should I try for a pregnancy before stage 4 surgery?

[l0zzie88]

I have a pretty complex case of endometriosis with deep endometriosis blocking my ureter to my right kidney which has caused failure and now a 17% kidney function. I also have a endo lesion on my other (good) kidney which is l pulling on the ureter. I have now had both ureters stented to preserve function to my kidneys.

An MRI showed endometriosis causing these issues with the kidney function, but also deep endometriosis into my bowel, and behind my uterus/womb, and an ovarian cyst on my left ovary. They are describing this as a ‘frozen pelvis’.

I have been asked to pursue fertility preservation before treatment for endometriosis, which will consist of Zoladox and major 12-hour surgery to remove the endometriosis in all these areas and reconstruct my ureters and bowel (and possible kidney removal). The recovery is up to 2 years, and have been warned of many risks and complications, including permanent infertility.

I am 36, I was in the process of trying for a family when I became unwell with recurrent kidney infections which lead to the investigations, and ultimately finding that endometriosis has caused my issues with the kidney.

I did not, and I do not have pain from my endometriosis.

But I’m now being told I could choose to try and have a child before undergoing the surgery/treatment. I need to make urgent choices and I’m very torn if best to put my own health and organs ahead of starting my family, or try for a pregnancy first. It is possible that I cannot have a family now, and likewise only one cycle of IVF would be suitable before the surgery due to timing.

Any advice anyone who has been in a similar situation would be greatly appreciated, and how you made your decision.

[MD54999]

Hey there, I had a similar situation in that I have deep infiltrating endometriosis on two areas of my bowel (Stage 4) and also an inflamed appendix. It was only discovered during my laparoscopy after I had done some IVF treatment which failed. I was told that if I didn't have surgery and it got worse I would get a bowel blockage. The other risk was that the surgery would further damage my ovarian reserve and I'd struggle to get pregnant after (and I already had had two failed IVF rounds) Between waiting for an appointment with an endometriosis clinic and then the appointment with the bowel surgeon it took about 4-5 months so I did two rounds of IVF in the meantime and I'm now 16 weeks pregnant so have postponed my surgery. One option I considered was freezing my embryos to then transfer after surgery. Have you considered this option? For me, speaking to the endometriosis consultant and the fertility clinic helped me to make the best informed decision but in the end the delay in waiting for surgery gave me the chance to try IVF again. Best of luck with making your decision. xx

[l0zzie88 in reply to MD54999]

Thank you for your reply, seems very similar and quite a debate. 😔

Firstly, congratulations on your pregnancy, wonderful news after so much uncertainty for you. 🥰

So yes, we have been recommended fertility preservation, via IVF, but I’m worried about the outcomes of that as if we progress with the surgery plan we’d only have time for 1 cycle. And looking at the success rates for people with endo on IVF it won’t result in the best chances, and likely need more cycles - like you’ve experienced.

So I’m torn, do I go for surgery which they say I need to have in Jan/Feb and try embryo freezing now and hope for the best from 1 cycle to get some in the freezer… or start IVF and progress to try and get pregnant before the surgery takes place.

At 36, and with all the complications which come with this condition I worry that I might not now have the option to successfully have a family.

But at the same time, I’m being told I really do need the endo fixed to prevent organ damage. I don’t know what’s best to prioritise right now and how much risk is really involved in waiting till I’m done with family desires. 😣🤯

Have you experienced any further complications with your pregnancy with your diagnosis? as I was told by my IFV clinic I would also be classed as a high-risk pregnancy due to my condition.

Lx

[MD54999 in reply to l0zzie88]

Hey I really feel for you, it's not an easy decision. I was 35 when I found out I needed the bowel surgery, also the same age wise as you and definitely feel the pressure not to delay fertility treatment. Can you get advice from an endo consultant on which you should prioritize at the moment? I think for me I really felt that I had to do the fertility treatment first because the bowel surgery would have a very long recovery time and also probably damage my fertility further. Since I've got pregnant, my Endo has completely settled down and my symptoms don't flare up at all so that's been one reassuring aspect. The IVF clinic told me I'd be classed as a high risk pregnancy too but my hospital has treated me as a very standard pregnancy and my obstetrician said the Endo is unlikely to be a problem during labour. I know everyone isn't as lucky but Endo hasn't caused any pregnancy complications for me.