Pregnancy with Adenomyosis

[Lilbear14]

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

@Darklava09 The doctors definitely did scare me but I am under gynae so fingers crossed I can hear something positive, oh wow that’s so good to hear about your SIL, I’ve just heard awful things until I’ve come across this group x

I think the online support groups for endo etc are dominated by people needing to vent when they're in lots of pain, and that is completely understandable. They do have a tendency to be quite a negative place, so if you talk about pregnancy, most people put trigger warning, which again is understandable. So when you are fortunate enough to get pregnant, you end up feeling a little guilty, and seem to steer clear of sharing such happy news with the group, especially if endo/adeno symptoms calm down. I've been there, not sure how my fertility would pan out, and getting upset (initially) seeing pregnancy announcements, but also I feel really happy to hear someone's happy story and that these conditions don't always equate to fertility issues.

@RachelBlue it’s lovely to hear that there is a bit of hope, I’m so glad I found this group, I’m don’t know anyone with Adenomyosis so it’s nice to speak to speak in the same boat.

Hi ladies, I was diagnosed with adenomyosis around seven years ago (I also have fibroids). The gynaecologist at the time told me I had 2% chance of falling pregnant naturally and I was referred for IVF. Problem was I couldn't get my weight satisfactory for the NHS. I am currently 24wks pregnant (natural conception) after 12years trying on and off, and all is going well. So believe it or not there is hope out there for all of us, just try to stay positive (easier said than done)

@cavz congratulations... it’s so nice to hear that there is hope, thank you for messaging on here.

I am 37 so I was hoping before I hit 40 I would have my 4th, but I do have 3 beautiful Children that I’m very grateful for, I wanted a big family as I am a only child so a big family is all I’ve ever wanted x

Hi all, just came across with the thread as I looked up the chances of getting pregnant with endo and adenomyosis which I was diagnosed few years ago after laparoscopy. Have just failed twice FET (1 chemical pregnancy and 1 fail transfer) in the last six months, have two more blastocysts to go but really worry if my condition is worth even to keep trying. Any success stories would be most grateful.

Hi @Peonylovexx I know this is a little late. I haven't got a success story (yet!), but I just wanted to say I'm in exactly the same boat as you. 2 failed and now have a few tested embryos in the freezer and am worried about putting them back as have adeno diagnosed. Out of interest what does your ivf clinic say? Mine say the evidence on adeno is difficult...while there are associated miscarriage risks it's hard to know what other factors are involved. My doctor said she has women who have adeno and fail multiple times and then have a successful pregnancy, so it's hard to say it's categorically an issue with the uterus causing miscarriage. Not sure if any of this is helpful but wanted to say you're not alone in your situation. Have your clinic recommended any treatment for it such as down regulation?

Hi

I also have adeno confirmed by MRI. Consultant also says adeno and pregnancy is very complicated and recommends IVF as our only chance but with my age and the increased risk of mc I don't think we are going to go through with it. TMI but does anybody else who has adeno get a foul sometimes fishy smell after unprotected sex? I have been checked for BV, infections etc and all clear. I never had it before I had my son/c section. I feel that the adeno changes the environment and PH of the uterus which causes the sperm to go bad quickly somehow?!

Hi @Nicola1308 ...I too have just been diagnosed with adenomyiosis and have 3 children ...all c section ...I’m absolutely desperate for a 4th child and get so disheartened every month my period comes , been trying for 6 months now and I’m beginning to feel like it will never happen ...I know I should be grateful to have three ...but I’ve been with my partner for 4 years and would have loved to have had one with him ...hope all goes well with you ..thought I would reach out and let you know ..you are not alone xx

@AMB83 yes I also have this problem ..for the two years I have had it ...I started to get a fishy smell ...I was always conscious and bathing all the time ...always taking bv medication...I know take garden life probiotics for vagina care and that has helped a little xx

Hi @AMB83 thank you for your reply… I have been trying for 6 months now with no success :-(, I don’t think this will ever happen for me now, I spoke to my gynaecologist who’s said there is not real data that says you can’t fall pregnant with Adenomyosis but maybe slight implantation problems. Just so many different things online and none seem positive x

Hello ! I m new here.
I m 32 years old. I was recently diagnosed with adenomyosis. My partner and I we re trying to conceive for almost 2 years. I never had a pregnancy. I read all about this condition on Internet and I am terrify.

For now my Doctor from Gp said I should wait for the fertility clinic to contact me.
Could you please tell me , what treatment did you had , or some advice , how I should handle this condition? Please..

Hi… there isn’t any treatment for Adenomyosis unfortunately 😔, I was told if it’s severe only option is hysterectomy, I have 3 Children before I had Adenomyosis but I would of loved a forth but read some scary stuff online. My
Gynaecologist said there is no point worrying about something that cannot be changed… which upset, there isn’t much data on this condition and fertility.

Hey,
Yes I read about, no treatment for adenomyosis.
But my concern is more for fertility issues. I m 32 , no children. We are trying to conceive for almost 2 years. 1 week ago I was diagnosed with adenomyosis..

I was told two different things… one was it’s hard to get pregnant and implantation… then another doctor said it’s then high risk carrying a baby without complication so I’m so confused with it… my guess is if you have been trying for 2 years then it’s probably hard to conceive:-(, I’ve been trying for 7 months I was diagnosed a year now.

