Endometriosis discovered during IVF treatment?

[andromedae9]

Hi everyone,

I'm new here.

During my 1st round of IVF last year I was told after scans that I have one endometrioma @ 5cm on my left ovary. I haven't previously been diagnosed with endometriosis and haven't really experienced any pain apart from quite painful periods.

We went through with the egg collection in Dec -2015 anyway but the pain and discomfort never settled and the left side of my tummy was swollen. End of March this year I decided to contact my GP re the lingering pain and got referred to gynae. After scans it was confirmed that the endometrioma has grown to 10cm! and it needs to be removed. As we want to resume IVF once this is over they are doing a 2 stage surgery to try and preserve fertility. I am having my first laparoscopy in June and the 2nd in Sept. My consultant says there is a risk they might need to remove my left ovary and I am starting to get really worried now as I have never had surgery before and who knows what they will find when they open me up!

Have any of you been in a similar situation? Have you removed an ovary but still been able to conceive naturally or via IVF?

Is 2 stage lap surgery common?

Any comments or thoughts appreciated

x

[carolineeballard]

Hey, I'm not exactly in a similar situation because I am not going to IVF nor am I at the stage if trying for a baby.

But I have had numerous endometriomas in the past. All of them growing on my left ovary, and the largest was 15cm in diameter and the surgeons managed to take it out for keyhole surgery and save my ovary. (Which was my biggest fear)

IF you are in England it may be worth asking for a referral to a BSGE endo accredited hospital.

Hopefully someone else can give you advise and or personal experience regarding IVF x

[andromedae9 in reply to carolineeballard]

Hi Caroline,

Thanks for replying! Yes, I'm in the UK (Hants). Like you my biggest fear is that I might loose the ovary but I need to prepare for it as well. Hopefully my right one is ok but who knows what they might find. My consultant is BSGE accredited so fingers crossed.

You say you have had numerous endometriomas in the past. Were they all found at the same time or at different times?

x

[Rockflower]

Hi. I have a bit of experience!

Like you, I found out during IVF (2012) I had endometriosis as a scan during this cycle revealed a 4-5cm endometrioma (chocolate cyst) I did have many symptoms prior to this, now I look back,.... painful periods, spotting before my period started, and mid cycle bleeding (as well as suffering painful sex for many years) but the GP had thought this was just normal! (Wish I had known about endo before my diagnosis)

Anyway. After egg collection, I was quite poorly, my ovary swelled up and I had mild ohss. Like you, it didn't really seem to go back to normal. I eventually had to have the cyst drained as it grew to 8cm and caused daily pain.

(I wish I had also known that you need to have these cysts excised (cut out) and just draining them means they will almost certainly fill back up!)

Did you have embryo transfer? And did you get any frozen embryos??

We had transfer, despite me feeling so ill, but it wasn't successful. but we did get 9 frozen embryos from this cycle.

After the cyst was drained, and I had some time on zoladex injections, we had transfer of two frozen embryos, but this resulted in a chemical pregnancy. We then tried again, but this ended in the same result, another chemical pregnancy.

Then, as I was having more ovary pain, I had a scan and found out I had a few cysts again that were about 6-8cm in total. By the time I had surgery it was one big 10-12cm cyst with a smaller 3cm (agony) this time the surgeon excised them, and saved the ovary.

We did a final transfer of our last embryos last year, but this resulted in a chemical pregnancy again (so much bad luck, think we have I plantations issues)

I've just had more surgery as scans during this cycle showed I had 4 endometriomas!! And a weird cyst on the other ovary. I've had these removed along with a lot of scar tissue and adhesions.

Now we are looking to do more IVF, once I'm healed. I have no idea how my ovaries will cope as I've now had surgery on both. So I can't tell you if they will work well or not. But at least I managed to keep both ovaries despite the cysts and having surgery on both.

