I've had to other pregnancies was really dull aches for the first 4 weeks.

OP posts:
BLM18 · 06/10/2018 12:25

@Lilbear14 bleeding was at 5 weeks. Yes had internal scan but they couldn’t see anything, but said could just be to early. Had 48hr bloods , my levels were 350 which they said was very low but they the went up by 81% so that’s why I’m going back for scan Tuesday. Today I am 5+5. If Tuesday’s scan shows nothing then they will be treating it as eptopic .

Original poster
Lilbear14 · 06/10/2018 12:32

@BLM18 it very well could just be too early. And I hope they do further tests before coming to that conclusion.
A few months ago I went to the doctors as my periods went very light and they were convinced I was pregnant. When I spoke to them about it they said it's not uncommon for women to bleed during pregnancy. I wasn't pregnant at this point.
It seems that medical professionals do not know much about adenomyosis in general nevermind when pregnant. They didn't seem too concerned when I first went to the doctors as I mentioned it then and they just told me to mention it to the midwife.
I really hope that it is just too early to see anything and everything will be okay for you

OP posts:
BLM18 · 06/10/2018 12:45

@Lilbear14 Thankyou. Bleeding has stopped and I’m only having the odd aches and pains so feeling positive. I have lots of pregnancy symptoms but I guess until the scan we don’t know if pregnancy is growing in right place.

If you are worried about any pain etc then ask Doctor for referral to early pregnancy unit. When is your midwife? My first one is 3 weeks away x

Original poster
Lilbear14 · 06/10/2018 12:54

@BLM18 mine is next week when I'll be at 7 weeks.

I did a pregnancy test the other day and the lines were very very strong so that settled my mind a little bit. I think I'll be very very nervous all the way through. We don't actually know how long I've had the adenomyosis as I've always had very bad periods so I could have had is as far back as to when I had my first 11 years ago and that pregnancy and my second were fine.

OP posts:
BLM18 · 06/10/2018 13:02

@Lilbear14 sounds like you have nothing to worry about. Hope next week goes well. I’d be interested to hear what your midwife says about adenomyosis, won’t surprise me if she’s never heard of it !!

Original poster
Lilbear14 · 06/10/2018 13:07

@BLM18
I hope things go well for you too, keep me updated.
Yeah I will especially if they're new to the game aswell they won't have a clue. Hopefully that my spur them on to actually look into it though

OP posts:
Mum2rosa · 13/11/2020 13:43

Hi there
I know this thread is over a year old but I've just found out I'm pregnant with adenomyosis and really worried! Was hoping to get an update on how everything went with you lilibear14?

feistymumma · 28/11/2020 14:27

@Mum2rosa hiya, I have adenomyosis too and am a little worried as well. I am actually on the waiting list for a hysterectomy but just found out I am expecting. Not only do I have a risk of age as am 44 but also the risk of adenomyosis. I am going to ask to be put through to the consultant I am assigned to but will also call up the midwife team on Monday for further advice.

Nicola1308 · 08/02/2021 19:30

Hi, I’m new to mumsnet I wanted more information with Adenomyosis as I’ve been diagnosed with it and really wanted to try for my 4th as I am 37, but I’ve read so many horrible things with high risk complications and I already have Health Anxiety, just wanted to see how you are with your pregnancy, x

AMB83 · 13/02/2021 21:24

@Nicola1308 I too am 37 and trying for our second child after a c section 6 years ago. How did you get your adenomyosis diagnosed? X

Nicola1308 · 13/02/2021 21:58

Hi... so I started spotting around my ovulation, the GP sent me for a scan that’s when they see I had Adenomyosis, I’ve had 2 previous c sections which maybe the reason why I have this, I am lucky as I have 3 and very grateful but I would of loved a 4th x

RachelBlue · 14/02/2021 12:53

Mine is not diagnosed, but it's a working diagnosis. I've been diagnosed with endometriosis, but my gynaecologist thinks I have adenomyosis too. I'm now 7 weeks pregnant with my second child and stumbled upon this thread whilst researching if there are any risks/precautions/success stories etc.

I had a lot of uterine pain in my first pregnancy, which was 5 years ago, and my periods got even worse than ever since then. I'm 36 and planning to go through the hysterectomy process if I'm fortunate enough to have my second child.

Darklava09 · 14/02/2021 13:57

I have both endo and adeno. I luckily saw my gynae the day after I found out I was pregnant. He was shocked and pleased.

He did say there is some risks about miscarriage and pre term births but said the evidence is weak and I trust him a lot he’s one of the best in the country.

I’ve had a scan at 6 weeks, 10 weeks and next week I’ll hopefully be 13. So far so good. Did have some horrific cramping but got through the worst of it now. I had my son 9 years ago and that was uneventful but I don’t think I had either condition.

Nicola1308 · 14/02/2021 14:47

Congratulations... I was worried that it would be impossible to conceive, this give me some hope, I have a gynae the beginning of March hopefully tell me more x

Nicola1308 · 14/02/2021 14:50

@Darklava09 congratulations.... this have given me a bit of hope, nice to hear a doctor being hopeful, GP Doctors I’ve spoken to don’t sound as positive x

RachelBlue · 14/02/2021 15:59

@Darklava09 congratulations! I got to 40+12 last time, was almost induced! But then I'm not diagnosed with adenomyosis officially, so who knows.

RachelBlue · 14/02/2021 16:03

@Nicola1308 good luck with your journey, but definitely discuss with your gynaecologist, they will be able to give some strong medical advice.
Hopefully we can get some updates from those who have been through this already.

Nicola1308 · 14/02/2021 16:22

@RachelBlue thank you... definitely be nice to hear of successful stories x

Darklava09 · 14/02/2021 18:42

@Nicola1308 unfortunately GP’s don’t know a lot about our condition. They are not specialists in the field and have no real idea of how it effects us.
My SIL also has endo under the same consultant and is pregnant too. She’s almost 20 weeks, first baby and is ok.

Adeno may cause a bulky uterus but I don’t think it effects a lot in terms of carrying but deffo check with your consultant. Good luck