Hi- I’m new After a referral for an ultrasound for heavy periods it was discovered I have a 5cm chocolate cyst on my left ovary. The gynae also says I have endometriosis which they told my husband at my c section 11 years ago but was never followed up.
I can’t say I have horrendous pain. Occasionally mid cycle I have bad pain but this has subsided over the years. I have heavy periods which fluctuate from 2-3 weekly causing me to be anaemic.
My gynae had wanted to leave the cyst as it doesn’t seem to cause any symptoms. I have a frequent dull pain in my lower back and abdomen but it doesn’t require painkillers.
I think I’m post menopausal due to the changes on my periods and hot flushes at night.
I’ve read that cysts have a higher chance of becoming cancerous after menopause so I had initially wanted to get it out.
My gynae offered a few options:
- removal of ovary and cyst. To stop more cysts she suggested remove both ovaries
- hysterectomy- seems radical
- hormonal treatment. I am not good with single hormone treatment due to my skin but I can take some combined pills. I’m not sure what the benefits of this would be?
At present is use transexamic acid to manage heavy blood loss.
I have occasional abdominal pain after a bowel motion. I have had problems with diarrhoea and win in the past which I have reduced by cutting down high fodmap foods.
I’ve been put on the waiting list for ovarian removal but now I’m wondering if it seems drastic. I feel I can manage my symptoms and I think they will reduce at menopause (I’m 47) The risks of surgery seem higher then the risk of the cyst turning cancerous.
I have no idea what to do?!
Considering a second opinion from a private consultant as we have private healthcare.
Can anyone give any advice?
B
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Bigsize9foot
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Hi I had a chocolate cyst and my right ovary removed last year and also my Fallopian tube. I had a Myriena a coil fitted. 6 months later I am almost pain free. Horrible experience leading up to my current status. Very heavy blood loss and terrible pain. I would recommend having the cyst removed. It’s your body and your decision but I feel happier knowing that my body is free of a large cyst that did cause symptoms, I could feel it all the time. The coil helps to stop periods so you don’t get and pain from endometriosis. Hope this helps you, good luck.
Thanks. Funny thinking back I’ve had a couple of episodes where I’ve had trouble peeing. Before I knew about the cyst. It passed quite quickly and I was on my period and I never thought much of it.
I had both ovaries and Fallopian tubes removed on the 1st April. I had a history of endometriosis and cysts. The last cyst was 8cm, and an endometrioma. As I’d just turned 50 the gynaecologist pretty much said I don’t need my ovaries anymore and best to remove them to prevent cancer and further cysts. I’m feeling good and no side effects. If you need any other info, just ask. Good luck, Sarah x
Thank you. It just seems so drastic going from querying heavy periods to having both ovaries out. I’m a bit frightened! I’m 47 and feel I’m approaching menopause anyway. Am worried they get in there and it’s worse than they thought!
I had a chocolate cyst. Unsure of size. If I remember 4.5cm without digging out my medical notes. Big enough to make me double over and totally ruin a week on the Amalia Coast several years ago. It was horrendous pain and if they “twist” I believe it’s quite dangerous. It was actually how I got diagnosed with endo at the JR hospital in Oxford. I had never heard of it, but that was many moons ago. I’m 50 now. I would say get it removed. It’s not such a big op and better out than in I say!
Thanks. That’s what I initially thought then got cold feet. I thought they remove the cyst and not the full ovaries. Apparently it can’t be done. My friend has had a ruptured ovary and says the pain is horrendous. Don’t fancy that!
I have a solo adnexal mass of 3.5cm on left ovary, already had hysterectomy but left ovaries in. I asked for ovaries to be removed but told we need them even after menopause. They are monitoring the mass every 6 months. It seems difficult to remove the cysts without damaging the ovaries I suppose. Difficult decisions to make all the time. Good luck with it all, let us know how you get on x
That’s interesting. The consultant seemed keen to just leave it in but I was a bit worried they would miss something and the risk of it becoming cancerous after menopause. I could ask about the option of having regular scans as an alternative.
