So I had surgery in February to remove two cysts one on each ovary 6cm and 10cm respectively. 4 months post surgery the pain came back and the doctor took another ultrasound to show I have two cysts again on each ovary but really small 16mm and 1cm.
Is this possible for it to recur this fast or did he just miss a bit? I'm really annoyed as I wanted it all removed and now the cysts will be too small to remove they will only manage with drugs. Can you get another surgery to remove cysts this small?
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Cammmie
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Were they endometriomas (chocolate cysts)? If so, this happened to me. I had one endometrioma removed and 2 months later the pain came back on same side and a scan showed a 2 cm endometrioma. Consultant said it could be the same cyst growing back (if they leave any remnants of the cyst wall behind, it simply reforms) or it could be a new cyst (simply due to the continued underlying endometriosis condition) in a different part of the ovary. It isn't likely the surgery 'missed' those cysts originally.
At 2 years post surgery, 30-50% of endometriomas have recurred. Guidelines say you are meant to be put on hormones (the pill, coil or similar) after surgery to prevent recurrence, but I wasnt, which annoys me.
On the NHS, I was told they only remove endometriomas larger than 4 cm (as from this size is where there is a greater risk of torsion, which a medical emergency) and/or when the pain is unbearable/affects daily living. I don't think they will remove them at your size even in the private sector (my private consultant did not offer to do so) as they all follow the same guidelines as the NHS, just you get the treatment quicker!
I am now on the combined OCP Eloine, which has helped greatly with the pain. I am taking it back-to-back with no breaks. I've been on it since end of March and for the past month I can say that my pain has completely gone (I'm lucky that I've never had any other endometriosis symptoms, just the endometrioma pain). There are studies showing that the pill I'm on shrinks endometriomas over 6 months but I wont know until I have a scan in October.
Hi Cammmie, so sorry that your ovarian endo is back so quickly!! This must be really tough to get your head around. I too am worried about regrowth of ovarian endometriomas.
Boxclever1 - you seem to have a good knowledge of endometriomas so I hope you don't mind me jumping into the convo.
I was due to have IVF within 6 months (ideally) of my last surgery. My surgery was now 15months ago and although I've been at top of IVF list since start of the year, Covid has delayed IVF treatment so yeah not in the best situation. Is your endo treatment managed by your GP or a specialist? Xx
Hi, I'm afraid I don't know much about endometriomas in relation to fertility (as I've completed my family so never looked into it) but in terms of your question on who is managing it, my case is a bit weird as I had my op privately in Jan, then symptoms recurred at start of lockdown. I managed to get a scan at the private hospital (through the backdoor really - I phoned the scan department directly, and didnt pay for it!). Because of Covid, I couldn't get hold of the private consultant for advice (and anyway, I had previously been formally discharged from his care) so it was down to me and my GP! So I'm under the care of my GP. I don't have a NHS consultant (as I never reached the top of the waiting list to see one) and I'm not under the care of my private consultant - although to his credit, he did call me briefly a couple of months ago, confirmed that the pill I'm on is fine, and to get back in touch if things progress in the future (I'm with Benenden Healthcare, and they have a 2 year exclusion after receiving treatment for a specific condition, you're not covered for the same condition within 2 years).
Just to add, my GP does have access to the local NHS gynae consultant through a system called Kinesis where they can get advice on treatments etc. So I believe she checked the management plan with them and I assume it was them who told her the 4 cm rule.
Thank you so much for sharing your experience. It has really helped. It's great your private care has been so positive and that you're able to feel confident with their decisions about hormone treatment etc xx
I agree with Boxclever1, unfortunately these cysts can grow back because the endometriosis is still there. And no, you probably wouldn’t get any surgeon to agree to operate again to remove them, because they’re too small and new ones would probably grow again.
It’s like having mould on your walls - you can scrape it away and paint over it, but unless you address the problem, the mould is going to keep coming back.
You would probably need some kind of hormonal treatment. There’s a section on hormone treatment on the Endo UK website that gives more info.
I'm so glad I found your post. I'm in the exact situation as you. I had a cyst removed in May from my right ovary( multiloculated cyst with thick walls) that's what the doctor's letter said. I then got pregnant in August and had a miscarriage in November. They gave me an ultrasound scan after the miscarriage and found another cyst on my left ovary. I remember the surgeon told me the cyst was actually removed from my fallopian tube near my ovary ( the ultrasound shown it was on left ovary) I was confused but didn't ask for much info . I'm now beginning to think they might have missed the cyst on my left ovary and only removed the one they saw on the tube. Can a new cyst form so quickly? I was searching so hard for an answer but I couldn't get one. I've been referred to gynaecologist they will contact me for an appointment for more scans and follow ups. Although I had MRI scan and biopsy done to confirm the cyst I had last time was benign and this new cyst they described sounds alot like the one I had before but I can't stop worrying knowing the cyst has come back , I went through alot of sleepless nights with my anxiety last time and I can't cope with dealing with the unknowns
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