Pregnant with Endometriosis: Hi all, Just... - Endometriosis UK

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Pregnant with Endometriosis

EmaW
EmaW
45 Replies

Hi all,

Just looking for some advice, tips or just other peoples' experiences of being pregnant with endometriosis. Did it clear up your endo symptoms? Did they get worse? Did endometriosis cause any complications? Anything that helped you while pregnant...?

I have just found out that I am 6 weeks pregnant which is amazing :) It's still very early days though so we're not telling anyone yet and I feel like I have no one to really talk to about it or question about symptoms.

I have stage 3/4 endometriosis, my rectum is fused to some other part of my insides by endometriosis and I found out at the start of this month at our first IVF appointment that I have a hydrosalpinx on my left tube and endo all in my left ovary again...so it's come as a bit of a surprise to say the least, especially when we were waiting on a referral for more surgery before starting IVF.

I've had a lot of pressure and pain in my bum for the past week and it's starting to drive me crazy. I feel like I need some heated pants or a butt shaped hot water bottle to tuck down my trousers all day!

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V-ssd

Congrats. I wish you a happy and healthy pregnancy. Im sorry for jumping here but have you had changed something in your routine supplements or diet that may has help you in pregnancy?

And thank you for sharing here, it gives me hope.

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EmaW
EmaW
in reply to V-ssd

Thank you so much. We're being very cautious until we have the scan but have everything crossed.

And no problem...the only change I can think of is that I started taking CBD oil just after my last period. Whether it helped us conceive or not I don't know, but it certainly helped me feel more human.

I was really starting to lose hope and it does get harder each month. We've just got to keep fighting as best we can :) I wish you all the best.

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Faith103

Fantastic news on the pregnancy. Did you conceive naturally then. I have stage 4 endo and I have all the same symptoms as you with my rectum. I just had surgery 2 months ago and waiting for my next period to see the difference so I know your pain. But I would suggest making a food diary and taking plenty of supplements. The pressure feeling in your rectum is not nice but I don’t think there is much we can do about it. Yours will get better after surgery as I am hoping mine as once I start my period.In regards to your pregnancy I have been told that symptoms subside so once baby is all settled and your a bit further on I think all your endo symptoms should go until the baby is born 😀 xxxx congratulations 🥳

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EmaW
EmaW
in reply to Faith103

Thank you 😊 Yes! The IVF clinic had not long told us we would probably not be able to conceive naturally because I have a hydrosalpinx and that I would require surgery before trying IVF so very surprised.

I hope your surgery went well! Did they manage to clear everything? And fingers crossed that your pain will improve 🤞🏻

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Afrohair

Hello and congratulations on your pregnancy it’s lovely to hear I noticed scarring on my uterus stretching during my pregnancy it did ease all endo pain but sadly I lost my baby at 12.5 week I wish you all the luck in the world I’ve not had any surgery for endo but was about to and am being referred again

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EmaW
EmaW
in reply to Afrohair

Thank you and I’m so sorry to hear that. I hope your referral goes smoothly and surgery helps 🙂

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JayneGP

Congratulations!

Try not to worry, this baby was so obviously meant to be, is my first piece of advice. My second, is enjoy your pregnancy.

I had two healthy babies whilst having endometriosis, after my first it seemed to lessen in every way (hormones are a wonderful thing) and I had almost 7 years of no problems whatsoever. Then I had my second baby, miscarried her twin at 10 weeks (this was 1986, no routine scans) and had a pretty straightforward pregnancy. But, the endo came back with a vengeance after her birth.

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EmaW
EmaW
in reply to JayneGP

Thank you very much. I really hope so, I’ve been waiting for so long...when all the endo problems started it really hit me hard.

Here’s hoping there will be some relief like with your first coming soon 😊 What were your options for managing the pain after having your second?

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JayneGP
JayneGP
in reply to EmaW

It's an awful thing to have, anyone with it knows that, it affects every area of your life. My eldest has it, plus Hughes Syndrome and is having a hysterectomy on Tuesday this next week after 13 miscarriages and a healthy 10 year old.

