So my consultant has said I have chocolate cysts on both ovaries, what does this mean and can they just remove them or could I end up losing my ovaries??
Chocolate cyst: So my consultant has said I... - Endometriosis UK
Chocolate cyst
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Joannaf1990
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hi. Sorry to hear you have chocolate cysts. I have three that we know about. Is your consultant a general gyne or a Endo specialist?
have they been able to tell you the size of the cyst? I was told they are filled with old blood that gives them a chocolate colour hence the name chocolate cyst.
your question about ovaries will depend on how they are attached to it and if the cyst have caused a lot of damage they would only remove them if they had no other choice, they left my cyst in as they decided the bsge centre was more likely to save the ovary and tubes, there's still no guarantee but its worth a try. Do you get pain from them? Have they given you a idea of what they plan to do? Xx
I'm not sure think he is just general. He hasn't said just it's small apparently he could tell through the MRI. I've had a cyst on my ovary before when I was 13 and I was in agony which I am now but not in the same place as it was then. Apparently they are going to go in and remove what they can, im going to go to the doctors tomorrow and see if they can explain more. I've been tried like crap and left in the dark about a lot of it
Don't worry - there won't necessarily be damage if you have them removed. I had chocolate cysts show up on the ultrasound, which were confirmed to be endometriomas (~5-6cm on each ovary). They were removed 3 weeks ago via laparoscopy. My surgeon thinks I could get pregnant naturally soon - she was pretty thorough when talking about issues that came up during surgery, but damage to the ovaries was not one of them. Do insist on having experienced surgeons who know a thing or two about endometriosis and fertility - you're worth it xx
Thank you so much for your message! I've been left in the dark with a lot of stuff so I actually have no idea what is going on or what will happen! When they told me I was in shock so didn't ask too many questions as my op was meant to be done last September but they messed up and when I had my laparoscopy last June I didn't have any cysts
Hi Joanna I've had a large chocolate cyst (or endometrioma to give it it's official name 😳) in the past and had it removed by laparoscopy with no damage to my ovary. I think the important thing is to have a endo specialist do the surgery, I think a general gynaecologist won't always be enough. Lots of luck Hun xx
I'm going to go to the doctors tomorrow and have a chat with them and see what they can do. So horrible having this and reading everything but still not understanding or knowing what to do for the best xx
Hi
I think it depends what happens when they get in there. I only had an ultrasound but they said they couldn't see the ovary and the cyst was 7cm. Ended up losing the ovary and the tube.
They just don't know what to do for the best!! It's getting me down so much. That's awful for you, you just don't know what will happen when they do the op
You can check with your Dr but they have to do consent forms. You can specify what your wishes are. Mine were have a look at the right one but do not touch it as I wanted to have children. I consented to having the left one out if required.
Maybe you could specify not to take them out under any circumstances and rather close you up than risk the ovaries?
I try not to dwell over it but I wonder if it would have been removed under a bgse surgeon or someone more qualified than the bloke who did mine. I've subsequently found out this guy is no endo expert and he's made whopping mistakes with other patients.
My first consultant seemed to be like that like he wanted to use me as a test to see if he can do it! This one now has been great! I signed the consent forms before I knew I had cysts. We want a child and been trying for over a year and a half so I don't want to lose my chances but if I have to I have to
Hi, sorry to hear you have chocolate cysts. I had a 10cm dude all removed ovary intact, now have 3 x 3cm and 1x 7cm back. Awaiting appt to discuss options as i have bilateral bowel stuck to uterus, pod obliterated and trying for children with a blocked tube and kissing ovaries.
Chocolate cysts I believe automatically make you a stage 3 endo so you can ask for referral to a bsge center rathet than have a gen gynea. Good luck!
