Chocolate cysts and outcomes

[Bmco]

Hi all, I had and ultrasound 8 weeks ago with found a potential “chocolate cyst” measuring 4cm and englarged ovary (I guess because of the cyst). I’ve been experiencing pelvic pain / bowel pressure for the last week and had assumed a UTI but it’s not and dr thinks it’s the cyst. I have a repeat scan on Monday but just wondering whether people who have had a similar experience have ended up having them removed or other interventions, or whether they ever shrink for anyone? I’ve suffered from ovarian cysts since my teens but never had one like this seen so it’s all new (and to be honest scary). Thanks in advance.

[Chester28]

Hi Bmco,

So sorry you are currently go through this 😞. Hopefully by having further scans they may be able to find out what it is and you will get some answers, but advice is just keep pestering and pushing drs to get it seen to and if you have any further new symptoms. From what I heard or seen about cysts is I think it depends on the cysts, if it is a chocolate cyst and is linked to endo it is unlikely it will go away on its own, or if it’s a normal fluid like cyst they can go away on their own within a couple of months but if they don’t after a couple of months they will need surgery as well. Hopefully once you get your scans they will give you some answers 🙏❤️.

I will definitely say keep a diary log of your symptoms and if your symptoms are different from what you had before let your doctors know and just get pushed to be seen and don’t let them delay it.

Mine was getting pushed back all the time and sadly my cyst on my left ovary has got big and has caused kissing ovaries and gyno doctor confirmed mine was endo related. I was upset that my doctors and the other hospital I was referred to kept delaying everything as if they didn’t it wouldn’t of got this bad, but finally getting treatment etc now at a different hospital.

If you want a chat message me anytime xxx

[Bmco in reply to Chester28]

Thanks so much for this.

So far my drs have actually been great - sent me to a&e Thursday but they couldn’t have cared less and sent me home to have OTC painkillers (which as you will sadly know do nothing). I know they are really busy and I guess outwardly it wasn’t urgent but I do feel it was a little reckless to not even arrange a scan given the symptoms and my dr’s worry of twisting. But am very thankful the dr arranged a follow up scan for Monday!

I’m so sorry to hear your experience - how long did you have to wait to access the treatment you needed? Really glad you are finally getting the treatment and hope it’s helping you?

Thanks so much for the offer of messaging too - I may take you up on that and right back at you (although given I know nothing it would be purely emotional 😂😂). Take care x

[Chester28 in reply to Bmco]

No problem at all Bmco,

Aww I am so pleased that your doctor listened to you and has taken it seriously and getting you referred for more scans.

I went through a similar thing with a&e my pains got really bad back in last year September, had no idea what was happening, but all they said was you had bad menstrual cycle and here is some codeine! Didn’t put me through any scans at all. It was a lot of backwards and forwards with doctors and got a scan in December, found a cyst on my left ovary and referred me to endo clinic but waiting time was ages and was calling up for cancellations and told them that symptoms was getting a lot worse and wasn’t really helpful at all. I went to see family in London recently and was in so much pain that I went to a&e and they were so good here and that’s when I found out what was going on and my diagnosis and now decided to have treatment in London.

Aww thank you so much and yeah drop me a message anytime happy to be here and honestly don’t worry as I’ve been an emotional mess 🙈. It is such a hard thing to go through and I completely understand and just hope you get it sorted soon ❤️❤️

[Linley]

Understand totally Bmco, as I am not a clinician I can only relate my experiences. Due to confirmed Endo my chocolate cyst on my left ovary, along with Endo deposits were removed when I had my 1st Laparoscopy. I understand the pressure feeling on the bowel mine was worse at period time, again it eased after the Lap. Agree with Chester28 keep pushing the drs for further tests. Wish you good luck🤞

[Chester28 in reply to Linley]

Hi Linley, So sorry you went through this and hope that your 1st lap was successful and you are in no longer pain ❤️.

Yeah mine is the same with bowel and bladder during period.. it is horrible isn’t! ❤️❤️

[Linley in reply to Chester28]

Sure is Chester28 after 3 Laps and progesterone pills and the menopause my Endo years are behind me all I have now is scar tissue on the ascending colon and IBS. But those years did mar my life to some extent. Good thing is today there are more options available for us to decide the best treatment to have 😀

[Chester28 in reply to Linley]

Aww bless you so happy that your endo years have finally gone for you ❤️.