Fingers crossed for your own relief after the birth of your healthy baby! I did go about a year without a lot of problems after my second baby, but my GP tried everything, from Ponstan Forte which did help with the pain, even at its worst, to hormone pessaries; in the end I begged for a hysterectomy, I had had 20 years of painful periods, gradually worsening. I know that treatments now are a lot better because more is known about endo.

So not a great outcome, but I can honestly say that it was one of the best decisions I have ever made. My life was mine again!

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EmaW
EmaW
in reply to JayneGP

Aw so sorry to hear that. It’s such an awful illness I can’t believe how long some people have had to put up with it in the past because no one really knew about it.

I hope everything goes well for your daughter.

Has the hysterectomy helped? And did you have everything removed? If you don’t mind me asking. Thanks again 😊

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JayneGP
JayneGP
in reply to EmaW

Thank you Ema, she's in theatre as I type so I'm a little on edge, even though I know she's in good hands with her specialist, she's still my "baby"!

My own hysterectomy was a total one, they took everything because the endo would have carried on growing on the organs it affected if they'd left my ovaries. I did have slight aches around the date my period would have been, but nothing like before (which was constant and worse), and that eventually disappeared. I think , if I remember rightly, it was around 12 months before I realised that I no longer knew when I would have been "on". The HRT fed the endo that was left, so that's probably why it lasted as long as it did. But I don't regret it for a single second.

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EmaW
EmaW
in reply to JayneGP

Of course, I hope everything went well and she has a speedy recovery.

I’ve heard of cases where ovaries were left and it came back so just wanted to ask. So glad that it’s helped you and you’re free from the pain 😊

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JayneGP
JayneGP
in reply to EmaW

Well, everything went well and he managed to do it keyhole... what a contrast to my huge bikini line cut and the 12 week recovery period. Lisa will only have to be off work 2 weeks (she has a desk job) and be fully recovered in 6 weeks! She was just a little sore last night when I spoke to her.

I can never understand the ovaries being left when endo is involved, it stands to sense that it will continue growing and causing problems.

How are you feeling now and is everything going well with the baby?

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EmaW
EmaW
in reply to JayneGP

Amazing! Sure it won’t take long for her to get back to her usual self 🙂

And I’m feeling a bit better thank you. The pressure and pain is still waking me up in the night but the days are easier. I’m just so hungry all of the time 🙈

Scan is 2 weeks tomorrow. It’s going to be the longest 2 weeks of my life...

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JayneGP
JayneGP
in reply to EmaW

I'm glad you're feeling a little better and the hunger is normal ;) Just be careful with the things you eat and don't put too much weight on!

Try not to think about it, as hard as it will be, and enjoy your little miracle!

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Lauzgill

Hi, congratulations!! I gave birth 18 months ago and I have grade 4 endo. We didnt tell anyone until after our 12 week scan as I've had previous miscarriages. I found the first few weeks a bit painful but it all settled down by 15 weeks ish. A hot water bottle was my best friend. I didnt experience any other endo symptoms during pregnancy. I had a fantastic birth (gave birth at 2am and was home by 6.30am) I breastfed so my periods didnt start to come back until around 6 months after. I had an MRI earlier this year and theres actually been some improvement. I am now starting to be more symptomatic though but I've had around 2 years of little or no pain so it's been a nice break! I got put in noriday which does help a bit.

Everyone is different but I wanted to share my positive experience, good luck for the future and I wish you a happy and healthy pregnancy x

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RosalieMax
RosalieMax
in reply to Lauzgill

That's such a nice story, and sounds a bit similar to us! Now 8 months pregnant after previous failed IVF, miscarriage and stage 4 endo, feel very lucky! X x

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EmaW
EmaW
in reply to Lauzgill

Thank you and huge congratulations on your little one! So nice to hear a positive story, thank you for sharing. I hope mine goes as smoothly as yours did 😊

And good to know that your pain subsided a few weeks in...I’ve not let go of my hot water bottle this week!

