I am just looking for someone to chat to really I have had awful pain for over a year and have always just put it down to being a woman and the time of the month I also suffer with fatigue. The past 3 months each period has gotten progressively worse to where I have wanted to faint/be sick etc with the pain and last month had to go to a&e as I couldn’t walk with the pain.
Fast forward a couple of weeks and I had an internal scan were I was told I have x2 chocolate cysts on my left ovary and that I will be on the wait list to have the removed. I am lucky enough to have private medical through work and went to see a private consultant yesterday who basically said I should go on the pill or coil and he wants to just monitor me over the next few months (he was also really rude cut me off and basically was looking at me like I was being a wimp!)
I feel really frustrated as I had in my head that I was getting them removed and it would help relive my pain.
Just hoping anyone can share some advice at all?
thank you!
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Emc1992
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That doesn't sound stupid, I too have only recently found out what it was! If you have private insurance it might be worth looking on the BSGE website for all accredited centres to see if there is one near you maybe?
He did a ca 125 test and other bloods and then has booked me in for an internal scan but not until January…which I just thought why not do it now instead of waiting another 2 months
I just feel very confused and also dreading the next time I come on!
From the experience I have had you need to find out and ask as much info as possible, has the consultant explained stages of endometriosis to you and what endometriomas are?
honestly no I don’t feel like anyone has explained anything in depth with me at all - I have my notes from the scan etc so I have tried to do some research myself but I am left feeling confused as you said!
Endometriomas suggest deep infiltrating endometriosis, so please you should really only be seen in a BSGE centre. Personally, I would see someone else as for whatever reason this private specialist just hasn't worked out for you. Try and do your research on the BSGE centres near you and then look up the named doctors before deciding who to go & see
Hello, it sounds as though you’ve had exactly the same symptoms as me. Turns out i also had 2 chocolate cysts on my left ovary. I also went through works private healthcare.
I saw a consultant within 2 weeks of phoning for an appt and then a scan a week later. The scan confirmed that I had large cysts and so the consultant diagnosed me with endo straight from this. She gave me options of either going on the pill, having the coil or having them removed. I’m not on any contraception and haven’t been for about 9 years so I chose surgery. She was also pushing for surgery as she wanted to see if I had any more damage/tissue elsewhere (something they can’t see on a scan). So I had surgery 6 weeks after my initial consultation. I’m 2 months post op now so its a little too early to tell if it’s made a difference to my pain/symptoms yet. My first period post op was horrendous (i was warned) and the second wasn’t too bad but still painful. Im not convinced that the pain will go away if I’m honest but at least im getting somewhere.
It sounds like you’ve not had the most positive experience to be fair and might be worth getting a second opinion. My consultant really took the time to listen and explain everything so clearly and that in my opinion is how it should be. I also chose my consultant after reading her bio on the hospital website and saw she was an endo specialist. I noticed a lot of gynae’s say this but then reading some o the other’s bio’s it was clear that endo was not their main focus. Might be worth having a look.
they are probably suggesting that as the waiting list for surgery is months on end. Over the years I have constantly had ovarian cysts which has caused agony. I am on the pill and the coil but it has made no difference with me getting ovarian cysts which- I’m on both to try and stop me getting the cysts but they keep coming back. You will most likely still need surgery to remove them if they are causing u a lot of pain. I’m on the waiting list and will have surgery around April ish time but I’m trying to lose weight in the mean time so I can hopefully freeze my eggs and I am also planning to start early menopause as the pain medication isn’t helping at all, I’m only 25… I currently have several cysts on my ovary and my ligament is enlarged which might be a sign of endo. It’s all confusing but I’m here if u ever want to talk, I’ve also had chocolate cysts before, I’ve lost count how many times I’ve had these ovarian cysts xxx
Hi! so sorry you had a bad experience! I am a co-admin of an instagram page for women like us who need support, advice etc if you would like to follow us and chat to a network of girls in similar situations xx
Definitely try and get an appointment with another specialist! both my specialists recommended surgery straight away without any scans, I was lucky! Just check first if your health insurance will cover it! And make sure they do excision surgery not ablation!
Hi, I’m so sorry you’ve had such a bad experience with it. I was in exactly the same position as you. Last year I was diagnosed with two endometriomas on my left ovary. They suggested surgery to remove them and to also have the coil fitted.
During surgery they discovered that my ovary was actually stuck to my uterus. But after surgery and having the coil my symptoms improved drastically, I was hardly bleeding and pains were limited.
This lasted for about 8 months and then the pains started to return. The endometrioma has returned on my left ovary so I’ve been put on deinogest which is basically a strong form of progesterone. I have since stopped bleeding completely and pain is still reduced.
I would say you need to push to get surgery as it was very beneficial for me and as for the coil it has also worked wonders so I would definitely recommend that too!
Again i really am sorry that you had a nasty appointment, I really hope that you can be seen by someone more understanding. And just know that you’re not alone, I completely understand your pain and how frustrating it can be to be dismissed.
you want them removed by an endometriosis specialist! Endometriomas are a sign of deep endometriosis, so they want to make sure they remove those along with any other endometriosis found, if not, they’ll come back right away! Find a better doctor that’ll listen to you. Meantime, follow an anti inflammatory diet and take vitex berry to help relieve the pain until you have surgery. Do not take birth control before surgery! It’ll hide the endometriosis lesions, and you want them fully visible for surgery so they can be removed
Take time to navigate it on your better days . @rebeccamallick is worth looking up - an endo surgeon in Brighton with great information feed . Then invest in a copy of Katie Edmond's Heal Endo ( she also has a good feed on Insta of the same title)
You don’t say the size of these cysts. If they are bigger than 5cm then probably an operation is required. However, there is research showing that NAC (a food supplement) can reduce the size of these cysts. If you see a good nutritional therapist like Dian Shepperson who has specialised in endometriosis she can advise you on what to take and what foods may be upsetting your body biochemistry. She wrote the book “Endometriosis: a key to healing and fertility through nutrition” endometriosis.co.uk
Just call your insurance and say you want to see another Dr as you were not happy with that one. I have dealt with chocolate cysts and if one leaks or ruptures the pain is horrible. Try to review if in your area there is an endometriosis specialist and ask your insurance that you want to see that specific one. From my experience you need them removed and then go on the pill or coil to stop them growing again (I had them removed years ago and last year got them again as I was off any hormone treatment) just had them removed last month again and had the coil Inserted at the time of surgery.
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Ovarian cysts
6 months after surgery and still in pain ): ...
Chocolate cysts
Was I lied to? 
