Trying to fall pregnant with endometriosis

[pandmdav]

Sadly, we had a miscarriage with our first child at 8 weeks. My wife had to have a scan as the miscarriage wasn’t happening as quick as it should. This scan showed a cyst on one ovary so a scan was booked to check it out. This scan then showed a cyst on both ovaries which the doctors have said are because of endometriosis. However, her uterus etc were all fine and my wife has no symptoms of endometriosis what so ever. Her periods are still regular and ovulating tests tell us she is ovulating when she should be. Surely she would have some symptoms? She is booked in for an MRI but obviously we are now very panicked as we are feeling it is going to now be very difficult to conceive. We are looking for some reassurance from people who have been in a similar situation. We fell pregnant within a couple of months of TTC originally but now we are less than optimistic.

I have endometriosis and got pregnant with the assistance of IVF. I think I remember reading once that 70% of women with endometriosis who want to get pregnant do.

It is possible that Gynae will recommend an op to get rid of the cysts which should improve chances of a successful pregnancy.

Your wife may or may not be offered a dye test on her tubes. If the tubes are affected then this does again affect chances. But women with hydrosalpinx (swollen damaged tubes) can and do get pregnant naturally and with treatments.

This may be more difficult than it first appeared as your wife may need surgery, which is not a barrel of laughs. However I think there’s a lot to be hopeful about. Good luck.

@pandmdav You can have a teeny amount of endo deposits and be on the floor in agonising pain and you can be absolutely riddled with it and not have any pain. Usually there are symptoms such as severe period pain but not always. It depends where the endo is.

However, the positives are she did get pregnant. As above she may well be offered a dye flush of her Fallopian tubes. Mine were done as part of a "laser lap and dye" which meant laparoscopy, keyhole surgery,incision below the belly button and then 2 other incisions left and right and lower to insert instruments to assist moving things around. So laser any deposits and flush the tubes.

No one can say whether this will be an easy journey but as I said positive that she was able to conceive quite quickly despite the ovarian cysts. Anecdotally, post surgery I was told I would need IVF due to everything that went on before and what they saw internally. I stopped taking contraception and managed to get pregnant immediately and naturally. I went on to have another child a few years later. We consider them miracle babies, especially my first.

Your wife's age may also have some bearing on her egg reserves and her chances of getting pregnant too.

Thank you for your comments. The ending cysts are in the ovaries. One hasn’t changed since originally detected back in April and the one of the other ovary was only picked up on the scan she had 3 weeks ago. My wife was 30 in January. The scan she’s just had said her uterus etc were fine. Would this scan have picked up if there were any issues with her Fallopian tubes?

*Endo cysts

As far as I understand it they can’t make judgments about the state of the tubes from a transvaginal ultrasound.

30 is young. It is possible that she has a lower AMH because of endo. But seems unlikely if you guys got pregnant after 2 months of trying.

@pandmdav to be honest they need a specialist ultrasound person to detect endo which is why your wife has been referred for an MRI, much less invasive than the laparoscopy and no additional risk of adhesions forming from it. Cysts are much easier to see on ultrasound, mine were seen on that. My diagnosis was 21 years ago so luckily things have changed for the better medically in terms of scans and MRIs.

I was just turned 28 and they told me I was the right side of 30 for IVF. It would be different if your wife was say early 40s so time is on her side. As I said best to focus on the positives, she did get pregnant and fairly quickly. I have always found this website very useful for information.

https://www.endometriosis-uk.org/

@pandmdav hello just wanted to post as I am currently pregnant with my first and have really severe endo (4 surgeries so far in the past few years including a bowel resection) so whilst it did make it harder we did concieve. My next door neighbour concieved with endo through IVF and my colleague concieved (now baby no.3) despite endo and it actually helped hers significantly.

Anecdotally, not a single part of my fertility was affected by endo in terms of levels, ovulation hormones or egg levels etc. Mine all boiled down to just being too angry and scared inside and it took exactly 2 months after the surgery to really remove it to get pregnant.

Whilst there are never any guarantees, it is a positive sign you did concieve from my experience.

Symptom and diagnosis wise it is normally the MRI that picks up endo more than anything else but amount of growths and symptoms don't necessarily link. Someone can have stage 1 endo and be on the floor, but a higher stage and feeling nothing.

I found the endometriosis forum over health unlocked really helpful as an aside as so many women could relate but also help with perspective whilst being super supportive!

Sorry to ramble on and sorry for your loss OP!

Thank you for all your comments. Reading experiences from people who are/have been through this is somewhat reassuring.

is there a chance that the endometriosis could have started because of getting pregnant originally? Or would my wife have had it before getting pregnant and we did not know? Or are they not linked in anyway?

If your wife was on the pill it may have masked the endometriosis. It’s perhaps possible she has only developed the cysts after coming off the pill. After you guys have a child she may want to consider getting back on contraception asap to halt the progress of it. The Gynea should give you advice.

That’s interesting. My wife has never been on the pill. She’s been asymptomatic and the cysts were only found due to a scan being needed because of the miscarriage.

@pandmdav if it helps, I have "severe" endometriosis and never had any symptoms. In my first pregnancy a 10cm cyst along with two smaller ones was seen on ultrasound (all on one ovary). It was a complete shock and the sonographer kept asking whether I had heavy/painful periods to which I said no. The only time they were painful was when I was in the pill funnily enough - I stopped that because the pain was too much and that was 15 yes ago.
This first pregnancy was uneventful and I now have a 15m old daughter. This pregnancy took 6 months to conceive.

Second pregnancy was an accident so really just caught first time. But it ended up ectopic due to the endometriosis. My tube ruptured so had to have surgery. The cysts were removed at the same time along with some adhesions. My ovary with the cysts stopped working after my first pregnancy for some reason but my surgeon reckons once healed it'll start ovulating again now I've had the cysts removed.

As others have said symptoms really mean nothing, and it's perfectly possible to conceive with endometriosis.

Again, that is positive to hear. We are probably going to go private with MRI etc as it took us 3 weeks of chasing to get the original scan results. The Gynea received the results on the 13th July and we got them on Thursday. If I didn’t threaten to put in a formal complaint, we still would be waiting.

My wife’s ovulation tests have told her she’s ovulating again which matches the rest of her cycle which again I will take as a positive.