Pregnant with stage 4 endometriosis?? Need success stories

[Lexi21]

Hi Ladies,

Im in desperate search of success stories of women that have carried babies to full term with endometriosis stage 4! Found out in Jan 19 that i have stage 4 endo from a lap, the surgeon did say its only stage 4 because my bowel is stuck to the back of my cervix but theres alot of scar tissue other places too and my right ovary has a cyst in it. I fell pregnant in may 18 but had a mmc unfortunately, i was over 10 weeks but the heart stopped at 6w4d 😔 we’ve only just started trying again last month but someone i know said they know someone with endo who keeps having recurrent miscarriages and doesnt think she can carry a baby to full term because of the endometriosis. I dont want to start freaking out because i know that wont help conceive so i just need a bit of hope from someone in the same boat as me who has had a baby of their own 🙏

[Kentishgal]

Hello lexi21 - I had stage 4 endometriosis operated on in July 2018 (including cyst and fallopian tube removed) and I fell pregnant in the October (2018) - so I'm now 8 months pregnant. We had been trying for a while before the op. Best of luck to you.

[Lexi21]

@Kentishgal when i had the op he said he wasnt able to remove it due to the risks of rupturing my bowel and ending up with a bag for 6 months so i havent had anything removed and i feel like im at square one still but he did say he thinks i should try and get pregnant again before considering the op because he knows i can get pregnant. Thank you for your message its definitely made me feel better and congrats on your pregnancy you must be over the moon ☺️

[Kentishgal]

Lexi21 that's frustrating for you. Fingers crossed it happens again soon - I don't know much about the chances of recurrent miscarriage with endometriosis. I started using castor oil packs and following a gluten free diet etc after my operation (I bought a fertility for endometriosis book!) - i'm not sure whether any of it helped but I like to feel like I'm doing something that might help even if it's just a placebo in reality! Thank you and I hope you get some good news soon!

[Pinkstars2501]

@Kentishgal sorry to jump in, can I get the name of that book please?
Im 32, 2yrs ttc and no luck. Stage 3 endo, frozen pelvis and been told to ttc now.

Similar to OP, they couldn't remove mine because my bowel was full and the risk was too high.

[Kentishgal]

pinkstars2501 - sorry to hear that. It's so rotten. It was "endometriosis: a key to healing and fertility through nutrition" by Dian Shepperson Mills and Michael Vernon. As I say, not sure if it helped or not, but I figured it's all worth a try. Best of luck.

[user1492525633]

I had a laparoscopy for endometriosis to remove cysts on both ovaries and was told had stage 4 endometriosis. Following the operation probably about6 months later I got pregnant on our first month of using ovulation tests (although not preventing no actively trying before that). Unfortunately ended in Mmc. 14 months later got pregnant carried to term sitting here feeding my baby!

[Kentishgal]

Interestingly I just googled it and the versions coming up are slightly different to mine in so far as they don't refer to fertility - mine is a 2002 edition so maybe it's been updated since.

[Pinkstars2501]

Thanks!
Yeh it does suck. I do already use opks and have started temping this month. But will look this up as well, can hurt. Just to try and feel like you're doing something to better the chances eh...

[Lexi21]

@user1492525633 that has honestly put my mind at ease so much so thank you! I went a bit crazy when we tried the first time round it put a huge strain on mine and DH’s relationship. I genuinely believe i got pregnant the first time because i seriously relaxed (i was due to have the lap originally in june 18 but found out i was pregnant 10 days before so had to cancel) so i just thought we would try after the op but it happened before hand! @Kentishgal ill have to have a look on amazon or somewhere for that book, diet is definitely important i think. Im actually late on my period right now (not that its regular) and had a dot of blood when i wiped this morning and a few niggly mild pains but nothing since (sorry if its TMI) ive taken a test a couple of days ago and it was a BFN so im a bit confused 🤔

[Kentishgal]

lexi21 fingers crossed - do another test (and let us know!)! I had some implantation bleeding. Funnily enough I tried for a year for my first baby (I don't think I had endometriosis then as I think mine was secondary endometriosis caused by womb rupture - but I'm not certain) and the month I started using a relaxation hypnotherapy CD every day I fell pregnant - and actually the same happened this time round - so maybe there's a lot to be said for relaxing...easier said than done though!