Yes that is very true we are very lucky that we have more options for treatment ❤️❤️

[Bmco in reply to Linley]

Thanks so much for responding - when I went to a&e I was trying to explain how it felt like period pain but also like something was going on with my bowel…they looked more confused than I felt 😂.Interesting on the lap and so glad it has helped you - I guess I should know more next week after the scan x

[Tillyfloss]

Hi. How is the pain today? From my experience with a chocolate cyst back in 2016/17 they do have to be at least drained if not removed as they contain old blood and you don’t want them to rupture ( this happened to me and I don’t recommend it). Mine was initially drained ( had refilled within 6 weeks) but the way it was attached meant I was referred to the bsge centre who did an amazing job and I have been pretty much pain free since 2017. Have you tried the endo diet? Xx

[Bmco in reply to Tillyfloss]

Hi, today it’s not so bad - just a dull ache and a bit of back passage pain. I’m hoping it’s calmed down a little but am also fearful of what could happen if left!I didn’t even know I had it until the other day (I knew I had a cyst but not the size or what type).

Great to hear you are pain free now and that they did a great job - and also that it has been since 2017!!

When I think about it properly, the right ovary has always had trouble - I have been sent to hosp with suspected appendicitis several times and had a ruptured cyst on that one just before I fell pregnant. I’ve been having random scans and told “it’s just a cyst” since I was 17! But no one ever mentioned this type of cyst before so I felt a bit lost.

Am going to look into endo diet - thanks.

I must say, I feel like this is yet another issue where people just put it down to being “womens troubles” and were just expected to deal with it.

Thankful for these forums!! Xx

[Endo_Jaded]

A chocolate cyst is indicative of stage 3-4 of endometriosis usually. However, they try not to use stages now and opt for a scoring using a system called enzian.

Has anyone mentioned endometriosis to you?

My chocolate cyst (endometrioma) was 7cm they generally don’t go away by themselves and allegedly they are painful if ruptured but my first incompetent surgeon said when he went in it was gone. But by 30 days later on an MRI i had a 3.3cm one growing.

They can account for an enlarged ovary, and mainly present on the left side. I now have hydrosplanix but with blood (enlarged Fallopian tube).

They have to monitor the endometrioma and should do a scan yearly if it’s under 4cm they tend not to care to much. They usually drain them during a laparoscopic surgery or laparotomy. Endometrioma’s can account for a lot of symptoms including pressing on nerves. But usually once and endometrioma is discovered endometriosis lesions and or adhesions etc. are also discovered. If it ruptured you’d likely be aware, but they should drain it especially if it grows. Some women are unfortunate and have theirs grow in extreme sizes before anyone helps.

I’m currently on Synarel to induce menopause to ‘pause’ the growth of Endo and cysts or at the very least apparently slow the growth. I personally won’t trust Lupron/Prostap given the legal challenges faced by them. But they have been effective for others. The contraceptive pill is also used, but I strongly advise against this as it masks symptoms and in my experience hides what you should know, to allow your body to be cared for rather than getting worse behind a door as such.

You don’t mention endometriosis or a laprascopy type surgery, hence my response, but if you already know these things apologies.

They won’t go in to drain cyst until it’s grown, or if they are in their diagnostically for endometriosis or removing it.

I am now having a total hysterectomy and bowel resection due to the delays in treatment, masking as opposed to surgical prevention and treatment and throwing pills at it were they can. I’m on two types of extreme pain relief, anti nausea meds, menopause drugs, bowel meds, and more now. I never want another person to face this if I can help it even a little.

Also, unless they do an ultrasound and they know if your uterus is fused to other areas do not be pressured into getting the coil. It’s a foreign object and as such the body try’s to expel it. Endometriosis will make this much more painful, but will also put you at higher risk of rupture or expulsion of coil. It’s pushed due to money and profits sadly.

I wish you well and hope I’ve been of help.

[eunha in reply to Endo_Jaded]

Just to add to Endo_Jaded's very helpful input, If you do end up having a lap for this cyst, make sure that's not the only thing they take care of. Insist that they check all over for endo. If it is a chocolate cyst, that means endometriosis on your ovary, so its possible its growing elsewhere too.