I had a large (approx 5cm) cyst on each ovary. It was the way I found out I had endometriosis around 14 years ago. I had an ultra sound scan privately where they’d been picked up and a few days later ended up in A&E and sent for an emergency op to remove the cysts. I was in complete agony and couldn’t stand (otherwise I’d never have gone to A&E and haven’t since). After the op I saw a doctor through my private health and although I had several more ops over the years for the endometriosis the cysts didn’t come back. Cancer or removal of the ovaries was never mentioned. Back then I wouldn’t have wanted my ovaries removed or a hysterectomy even if it had been mentioned. Personally I would use your private health and get their opinion, using mine was the best decision (my first op under nhs wasn’t done properly and they lost all my notes from my op to cut a very long story short). I don’t know where I’d be now if I hadn’t gone down that route. If you feel you can manage that’s an option but I would still consider getting the cysts removed, if they rupture (rare don’t worry) that would be a problem. Same as the person above I had the coil and it changed my life. Talk it through but don’t be talked into anything you don’t want to do. I’m 49.
Thank you. I think I will wait on my biopsy and blood results and then approach my private cover to see if I can’t get a 2nd opinion. The gynae I have(my third one since cyst was found) said it’s too hard to remove the cyst without taking the ovary and tube and May as well just do the other one too to prevent further cysts.
Good luck with it all. Best to use private health if you can. It was such a help to me being able to call the doctor if I needed to instead of long wait times and uncertainty.
Thanks everyone. That’s helpful. Has anyone got experience of asking for notes from a c section? My husband was asked if we knew I had endo when I had my section 11 years ago. He of course had no clue. He think they might have mentioned a cyst at that point. I’m wondering if it might be in my notes.
I think I’m worried as after my c section I haemorrhaged and had to have a transfusion. I’m of sure why but worry something similar might happen again
I had multiple chocolate cysts on my ovaries, with the largest being 13cm on my left. I was 26 years old at the time so they did surgery to drain the cysts and excise whatever they could. I got the Mirena fitted a few months after that. Its now been 3 years post surgery and I have no period and no pain. There was a small cysts left after my surgery but it has disappeared on its own (they think that it was part of the 13cm cyst because it was hard for the surgeon to determine what was the cyst versus my ovary during surgery). If you think that surgery and complete removal of your ovaries is too much, I'd say try to manage your current symptoms in different ways! I made a big change to my diet and I think stress reduction played a big part as well. Good luck! ❣️
I was found to have an endometrioma/chocolate cyst on my left ovary 5 years ago. It was 3cm at that time. The gyn said I probably had some endometriosis but since it didn't bother me, just watch and wait, every year I had ultrasounds to monitor. Then last year, the cyst grew to 8cm and the dr was concerned that I might have ovarian cancer so suggested I get everything removed. That sounded pretty drastic to me so I got a few other opinions. During that time, I started getting really bad pain during my cycle on my right side. I found an endo specialist surgeon who suggested removing the cyst on left ovary and checking out the right side. When he went in, he found that I had severe endo, organs stuck together, etc. So he removed the cyst and part of my left ovary, tubes and the endo during the surgery. Due to breast cancer, I was not able to do any hormone/birth control after my surgery to keep the endo at bay. Now, 6 months after my surgery, I was just in emergency with severe pain on my right side. Ultrasound showed a 5cm endometrioma grew back on my right ovary already. I couldn't believe it grew back so quickly. And I wonder if I had the first cyst removed sooner, would the endo have not gotten so bad?
In terms of cancer, I know a few friends of friends who have had gyn cancers post menopause. I kind of assumed after menopause, things would kind of shut down there and less to worry about, apparently that's not the case. Not to say that you should have everything removed now, but something to consider as it does happen. As others suggested, maybe at least removing the cyst and having them remove any endo sooner would be a good move. Leaving the cyst and waiting might make the situation worse as it continues to grow when you cycle. Good luck with everything!
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