Anyone pregnant with endometriosis?

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Really looking for experiences from endo sufferers. I am finally TTC (age 35 thanks to all my health issues of the past decade) but have so many worries about endometriosis and pregnancy. On the more serious side, I am scared of miscarriage (I think I had an early one a while back but can't be certain). I am scared of ectopic pregnancy, pre-eclampsia which are apparently more common if you have endo.
With lots of scary hospital trips in the past I'm scared of something life threatening happening, especially with things like an ectopic - the warning signs sound very similar to my everyday pain (see below) so I'm not sure if I'd know the difference!

Less seriously (though not for me), I am frightened of being in pain during gestation. I've had so much pelvic pain, nausea etc with this disease and only have a bit of control on the mini pill. I don't know how I might cope. Particularly I am worried about stretching scar tissue as a bump grows - I have had cysts removed on the right ovary, two endo surgeries, and the scar tissue there causes me constant pulling/aching pain and sciatica. Has anyone had this kind of scar tissue and how did pregnancy affect it?

Besides this I have a lot of fatigue etc, but trying to fight through for a potential child. If you've been on a similar journey I would appreciate any insight.

Hi, I have endo & currently 10 weeks (and 3 days) pregnant with my 1st at 33 years old. Everything you mentioned i had the exact same worries, we were TTC for over a year and I thought my endo was stopping me getting pregnant. I've had one operation back in 2014 (although I suffered many years prior due to no diagnosis) and I had been considering having another op due to the constant pain over the last few years. I was very reluctant but finally agreed to have the op again then Covid happened! Since being pregnant I get regular endo pains on my left, I believe its the tissue stretching. I had my 1st midwife/booking appointment last week so I asked if I would be classed as high risk. She said no a consultant would contact me for extra support regarding my endo. Apart from that happily pregnant, a few symptoms but really pleased (and surprised). I hope my journey helps you a bit xx

Hi hun, I have endo too, had two laps done 2016/2019
1st baby born in 2018 fell pregnant with 3 months, had a lot of round ligament pain which I put down to the endo but it wasn't painful enough to stop me day to day. Had him at 28 weeks but that was due to incompetent cervix
2nd baby 21 weeks pregnant now took 2 months to fall, not had any pain this time around
I had private early scans done in both pregnancy's to rule out ectopic and just coz I was so excited and couldn't wait for the 12 week scans.
I work with gyne surgeons and they say pregnancy can help and does help endo symptoms xx
Try not to worry enjoy ttc

I have endo, no surgeries, I was booked in for surgery and then I got pregnant so had to be cancelled!

Endo is a funny one. Many people find pregnancy makes the pain much better or go away altogether. Some people find it stays the same or gets worse. I'm not missing the crippling periods one bit, but I have quite bad ovary pain most days. Midwife has been very unsympathetic (suggested I try a hot water bottle, hah!)

Would be interested to know if it affects pregnancy/labour.

Hi! Another endo sufferer here whos currently 13.3 wks pregnant with my first. I not only have stage 4 endometriosis (0 ops) but also adenomyosis - both of which seem to be having a blast in my retroverted uterus for the past 15years .

Opted for conservative method of dealing with endo (officially diagnosed in 2018) and that is to ttc. I HAVE had many people with shitty periods say that their pains significantly reduced after birth, including my sister. She doesnt have endo but did have it relatively bad (undiagnosed maybe?)

To date iv had 2 MCs since Nov 2019 and a weird case of chemical back in Jan (which could be classed as 3 MCS according to some people). This was as you can imagine, rather heartbreaking as it began to make me feel irrationally inadequate as a female despite my OH being wonderfully supportive and understanding throughout.

Not to go off on a tangent but I think its important to understand that very little research is carried out for endometriosis so therefore docs (gps not actual gyna specialists) tend to place the blame of infertility on this condition if you happen to be impatient and complain to them why you havent concieved after several months or at least after a year of ttc etc. which is absolute nonsense. Many women without any underlying gynae condition end up conceiving much later than anticipated,
with some even having struggled for years with no known reason. The only reason they say endo sufferers have a higher risk of experiencing a miscarriage is simply because we have already been 'categorised' iygwim. Same time, many women have had losses which again is very common (although we feel like we are always hearing 'good' news rather than the 'bad' news). So basically your chances of having a miscarriage is the same as next persons unless you have had recurrent MCs like a good 3/4 times over ..and even then often problems are not really found. My gynae consultant dismissed my MCS saying its normal and the positive note to take out of it is that im obviously very fertile and have had no trouble falling pregnant each time so endo clearly isnt the issue. Miscarriages simply happen due to chromosomal abnormality NOT because of you,your body or having endometriosis. That is entirely a separate issue, otherwise every endo sufferers would have been classed as high risk. Im only considered HR due to my recurrent MCs.