hi. How did you get on with doctors? Hope you got some more information. Try to push your gp for a referral to your nearest bsge centre they are very skilled and will give you the best chance of keeping your ovary. Xx
He didn't tell me anything I didn't already know, he didn't know anything about a bsge centre either, he said the consultant I have is the best the hospital has got and if I get pushed back with a date again he will look into it more and get me referred. So I'm still in limbo and extremely down xx
that's very frustrating but not a surprise my gp was gynecologist before being a gp and was useless! If you have some time google endometriosis specialist and find your nearest one, where do you live? It's a horrible disease I knew nothing about it, my diagnosis was out of the blue id had no symptoms and was thinking it was my appendicitis causing all the pain so we are on a learning curve to. Do you have support around you? Are you in pain all the time? Cx
I live in Norfolk and I think the closest one is norwich so about an hour from where I live. I have now got a date for the 10th April so just before my next period. I'm in pain all the time but mainly when I'm on. My fiancé is brilliant but gets so frustrated with the hospital as he can't do anything to help me. When I was 13 I had a cyst on my ovaries they thought that was appendicitis so you would think they would of picked it up then but never did. Xx
it's worth trying to get an appointment there if you can bear the drive I was told in September I had to have a hysterectomy by a general gynecologist, the specialist we saw at the bsge centre was amazing had no idea why we'd been told that. He said any surgery runs risk but it doesn't look as bad as we were lead to believe at our local hospital. Support helps and gives you a reason to find something that helps. What medication are you on? I find yoga helps with the back and hip pain and I'm rarely far from a hot water bottle. It's very frustrating for the people around you as everything takes so long and we had quite a scar, I was told the morning after it was a good job id spent years babysitting for a senior gastro surgeon at the hospital as my mum calling him to sort things saved me so we try not to let it get us to down but its hard, if you want a rant just shout! X
You're amazing thank you so much!!! I will ring them tomorrow and see if they can help and what they say. You just don't know where to start with this! It's not easy to understand at all!!! I'm on naproxen and something acid for heavy periods but I'm not heavy!! ???!! Also been taking diazepam now which just makes me feel better but not help the pain. I've tried cocodimal but that just makes me sick and a tens machine. My main pain is shoulder pain and like someone's pulling a weight from my vagina! (Sorry I know it's too much info!) xx
we've learnt it the hard way it's been quiet the roller-coaster ride so far! They will tell you how to get a referral and in our experience so far its worth it. Out of those I've only been on codimal made me dreadful sick to, the specialist changed to tramadol and ammityine and the sickness went with in a few days and the pain became more numb and other than the week of my period it's been managed as long as I don't overdo things. Have you tried the heat pads on your shoulder? It's probably one of the few symptoms I've not been blessed with. Not tmi totally get what you mean, I find it's worse before and during my cycle, have you noticed a pattern? I tea somewhere on my many internet searches about doing a pain long. Only started in January, use a dairy and note down pain level, location, generally how I'm feeling, amount of pain killers taken and other things like yoga and hot water bottles. The specialist said it was a good idea and shows if patterns are forming, in my case since trying the new meds and diet changes I can cope to get our daughter to school and do house things as long as I don't go at like a bull in a China shop but the moment my period arrives I have no energy and this month I've had a migraine thrown in so we have a detailed record.
I have a 5year old to persuade it's school time so I better dash! Xx
Yes I've tried heat pads and a tens machine on my shoulder too! I've got to see the bowel surgeon on the 4th so he can tell me the risks but I don't care what they are I'm having it done! I never had many symptoms it's just been recently, whether some of it is physiological because I know I'm having it done soon I don't know! I know when I'm coming on because about 3 days before I get shoulder pain then dam the pain is constant! I'm a hairdresser so that doesn't help on my feet all day and moving my shoulder. I used to do a lot of running and that helped but haven't done any for a while and no point starting again until my op is over. Hopefully this period will be the last one where I am in pain for a while! I hope the school run went ok! X
Hi sorry for not replying earlier my good spell went very wrong I was rushed to hospital by ambulance and I'm waiting to hopefully be transferred to the bsge centre next week. If the pain settles I might get home but it hasn't in the last three days!i
I didn't have any symptoms either till sept when the cyst ruptured but since has been hard work with it. It might be but you'll now your own body and how it feels so don't take doctors saying that to you. My first consultant said it's just like bad period pain and get on with, which if I could I would!!
I used to love running to I did 10k the day before I was in, in September but not ran since and I miss it.
Hope your appointment on the 4th goes well and you get some good advice.
The school run did go well thanks but I missed the Mother's Day asmbley yesterday which I was upset about but another parent has videoed some of it for me.
Good luck on the 4th xx
Oh no that's awful!! What's happening? I still don't know a time on the 4th but I have my op date for the 10th April so hopefully they don't cancel or I will have a nervous breakdown!!
So sorry you missed your Mother's Day meal that must be a horrible feeling!
Sending you lots of love xx
Hi. That's brilliant you have an op date, are they doing it keyhole? Is the 4th a pre op?
I don't know what there doing really the problem with our local hospital is I now know more about endometriosis than some of the people looking after me. They aren't controlling the pain well so I'm getting more used to which isn't ideal. I've got a problem with my bloods so we'll see where that goes today
She seemed delighted that nana was aloud to go instead. Some friends took her to the beach yesterday she had a ball.
Hope you get on ok, keep me updated how your doing.
