Endo and Ovarian Cysts?: Hey! I'm new here... - Endometriosis UK

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Endo and Ovarian Cysts?

Honor20 profile image
5 Replies

Hey! I'm new here so I apologise in advance...

I'm 20 years old and I have been suffering with severe abdominal and thigh pains for 8 years. I finally had a laparoscopy 4 days ago and got diagnosed with endometriosis. However, they also found (and this was the surgeons' terminology) a HUGE cyst in one of my ovaries. Apparently they had seen a small cyst in one of my ovaries during an internal scan about a month ago and 'thought' they had told me. They've removed what they found and sent it off as a biopsy, as they said they need to be 100% that it is just a cyst. The surgeon said that they only found a relatively small amount of endometriosis and that the cyst shouldn't have caused that much of constant pain. I have so many questions that they haven't answered!

1. Does this mean that I'll always have a problem with cysts in my ovaries? Or is it a one off?

2. Will this affect my fertility?

3. Can a small amount of endometriosis cause such severe amounts of pain to the point that you can't move?

Sorry to bombard, but I was kept in hospital for 3 days after my surgery and was on a lot of pain relief so I wasn't in any state to ask or comprehend questions/answers. The past 3 days are a total blur!

I'd appreciate any comments anyone can offer :)

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Alicepirate profile image
Alicepirate

I can answer number 3 that yes a small amount of endo can cause a lot of pain amount of pain isn't always relative to how much or how bad endo is depends or where it is too same with cysts.

I think that straight after a lap for 6 months you are more fertile not totally sure but sure someone else may know the answer better💗

Honor20 profile image
Honor20 in reply to Alicepirate

Thank you, that makes me feel so much better. I've been freaking out so much! Googling things doesn't help either haha

NDE1987 profile image
NDE1987

Hey hunny i just wanted to say everyone is different. I am 30 years old and had my first Lap when I was 25 they also found a big cycst and I felt so much better after this operation. My periods weren't painful and I actually didn't suffer fromeg pain. Then I got married and started trying for a baby and I found that endromesosis did affect my fetility. So far I have had two failed IUIs and a failed ivf. I am currently going through my second ivf. I pray that this isn't the case for you as everyone is so different. I guess you won't know until you start trying for a baby like me. Hope you feel better and happy to answer questions. The cyst can come back, I currently have a 6cm cyst which I have had for 6 months, but I can't face having another operation x

Honor20 profile image
Honor20 in reply to NDE1987

I'm so sorry to hear you're going through all of that, I honestly pray that your 2nd round of IVF is successful! The cyst that got removed was 7cm but they said they've had to send it off to see what kind of cyst it is, cancerous or not. So fingers crossed for the both of us!

Music1 profile image
Music1

Hi Honor

I can only offer my own personal experience with Endo. I think everyone is different.

1. Does this mean that I'll always have a problem with cysts in my ovaries? Or is it a one off?

In my experience it wasn't a one off. They grow over time, until they burst or rupture and then sadly they grow again. I had 2 large chocolate cysts (filled with old blood) removed during a lap. Sadly they have grown back again and again over the years. I have one now on my left ovary that measures 7 cm. Most of the time they stay there and if they're small enough you may not be aware of them.

2. Will this affect my fertility?

Not sure to be honest? It's the other things that Endo can damage over time that can cause problems. I had to have my tubes removed as they were damaged by Endo. I am having ivf icsi (5th attempt for me but I'm considerably older than you so don't worry :) I currently have a 7cm chocolate cyst which they've seen in a scan and I'm starting ivf again in the next few weeks. My clinic don't seem worried by the cyst at all, except say that it may cause some pain but shouldn't affect outcome.

3. Can a small amount of endometriosis cause such severe amounts of pain to the point that you can't move?

Sadly I think it can. I think any amount of Endo can cause an incredible amount of pain. Remember, sometimes they are unable to find all of it during surgery anyhow. It gets everywhere. Yes, I've had days when I've had to spend a whole weekend in bed with pain killers and a hotwater bottle curled up unable to move.

You've gone through a lot at your age and I wouldn't wish this on my worst enemy. Don't worry about not asking questions. Google doesn't have all the answers, but just reading people's experiences on this site give you a fair idea. I would imagine you'll have a 'follow up apt' within a few weeks to see how you're doing and discuss the surgery - I certainly did. Between now and then, write down any questions you can think of so you don't need to try and remember on the spot. When you've had any kind of surgery I don't think anyone is in a state to be asking questions and thinking clearly. Look after yourself x

Keep a notepad and pen near your bed and write down your questions as you think of them. Best wishes x

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