@Peonylovexx I had my first son 22 years ago and was diagnosed with severe adenomyosis after trying again for 5 years. Fast forward to now, I am 43 and after 4 months of menopur, 2 egg retrieval, 1 mock cycle I am pregnant on my first transfer! It's still very early at 5-6 weeks. But I am encouraged by the intense nausea! I do have dull aches that concern me but I am hopeful. I hope this encourages you.

@Denisa89 I am new here but no stranger to adenomyosis. I've had the condition for over 15 years. While not trying to conceive I stayed on oral contraception. That helps stop your uterine lining from growing like crazy every month. I do believe suppressing my lining for many years helped. I went to an IVF specialist to get pregnant (my first son is 22). This is my first time pregnant since then. I believe with the right therapy, following all instructions to the minute, you may be successful. (And alot of prayer).

Hi
I was diagnosed with endo and adenomyosis after 8 years of trying and being told I didn’t qualify for nhs ivf as I had low ovarian reserve. This never added up to me as I always had such awful periods and bleeding and pain in between.
I finally started ivf last year after 6 months on zolodex and the long protocol. I had two of my 3 cycles of which i only got 1 high quality 5 day embryo out of each cycle. I had a failed fresh transfer on the first and the second I decided to freeze as I felt the womb wasn’t good to implant and started concentrating on getting as many embryos as I could and looked into surrogacy.

Always told implantation was basically impossible due to the focal adenomyosis I have at the fundus of my uterus and some diffuse patches.
I conceived naturally in June this year. I am now 13 weeks pregnant and everything is going well so far. I’m having regular scans with my Ivf clinic who are in total amazement as is my endo/ Adenomyosis dr. He said now I am 13 weeks and baby is growing normally the adenomyosis has completely calmed down and he isn’t particularly concerned about rupture or preterm delivery as everything looks calm and pregnancy is now primarily progesterone driven it should stay that way. He said the hardest part was implanting and it growing correctly so we know it implanted in healthy womb tissue and not adenomyotic tissue. Still being monitored regularly but I hope this gives some hope to others.

Hi there. I have adenomyosis along with endometriosis. My IVF consultant didn't indicate that either would be a problem once pregnant (which I am now - 20 weeks). There are some articles suggesting it can impact pregnancy in the same way there are ones indicating it can impact fertility. I found reading them was quite worrying however I have to say I haven't had any issues so far at all. 20 week scan confirmed all is ok. Personally as pregnancy has shut off the hormones that in particular make my Endo thrive... I haven't felt any of the ill effects of Endo or adenomyosis which has been a welcome relief. Wishing you well and although I hate it when people say this to me, try not to worry I have spent most of this pregnancy doing just that and have started to accept it's out of my control and to just try to accept after 6 years of bad luck maybe it will just all be ok xxxxx

Hi…. Congratulations that’s wonderful news, thank you for giving us all hope, I’ve been trying for 9 months with no success, suppose it’s just luck implanting on healthy tissue 🤞🏻, so are the doctors no longer concerned after 12 weeks x

Hi Congratulations…. Yes I have read myself some not great information about Adenomyosis and pregnancy and very different confusing stories and not many Doctors actually know the impact on pregnancy and Adenomyosis, I’ve been trying for 9 months now and no success unfortunately, it’s great to hear success stories on here knowing there is some hope x

Wow So great to hear this from you and your 20 weeks. It’s just so hard isn’t it as no one really knows, yes there’s the articles but from what I read there relatively small studies. To be where we are we have already defied the odds. I too myself feel that this is a miracle and hoping it’s meant to be after a total of 10 years trying.
All my scans so far show a perfect baby and a calm womb adenomyosis hasn’t grown in fact the mass looks small compared to baby and we just have to go with it. Please if you don’t mind would be good to keep in contact as we progress good luck to you Xxx

Thank you yes it’s amazing and scary. It’s so hard to know I believe that the zolodex and then Ivf down regs and stims all helped me to conceive I hadn’t been able to get pregnant at all in the last 10 years. Implantation seemed to be impossible. I think a combination of everything really got me here. There is a lot of negative reads out there and I’ve never found drs to be particularly positive either and I had started looking into surroggacy as I’m 36 now and was at the stage after starting this journey at 26 where it didn’t matter how I got a baby. I also took supplements COQ10 600mg daily and DHEA which is contraversial as adenomyosis and endo seem to affect egg quality and quantity and I never got a lot during ivf rounds only 3 each time. I tried to understand maybe this is all my body can do and quality is better than quantity. Don’t give up hope X

Hi… so was you taking COQ10 just before you fell pregnant, I’ve been taking it for 2 months as I also have PCO and I’ve just turned 38 x

Hi
Yes I’d taken coq10 , Dhea on for 3-4 months off for a couple. High dose vitamin d & omega 3 all for about 18 months in total. I’d stopped taking it literally just before I fell I’d had enough of everything and it not working. we were also taking a break until September/ October from everything. They say you have to do something for at least 3 months before it has any effect on your eggs. I’d also been eating a lot of fish rice veg salad and fruit also really concentrated on high protein hence so much fish also had snacks stuff such as yogurts high in protein alpro milk, & any snacks bars that were too. I’m allergic to nuts so couldn’t have those. With PCO I don’t know if this helps at all. X