Xx
Yes hopefully keyhole. No ive had my pre op the 4th is to see the bowel surgeon to explain the risks.
Ha isn't that typical it's always the way! They know nothing about endometriosis!
Oh that's good at least you have good friends and family around you!
Xx
Hi. How you feeling today? A lady here had keyhole yesterday she's going home today as it all went to plan she's walking better than me 😀. They give you every possible problem, we decided the risk just has to be taken and if I do end up with a problem we'll deal with it.
I'd recommend ear plugs if you stay over night!
I'm having more bloods today and they will take it from the results as to the next step, probably home as they can't do much here I'll just have to behave!
Everyone is fab she has a great time when I'm bad. She came in yesterday we did colouring and she didn't seem fazed 🙂.
Xx
Sorry for the very late reply!! I've been so busy at work! I saw the bowel surgeon it went very well so all set for Monday!!! How are you feeling? Xx
Hi hope you're ok, you all set for Monday? Are you having the bowel pre stuff?
I'm home with a ridiculous amount of pain relief and strict instructions not to put any pressure on my middle so no bending lifting etc which with a busy 5 year old is proving a challenge. Been chasing them at the bsge centre but no joy yet. My husband is on pins as the local hospital has told us likely to rupture again as it's grown so quickly.
Let me know how you get on, on Monday.
Take care and good luck . Xx
Yes all set getting very nervous! Yes got to take picolax Sunday not looking forward to that!! What have they said has happened?
I am unsure what clothes to take on Monday
Thank you so much!! Xxx
hi how you feeling today? They only suggestions for the nerves is you will hopefully be more comfortable in the long term so its worth it. I've got bowel prep for op so let me know how you find it as I'm concerned about it as the cysts are attached to my bowel and its very sensitive.
not got anywhere this week I've left messages every day! With it being half term they may be on holiday so I'll try again next week, if no luck our friends offered to step in that saved my bacon in September and ruffle some feathers apparently!! My large cyst has doubled in size in 3weeks and is bleeding into it's they think, I'm dreading my next cycle as it came on so quickly it was scary.
for clothes take comfortable knickers that wont rub your tummy, loose fitting pjs, and comfortable clothes I had loose t-shirts and some jogging bottoms mum got from Sainsbury's as my usual jeans and leggings were uncomfortable ( I did have both keyhole cuts and open surgery so I was particularly sore). Take a book as time can go slowly when your waiting. Take shower stuff, towel etc have they said how long they expect you to be in? With keyhole surgery you can get uncomfortable pain around your shoulder blades after surgery it's the gas they use and wears off after a day or two usually and you can feel like your full of wind to, peppermint tea is good to help with this. Take all the pain killers your offered I didn't after my c section but I did in September cos our friend said it would help in the long run and he was right.
hope you get on ok, I'll be thinking of you 😊. Xx
hi. Hoe did it go? Hope your not to sore and recovering ok. Xx
Sorry I haven't been in contact sooner I've been a bit spaced out! It all went to plan and everything went ok. But very sore and having a few bowel problems. They removed the chocolate cysts, unstuck my ovary from my bowel, removed endo from my bowel and in the dangerous area without problem and unstuck my womb, I was in surgery for 5.5 hours. Xx
I'm very pleased it all went to plan. Took me a good few weeks to loose the spaced out feeling just put your feet up and rest whilst your body recovers. Did you stay in hospital for long? Have they given you anything to help with the bowel issues? At my pre op they said it can be a few weeks before bladder and bowel settle. That's a long op your family must of been worried. Hope you get plenty of rest. Xx
Only one night but think I should of stayed in last night too. I've just come on my period as well so not feeling great! They have given me lactulose to soften and senikot. They were very worried bless them as no one was telling them anything. Xx
it must of been awful for them, had they not given you an idea of how long you would be? Hope you are resting at home, you'll get more peace than hospital. Have you got some time off work? How did you find the bowel prep? Hope your period isn't too painful and that you feel an improvement each day. Xx
They said it could take hours but never said roughly how long! I've got two weeks off work I didn't want to rush back. It work so quickly it wasn't too bad but now I'm eating I can't stop going to the toilet! At the minute I can't tell which is period pain or pain in general but I'm hurting when I go to the toilet even for a wee I'm not sure if that's normal xx
they have told us it'll be 6hours or more which will make it a long day for them waiting. Yes don't rush back you need to heal and anesthetic can really take it out of you. The surgeon said to us my bladder and bowel maybe affected for a while think he said about 2 weeks and it was normal. Do you have a follow up arranged? Xx
Have you got more news? Yes but not for three months xx
that's quite a long time before you see them again. Do you have medication if needed till then?
