4cm cyst before IVF?!

[Emmyeve]

To cut a long story short I am due to start stims for ivf next month.

I have a history of endometriomas including having two large ones removed Dec17 with excision surgery. (13cm right ovary, 5cm left)

At a scan in July with NHSS fertility clinic they noticed a 3cm cyst and couldn’t find right ovary (suggesting cyst is on/hiding right ovary) , left found. Nobody has even addressed this cyst with me. The sonographer said she wasn’t sure what type of cyst it is. Given my history with endo I’m personally of the opinion that it’ll be an endometrioma. They have just given me a date to start meds and the consultant said if I don’t come up with 5 mature eggs he will cancel my cycle and won’t get another shot.

I took it upon myself to get a private scan yesterday to see what’s going on in there. The sonographer is very experienced & has spent many years working in gynaecology. She said cyst is most likely on right ovary sitting in POD. She said it is measuring 3.9cm. Wasn’t sure if was endometrioma or dermoid & wants to re scan me in two weeks with ivf being so close. She says looking at it again to check any appearance changes can give her more idea of what it is.

Surely if they can’t see my right ovary because of this cyst, then they won’t be able to check the progress of my follicles on that ovary and the whole thing of stims is just a waste of time etc?! Surely I’ll need surgery to remove the endometrioma first.

Have any of you had cyst or endometriomas right before starting ivf? And what happened?

I’m fed up, it’s taken 14 months after my surgery to get this close as my surgeon forgot to refer me & delayed referring me to the clinic by 9 months!! And now I’m put back again. I don’t even know if my consultant will allow any of this now because I can tell he’s just looking for an excuse to cancel everything.

I’ve made contact with my surgeon to see what she says & I am trying to get back in with my consultant to see what we can do.

UPDATE... it has shrunk to 1.5cm!!! Thank goodness. I have been following strict clean diet and I really think that’s what did it.

[emmab178]

I had a ovary removed due to a 7cm mass of endo. In various scans afterwards theres been 3cm to 5cm of the mass remaining but it didn't effect the ivf as didn't have an ovary over there that we needed.

Possibly if they can't access the right ovary they will ignore it completely and concentrate on getting eggs from the other?

If after stims you haven't got many follicles you can abandon the cycle pay privately up to that point and save the nhs funded one for other time? That's what my clinic said we could do.

Btw you have a choice of nhs hospitals to have your ivf with. If you've lost faith in this one look at if you can have your round with another. We had a choice of 3 when we selected ours.

[Emmyeve in reply to emmab178]

Thank you for your reply. I thought the same as you but seems crazy to rely on one ovary (especially when my amh is already gone down because of surgery) when I have two! And what if my right ovary is being stimulated sat under that cyst, isn’t that a worry? Plus it could maybe stimulate the cyst too.

We are definitely not happy with that consultant but that was where I had my surgery so we just stayed there. We have waited and fought so long to get this far so I don’t really want to start changing hospitals as that could mean another long wait & im not getting any younger ha! Plus my consultant said we only get one shot at it. I argued that we are entitled to 3 rounds according to CCG regulations but he said he’d only be willing to authorise one round because my AMH went down to 2.0 after surgery. He said if I don’t achieve 5 follicles at a certain size, he would abandon the treatment altogether.

We have a private consultation about donor eggs next week & so I’ll compare his recommendations to the NHS guy I guess.

[emmab178 in reply to Emmyeve]

If you've got endo in the PoD that shouldn't be touched by someone without bgse training. Not many surgeons have it. Will pm you a great fb group

[Emmyeve in reply to emmab178]

I’ve already had surgery with a BSGE surgeon don’t worry I know all about that. I’m on a great Facebook group (endo revisited). That’s who did my excision , a bsge surgeon. The POD is just where my right ovary is sitting with the endometrioma on it xxx

[emmab178 in reply to Emmyeve]

Lol that was the site i was recommending!

[Emmyeve in reply to emmab178]

How did you Have the mass left over there if the ovary wasn’t there? Usually endometriomas are attached to an ovary

[emmab178 in reply to Emmyeve]

I made the mistake of going private and the surgeon told me he was an endo expert. He's not! He's a general gynae. That may explain some of it. He gave me no follow up notes or grading just said it was all over the ovary and he couldn't free the ovary so he removed my tube and ovary. Also said my ureter needed to be stinted in surgery as it was all over that. To be honest I'm glad he didn't screw anything else up.

