stage 3 endometriosis - is there any hope?

[Fifii]

Hi all, posting this on the ‘infertility’ and ‘conception’ boards as I’m not quite sure where I fit - feeling v deflated but hoping for some support I guess.

my partner and I have been ttc since October 2022, no pregnancy so far. We both had the usual tests done and everything came back normal. However, last year I started to experience horrific, debilitating pain during my period, and my periods got longer and longer. Now, every month I bleed for 12-14 days.

long story short, last Friday I was finally diagnosed with stage 3 endometriosis through an MRI. my ovaries are stuck behind my uterus, and my uterus is stuck to my colon. I have a 4cm endometrioma on my left ovary, and ‘deep infiltrating’ endo in the ligaments around that ovary. there’s no evidence of endo on any of my other organs, and no evidence of adenomyosis either.

my specialist told me she would like to perform a robot-assisted laparoscopy. This involves 5 small incisions higher up on my abdomen compared to the typical lap. She said she would cut out of all the endo she can see, including the endometrioma.

I wonder if any of you have experienced similar?

we are so ready and desperate to have a baby, it’s all I’ve ever wanted. I’m being hopeful but realistic, as I know stage 3 endo is probably the entire reason we’ve had no luck so far.

have any of you had success following excision of endo? Should I start looking into IVF? Is there anything I can do to make this process easier?

thank you for taking the time to read this and for any replies.

@Fifii a good friend of mine had a lap to remove a cyst, and they found silent endo. They removed the endo and cyst in the procedure as she was going ahead into ivf. 2-3 months post surgery, she did a pregnancy test before the ivf and to her shock - had conceived naturally! She now has a beautiful, 6 month old baby girl - hope this gives you hope!

@MotherOfShihTzus aww that’s SO lovely! Thank you for sharing that, that does give me hope. 2-3 months post-surgery is amazing too.
what is meant by silent endo? As in it was symptomless?

Yes symptomless; didn't get painful or long periods or anything like that, so it was a surprise when they found it. Best of luck to you!

Several years ago had endo and fibroids removed in the October. First natural post op period in the December. Conceived in January. Subsequent pregnancy was also conceived in the first month of trying. No endo symptoms have returned since.

Good luck!

Anecdotally, the best time to get to try to get pregnant as an endo sufferer is as soon after excision surgery as your health allows. I believe the theory is that if the endo has been successfully removed, it can be ruled out as the cause of any infertility. And as you've already had other tests, it sounds like it might be endo causing problems for you.

I was diagnosed with stage 4 endo last year and had it removed. We started TTC in October and whilst we've not been successful yet, I've not had any endo symptoms either. The recovery from surgery wasn't half as bad as I was expecting either. I was back at work after 10 days and I think we DTD for the first time about 4 weeks post surgery. Everyone is obviously different but wanted to give you some reassurance with a positive surgery story!

@cliffdiver thats incredible - so soon after! Had you been ttc for long before the op?
thank you so much!

Hey I found out I had stage 4 Endo when I was 35 I am now 40. I’m so sorry you’re going through this . Endo is a nasty and debilitating and misunderstood disease.

i haven’t had any of it removed
I’ve been told it is everywhere but mainly my bladder and bowel.
My gynaecologist told me that the greater the stage does NOT equate to you being at higher risk of infertility …
he also told me that he’s met women with severe endo and they’ve had 4+ babies
my point is that endo doesn’t necessarily mean you are infertile or it is stopping you from getting pregnant but you do need to get it investigated.
if you’re having heavy bleeding please get your bloods checked for anemia as lack of iron can mess with your fertility.

also it is very misunderstood and little time or research has been put into looking at endo so all the tropes of infertility are spewed out because the medical community don’t actually know that much. I’m not saying endo doesn’t compromise fertility for some women I just feel very little is known about this disease.

i absolutely believe endo is an autoimmune disorder like arthritis, crohns (I also have crohns), lupus and when you suffer a flare up it triggers the body to release cytokines just like other autoimmune disorders. Look it up, it’s shocking that endo has not been classified as this.

on a side note when I’ve knuckled down and done exercise every day like a run or swim it absolutely elevates my flare ups. This is linked to anti inflammatory abilities of exercise.
when I have had a flare up I am bed ridden for days, high fever and exhaustion.

on a good note….

my cousin couldn’t get pregnant for years they went in a ‘blasted’ her tubes (not exactly sure what that means!) she now has two boys.

i only tried getting pregnant last year and fell pregnant naturally at 40 (sadly miscarriages but NOTHING to do with endo).

we have just started trying again.

if your tests have come back all ok take this as a positive.

please don’t let endo make you think it’s the end of getting pregnant.

just push for all tests and look into IVF. Make sure you track your ovulation and confirm you are ovulating

@MrsRandallFraser oo really? Yes - I had the day-21 test, other hormonal tests etc and everything came back normal/in range. My boyfriend had sperm analysis done too and his came back completely fine.
i really hope once the endo is out the way, things will look less bleak.

Sorry to hear you have endo too. It really is a struggle. Thank you for sharing your positive surgery story - it really is good to hear that. the prospect of not having severe pain and bleeding feels like a dream.
I have everything crossed for you that your bfp is coming very soon!!

@Greekmyth thank you so much for your reply, and for reminding me that endo doesn’t mean the end of hope!!

I am definitely going to look into cytokines - from the relatively small amount of research I’ve done, I’m also shocked that endo isn’t considered an auto-immune condition.

funnily enough, my specialist said she will ‘blast my tubes’ during the laparoscopy procedure (that must be the technical term! haha) so hopefully that helps too. Great to hear that had a positive impact for your cousin. My worry is that, because my endo seems to be mainly around my left ovary, that it is having a more direct impact on fertility.

doctors have recommended a blood test for iron levels so I’ll defo take them up on that. Occasionally I bleed heavily, but mostly I just bleed for so long :(

I defo need to do more exercise. I generally eat gluten free now and as much of an anti-inflammatory diet as I can, and that does help a bit. Exercise (other than walking every day) is where I fall short. Also, my day-21 test came back with a result of 33.5 which apparently confirms I’m ovulating? Perhaps needs looking into a bit more though.

so sorry to hear about your miscarriages, and good luck to you for the future! we will get our babies 💕