Has my cyst grown back so quickly?πŸ˜” - Endometriosis UK

Endometriosis UK

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Has my cyst grown back so quickly?πŸ˜”

ShiningStar123
ShiningStar123
β€’13 Replies

Hello everyone. 2 months ago l had a laporoscopy to excise 2 big endometriomas, around 7-8cms from my right ovary. They were actually causing pains and throbbing sensations on my left hand side, thats how big they had grown and how they had invaded the space in my tummy. I haven't had my follow up from my consultant yet, it is in fact this week. However this week l have got the same, aching, dull pain in my left side of lower tummy exactly how l did when l had my cysts. Can the endometriomas/cysts have grown back so quick. I am so worried 😟 I actually chose to have them excised and not drained for the main reason that they have a lower recurrence rate.

Thank you

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Yes, I'm afraid they can. I had one removed in mid January, and mid-March started getting the same symptoms, had an ultrasound and it had come back (2.1 cm). Were you put on any hormone treatment after excision? You should have been (I wasnt!) as it's been shown to significantly reduce the risk/delay recurrence of endometriomas. Once diagnosed, I went on the oral contraceptive pill, taken back to back with no breaks. It helped with the pain within a couple of weeks. I had another scan in July and the endometrioma had grown, but only to 2.9 cm. Since mid August I have been completely pain free and I'm hopeful the endometrioma has stopped growing or possibly even shrunk (as there are studies showing the particular pill I am on - Eloine - shrinks endometriomas.)

Thank you for your reply. I can't take any BC as we are trying for a baby. I have my hospital follow up tmrw so will post an update. X

Bless you. So frustrating! My endometrioma was only drained because it’s too engrained in my ovary and it grew back bigger within months. I’m now booked in for a specialist surgeon to try and remove it and will then be going onto Zoladex to prevent any regrowth. It’s such a frustrating journey and I do sympathise with you. Could it just be your ovaries kind of waking up and working again?! I don’t know! Xx

Thank you for your reply. Its not fair is itπŸ˜” lm hoping it is my ovaries just waking up too. I'm due on soon aswelI. I have my hospital follow up tmrw so will post an update. X

hi. Hopefully they can help at the follow up, for me I had an orange sized cyst drained ( couldn't remove due to its location ) was told id be really unlucky if it refilled, I had an MRI 6 weeks later and it was the size of a football. Managed to get an amazing surgeon and with surgery treatment and ivf we have our little miracle. One thing I regret is not standing up for myself more, I knew something was wrong but they are the experts and I stupidly believed them that I was still imagining the pain from the cyst rupturing. You know how it feels so don't be sorry to ask for scans etc they don't know how it feels. Good luck 😊. Xx

This gives me so much hope! 6 years of TTC, two miscarriages and now endo diagnosis. One surgery down, one to go and then IVF! So pleased you got your miracle xxx

hu. It's tough going but can happen. My endometriosis was found by accident through emergency surgery for a suspected burst appendicitis, turned out to be a slow ruptured chocolate cyst and I was in a terrible mess. I've always struggling with my cycles but gps have always said I'm just unlucky / low pain threshold. We have an older miracle ( specialist no idea how with the state of my insides) but it took 8 years of ttc, investigating fertility, emergency surgery, planned surgery, time to recover, being told ivf would be the only option and very poor chance due to the extent of the endometriosis, we took 6 months to think about it and decided if we didn't try we'd always regret it for miracle no 2. I didn't react badly to any of the medication, they monitored me very carefully throughout, my reconstructed ovary that wouldn't work produced healthy useable eggs😊. We were lucky first time and have some in the freezer. I didn't have a straight forward pregnancy but it was endometriosis related just unlucky. We never thought wed make it, at every turn we have been told its unlikely but we are very blessed and proof it can happen. Good luck with your treatment and feel free to get in touch 😊. Xx

Thank you hun for your reply. Congratulations on your little miracle πŸ₯°Its such a hard journey and lm very happy for you. I have a list of questions to ask tmrw so will post a update. X

hi. How did it go? Hope you got some constructive advice and a plan. Xx

Be aware that endometriomas are usually accompanied by deep endo elsewhere, especially rectovaginal endo behind the uterus between the back of the cervix and front of the rectum. This isn't always found by general gynaecologists at a lap and must only be treated in a tertiary endo centre. RV endo predominantly affects the left side and typical symptoms would be pain with or after sex, lower back pain, bowel issues and often referred leg pain. I should watch out for these and really you need a detailed expert scan - MRI or ultrasound to map your pelvis.j

Thank you hun for your reply. I will post an update below, lm so confused, l wish l had read you msg before my consultation πŸ˜”

Hi ladies. I've just had my phone consultation. It went really well and the doctor was very pleasant and answered all my questions. The doctor was present during the operation but wasn't the lead consultant.

He asked how l was and l explained my recovery was going well, 9 weeks post op, although l do get very tired quickly atm. He explained they removed the cysts, which were located in the Pouch of Douglas (what is this? Is this rectovaginal?) And he said the cysts were located there due to the cysts being large and finding space anywhere they could as they were actaully stemming from my right ovary. I told him about me being bloated again, constipated and pain in my left side lower tummy radiating down my leg, exactly the same as how it was before the op. One month after the op all this had disappeared. I asked if the cysts could have returned so quickly and he said this was very unlikely. However as l was worried and had symptoms he will ask for an ultrasound apt to be sent out.

I had some endo excised too and l asked how bad it was and the stage and he said it was minimum. It there was severe endo l would need a 2nd operation.

Initially l was referred due to possible ovarian cancer, so have had an ultrasound, internal ultrasound, internal examination by a doctor and an MRI. It was the MRI that identified it was an endometrioma. So would all these tests not show if l had rectovaginal endo?

My hospital is an endo specialist hospital so surely they would know if they had left any endo behind. I am so stressed now, dreading my ultrasound in case they find something πŸ˜ͺ

Xxx

When you say your hospital is an endo specialist hospital please note that hospitals aren't specialist centres but some hospitals have tertiary centres. So you can be in the general gynaecology department in secondary care which is quite separate from a BSGE centre which might be in the same hospital. They don't allow doctors to be mentioned on here but if you look on the list below you can see if your surgeon is listed under a centre.

bsge.org.uk/centre/

The pouch of Douglas is a space between the back of the cervix and rectum that is lined with peritoneum (pelvic lining). Rectovaginal endo usually involves the POD being filled with fibrosis (obliteration) which is an abnormal overgrowth of connective tissue which invades healthy tissues as part of the inflammatory process of endo. This is often loosely referred to as adhesions but fibrosis is when they are a result of disease. Disease there will often if not usually involve the uterosacral ligaments (along each side of the POD) along which nerves runs that join the nerves at the sacrum and leg pain is due to referred pain down the sciatic nerve. With large endometriomas stuck in the POD and your left sided symptoms it is highly likely you might have RV endo and be stage 3/4.

If you want more info on the appropriate treatment pathways can you send me a pm. x

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