Severe endometriosis pain and pregnancy - Endometriosis UK

Endometriosis UK

56,345 members45,108 posts

Severe endometriosis pain and pregnancy

SkyRose profile image

Hi everyone,

I’m sorry if this is upsetting for people who are ttc - I know how much it hurts to get a period when you’re trying and how jealous you feel when you see others who have managed to get pregnant. But I’m desperate and I don’t know where else to ask.

I’m currently 19 weeks pregnant with my first baby. The pregnancy has been horrendous from day 1, with spotting in the first trimester and severe pain constantly. Every time my womb stretches it feels like I’m having a period but 10 times worse and I’m in agony for days after as everything feels wrenched and sore. No ultrasound can find anything wrong so some consultants are assuming it’s endometriosis on my bladder and in my womb stretching and tearing, but others say pregnancy should ease the symptoms.

Is anyone else struggling at all, or has anyone else struggled with severe pain linked to endometriosis in pregnancy? I feel really alone and I’m mostly on bed rest, unable to work etc. I just don’t know if things will get better, or if I should resign myself to another 20 weeks of horrendous pain.

Any experiences would be greatly appreciated!

35 Replies

Oh dear. Sorry to hear about your pain. I have had 3 pregnancies (2 successful). I didn’t really experience the pain you sadly are. I did have quite significant stretching-feeling pains but was always told this was ligaments etc etc. So I know I’ve probably not helped at all but I do hope things improve. Babies do seem to have growth spurts so hopefully you’ll get some rest from the pain soon. Good luck xxx

SkyRose profile image
SkyRose in reply to endotheline

Thank you for your reply - the maternity unit think the pain is ligaments and also scar tissue stretching which isn’t ideal, but they said that hopefully it’ll get better as the baby goes through her main growth spurts in the second trimester 🙈 I really hope they’re right! It would be nice to enjoy a bit of the pregnancy, even if it’s only a few weeks! Thank you so much again xxx

Congratulations hun. Sounds like its adhesions hun. Im experiencing same thing it really is draining around you finding it getting worse after eating? Im so sorry hun everything stretching out really doesn't help with it. I result to hot water bottles pain meds if need be drs have said its OK but i feel its worse when I've eaten a large meal or even small and the digestion causes swelling more and it hurts times i go on to liquid diet and small snacks make sure not to get constipated as it can hurt loads more. I hope you get relief soon hun. Endo doesnt always go into remission for people when pregnant im so sorry your going through this. It'll be worth it when bubu is here 😘💗

Thank you so much lovely - I really feel for you too. I’m sorry you’re in so much pain as well. The codeine really does ramp the constipation and I’m finding lactulose gives me pain on the right hand side that’s really bad so I’m trying to avoid taking both unless it’s absolutely unbearable 😩 it’s extremely draining. Yes I do actually find it worse around eating! I think it’s the weight of the bump as my bump is so much bigger at night when the muscles relax as well. I’m sitting on an exercise ball every day and just watching tv which takes the weight off - I don’t know if that would be helpful for you too. At least we aren’t alone ❤️ it’ll be worth it. Just have to keep thinking that! Xxx

I find if i have fibre the cereal with some dried dates and drink water throughout the day lots coz I'm sure lots of us don't get enough coz of constant toilet trips im OK regards constipation. If i need to result to meds which is codeine or oxycodone i don't get constipated. The weight doesn't help hun its just about us trying to manage it. Ilk have to get a ball knowing my son he'll pinch it off me 😂 to roll and bounce off. Yes breathe through it take your mind to a happy place and remind yourself I tell be worth it 💗😘

I have been having fybogel as well which is wonderful too - drinking so much water each time is helpful just on its own. Heartburn is murder as well now 😂 Haha I know what you mean - my husband nicks my ball to do his back exercises as well 😂 I know the second that my little girl is in my arms and looking at me I’m going to instantly forget all of this. It’s just getting to that point without going insane I think! 💖

Iv been lucky regards heartburn.Sorry your suffering with that also.

You sure will hun its such a blessing girls are brilliant too not saying boys arent but i enjoy girls that bit more.

Just know your not alone and pm me if you ever wanna chat hun.

💗😘

She’s my first but I was secretly really hoping to have a little girl to be honest - just because I love the idea of doing girly things together. She might not be like that at all and might like sports with my husband instead but I’ll be just as proud watching her if that’s the case ☺️ thank you so much lovely, it means such a lot to know I’m ok 💖

😘💗

Hello SkyRose,

I’ve a toddler and a 3 month old and I had endo pain with both. With my first child I had awful pain, had a lot of bleeding, and needed a lot of bed rest. Initially I thought and was told that it was pain from ligament-stretching. Subsequently the working diagnosis was my endo as the pain was in sites where I’d had endo diagnosed as opposed to classic round ligament areas and while scar tissue does stretch during pregnancy it does so not quite as readily as normal healthy tissue.