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RosalieMax

Hi! Massive congratulations! We also got pregnant naturally, after having failed IVF and a miscarriage, and I have stage 4 endometriosis all over my bowels etc. Feel so lucky! I have not had any endo pain during pregnancy which is great! Hope it all goes well for you! X x

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EmaW
EmaW
in reply to RosalieMax

Thank you and congrats to you! Hope everything is going well...not long left now 😊 that’s good to know. Hopefully after these first few weeks I’ll be pain free...

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BiancaBlanca

Hi there! First of all congratulations!!! Sorry to hear about the endo complications. I'd say, take it easy, think positive and enjoy. I've heard of numerous stories of women having healthy children with endo, even with ovarian cysts. They say the pregnancy hormones suppress the endo and cysts tend to shrink. That's what I'm hoping for, as I have bilateral cysts, one of which is rather big and I'm 7 weeks pregnant myself. I got pregnant naturally while on holiday thinking I had missed my fertile window that month. Couldn't believe the pregnancy test and the first US. So now I'm taking this day by day, praying and hoping it goes well. Wishing you a lovely pregnancy, keep us posted!

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EmaW
EmaW
in reply to BiancaBlanca

Thank you. The replies have been so supportive, it’s nice to have a moment to be excited about it instead of always being prepared for the worst.

Huge congratulations to you too! It was a big surprise to us too after being told I would need surgery before being able to conceive. I hope everything goes well with your pregnancy...like you said one day at a time 😊

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Greencupcake

Congratulations. I am also pregnant and have Endo. My gynae says mine is severe. I’m 25 weeks and have had some additional pain that is apparently due to previous endo surgery scar tissue and ligaments stretching.

Some people have advised supplements - be mindful they shouldn’t have vitamin a in them.

The best advice I had from my consultant was to try not to worry - if it’s meant to be, it will be. Also make sure you get plenty of rest and if you feel something isn’t right get it checked out.

Xx

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EmaW
EmaW
in reply to Greencupcake

Thank you and congratulations to you too.

That’s good to know, I wondered how surgery scar tissue may be effected by a huge baby belly.

😊 I’m liking the advice to rest and take it easy.

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flossy24

Congratulations that is wonderful news! I am also pregnant with stage 3 endo just a few days behind you. It's my first pregnancy too so reading all the comments has been really helpful. It's hard enough being pregnant and not being able to tell anyone but being pregnant with endo is quite isolating and scary. Only symptoms I've had so far is cramping (assured this is nornal) sore boobs and some strong food aversions. Good luck please keep us all updated on your journey 💖

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EmaW
EmaW
in reply to flossy24

Ooo congratulations! 😊 Yeah and Google isn’t being the greatest of helps either.

My god the sore boobs has been a killer for me! I think the pain is easing up a little now and the pressure in my bum thank god. What’s next? Morning sickness? 😣 Thank you, wishing you all the best!

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Ginger24

Congrats on your pregnancy, fingers crossed for it to be smooth sailing.

Unfortunately though I do have to say it is a common misconception that pregnancy helps, slows down or gets rid of endo. A lot of people have been told this by doctors but there is nothing to support this. Endo is hormonally affected so some women do see a reduction in symptoms during pregnancy which then return after birth.

Each persons journey is different and there is no real way to predict how your body will react but I wouldn’t pin hope on that it will make any difference to your endo just in case.

I know someone who had stage 4 endo and was told that getting pregnant is the best option for treatment. She struggled for 4 years with IVF to get pregnant and finally when she did so her endo pain increased due to the irritation the pregnancy had on the endo tissue. So was extremely disappointed and following the birth it was worse than ever. She was then advised to proceed with a full hysterectomy (bad hospital and bad surgeon). It was only after this when she spoke with an endo specialist that she was made aware she had been given the wrong information.

I would ask the advice from your doctors and endo specialist, and if you have had hormonal treatments in the past to try and combat your symptoms think back to how these affected you? This will give you the best idea of how your body will react.

Sorry it’s abit negative but I hope it helps.

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EmaW
EmaW
in reply to Ginger24

Thank you 🤞🏻 And not at all, I appreciate the honesty as like you said everyone is different. If I can get 9 months symptom free that’ll be a relief for me. And then I’ll have to go from there.