Be confident and go for it OP. You will be fine! Your body will know what to do. Have confidence in yourself. Every pregnancy is different and unique. You may have minimal symptoms once pregnant or you may have shitty ones- its a hit n miss.

My biggest problem so far has been frequent urination (iv already been 4 times within the past hour), excessive saliva coupled with a disgusting metallic taste (tmi sorry), shortness of breath and horrible nausea. Getting better now though....touch wood also the ligament stretching pains not bad...standard i think.

Good luck on your ttc journey! X

PS i will be turning 31 soon and hoping to have 2 more DC by the time im 39 ambitious

@Dumpling21 Hello, you're not too much younger than me then (I turned 35 in September so keep forgetting I'm not 34... lol)
I've spoken to my surgeon a couple of times about this and he said that endo alone wouldn't class me as high risk for anything, I guess it's equally reassuring and frustrating in a way. It's great you'll be getting extra support, I'm sure that helps a lot! Best wishes for the ongoing pregnancy x

@boymum88 wow you conceived very quickly, that's great! It's wonderful to hear you didn't have bad experiences. I hope your 28 weeks baby wasn't too unwell.

@kallia yes, I've heard a lot about the pain reducing during pregnancy, my surgeon told me the same, though I know for some people it can be worse or just similar pain as usual! I don't have periods normally due to consistent taking of the mini pill so I'm not looking forward to that part of TTC. My ovary pain is constant so I can cope with that if pregnant, I wouldn't like it to get worse obviously, but it's a known quantity iyswim. I'm always permanently glued to my hot water bottle as it is so it'll probably be like that anyway (though I'll keep it off the bump if I ever get one)

@BeRealisticPlease oh congratulations on your pregnancy! That's so exciting. That sucks you have adeno too, I wondered if I had it too but last op (2019) they seemed to just find a bit more endo. I don't actually have a lot of adhesions, it's just they've been on the bowel and bladder (and I had a difficult ovarian cyst which was what first put me in hospital) so they cause a bunch of unpleasant symptoms for that reason. That's awful you were only diagnosed so recently! I had painful periods for some years but luckily, after my cyst went nuts, I got a suspected diagnosis a few months later (and a confirmation a few months after that with a lap).

I'm sorry to hear about your losses. I have a very supportive DH too and that kind of love is invaluable in these situations.

You have a point about MCs and how common they can be even among 'low risk' women, I think with endo we can easily get caught up in the perceived risks of the condition but certain things are probably correlation not causation.

I have frequent urination most of the time so going more would drive me mad! And nausea. Sounds horrible, but I hope it improves soon for you! Thank you for the kind words.

Perhaps we could keep this thread going as a support thread for those with endo and pregnant/trying? No pressure to update often but would be nice to check in from time to time. Maybe I will join you in gestation at some point!

Hi! Was wondering if any of you did a home PT that came out negative but is actually pregnant?

I have stage 4 endo and had my right fallopian tube and right ovary removed last 2012. Still Been trying to conceive since then. I usually get periods regularly every month, though very painful. But this month, it’s been 6 weeks already since I had my last period. Did home PT thrice already (on my 4th week, 5th week and 6th week since my last period), but they all turned out negative. I have been feeling nauseous sometimes, very much bloated and constipated, and my breasts are sore to touch. I have never missed a period except when I was put on Leuprolex, so this is a first for me. And I’m honestly quite hopeful that I am pregnant despite the negative PTs done. Planning to visit my doctor again this week, though, for confirmation and follow up check up as well.

I have endometriosis and pcos. I'm 39, high bmi. I was ttc since I had my first born in 2001, unexpectedly pregnant, 10.5 weeks.

I had surgery a few years ago, it made no difference and I didn't have periods because of pcos. Periods started again last year and I'm pregnant now. I notice I was only ovulating from my left ovary, I felt the pain in that side. At a recent result scan they said they could see the endometriosis on the scan (it doesn't show on scans they said but they could see the shadows or something).