Good news is that my baby was happily oblivious to how rubbish I was feeling and completely unaffected by any of it. Thankfully I also had a lot less pain second time around (presumably because the scar tissue had been stretched by my first pregnancy).

But make sure you keep your midwife and GP informed about any pain or symptoms you are having - it’s always better to get anything you are worried about double checked.

Best of luck with everything, x X x

Such a relief to know I’m not on my own! I was at the maternity unit at 1am because the pain got so bad, but they said this is a big growth week and said exactly the same as you - that the adhesions aren’t so easily stretched which is likely why the pain is so bad. It’s not a fun experience and it’s making me miserable about my pregnancy which is so unfair, but fingers crossed it’ll all be fine and that baby will be ok throughout ☺️ That’s my main concern. Thank you so much for replying xxx

I know it is really cruel. If you are lucky and fall pregnant when you’ve struggled with Endo you really want to enjoy every aspect of the experience.

Best advice I have is just to rest up as much as you are able to and indulge in anything that helps you feel relaxed and takes your mind off the Endo side of pregnancy. Be kind to yourself basically - pregnancy is an endurance effort even with the extra symptoms you are experiencing on top.

x X x

Thank you - lots of baths I think... they seem to be one of the only things that help. Just got to keep thinking that it’s going to be totally worth it at the end, so I have to keep going to get the reward! ❤️Xxx

Awww 🥲 so sad to hear you are in that much pain. Totally feel for you.

As endometriosis & Fibroids pain is bad enough especially when having a period. I think you just need to have plenty bed rest and keep hot water bottle to ease the pain. I know it’s awful laying in bed most of the day. I’ve done it when I’m in a terrible way. But as you are pregnant! For the baby just pls take plenty rest and less movements. I had a friend who was in your similar situation. In the end it was plenty bed rest with care. Get massages also helps. Most beautiful precious moments will be having a pleasure of your baby in your life and arms. Pls take care ❤️❤️ I’m sorry I can’t advise nothing medically. Xx

Also meditation music helps. X

SkyRose profile image
SkyRose in reply to Kris_23

Thank you so much! Need to look after myself a lot definitely and baths and music are about the only time I feel better ☺️ When her movements get more, hopefully I’ll worry less! Xxx

Hi, I had the same experience you are going through. Had to have multiple scans because I was in so much pain, even from 7 weeks in. But baby was fine. It was the endo and adhesions stretching all the time. It was painful for me. I am sorry to say it did not stop until I was 7.5 months through pregnancy. I couldn't walk from 20 weeks in and needed physio to keep me mobile. But my baby was completely oblivious to my pain and difficulties. He was born naturally with epidural 9lb 6 oz. Tips for pain check with your doctors about medication because I was told you can use specific anti-inflamatories until 2nd trimester but then you must stop or it is dangerous to the development of the baby and cocodamols are fine as well. Also a tens machine was a god-send and I used it all the way throughout pregnancy for every flare. It was amazing pain relief for me. If you are struggling now with adhesions, you may struggle with labour so consider pain relief for the birth especially as it is your first baby. They thought for me I had adhesions stopping the cervix and uterus from moving correctly into position so i had to have an epidural and be induced as, although I was contracting for many hours, nothing was happening and I had pain in unusual places. Discuss all of this with your consultant and your midwife as it is likley you will need a consultant led delivery. Hope this helps. I know pregnancy may not feel like what you expected, I know I was gutted that it was not the enjoyable experience for me and I couldn't have a water birth but, think about the end when you will be holding your beautiful baby in your arms. Its truly magical and even now when my son is 5 he is my miracle 🥰 i wish you all the best and happy to chat anytime, even DM if you like. Good luck, hugs 🤗🤗

SkyRose profile image
SkyRose in reply to kitty270

Thank you so much for your reply - just knowing I’m not alone in this makes a massive difference! I was starting to think that something was wrong with me specifically 😩 I’ve booked with physio to get some crutches near the end of the month which isn’t ideal but hopefully they’ll help a little bit... the obstetrician said I might end up in a wheelchair which I’m not very excited about I have to say! Did the pain go for you at 7.5 months or did it stay but just get a bit better? I’m wondering if I’m going to have any time of actually quite liking being pregnant... I had my 20 week scan yesterday and I knew I’d pay for it today - I’m in pain again because of the pressing etc but I did expect that. I’ve got codeine but I’m not able to take any anti inflammatories as they say it’s not safe 😔 It’s annoying because they’re the only pills that actually help! I can’t wait for her to be here so I can cuddle her and know that it was worth every second of the pain to have her. She’ll most certainly be an only child though - there’s no way I’m doing this again 🙈 Thank you so much xxx

