Log in
Endometriosis UK
42,172 members35,752 posts

Endometrioma - what next?

I went to hospital at the weekend with abdominal pain and an ultrasound showed what they suspect to be a 5-6cm endometrioma on my left ovary which had ruptured. Left hospital with really minimal information and was told I’d have a follow up within 4 weeks. We have been trying for a baby for a year now and I’ve since read a lot online which concerns me about my fertility. From what I’ve read Endometriomas suggest advances endometriosis and should be removed if they grow larger than 5cm as they can damage the ovary - is this correct? To be able to preserve my fertility I’ve been looking at where the specialist endometriosis centres are but wondered where the best places to go would be? I found some information which suggests oxford has done more operations than other centres but would really appreciate any advice (and stories of hope of people who’ve gone on to have a family after experiencing this)

Thank you in advance

20 Replies
oldestnewest

Have a look on the bsge website x

Reply

Thank you, that’s where I saw the info on amount of operations each centre had done but don’t really have anything else to go on. Any additional advice greatly appreciated

Reply

What area are you in? I saw a general gynaecologist and a fertility specialist about 4 times in the last few years and they were useless, I looked on the bsge site for my nearest endo centre then asked my gp to specifically refer me there which took me another year to actually be listened to as nobody agreed with my suspicions that I had endo but basically ended up referring me just to shut me up which was not a nice feeling not to be believed. It can be a fight unfortunately

Reply

Thanks Lizzy I’m in the East Midlands but my local hospital isn’t a specialist centre. I’m sorry to hear you had a difficult time getting referred. My gp has suggested I go to my follow up appointment locally then if surgery is needed he’ll support me to get referred elsewhere so just waiting for that appointment now. Thanks again for replying

Reply

My local hospital isn't either which is where I was seen first and they basically laughed when I mentioned endometriosis saying that's not the case as I've had 5 previous surgeries and they would have noticed it then, turned out my surgeon had wrote in his surgery notes that I had adhesions that looked like endometriosis but I wasn't told this and not one doctor bothered reading the notes in any of my gynecology appointments. I saw the specialist over 2 years after my last surgery (this may) and he's the only one who actually read my notes and saw what was written and said I needed a lap, if it wasn't for me fighting for an answer and listening to my body then I'd still be undiagnosed. I'd definitely recommend going to a bsge centre as they actually listen to you

Reply

Thank you I’m definitely going to ask for a referral to a specialist centre just not sure which one....

Reply

Hi Lucy, I’m not sure where you are based but my sister has had serious problems with Endometriosis and PCOS and has been under Dr Andrew Pickersgill at the Alexandra Hospital in Stockport. She has had multiple surgeries under him and even after being told she was probably infertile, she has now conceived! Might be worth having a look into him as I know he has brilliant reviews and has helped many women with similar troubles x

Reply

Thanks for sharing LSRx great to hear your sister has conceived really lovely news and gives me hope!

1 like
Reply

Hi Lucy.

Wow....your story sounds so much like mine! I had exactly that, horrendous abdominal pain following a car accident...a couple of days later I was due a routine ultrasound on my kidney and they diagnosed a chocolate cyst on my right ovary around 6cm in size and surrounding areas of internal bleeding where it had ruptured. I was scheduled for a laparoscopy within approximately 8 weeks of the scan.

I had the surgery at Portsmouth QA hospital which is an Approved endo centre.

After the first lap I had the cyst drained and endo lasered from pretty much all surrounding tissue. Turned out I had grade 4 endo and had no idea...(endometriomas are associated with grade 4) I was so shocked and worried. Due to the extent of it I had to have 6 months of zoladex to put my ovaries to sleep and then further lap to mobilise both ovaries and clear the remaining endo from my bladder and pelvis.

Following this I had fertility testing which lasted around 9 months. (We had also been TTC)

The endo came back thick and fast and I had one last pelvic US before we were referred to our fertility centre. Due to the state of my endo my IVF was declined on the basis that I would have a less than 10% chance of success with or without IVf. We were broken but we accepted our fate... we got married and the month of our honeymoon to our amazement after years of trying we fell pregnant against all of the odds.