I have a couple of friends, who have conceived and had children with just one ovary, both naturally and with IVF. So it certainly is possible. Both had endo too. We will try naturally but we have only managed to get pregnant once naturally, and sadly that also ended in a chemical pregnancy, so I don't hold out much hope on this score.

Good luck x

[andromedae9 in reply to Rockflower]

Hi Flowerpotts,

Thanks for replying! I'm sorry to hear that you have been in a similar position to mine.

Funny you should say that about your symptoms. I too had spotting before my period started, and mid cycle bleeding, irregular periods/prolonged periods in 2014. I talked to my GP about it and tests/scans were made but nobody ever mentioned endometriosis as a possibility and I hardly knew what endometriosis was at the time. The endometriomas weren't there at the time so it was not obvious.

We had to do a freeze all as polyps were removed during EC in Dec 2015. So we did a Frozen Egg Transfer in Feb this year. (Unsuccessful) We only had 4 embryos and at the end only 2 left so we put them both back. They were only of average quality. No more in the freezer.

Once you have the endometriomas they just seem to keep coming.

You are so lucky to have both your ovaries. Quite a few women in this community seem to have had them removed. I am so worried I will loose mine as the endometrioma is so large but fingers crossed. I have already started to look into DE. My consultant says that we will not be able to carry on with IVF until Nov now. All this waiting...

How quick was your recovery after your laps?

Do stay in touch. Would love to hear how you are getting on.

I am on fertilityfriends as well. Same username.

Take care and best of luck x

[Rockflower in reply to andromedae9]

Hi.

Yes, endometriosis wasn't suggested by my GP when I went to her a couple of times with symptoms! I wish I had known back then as I would have sort treatment earlier and tried to start a family earlier too. That is the problem with endometriosis, is that having a laparoscopy is usually the only way to confirm it.

I do believe all the drugs with IVF have made the endometriomas much more of a problem for me. With my last frozen cycle I had to abandon it first time around as the oestrogen tablets gave me severe ovary pain, where there was just one 3.5cm endometrioma. Then we did a natural cycle, so no drugs, which was so much easier on my pain. This was September - November 2015. By February a scan showed I had 4x endometriomas in the right ovary!! I've just had surgery and I ended up with 4 endometriomas and another 6cm cyst (which went for testing) they grew quickly and bigger within only 6 months...pesky things. I'm sure I will get more....

I'm really sorry your frozen cycle wasn't a success and that you don't have anymore in the freezer. It's so hard going through IVF and all that it involves, for it to fail. Is such a tough journey. I can imagine like me, the thought of going through a full IVF cycle again is slightly terrifying.

I was fortunate not to loose my right ovary due to the endometriomas. The fact they removed one 10-12cm endo cyst and one 3cm endo cyst off this ovary Dec 2014 without needing to take that ovary is good news for me. I know it still works as both times I tried to do the frozen transfers, the scans showed I was ovulating from that side! So maybe you won't loose the ovary?

I just had surgery to remove the 4 endometriomas another Unidentified cyst off this same ovary, and I'm pretty sure I've felt that I've just ovulated from this side again. So fingers crossed its working still! It must be one tough little ovary! Lol.

The surgery in Decemebr 2015, I was back at work just 2 weeks after, but felt it took about 6 weeks to feel fully healed. This time I've been signed off for 6 weeks, and feel recovery is taking longer. but we can try naturally as soon as I'm upto it. Might be a few months before we will go for IVF. I think 3 months after surgery is about right... When I see my consultant I will ask him how long we need to wait.

I'm on babycenter, but not on fertility friends..... Though I used to be I think a long time ago, when I was obsessed with temping!

Defo stay in touch. I hope surgery goes well and your ovary is saved.

The message center isn't brilliant on here though as it fails to notify me when I have a message. I just check every few weeks, so it's not the quickest way to correspond. X

[andromedae9 in reply to Rockflower]

Thanks Flowerpotts,

Hope you recover fully soon.

xx