Awww lovely. Congratulations on your pregnancy hun. Im so sorry your in pain. Im in lots too putting it down to adhesions its hurts real bad at times its gone into my left leg too. Im 21 weeks and i am on strong pain killers but don't take them unless absolutely necessary im stuck you my beloved hot water bottle and just try to breathe through it at times. Yours sounds worse than mine though. Im sorry im not much help just wanted to let you know your not alone xx

Congratulations to you too lovely! I’m the same as you - I try so hard not to take codeine because I don’t want to unless I absolutely have to. Had my scan yesterday and am in lots of pain today after being poked and prodded 🙈 but it’s worth it to see her! It’s just so good to not feel so alone, thank you so much for replying xxx

Hi Sky Rose. I totally relate to this. im 7 weeks pregnant and have had absoultely awful pain I feel terrible. ive been to the hospital 5 times, They have done numerous tests but think the pain is adhesions. ive had 5 lots of abdominal surgery and appendicitus so adhesions caused by appendix and surgery. my bowel apparently is stuck to my stomach wall. the pain has been awful as I have fladhbacks of how poorly I was before. I am terrified that if the pain is this bad Im not sure i can cope. I have been told I can take codine but that makes me sick so I dont know what else to do for pain relief. I really want to be a mum but the thought of this is so scary. I really hope it improves for you. Sorry I dont have answers but do really feel for you.

SkyRose profile image
SkyRose in reply to ellieRyder

Hi lovely, gosh I feel so bad for you too!!! I really hope it gets easier for you 😕 I don’t know if it’s any consolation but I was in very severe pain throughout the first trimester with bleeding, but at around 13/14 weeks it got slightly better and it’s only 2-3 days a week that the pain is severe now. I’m 21 weeks and I’m being induced at 39 with the possibility of a caesarean before if the pain is too bad. I was exactly the same as you and had so many scans and tests in the first trimester because the pain was so bad but there’s consistently been nothing visibly wrong. The pain takes its toll mentally and I really really recommend talking to your midwife because they can put lots of measures in place to help. They do weekly doppler listens for me because I’m so anxious all the time with the pain. I take codeine but the constipation with it is unreal so I only take when I absolutely have to. Make sure you eat when you take it to help the sickness but with the first trimester morning sickness it’s really tough sometimes! I really hope it gets easier for you and I’m crossing everything. It’ll be ok - I feel like I’m just surviving and have been since 4 weeks pregnant, but just surviving is ok at the moment! Xxx

oh gosh thanks hun yes its horrendous. ive come close to thinking i cant go through with it. I feel bad but just so scared of the pain worsening. yes I think with the bowel issues the codine is prob bad from that perspective too. its honestly so scary. do they give you any other options for pain relief? I had a really bad doctor last week say 'pain aside are you happy about the pregnancy' made me feel so guilty cuz its hard to feel the usual excitement etc when in pain completely affecting how i feel xxx

SkyRose profile image
SkyRose in reply to ellieRyder

I know exactly what you mean. At the beginning I bled very heavily and honestly thought I was having a miscarriage. I thought to myself ‘if it is, at least the pain will be over’ then immediately felt horrible and so much guilt for even thinking it. The only options I have are paracetamol and codeine, with the potential for nerve pain meds if necessary but I hate taking them as they make me really tired. Baths have been an absolute god send and I got a c shape maternity pillow when I was about 8 weeks and honestly it’s helped a lot, as has an exercise ball. Don’t feel guilty for wondering if you can go through it at all ❤️ The gynaecologist told me it’s totally ok to feel resentment and anger and fear about the pregnancy when you’re in so much pain, but that doesn’t mean that you don’t adore your baby. I spent an absolute fortune on private scans in the first trimester because it gave me renewed hope and strength every time I saw her. I had a private gender scan at 16 weeks and it’s got so much easier to bond since finding out about her and naming her. It’s not made the pain easier but it’s helped to see and know what I’m working towards. When you see your little baby happily swimming away it’ll make a huge difference - at the 12 week scan I felt sick and panicky but then just looked at her and knew she’s worth every second. You can do this - I promise you can and you aren’t alone xxx

exactly hun i had some bleeding and had the same thought too i feel guilty for thinking it too. honestly come close not to go through with it i also feel panicked of getting further in and being agony with no options left which i know sounds weird but its so frightening. dont want to give up on being a mum but the journey there is just frightening me to death xx