Just wouldn't want you to go through a procedure that you jumped through hoops for and waited and then for them not to be thorough 😘 Sadly it sounds like that happens often.

Hope all the best for you 💕

A quick question for Endo_Jaded, do you mind if I ask how long your treatment was delayed? I'm on the pill right now and haven't had a lap yet, I'm trying to schedule one soon. My symptoms were debilitating without the pill though. And I'm fairly certain my bowel is involved, just don't know to what degree yet. Do you have any advice on bowel endometriosis? Is surgery as soon as possible the best choice? Appreciate any feedback, thanks love 💕

[Endo_Jaded in reply to eunha]

I will PM you so as not to detract from OP query.

But to second what you said to OP it’s highly likely you have Endo elsewhere and Dr Andrew Cooks Endometriosis book will be a valuable read. Definitely fight!

[Cockapoo-2016]

Hi There.

I completely understand how scare you must be. Back in September 2021, I suffered serve lower abdominal pains and plevis pain, I cannot move off the floor I was in so much pain, I was rushed to A and E by my partner bc the operator refused to send an ambulance.

I had blood tests and a CT scan results came back I had enlarge cyst on my left ovary. I was referred urgently to a gynecologist to have a ultrasound scan I had a Cyst of 8cm that had twisted. At this stage the gynecologist didn't know what kind of cyst it was,my ca125 were sky high. I was asked about my periods, bowel movement, bladder etc.

So I was booked in for urgent surgery. I had a laparscorpy and I was diagnosed that I had endometriosis cyst attached to the left ovary, plevis wall and bowels that's why I was in so much pain when I had bowel movement and heavy periods.

Since my op I have been ok. Yes I was scared but I am glad I had it removed.

I wish you all the best and stay strong 💪❤.

[R2D2-]

Hi Bmco, I had a large chocolate cyst removed by lap last year. mine was 10cm by 11cm by 12cm

It was attached to my left ovary, pelvic side wall and ureter. The drs and surgeons thought it might be ovarian cancer. So it was all done quickly. Ultrasound, then CT scan then surgery. It turned out to be Endo and not cancer. So they removed the cyst, ovary and repaired my ureter. I still have some pain around my period, but it’s not too bad mostly.

If you have surgery I would recommend finding a hospital where there are Endo specialist surgeons. And make sure you have plenty of support, and can take as much time as you need off work. Just keep talking to your dr and see if they can refer you to see an Endo specialist.

The whole process was really scary for me because of the possibility of it being cancer. But regardless of circumstances don’t be afraid to ask for support through this. I knew nothing really about Endo until after the operation when I was told that it wasn’t cancer, but was Endo. This group has been helpful in finding out more about other peoples experiences etc. But Endo is a very individual experience from what I understand. So it will be different for everyone.

My very best wishes. You are welcome to message me if you want to talk more… x

[Marnsb]

Hi, I had bilateral chocolate cysts in 2019, left 5cm and right smaller. MRI ruled out cancer and was told stage 4 endo. First lap completed 2019, when in there they had to detach my ovary from bowel and remove lots of adhesions, they never know what is going on until they are in. Had my second lap last week, removed another chocolate cyst cyst, a luteal cyst and a burst cyst all from left ovary and again detached the ovary from bowel.

I paid to see the consultant privately and then he put me on his NHS wait list, had both laps done in 5 months. Cost around £130-150 but definitely worth it. I would definitely push to get it done asap, I hope it is just the cyst but as I said they don't know what else is going on until they're in there. Recovery is fine and such a relief when completed.

Take care and all the best.

[JOSANDY40]

Hi, Yes I've had a few. Mine had to be removed at 5cm they don't like them when they get that size. 1 though still comes back, last time I lost half the ovary with it. It hasn't grown in 5yrs.

Yes I feel for you with the pressure/pain these cysts bring. It's hard to cope but at least your being monitored. I felt so great when they were removed

Warmth and best wishes.

[Lina2]

Hello Bmco, yes I had a large chocolate cyst on my ovary a few years ago. I ended up in a&e and had to get my ovary and fallopian out as they could not be salvaged. My cyst was 10cm though so the risk of torsion was probably higher. My bowel movements were also affected and at times uncomfortable due to the cyst but after surgery this went back to normal.

