IVF with endo

[Endofuturemum]

Hi,

Could someone tell me about their experience with ivf having endometriosis. Mine is stage 4 and have been told the news that natural pregnancy will never be possible. I'm 36. Any advice would be sooo appreciated. Thank you

I had severe endometriosis and zero chance of natural pregnancy as tubes stuck together and partially removed. 4th ivf was successful baby is now a teen. Good luck. It can happen!

I have severe endometriosis and had to have IVF as a result. I had a successful round at 28 with my DS. I’m now pregnant again after a couple of rounds at 42.

Amazing! Happy it eventually worked for you! Thank you

Wow that's beautiful and so encouraging to hear. Thank you!

I had stage 3/4. I had surgery for an ovarian cyst that was endo related and had to be removed (forget technical term) at same time I had extensive EXCISION surgery (not ablation, which doesn't help). I didnt' conceive naturally but we had MFI and also I had lost a tube in a previous ectopic AND the side I had the ovarian cyst removed was the side with the healthy tube, and vv.

I then did ivf which worked fine except that FYI the ovary that had been operated on never produced a single egg in 3 rounds of IVF. (we had a baby from round 1, then 2 rounds for babies 2 and 3). I wish I had been counselled on the risks of damage to the ovary from surgery, I could have potentially frozen eggs at that point. I was very lucky my other ovary was an outperformer producing something like 30 good eggs over the 3 rounds.

In short though, after excision surgery I personally believe that were it not for my other problems and the male factor, there would have been no issue conceiving naturally (for me).

Sorry you've been through all that. Amazing now you have 3 children 😃. Can I ask how old you were when you had the ivf. I think il be going straight in for the ivf without surgery.

@Endofuturemum sorry just seen your qu. I was 36 first round and 38 second round. Had the babies at 37 and 39.

Hi everyone, it’s lovely to read about your successes. I also have endometriosis, diagnosed via the presence of an endometrioma on one ovary and absolutely debilitating periods, but I don’t know what stage I’m at and I’ve never had any kind of laparoscopy or surgery for it (my previous gynaecologist said there was no point as it would just grow back, but I’m since wishing I’d pushed harder on this). I’ve been referred recently by a different gynaecologist to have an MRI to see what extent of impact it might be having on other organs, but it’s taking forever as the waiting list for MRI is so long.

It’s currently holding up my IVF treatment (I’ve previously had two failed FETs) and I’m being told conflicting information - my IVF consultant feels I should go ahead with my next FET without having surgery for my endometriosis, as he believes it won’t be affecting implantation, whereas my acupuncturist believes it could be causing high inflammation which could be stopping embryo implantation. And my NHS gynae hasn’t really commented on the IVF side of things but has said it might be good to get it sorted out. Does anyone have any thoughts on this? Has anyone had success with IVF without surgery for endo? I’m worried about having to wait months or even a year for a laparoscopy, when we really just want to try again with the IVF. Thank you so much for your help - I’m feeling so lost and stressed and just want to get on with trying for our baby!

Ps. We’re doing IVF due to being in a same sex couple, not originally because of my endometriosis

Amazing, gives me so much hope :)

Hi, I mostly see cases where ivf is recommended without surgery as it can cause more issues e.g scar tissue and prolonged healing. It's only really recommended for large fibroids and cysts and troublesome location. Id certainly put the acupuncturist at the bottom in terms of the advice. It is best to get a proper diagnosis and know what stage etc but lots of people go straight for ivf with infertility so maybe this could come later for you, especially if your periods are severe. Wishing you lots of luck and happiness!

Hi everyone, I'm new to this forum. Thank you for sharing your experiences.

I have endometriosis too, with an endometrioma on my left ovary, adenomyosis and a very low OR. I am halfway through my first IVF cycle (I was advised not to remove the endometrioma to not risk damage to my left ovary), but I have had a poor response to my stimulations. I only have 4 follicles (1 on left, 3 on right), but the rate that they are growing is really slow. I've been eating lots of protein and trying to rest as much as I can, but it doesn't seem to be working.

I'm waiting to see our doctor now about next steps and whether they will up the meds, but honestly in this moment it is just so discouraging. We knew going into this that it would be hard and we may not get anything but when it actually happens it hits differently.

May I ask those who have been through this, whether the endo had any impact on the rate of follicle growth in your cases? Is there anything I can do for the remaining half of this cycle to help it along? 🙏🏼

I have stage 4 endo and was told my chances of conceiving naturally were very slim. We tried with no luck and eventually opted for ivf and our second round was successful. Our little one is around 18months and I have actually fell pregnant naturally. Suffered a miscarriage 3 months ago and now pregnant again.
Good luck for your journey it most definitely can happen x

I have abnormal ca125 and am expecting an endo diagnosis

How encouraging to hear. Lots of love and health to you and yours

Sorry not sure what ca125 is?

A blood test where the result is high / abnormal in patients who have 1 of a few things including endo, pid etc

Ah OK. Hopefully not and everything turns out the best it possibly can for you

Unfortunately i had a private tube flush
Tubes blocked :(

Hi, I have endo and adeno but fortunately didn't have blocked tubes or PCOS. They thought it might have been the state of my uterine lining that was preventing me from getting pregnant so I had a polyp removal before my frozen transfer, which was successful and I have an 11 month old DD.

It's frustrating but one thing I learned about pregnancy/IVF and endo/adeno issues is that there is no hard and fast rule or answers. I can't say whether the polyp removal is what made the difference but I was very lucky on the first round with a womb in less than great condition.

You can absolutely get pregnant and have a healthy baby via IVF with endo/adeno 💐

Could I get a bit of insight into what people's labour was like with endo ivf? I have severely painful periods and I'm worried I could hemorrhage or be in severe pain during and after birth. Thank you

I had IVF with stage 4 endo (conceived first cycle, so very lucky). Ended up having an induction with a fairly quick 8 hour labour, found the pain not nearly as bad as people had told me, and I managed until 7cm dilated until I had an epidural (plan was always for an epidural!). I didn’t hermorrhage and had a v quick recovery. I know not everyone’s story will be as positive as mine but hopefully provides some reassurance. I think my midwife did warn me because I had a 6cm endometrioma cyst throughout pregnancy there was a risk of it rupturing during labour but it didn’t.

Thank you so much for the feedback. It gives me hope

Can I ask your age when you had ivf. Also what your symptoms were/are? :)

25 so very young in the IVF world, but I only got 6 eggs at collection so biologically my ovaries seem similar to someone older. I had all the classic endo symptoms, heavy and painful periods, sciatica type pain and fatigue. I did have a laparoscopy to remove endo 9 months before starting IVF too

Thanks. Yes mines slightly different. They tried to operate but was too fused together so was bleeding too much. They can access for ivf and a full hysterectomy has been suggested at some point. Yes people talk about flare ups but I cant relate to that. I'm so weak with tender muscles all over my body and pain. Ivf to start in next few months