Severe Endometriosis and Pregnancy - Help

[SLD2022]

Hi,
I have Stage 4 endo with bowel, bladder, ureter, both left and right diaphragm and right lung involvement and I’m currently 21 weeks pregnant.

Aside from constant diarrhoea, my bowel / bladder symptoms & pain have largely disappeared however I have been really struggling with the diaphragm/thoracic side of things since about 10 weeks pregnant.

Some history, in addition to bowel resections, bladder surgery etc I have had 2 major operations on my chest which included excising 4 sections across my diaphragm and repairing with a medical mesh in addition to removal of endo from my right lung and “unsticking” it from my chest side wall.

Both of these thoracic surgeries happened in the last 18 months so the mesh etc is still technically healing which I’m aware may be making my symptoms worse.

I’m just looking to see if anyone else on this site has diaphragm/thoracic endo and can advise me what to expect at the later stages of pregnancy?

Im already under consultant & early anaesthetist care where they have prescribed codeine as paracetamol and heat have failed to control the pain and the next steps are either more opioids (which Id like to avoid) or nerve blocks in my chest.

Did anyone else’s thoracic endo interfere with their pregnancy later on? What did you do to manage pain and shortness of breath? Were there any complications afterward ?

Apologies for the long post but none of my health care team have ever had a case like mine before so can’t really offer much advise but yet I have so many unanswered questions!

Anyone?

Hi @SLD2022, I'm sorry I don't have a particularly helpful answer for you, but I didn't want to read and run. I also have endometriosis and am 7 weeks pregnant, and my endo has flared up horribly. This is my third pregnancy, and it's been the same each time. It's a different situation to yours, as my endo is peritoneal, but I can understand how desperate and lonely you may be feeling. I posted on here about endo in pregnancy and didn't got any replies, which surprised me for a relatively common illness. So just wanted to send a big hug, and tell you that you're not alone. I really hope you get answers to your questions x

@Rabbitjungle1 thank you so much, that really means a lot!
I managed to find one person on a Facebook group with DE&TE who had been pregnant and offered some advice but aside from that I’ve not found anyone.
Sorry you are struggling, did symptoms improve the farther along you got in pregnancy or did they worsen?
Also, are you taking any pain killers for the flare?
I’m 27 weeks now and the pain seems to be worse at night along my collar bones, shoulder blades and down into my right arm so I’m trying to sleep semi-upright ! I’m really grateful that I don’t actually have a bump at all as I can only imagine how much worse it could be if I was bigger!
I hope things start to improve for you xx

@SLD2022 really glad to hear you managed to find someone on Facebook in a similar situation - even having just one person who "gets it" must be a big relief. But, so sorry you're still in so much pain and discomfort - not getting quality sleep makes everything feel worse, as well, doesn't it.

After I stumbled upon your post earlier I went looking for others, and found another thread in which a few others said their endo pelvic pain eased up around 12-14 weeks. So that's given me a glimmer of hope! I find it hard to believe anything can grow in this kind of environment, so knowing that you've made it to 27 weeks, and reading about others who are further along than me, is also reassuring.

So far I've managed only taking paracetamol, but I also have codeine in my back pocket for if/when things ramp up. It's hard isn't it: you don't really want to take anything, but there comes a point when it's surely better, at the very least from a stress perspective, to reduce your own pain. It's just hard to know what to do for the best! My gynae also said a TENS machine could help and is safe to use - is that something you could try? It sounds like you're managing amazingly well. Have you had additional monitoring/scans etc?

Hi ladies, on a slightly different subject, I am convinced I have bowel endo. I have had a scan and no endo in my uterus but my monthly symptoms suggest it is on my bowel. How did you get diagnosed? And also, I hope you dont mind me asking but did you struggle to conceive? I am 2 years TTC and having no luck x

Hi @Barney2009 the only way to diagnose it is to go in with a camera (laparoscopically). I fell pregnant three times within three months but all have ended in MC.

Sorry to hear that and thanks for replying. Yes I think that’s the next step for me, I just wonder whether or not to put myself through it all

Hi OP
so sorry that you are in pain. Congratulations on your pregnancy

I am stage 4 Endo with bowel bladder ureters US ligaments peritoneal diaphragm etc - and only found out after my pregnancies.
I didn’t have the same pain describe but my diaphragm Endo was much less than yours. I did also have POTS diagnosed later too and this made my breathing hard especially during pregnancy. It took at least 8 months to recover from my Endo excision surgery (was a big op) so it sounds quite early for you too.

wishing you the best of luck hope you can some someone with the same experience

xxx