Can this pain really be caused by endometriosis plus a cyst?

[lotrtxt]

Hello!

I am 27 years old and have no children yet. In May 2019 my gyn discovered a cyst which has been monitored every 3 months. In February I had very bad pain at night, my gyn then said that the cyst is growing (around 4cm) and she thinks it is an endometrioma. Also my ca 125 level was quite high (125). I made an appointment with a specialist due 13th this month, but everything got cancelled because of CoVID-19. Also in February I had to go to the ER because of severe pain and she said my cyst ruptured. My cyst is still there though. Since then I have pressure and pelvic pain all the time no matter the cycle. I always had severe cramps an blood flow during my period and painful ovulation. I am not sure how long will I have to wait and I am so scared that it is gonna rupture again. My gyn just said to tak some painkillers. I am also scared of something more sinister like ovarian cancer. So I want to ask if anyone has or had similar symptoms prior to diagnosis.

[Linley]

Hi

I feel for you because I have been there. Yes my chocolate cyst caused me pressure and heavy and sometimes embarassing periods. The Lap. tided and cleared most of the Endo tissue, I found that the progesterone meds given afterwards helped me a lot. I am sorry that your op has been cxl bad timing for a lot of people and I have no experience of a high ca125 count on saying that you know your own body and if you feel something is not right I am sure your GP could refer you for urgent treatment, if all else falls can you afford to go private to ease your stress.

Keep safe and good luck x

[lotrtxt in reply to Linley]

Thank you for your answer. I currently have a low income job so I don't know if I can afford it right now. The pain is still bearable for now but when I went to ER last time, they just gave me IV and painkillers, did transvaginal US and sent me home. I hope the situation gets better so I can finally find out what exactly is wrong with me.

[girli1111]

Hello, I hope I can reassure you a bit. I experienced similar. I had a 10cm endometrioma and a ca125 of 275, I was referred for urgent oncology assessment but it was all clear, no cancer, apparently any pelvic inflammation may cause ca125 to rise. When my cyst was large I had continuous pressure, but I only had pain when it ruptured on two occasions. I should add that in the months preceding my ca125 test I also experienced a DVT and I had a nipple bleed which resulted in the finding of abnormal cells in breast ducts and urgent surgery for that, so I think that added to the need for urgent referral. I’m sure all will be well for you, but if you think you need an urgent oncology referral then push for it, even in these times, the stress is unbearable when you are imagining the worst, I went to a very dark place for a few weeks, so push if you need to, all the best x

[Yogaluv]

I'm sorry to hear you're in so much pain. I too was diagnosed with a 10cm endometrioma over a year ago. My ca125 levels remained elevated around 80 to 125 over this time. My gynaecologist wasn't too concerned as any inflammatory conditions such as endometriosis, fibroids or adenomyosis can elevate ca125. The normal range is below 35, I think. Having a level in your range is not normal but it is not at a level so high as to be worrying about cancer. In pre menopausal women this marker is also unreliable for predicting ovarian cancer. It is a great marker in post-menopausal women. Like you I was still worried though and had various tests which my gynae ordered such as MRI to rule out anything more sinister (which came back clear). I was monitored for a year, but the cyst remained and my ca125 levels didn't change. Eventually I had a laparoscopy 2 weeks ago for removal of cyst, ovary and tube - and await pathology on the cyst. They are convinced it's an endometrioma.

I would remain calm, but vigilant. You are your own advocate in all this so I agree push for anything you want investigated for. My gynae was very sympathetic and helped me alot. Fortunately I'm older and have had 1 child, so not too worrying about fertility but if I were you I'd ask more questions and alternative treatment options to try and reduce the cyst and maybe the associated pain. Good luck. My heart goes out to you.

[restlessstoz]

My daughter was diagnosed with an 8cm endometrioma following a hysterectomy in August. Cyst appeared in mid January following an ultrasound after excruciating pain. It turns out that the cyst probably wasn't causing the pain but ovarian torsion- twisting of the ovary, possibly due to the weight of the cyst. This condition causes symptoms similar to kidney stones, waves of pain, flank pain, nausea, vomiting... this wasn't picked up at the time and now we know that her ovary has died and are waiting for surgery to remove it and the cyst. It was cancelled last Thursday. I don't want to frighten you but simply to suggest you get checked if it becomes more painful. Ovarian torsion is a medical emergency... one that wasn't picked up in my daughters case and now she's at risk of peritonitis... with a dead organ in her belly! It's not common and three doctors missed it when my daughter presented with symptoms. The ovary can twist and then untwist, so can be missed. Just be aware of the possibility.

[lotrtxt in reply to restlessstoz]

They suspected torsion when i went to the ER last time and they checked for it but the ovary is still healthy. My cyst is not yet over 5 cm, so they suspect that the pain is not only because of the cyst but probably due to endometriosis in pelvis. I am quite mad at my gyn because I always told her about my extremely painful periods and she just said take some pills and push through although the pain is severe enough to stay in bed for first two days and literally scream through the pain with quite strong painkillers.

[restlessstoz in reply to lotrtxt]

Glad you know about it and have it on your radar. If it's been looked into that's great. We knew nothing about it and now we're in this mess! Good luck with it all and keep strong. This is an awful disease but at least you have a wonderful support network to call on here.

[lotrtxt in reply to restlessstoz]

Thank you for your support! I am also really glad that I found this community

[lotrtxt]

Thank you all for your insights, advices and words of encouragement. Your words made my anxiety a little better and it is reassuring to know that ca 125 can be elevated due to other conditions than cancer. Thank you again!

[Purplewitch18]

I had intense pain and nausea with a cyst, it totally wiped me out! Drinking a shot of apple cider vinegar with warm water 3 times a day will help to disperse the cyst. I took paramol for the pain too x