Diagnosed with Endometrioma

[Sonicchild86]

Hi all,

Decided it might be useful to join this group for in the upcoming months. Today I found out after a months worth of tests that the two cysts (one on each ovary) are something called Endometrioma. I’m not in a lot of pain with it thankfully just more of an annoyance every month after my period (for the last four months). Anyway today they recommend that I go ahead with a laparoscopic ovarian cystecomy to remove them. At 32 I’ve never had any health problems and this will be my first ever operation. I’m not feeling too bad about it right now but I’ve got a feeling once I find out when it is the closer it gets the more anxious I’m likely to get. I think the two things I’m nervous about is 1. The needle as I’m terrified of them, but at least I’ll be under pretty soon after they’ve put it in and 2. Not waking up which I know realistically is highly unlikely but obviously I’m going to think it as like I said I’ve never had an operation and have anxiety (not very often lately but for things like this). Anyway what are you experiences and advice and just thought I’d introduce myself for when I might want to post closer to my operation. Thanks in advance,

Ellie

[flamingos19]

Hey! I'm new here to this site too and was recently diagnosed with endometriosis about 6 weeks ago after a laparoscopy - which was my second time under general anaesthetic after having appendicitis a few years ago. I myself hate needles, the first operation I had was still when I was a child/young teenager and I was treated so well by the hospital staff- however it was an emergency operation so it was different. This time however, I am an adult and it wasn't the smoothest build up to the operation. I fainted at my blood test for the pre-op assessment and I had to do most of my pre-op preparation on my own. However, on the day of the surgery, the nurses and doctors were brilliant with me, I requested them not to put a needle in my hand out of a previous bad experience but once in the anaesthetic room the nurses around me were able to calm me down when I started to panic. After the operation I was checked on really well and regularly, even with some complications rising afterwards, I am still confident that I could probably cope with another if I had to. I hope this helps you somehow,

Sid

[wanwood]

I was very nervous about my first op, just not knowing what to expect at the hospital. It was all fine, and when I had to go in for a second op later in the year it was so much easier. As a young healthy woman, the risks of anaesthetic are very low! Ask as many questions as you can beforehand about how it all works and what will happen on the day. No such thing as a stupid question!

[Lynne_support Partner Endometriosis UK]

Hello.

I'm sorry to see that you are feeling anxious about your surgery, it's really understandable if you have never had an operation before. You may find some of the information on our website helpful, particularly endometriosis-uk.org/sites/....

You may also find it helpful to speak to one of the volunteers on our Helpline. They all have experience of endometriosis and can provide support and information. You can find the opening times on our website endometriosis-uk.org/helpline.

Best wishes

Lynne - Endometriosis UK

[Vickysponge357]

Hello, I am unlucky enough to have had a couple of operations under a general anaesthetic in my time and I can recall your anxiety from my first time!

The first was definitely the worst one as no one had prepared me for what it would feel like coming around from the anaesthetic which is by far the worst part in my opinion.

I can remember starting to wake up and feeling trapped in my body as I couldn’t open my eyes, speak or move. The nurse told me later that I was quite distressed at this point and commented that I was much nicer after I had recovered! But I can remember the panic that I was feeling. All of this however passed after a few minutes!

Waking up from my following general anaesthetic experiences I was then able to remember what feeling to expect and keep in mind that it passes very quickly and that it was all very normal. If I had been more informed of what to expect that first time, I would imagine I wouldn’t have freaked out quite so much.

The going to sleep bit was lovely though! They inject the anaesthetic into the cannula and I remember just feeling very calm and giggly and then I was asleep!

Best wishes

Vicky

[Minchoo]

May I ask if you want children? Or you have them? I had endometriomias and no kids it affected my ability to conceive and now I have no eggs to get at as the cysts have taken over my ovaries. As side note it’s good they have been seen and they want to remove them! Key hole surgery depending on how you feel takes 2-3 weeks to recover so I have found. Being nervous is normal. I hope it goes well for you. Larger laparoscopy and probably won’t be what you will have (like a c-section cut) takes longer to recover. Either way it’s good to inform friends / relatives and make sure you have a ride back from the hospital and someone to help you post-surgery as long as you need. I am sure it will go great. If you did want to have kids I would consider IVF or get those eggies frozen. Endo can spread unfortunately so it’s best to discuss post surgery plans too - birth control or GNRH agonists to keep it at bay.

[Sonicchild86 in reply to Minchoo]

Hey, I’m not really sure to be honest, they did talk to me about that and what they would do because I am unsure (take the biggest one out and if they had complications as it maybe touching my bowel, leave the second so that they don’t need to touch that ovary) That’s all I know thus far. I’m a gay women anyway so the process in itself wouldn’t be cheap... but then I’ve never had the burning desire but would like to have the choice if you see what I mean. Thank you for your advice, Ellie

[Minchoo in reply to Sonicchild86]

Well i think one cycle is £3000 - if you want to go for it then nothing is stopping you from putting them on ice. So you have the option with a future partner regardless - endo can eat into your organs so it’s best to think about it perhaps once you have had your surgery. If you are in a relationship it’s worth thinking over with your partner. I hope the surgery goes well. Keep us updated x

[Sonicchild86]

Thanks everyone for your advice it really helps for me to be able to prepare myself a bit better for what to expect. I’ll probably post again once I’ve heard when my surgery is or nearer to it. Thank you,

Ellie

[Sonicchild86]

Hey! So I’ve had my operation and it weren’t too bad, the needle in my hand wasn’t an issue... they were able to remove the biggest cyst next to my bowels but struggled to do the one on my left as it was very small and was stuck to other things, so they just drained that but hopefully that should be the end of it, because even if it does fill again it’s so small it shouldn’t give me any issues, although that side is the most painful as they made two cuts. To be honest the past few months I haven’t had any discomfort and I’ve just needed the toilet a lot around my period (which is usual for me anyway) but also for a week or so after which isn’t normal... so I’m guessing that was to do with it being near my bowels. Anyway coming out of the operation that for me was actually the worst, I’ve got a naturally slim body build so they think as well as I thought that’s why the anesthetics took so long to wear off, going to the toilet sucked, I wasn’t sick but I felt very ill and it wasn’t until the second time on my way back to my bed that it felt somewhat better, so I didn’t actually leave hospital until 10pm and I was in from 7.30am with my operation at 11.30am, so a longggg day! I still felt somewhat sensitive when I got home, but felt a lot better on Saturday. Now I’m just taking it really easy but trying my best to move around the house somewhat to aid recovery. My question is, how long does the pain feel at its worst? Yesterday it didn’t feel great, but was manageable... by the end of the day though it felt worse, I’m guessing from being up all day (obviously a mixture of lying down and sitting with a bit of walking mainly to the toilet). Today I really struggled to pull myself up out of bed, but I did sleep through the whole night. Any guidance would be appreciated, thank you.