[Shams1993]

Hi @Lexi21

A month ago I was diagnosed with stage 4 endo (Rectovaginal endometriosis) due to the damage to my bowels. They did say that it’s only stage 4 due to the bowel endo.

I found out that my tubes were attached to my rectum and I had a large cyst on my right ovary. They were reluctant to treat my bowels incase they rupture it just like you said in your post and my dr has advised me that I should continue to try naturally however there is a pretty high chance I will need further fertility treatment.

It’s very comforting reading your post as your diagnosis is very similar to mine. :(

I’ve been searching the internet high and low for success stories!!! I’ve been trying to conceive for the past year with no success.

I hope you’re well!!

Also @Kentishgal congratsss!!! I can’t tell you how happy it makes me to hear a fellow endo sister is pregnant!!! I hope you and baby are well 💙

[Lexi21]

@Shams1993 its actually amazing that you have written this now because since my last post i have not had another lap to try and remove the endo due to my bowel being attached the same as you but i hope you take a serious amount of comfort out of the fact i am now 12 weeks 2 days pregnant and completely naturally too! I did lose some weight and became alot healthier with my diet and exercise and since my mmc in 2018 it did take us over 2 years to conceive this one but i hope this bring you hope that it is possible. Dont give up! At 10wks 3 days i had a private scan and saw a little wriggler on the screen and i have my NHS scan at 12wks 5days on monday! Hope you get your baby one day and if i can help or give any advice in anyway let me know xx

[Shams1993]

Hi @Lexi21

Firstly, a hugeee congratulations to you and your partner!! That’s amazing news.

It’s amazing that you got pregnant naturally and you haven’t had to have another operation to remove the endo attached to your bowels.

I have been really concerned that I will need to have a follow up operation pretty soon to sort that out. I’ve removed as much dairy, gluten and junk from my diet as possible and I’m going to try and exercise a little more in the new year 💪🏽

You have really given me hope!!

I wish you all the best with your pregnancy and I hope it all goes well at your appointment on Monday!! Xx

[Lexi21]

@Shams1993 im so glad ive given you hope as i know how desperately i wanted to read a positive story like mine! I also just wanted to say that i used a bracelet called the Ava bracelet which you wear nightly and sync to your phone every morning and its extremely accurate in letting you know when you ovulate and when is a good time to start baby making (definitely more accurate than ov sticks), it took us 6 months using it to get pregnant but i dont think i was ovulating every month either. It is quite pricey but definitely have that to thank for falling pregnant aswell as healthy lifestyle you also get a money back guarentee if you dont fall pregnant in a year! Keep me posted and i wish you all the best xxx

[Shams1993]

@Lexi21 there really isn’t a kinder community of women than the endo and TTC community.

Thank you again for getting back to me.
Over the past year, I have really mastered ovulation strips but it can be a bit of a faff so thank you for the Ava bracelet recommendation. I’ll do some research and look into getting that.

I’m currently 6 weeks post op and I did try on my first cycle post op which was negative but il just keep at it and I hope one day I (and everyone else trying) get my baby.

I will keep you posted if/when I get my good news!!

If you do pray then please keep me in thoughts and prayers 💙... you have definitely been in mine since you shared your good news. I wish you all the best with your pregnancy xxx

[Lexi21]

@Shams1993 there are definitely alot of lovely ladies on the forums!

I forgot to mention that i lost alot of my weight just walking so if you’re not massively into the gym i walked 10-12k steps a day in lockdowns and it helped alot!

Even my husband said the bracelet was the best thing we’ve ever bought but yes definitely do research its a swiss company with alot of different doctors, fertility specialists and techy people involved!

I hope you have a speedy recovery and yes definitely let me know if you get your good news i would really love to know!