Our beautiful little boy is now 20 months old 💙

Never lose hope. I have now had three laparoscopic surgeries with Portsmouth hospital Queen Alexandra. I even had endo removed from my bowel in January this year and managed to dodge a stoma. I am so grateful for what we have, if you ever want to chat feel free to PM me.

Just roll with it and trust the specialists. The chances are that the reason you are struggling to conceive is likely to be more endo than the scan shows which can only been seen via the lap. Once you have your lap and have it removed your chances of conception should increase.

Good luck x

2 likes
Reply

When you got pregnant did you have a cyst ?

Reply

And yes I had two cysts when I fell pregnant. Ironically the week before Testing positive I had an ultrasound scan that showed the endo was worse than ever! Just let Mother Nature Work her magic x

Reply

Hi Missy Tx

Your story gives me so much hope. I have been married a year..am 30.. TTC 9 months..got an ultrasound done on a routine basis ..which showed multiple endometriotic cysts in the right ovary. Plus an element of PCOS..

I was really shocked as I have never had any symptoms..and my cycles are regular.

Am really worried about my fertility. Am trying to have faith..but it's hard sometimes.

1 like
Reply

Stay strong, I know how hard this is, I didn’t have my son until I was 31 1/2! so I know exactly how you feel.

I have regular bleeding too and have just been told I’m not even ovulating now?! So periods sometimes can totally fool you, just because you bleed it doesn’t mean you are releasing an egg and it could just be the lining of your womb coming away each month.

But don’t panic, there are medications they can give to stimulate ovulation and it only takes one egg! please have hope. Always here if you want to chat. Sending you lots and lots of luck xx

Reply

Thank you so much..I really sink into negativity at times..

Am planning on seeing a fertility expert..I am just praying hard that things work out. Lots of love to your lil one. God bless the two of you!

Reply

Thank you so much MissyTx it’s so lovely to hear that you fell pregnant naturally. I really appreciate you replying and sharing your experience it really has helped reassure me. I’ve got a date for a follow up appointment in 4 weeks and presume then they’ll discuss a lap then but I’m keen to go to a specialist centre as just don’t want anything to impact my chances of having a baby. Feeling much more positive now, thanks again

Reply

And so you should. I know a lot of people who have been riddled with endo and have happy and healthy children. the idea of a lap is to preserve your fertility so you will be in good hands.

Your chances of conceiving will I’m sure improve after the lap and if they don’t then you will at least have a clearer picture of what’s going on in there. Hold on to that hope. Your time will come.

Keep us posted with your journey and stay strong x

1 like
Reply

Thank you so much xx

1 like
Reply

A doctor said for me that it doesn’t matter the cyst as the disease itself he said you could have endometrioma on one ovary and you struggle to get pregnant and you could have endometrioma on both ovaries but you get pregnant it depends on the cells not the cyst

I have read 3 women here they got pregnant with chocolate cysts ond a lot of women on other websites I concluded that the cysts more likely will make the journey more longer but will not prevent the pregnancy

2 likes
Reply

Totally true in my case AND I have a septate uterus too which is another factor that would likely cause huge fertility issues and premature labour...my little one was born at 41 weeks and 3 days! The body is an amazing thing, be positive ladies, they completely wrote me off and now we are having a crack at baby number 2, let your body relax and just go with it, it only takes one little swimmer x

2 likes
Reply

Yes i was thinking to take lupron for the second time i got lupron shots for three month and before it i got decapeptyl shots for three months also as my weeding will be next year mabye after 12 months i was thinking to prepare my body and get rid of endo cells in order to get pregnant quickly so my option was to take lupron three times again but after i read that cysts don’t mean infertility and there some women who were able to get pregnant with them mabye i will be lucky like them i know i will struggle but i feel the ending will make me happy 💪

Reply

You may also like...