SkyRose profile image
SkyRose in reply to ellieRyder

It doesn’t sound weird to me at all lovely - I promise you that I’ve had the same thoughts. Don’t feel guilty for them - anyone in this much pain would feel the same way, it’s totally understandable. I’m not sure if this is helpful but it’s not got worse for me - It’s got a bit less frequent but the pain has never worsened, it’s only stayed the same. It’s a lot but the strength you have when you see your baby is insane - honestly it really is. I’m constantly anxious to the point of insanity sometimes and I cry most days, but she is going to be worth this. You can do this xxx

ellieRyder profile image
ellieRyder in reply to SkyRose

thanks so much hun that does help a lot thank you. its prob imagination running wild thinking as things get bigger will be painful with it stretching. im so scared of it. think you are so brave everything you've gone through. yes its kinda worse as the guilt for not feeling hapy/excited is worse as all i feel is fear right now. cant see beyond the pregnancy part.

SkyRose profile image
SkyRose in reply to ellieRyder

No I’ve been the same - I’ve been shaking when I’ve bought baby stuff because I have been terrified of things going wrong. It’s not easy, but it’s going to be worth it when she’s here 100%. On the plus, I’m not worried about labour at all anymore because I’m so excited for it to all be done 😂xx

ellieRyder profile image
ellieRyder in reply to SkyRose

aww bless you yes feels scary doesnt it. gosh yes i said id be a different person if /when i get through this just at min struggling to cope. this will sound odd but im frightened of the baby moving in case it causes worse pain. I have pain in my womb now but its bearable but im scared for the movement which i know everyone says is so great but im thinking noo id dont want it as it will hurt, how have you found that? xx

SkyRose profile image
SkyRose in reply to ellieRyder

No I completely understand but the movement is absolutely fine. I’ve only felt it painful once when she jabbed on the day after I had horrific pain and felt bruised everywhere. I’ve got an anterior placenta so I don’t feel her all that much anyway at the moment, but when I do it’s not painful at all, it’s really lovely. Maybe that will change when she properly starts punching but for now it’s a really lovely experience and it hasn’t hurt at all. Generally she’s not kicking the areas with adhesions I think and yours shouldn’t either ☺️ So it really is something to look forward to - it helps my anxiety a lot xxx

ellieRyder profile image
ellieRyder in reply to SkyRose

aw thats reassuring thank you hun think the whole thing is getting me anxious about everything because the pain just has me on high alert. been worried about so many things with it. wish they could just knock me out for the pregnancy part lol xx

SkyRose profile image
SkyRose in reply to ellieRyder

I said the other day that I wish I could just be knocked out and fed essential nutrients, then woken up for labour 😂 I know exactly how you feel. Once you see your baby though you honestly will feel renewed strength. The anxiety hasn’t gone for me at all but I’ve got mental health problems anyway so I wasn’t expecting it to. But honestly, it’ll make a huge difference xxx

ellieRyder profile image
ellieRyder in reply to SkyRose

thanks hun. gosh yes I so wish we had the option to do this. I have had anxiety before too (used to have a phobia of being sick) so prob triggers a lot of these feelings of something happening with your body with no control over it. keep trying to think about the bit beyond pregnancy but cant really see past the pain at the min xxx

SkyRose profile image
SkyRose in reply to ellieRyder

Absolutely - I’ve got a few diagnosed conditions and I had to change my medication when I got pregnant to one I’ve not had before, so that was tricky anyway. But it’s going to be totally worth it! It feels never ending but it’s not - at least we know it’s a set amount of time to feel the pain and then it’ll go and we’ll be back to how we were before. Except better in my case as I’ll have a coil fitted which will stop my horrific periods xxx

aw that sounds tough you have been through lots of health things too. I dont have endo but I had appendicitus it took 7 years to diagnose so it damaged my fallopian tube so i was getting painful periods with that but had that taken out so should be better though ill deffo be back on the pill after this. be so nice to be pain free im quite lucky as apart from periouds generally i dont get adhesion pain. the surgeon was amazed i didnt have more pain generally with my bowel in the wrong place but the pregnancy just seems to have triggered it all xx

SkyRose profile image
SkyRose in reply to ellieRyder

Crikey that sounds so tough!!! I’ve only recently been diagnosed with endo but I’ve had horrific periods since the very first one. I have painful bladder syndrome as well which is connected to the endo and it seems my bladder is stuck to my womb which means every time it stretches it presses against that as well and causes pain. They’re very sympathetic but pregnancy does cause all sorts of flare ups if there’s existing scar tissue 😔 But I’m lucky to be pregnant - there’s so many women who would love to be and can’t be, so I know I’m incredibly lucky. I’m grateful it’s happened despite the pain xxx

You may also like...