It’s sad to hear about your friend. Shocking to think that your life can change so rapidly just from a piece of advice, and scary if it turns out to be wrong too. I hope they figured out a way to manage the endo pain after all of that.

I think it may be best to see if I can keep in touch with my original endo surgeon...he seems to know what he’s talking about.

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Jaas1

Hey congratulations on your little bundle of joy!!! I am 4 months pregnant with endo and to be honest the pregnancy symptoms override my endo symptoms. The only thing endo related I get is that I can feel a sharp pull on my lower left abdomen here or there, it's not all the time and I can normally get over it. Apart from that my 2md trimester is going well!

I would reccomend you just enjoy your pregnancy and dont think too much. If you can try and eat healthy but saying that all I wanted to eat was chips and coke! Drink PLENTY of water that's crucial (approx 8 pints) and i found yoga stretches which i found on YouTube and light exercise helped to ease my muscle aches as they're continuously expanding.

Good luck and I hope everything goes well for you! Enjoy!!

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EmaW
EmaW
in reply to Jaas1

Thank you and congratulations on your pregnancy too! 😊 That’s promising to hear, I hope the rest of your pregnancy goes just as well.

Yoga sounds like a good idea. I will have to have a search for some good positions.

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Anne-Marie2017

Firstly congratulations. I’m sure you are on cloud 9 ❤️❤️ I also have endometriosis and my pain was always an intense rectal pressure. My periods themselves were fine but from approximately cycle day 5 until I ovulated on cycle day 14-16 I would have excruciating rectal pain/pressure which affected my everyday life. When I would ovulate the pain would go away. It was determined at my endometriosis specialist centre that the lead up to ovulation was the trigger for my pain. My uterus was also in a retroverted and reteoflexed position which also explains my pain. My husband and I had been referred for IVF and we’re about to attend our first appointment when I found out I was pregnant naturally. My little girl is now almost 8 months old and I had no endometriosis pain in pregnancy and also none since her birth (my periods returned when she 8 weeks old).. So I count myself very lucky and hope it lasts as it’s given me a new lease of life after lots of pain and heartache. I had one episode of pains at 18 weeks which they put down to my endometriosis (adhesions stretching as my belly grew) but otherwise I had a lovely pregnancy. I hope you have the same x

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EmaW
EmaW
in reply to Anne-Marie2017

Thank you, yes we keep getting little moments of excitement when we stop and think about it. 🙂 I know there’s always an uncertainty early on but looking forward to getting to the scan for it to properly feel like it’s happening.

And that’s such an amazing story, thank you for sharing, it gives me hope. And congratulations on your little girl! I really hope you stay pain free so you can enjoy every moment.

I always assumed that everyone would have the worst pain during their period so interesting to hear that yours was so different. I feel most of the time the pressure is what causes me more pain as I just don’t know what to do with myself.

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wanwood

Congratulations!!!

Like a few others on here I am just behind you by a few days myself! (Such an amazing answer to prayer.) I've had very thorough excision in the last year so I'm hoping there's not much endo around now, but I've had the shooting pain on my ovaries returning recently. Hope that's normal enough.

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EmaW
EmaW
in reply to wanwood

Congratulations! Exciting to see a few others around same stage 😊 it’s made me feel a bit more relieved that there are others I can speak to about it even if it’s just to compare symptoms 🙈

I really hope that the excision has helped and you have an amazing pain free pregnancy. I hope the ovary pain subsides soon too.

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wanwood
wanwood
in reply to EmaW

Yes! It is exciting! Thanks so much for the reply and the well wishes, and I hope your symptoms settle down and things progress nicely! x

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Lee1987

Congratulations, I have recently found out I am 13 weeks pregnant naturally although a year ago I was told this was impossible due to blocked tubes and 2 huge endometriomas on ovaries. They called it a medical marvel. I am stage 4 endo had 3 surgeries in 3 years and was due to have another 4 weeks ago but luckily was cancelled. My symptoms have eased alot but I do have a large cyst that is moving around the back as the baby is growing, consultant has said to me to enjoy it. Im trying not to think too much about it atm. I have been eating healthy and just walking as excerise atm, fingers crossed for you, one piece of advice I will say is if you are tired rest properly. I wish you all the best x.