At first they thought he'd left some ovary but it didn't respond during stims so no idea what's going on.

My right ovary is stuck to my uterus making it retroverted so i assume I'm riddled with it

[Emmyeve in reply to emmab178]

It has now shrunk to 1.5cm! Thank god

[Nuszkahope]

I had a cyst on my ovary before IVF, my doctor canceled the treatment and did laparoscopy to remove it ( mild endo was also found and removed)

I have waited 3 months and just started stimulating for a new cycle last night. I have been going through IVF for over 2 years and had many setbacks caused by doctors, little mistakes here and there so I think that the fact that you are taking matters in your own hands a little bit and don’t follow your doctor blindly is a good thing. Personally, I would not go achead with IVF knowing that I have a cyst on my ovary You want to make sure you are in a good “shape”, meaning no cysts, pollyps etc ( I have had it all by now ) the whole process is so tough, pupmining your body with hormones, being put under to remove the eggs etc, you want to make sure you get the max amount of eggs from both ovaries ( if you can) ... I wish you the best of luck with everything xx

[Emmyeve in reply to Nuszkahope]

Awww thank you

For taking the time to respond. With me having surgery 14 months ago to remove large endometriomas which reduced my amh significantly, I think removing the cyst would only reduce my amh even further sadly. It’s only a little one so I’m hoping it won’t cause too much bother if they move their backsides and get things going.

I wonder if draining it instead would mean it wouldn’t reduce amh as long as they could get going with stims quickly afterwards so it didn’t grow back.

I saw a private consultant today who said if I was using them for ivf, he would just go ahead with stims and hope that he can see at least some follicles on the right ovary where the cyst is, and if not, he would just rely on the left. He says he only needs one egg after all but the nhs consultant I’m sure will have a diff view & I know he’s looking for any excuse to cancel my one shot at it. He’s insisting on 5 mature follicles so that’s a big ask for my little old left ovary. It’s such a crappy situation after I’ve waited so long to get this far and begin stims and now this.

Sounds like you had stops and starts too, it’s utterly frustrating and I don’t have the luxury of waiting as I’m 37 already, 38 in Sept. personally I don’t want to be giving birth at 40 especially with endo being so fast progressing. My husband is 46 this year and we don’t really want to be those parents that could be mistaken for grandparents.

I’ve had full excision, had a brutal op 14 months ago so I wanted to go go go but as usual, nhs consultants are overloaded and don’t care that the cysts could grow back quickly which evidently one has.

Thanks again for your response xx

[Nuszkahope in reply to Emmyeve]

Ah I see ...My amh must have gone down too but they did not check it post laparoscopy so I don’t know by how much

I know exactly how you feel, you just want to get on with it, I will be 38 in August xx Have been dealing with infertility all together for 4 years now, that’s when I started trying for a baby, got pregnant immediately but sadly miscarred and couldn’t get pregnant since ... it is a pain in a backside!

[Emmyeve in reply to Nuszkahope]

Oh I’m sorry , that’s a long time. Ive only had 14 months & im sick already! My husband wants to go straight to private as he thinks nhs just stresses with me out with the frustration of not being listened to. But we don’t have a bottomless pit of funds sadly. I’ve just been reading through your stuff. Sounds like upping your dose should help. I’ve read lots of stories of women assisting their NK cells etc with clean diet, ditching gluten sugar dairy and processed foods. I do this because I have endo & the difference is amazing. I spoke to an immunologist last week about some other issues I have & agreed a clean diet was one of the best things for auto immune issues. Xx

[Nuszkahope in reply to Emmyeve]

We are doing it privately as we do not have an opinion of NHS here I am sooo sick of it but just need to keep going I decided that if I don’t succeed by the age of 40 I will be closing the door on IVF, will get a nice dog and move on with my life

Regarding nutrition etc... I eat quite well and exercise but I am not prepared to be ditching stuff like gluten or dairy as I don’t need to, knowing myself it would just add more stress to my life

Fingers cross next cycle works for us and the first one for you xxx All the best xx