endometrioma / chocolate cyst help

[MRBO]

hi there,

I am seeing advice and previous experiences on women who have suffered with large (4cm+) chocolate cysts on their ovaries and if anyone r was able to heal them naturally or if they went down the surgery route, what was your experience.. did it help and did it re- occur?

background: I have a very large (8cm) endometrioma on my left ovary with no scar tissue. I’ve had several ultrasounds over the past year to diagnose this and it has been growing steadily since last October when I had my first ultrasound (original ultrasound showed it to be 5cm).

I used to have severe endo symptoms such as nausea and debilitating pain and tiredness (you know what it’s like) and I managed to eliminate these symptoms naturally by completely cutting out alcohol and coffee from my diet. So overall, I no longer am in pain however I have noticed the pain of the cyst increasing, presumably as it grows, but it’s no where near as severe as the pain used to be previously.

As the cyst is growing relatively fast I am considering surgery to remove it however I am also interested in trying to reduce the size naturally if possible but as you know there is literally no research on this topic and so that is why I am looking for your help.

[AR2008]

Hi, I personally had mine removed surgically. Mine was 15cm by the time it was removed and having it took a real toll on my body. The only reason I know that is that I felt amazing when it was removed. So I can sort of agree that chocolate cysts can be pretty much painless for some people because I didn’t actually know I had one until it was 10cm X 11cm!! But as it continued to slowly grow it began to push on other areas like my stomach and bladder. In the end I couldn’t stand up for long, I felt fatigued all the time, I was needing the loo too regularly, I couldn’t finish a dinner portion that I could previously. And at 23/24 years old I knew that the cyst needed to go as I don’t ever think it would have stopped growing!!

In my case, I never consider natural remedies because I knew pretty instantly that it needed to be taken out in a surgery. But I’m interested to see others advice who have also had a cyst.

Hope you can keep up the pain free life!! xx

[MRBO in reply to AR2008]

Thank you so much for your response. How are you feeling now after surgery, do you mind me asking how long it’s been since you had it removed? And have you had no reoccurance? How did you find your surgeon too? I’m so nervous to go under the knife

[AR2008 in reply to MRBO]

Hi, so I had my surgery in January 2024. It’s weird to say but I woke up and felt like a new person. No pain, no tugging, no rushing to the loo. As far as I know, no reoccurrence but then again I was painless the first time it grew. But I have only just finished a 6 month course of Triptorelin which shut off all my hormones and then went straight on the contraceptive pill. So I am going to say no reoccurrence yet.

So my local hospital has an Endo specialist centre in it. So I went there. Are you currently under a gynae department that doesn’t have an Endo specialist then? You can go on this website- bsge.org.uk/centre/category... and see them all on there.

Hope this helps answer some of your questions! xx

[Stormtrooper4]

Hi. I have a 7cmx5cm endometrioma on my left ovary. I had no symptoms whatsoever at the point of diagnosis and only found out I had it because I have disc problems in my back and needed an up to date MRI which showed up the mass. This then triggered the 2 week referral during which time I had an internal and external ultrasound, a CT Scan and bloods. When I saw the Consultant he basically said if you are not concerned about protecting your fertility I would recommend a unilateral oopherectomy to remove the left ovary and left tube as if you just have it drained it can come back again.

This all happened end of April beginning of May. I decided there and then that I wanted it removing surgically. I had another internal and external ultrasound in August to check whether it had grown and thankfully it had stayed the same.

I have an appointment with the Consultant again in a couple of weeks and hopefully get a date for the surgery soon after.

I have to say since I was told I had this endometrioma I have had a few symptoms which I think I must have had all along but didn't really think much about it such as twinges in the left around the time of the month and just before and needing to wee more frequently. I have also had a lot of pain in the left side lower back and down the front of my thigh which I just though was my usual back problem but having done a bit of research this is also a symptom.

I just want the thing removing now so as to not give it change to get any bigger.

[MRBO in reply to Stormtrooper4]

Thanks for sharing your experience, I find it so helpful to hear from others in the same position. I have all the same symptoms that you do! Is there a reason the doctor recommended removing the ovary and not just removing or draining your chocolate cyst?

[Stormtrooper4 in reply to MRBO]

Basically if it is drained it can fill back up and I think it is just easier to remove the whole ovary and tube because the cyst will be stuck to the ovary.

I had never even heard of an Endometrioma or a Chocolate Cyst until I found out I had one.

[Bellebell]

similar experience to the others - I didn't know I had one (or had ever heard of one) until it was pretty large and was causing me physical problems and mobility issues. I prefer not to have surgery too but it got to the stage where I couldn't walk. While waiting to have the operation (during Covid), I went dairy-free (I don't drink alcohol and cutting down on caffeine (and removing gluten) made no difference to me) as it really helped with other endometriosis pain around and after my period but the problems caused by the physical nature of the cyst were still there. I felt much better after surgery, my quality of life improved immensely (it wasn't pressing on my bladder all the time anymore!) although I more recently developed a different cyst, which I had removed too, but which presented no issues to me and I've had all sorts of new endometriosis-related issues since both operations! I think it depends how much it affects your day-to-day life (activities, mental health), your physical health (my organs are glued together and were all squashed by this huge chocolate cyst) and whether there are any other risks to your health. I don't think there is anything wrong with taking your time to think about it and it's definitely a very personal and individual decision.

Edit: I was put on zoladex (forced menopause with its own problems!) for a year apparently to shrink the cyst before surgery. I'm not aware that it made any difference!

[Sunset-lady]

These are usually estrogen led so you need to lower your estrogen or improve the balance between progesterone and estrogen as you're likely estrogen dominant. I'm on zoladex which is another option but it's not natural. High vitamin D and K could help and look into Tay Peat's carrot salad designed to get estrogen out of the body. You would probably benefit from a DUTCH test too to see how estrogen operates in your body. Good luck x

[MRBO in reply to Sunset-lady]

Thank you so much that’s very helpful, yes I’ve heard of the Dutch test but it’s not available on the NHS and my doctor had never heard of it!!

[Sunset-lady in reply to MRBO]

Yeah you'd have to pay for it x it's about £120

[Sunset-lady]

Ray not Tay x