I had gone to my gp months previous telling them something wasn’t right and that I felt a lump on my lower side. I was examined and they declared it to be IBS…the usual.

It sounds like your cyst has been caught much earlier than mine and if they have to operate hopefully they will be able to save your ovary etc. the pain from torsion is awful.

I have now also been diagnosed with a 10x11cm cyst (not chocolate but too large to leave) on my remaining ovary while waiting on IVF and I am facing surgery again. I am hoping they can operate quickly and save my ovary this time.

I’m not a dr but from what I’ve read online the risk of torsion increases with size. I think you can take some positives from an early diagnosis and that you are being monitored. The best outcome would be for it to go away on its own of course, I hope it all goes well for you!!

[catsrule40]

HiI had a chocolate cyst on my ovary that was first scanned at 5cm. Unfortunately i left mine for too long without surgery because i was so scared and the cyst got very big and stuck to other things including my bowel leading to much more major surgery. I think from experience and reading so much on endometriosis, they will try to remove rather than drain if they can. My cyst was drained initially and it filled up again within a few weeks.

Every case is different so don't want to scare you. I was told my endo was quite an extreme case.

I would advise what others have said here and push to see a good gynae as soon as possible. Get a private appointment if you can afford it - its worth it, especially at the moment with the long waiting lists.

Good luck

[Elsiegreeneyes]

Hi Bmco,

I'm so glad that you have asked this question as I'm going through something similar right now. Unfortunately, I don't have any answers for you but I do know that it is really scary, especially because it's a new thing going on with my body.

I've been considering trying to get an endo specialist to help me but I'm not sure how to get a hold of one. Whenever I asked my GP about a referral, they just pushed back and told me to continue going down the gynae route. However, I've been thinking lately that all of us women with endo should be seeing specialists about our conditions. I worry that the GPs and gynaes don't understand the condition well enough and therefore aren't treating us and our conditions as well as they could.

Looking into the ovarian cyst info online over the last few days, I've found that the advice is to try hormonal treatment before surgery. However, I guess it depends on what type of cyst it is, what size it is etc. This is where we have to trust the professionals to help us make the right decisions about what to do.

I hope that everything goes ok for you. Please keep us updated, it helps to see what others are going through.

Take care

❤️

[Bmco in reply to Elsiegreeneyes]

Just updated above - so sorry you are going through this too and it is really scary. It’s not talked about often enough and I totally agree - I think specialists are the way forward if an option. Take care x

[LoveandBall]

Hey darling sorry to hear this. I held off removing mine (which was only about 25mm in size) for years, as the advice was always that it can be managed with contraception and that it was too small to worry about. Well, currently I'm unable to conceive because it is stopping my follicles bursting each month and I am getting a private laparoscopy done to have it removed. Chocolate cysts cause infertility 100%. Push to have it removed, whenever you decide on starting a family at least.

[Bmco in reply to LoveandBall]

I’m really sorry to hear this - conceiving is hard enough as it is (this notion that it’s the most natural easy thing is very harmful) but to have this on top too. I wish you the best of luck and really hope things get sorted for you and that the Lap helps xx

[Bmco]

Hello all - thank you so much for everyone’s replies, it’s been amazing and helped me cope mentally whilst waiting for my scan.

The scan was yesterday and had a very surprising outcome.

It seems the initial thought that my cyst was an endometrioma was incorrect! They did a normal ultrasound and an internal and couldn’t find ANYTHING!!

So they now think it was actually a Hemorrhagic ovarian cyst and has ruptured. I can safely say everyone in the room wasn’t expecting to find nothing. I was also really surprised that having ruptured I have had the symptoms I’ve had - as when this happened in the past I was in absolute agony and couldn’t move. This time I have had the constant dull ache and bowel pressure but totally different. I guess for that I should be thankful.

Anyway - this forum has been amazing and has made me realise I really need to see a gynaecologist / specialist about the symptoms I have been having for several decades. Talking to you all has made me realise how this just gets dismissed far to often as a “woman’s issue” and “something we just have to deal with as a woman”. And that sucks and shouldn’t be the case - in my instance this time I may not have turned out to be life threatening but it’s definitely life altering and I shouldn’t be having to just deal with it - as who knows if I will be so lucky next time.

Thank you so much xx