I do pray and believe in God so i will keep you in my prayers, everything is in God’s plan and thats what my husband kept telling me when i was losing faith which is easy to do when you want something so bad! Im sure he will give you your baby when the time is right and you’ll see that it was all worth the wait when you hold your little bundle of joy! God bless xx

[Sarah5plus1]

Hi Ladies. I’m 25 weeks pregnant with my 6th baby. I’ve been referred to gynae for endometriosis investigation which will happen after the birth. For 3 years I’ve had progressively worse periods and all the symptoms of endometriosis. The pregnancy has relieved these symptoms, however I’ve progressively been suffering with sharp, sudden sporadic pains in my lower abdomen everyday. Yesterday I was wakened at 6 am with the pain and couldn’t get up. Today I sat on a chair for an hour until the pain passed. It’s like the endo pain and my stomach gets tight and hard. I ended up phoning the maternity ward. They did all my obs which were normal, but couldn’t tell me what the pain was. They don’t believe it’s anything to worry about. I’m concerned that I could end up in labour as the pain gets so bad I have to breathe through it and I can’t move. Anyone else had this???
I suggested it was maybe scar tissue getting stretched from endo but was told it couldn’t be which to me doesn’t make sense.
(I wasn’t scanned and they never checked to see if I was dilating.)

[Createdjustforthis]

I have stage 3 endo, mainly around my bowels, my ovaries are entirely unaffected which is why I’m not stage 4 despite having an obliterated pouch of Douglas.

I’ve had 4 pregnancies with one ending in miscarriage and throughout all of them had weird twinges and pains. I didn’t know it was endometriosis at the time, my diagnosis came later. Pains can often come from the adhesions pulling.

[Sarah5plus1]

That’s what I was trying to explain to the DR. The adhesions in pain as my uterus grows. I’ve read that people with endo are at greater risk of preterm labour and bleeding. I must discuss this better with the consultant in a few weeks. We’re any of your early and what about bleeding? Thanks.

[Createdjustforthis]

My first was 13 days late due to poor positioning (though he did come out without assistance or induction) and my others were 2 and 3 days late.

No bleeding other than my miscarriage.

All of mine were home births without issues. As much as endometriosis has been a blight on my fertile years pregnancy and birth were thankfully easy for me.

[Sophia1988Sam]

Hi ladies, I am so glad I came across this post as I have been searching for a while for some kind of realistic answers to the questions in my head rather than read health articles. I was diagnosed in June 2020 with endometriosis via CT ( two large masses covering both ovaries ) and internal scan but this was only verbal as was told I needed a laparoscopy to confirm. Because of the pandemic the NHS were not doing any elective surgeries so I had to wait. They put me on cerazette x2 per day to control the bleed as they said the Endo feeds of a bleed hence the debilitating pain. I got my 1st laparoscopy in March 2021 and they diagnosed stage 4 Endo and mentioned my bowel fused to the back of my womb? They did a dye test and said the dye went straight through so no blockages in my tubes but there were 8 small 8mm cysts covering both ovaries which were not removed but drained.

They then mentioned I would obviously need a larger surgery to remove the Endo completely and detach my bowel from my womb. Having said all this, I was alone and just awoken from the anesthesia so I couldn’t quite remember a lot. I’ve not had any luck contacting my NHS consultant or any luck with my doctors it seems like I’ve just been pushed aside and not even had a courtesy call or follow up.

I am still taking the cerazette but wondering if anyone here recommended I stop taking them now that the cysts have been removed and my tubes are clear to try conceive naturally? I just feel the pill is hindering my chances however low they may be due to the Endo? 🥺 I am 33 in October, 12 miscarriages not gone past first trimester and last one was in 2018. I stopped taking the pill then and that’s when the Endo reared it’s ugly head as the pill was masking it apparently?

Sorry for the very long post I am just a desperate, heartbroken woman with a story just like so many but without any answers :( xxx much love x

[Tor88]

@Lexi21 Hiya, I know this is a super old thread but - I am on my third pregnancy after two miscarriages, after the second I was diagnosed with severe stage 4 pelvic endo and an ovarian cyst and I'm desperate to hear positive stories - did everything work out ok with your pregnancy??xx