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EmaW
EmaW
in reply to Lee1987

Thank you and congrats too! It sounds pretty amazing after going through all of that. I really hope you have a great pregnancy.

At what stage did you tell the doctors and cancel the surgery?

I am currently waiting for my referral to an endo specialist centre for further surgery. Because it’s so early on I don’t want to call and cancel in case anything does happen and I still need to go ahead with it but also not sure when I need to make my consultant aware of my pregnancy?

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BonitaBB

Congratulations!! What lovely news!

I'm currently 16 weeks pregnant with stage 3 endo, and completely understand your reservation and anxiety. For me, my gyno symptoms of endo have pretty much gone (wahoo!) However...especially early on I found I was having a lot of dull achey tender pain in my abdomen, and this (I found out) is because of scar tissue from surgery's and having an ovary stuck to my uterus. When I had an early scan as was concerned, they let me know it was likely I'd have quite a bit of pain as things expand etc, so now I feel a lot mor relaxed when I have pain like this. I would really recommend for peace of mind if you get super anxious and have a lot of pain, going for an early scan at an early pregnancy unit, I found this very reassuring.

I am (from about week 9 onwards), have quite a lot of intestinal issues (and a lot of pain!) - pregnancy makes everything slow down and I let my endo diet slip when feel super sick to my stomach, and i think had an endo flare up in my bowels. Lactulose is your friend, as are Rennie's!

I wish you all the best in your pregnancy :) my only other things I'd like to pass on(but know everyone's different):

- telling a couple people very close to us earlier on really helped calm me, and was also reassuring just in case anything did sadly go wrong to know I'd have a core support network

- limit reading baby forums - I did this too much and stopped a few weeks ago and feel a million times better! So many stories of loss, for me I think meant I wasn't enjoying my pregnancy as was worrying

I wish you well in your pregnancy :) :)

Xx

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EmaW
EmaW
in reply to BonitaBB

Thank you very much 😊 and congratulations to you too!

So glad to hear you are currently pain free and having a good pregnancy. Did you have to request an early scan through your GP or find/fund it yourself? My scan date is 15th November, just came through in the post 🤞🏻

And that makes sense. I guess since I recovered from my laparoscopy it never crossed my mind that the scar tissue could cause extra pains. And I can feel the slowness on top of all my existing problems. I’m hoping it will pass soon!

Thanks for the extra tips...not sure I’m going to be able to keep it a secret much longer 🙈

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BonitaBB
BonitaBB
in reply to EmaW

I totally didn't think about the scarring either - it's not something they warn you about at all.

& It was via my GP (who referred me to the early pregnancy unit), as i was worried the pain was indicating ectopic, but you should have an early pregnancy unit in your area and at least in Oxfordshire I discovered afterwards you can actually self refer?

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EmaW
EmaW
in reply to BonitaBB

Ah ok I might try and speak to the midwifery service then and see what they suggest.

I didn’t get to speak to the GP before hand so don’t know what’s normal or not or what really to expect...I’m probably just worrying over nothing 🙃

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Allyejohns

Congratulations, I have a very healthy almost 6 months old girl. I fell pregnant very quickly after a course of zoladex and a laparoscopy.

Initially I had some stretching pains which meant I had some early scans. But a hot water bottle really helped.

No complications in pregnancy and I was worried because I have andenomyosis too.

Since birth I've breastfed so my periods didnt restart until bang on 12 weeks, I then started the mini pill because you can have while breastfeeding and I'm on progesterone only contraceptives now.

Although I'd prefer no hormones I have been ok, I've had two mini bleeds with zero pain. Hoping it's all calmed down a bit :).

Loads of luck and love

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EmaW
EmaW
in reply to Allyejohns

Thank you. And amazing! Congrats on your little baby girl 🙂

I’m pretty much married to my hot water bottle at the moment. And I’m glad to hear you’ve been pain free so far. I really hope it lasts for you 😊

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Purplewitch18

Congratulations! I had the odd flare up but it did stop the endo most of the time.

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