yesterday I called our friend at our local hospital as I was getting nowhere with the bsge centre, hey presto 10 minutes later the specialist secretary called me. He's on leave and due back Tu so hopefully we'll get some information next week and in the mean time if I get pain in to contact them ( well more pain than normal!!). Have you got some good books to read whilst you are recovering? Xx
hi. Hope you are feeling more comfortable today and enjoying the opportunity to relax. Xx
Sorry for not replying again! I was in a and e last night with the pain and I had an infection so now on more antibiotics! Feeling a bit better then I was! Nothing is ever easy and simple is it? Not having any medication as they think it's best for us to start really trying for a family xx
gosh that must of been scary, did they give you any pain relief? Hope the antibiotics start to work quickly. Keeping off the meds will help and ops can to so have fun with it!
I was expecting to hurt today but its not got me yet, we went to an Easter egg hunt this morning and it was nice to feel mostly ok for it.
keep resting. Xx
hi. Hope the antibiotics have kicked in and you are starting to feel more comfortable. Xx
They have and I feel much better thank you! Been the worst week of my life with my op and infection and finding out my partner is cheating lol xx
blimey did you have any idea?
I'm pleased the antibiotics are working and hope the operation helps with your pain.
I'm waiting for the next bad spell as its that time of the month again my dad was saying he's free all week if I need a lift to the hospital!
xx
No. No idea!! I'm feeling so much better this week still blood when I go to the toilet!
How are you feeling? What is your local hospital? X
How long have you been together?
Is that too be expected after the surgery? My parents are adamant that I'm going to have a week or two with them after mine but think we'll play it by ear as I might just want some peace!!
Has your pain improved or is it too early to say?
Our local hospital is Warrington and the consultant phoned me today to see how I was doing.
When are you back to work?
I'm trying to persuade an over tired puppy she needs a nap!!
Take care xx
Just over two years and our wedding is booked for next year!
I'm not sure but the bleeding has stopped now but today my belly feels very tender and I'm not sure after nearly two weeks if that's normal!! I am back at work Tuesday but only half days thank god!! Xx
hi. How you feeling today? I think with keyhole it can be painful for 3/4 weeks after and its the internal healing to that can make you tender.
I'm feeling surprisingly well ( so just waiting for it to all go wrong!!) my period doesn't seem to be arriving so I just hope its not horrendous when it does.
are you working it out with him?
hope work is ok, what do you do? I'm quite enjoying not working at the moment getting things done when I feel ok which have been on the to do list for years!!
hope your enjoying the nice weather 😊. Xx
hi. Hope your recovering well and feeling the benefits of the surgery 😊. Xx
Hey so sorry for the late reply been the worst month!! I'm recovering well had my first period which was fine until I used a tampon which made the pain horrendous!! I've been so heavy which I'm not normally! How are you? Xx
hi. Have you been ok being back to work? I can't use tampons anymore it just makes the pain worse and I also found my periods were heavy after my surgery in September so you aren't on your own. Not much further along with me I'm having daily chats with the specialist secretary's voice mail that she never respond's to! Meant to be going away in three weeks but my husband is worried about taking me! xx
Yes I've been fine at work which is good! So are you heavy all the time? I wondered if it would calm down! Great news about the tampons I hate wearing pads!!! It's taking such a long time for them to see to you xx
hi. Are you feeling like things are settling now? I wasn't before my surgery in September but now they are bad and can be 10 days long and this month I've spotted on and off all month just for good measure!! I hate using pads to but it just kicks off my pain even more!! They are driving me mad with it I'll end up back in a and e if they don't get on with it soon. Being distracted by organizing our daughters 6th birthday party at the moment, want it all sorted so hubby can be in charge if I'm ill.
Yes my period was pain free apart from when I used a tampon!! Yeah I was never heavy on only on for a few days at the minute it's heavy and over a week!! Oh bless you I bet!!! I hope you do feel fine for her birthday x
it's almost as if the surgery triggers the change, hopefully you will go back to normal next month. I used to think 5 days was a long one!! Hopefully all will be well for the party, she's very 😃! Xx
Hi. How are you doing? Hope you are feeling comfortable now has the surgery helped?
We've finally got somewhere, I'm going in on 31st may for the op, the day before our daughters birthday and two days before our hols!! Hey ho as long as it helps in the long run and reduces all the pills I have to take.
Good luck with staying pain free xxx
Hey so sorry I had replied to your last message but it obviously didn't post! I've been fine so far still haven't got my post op appointment!
That's great news! What are they planning on doing? Xx
Hi. That's great you're feeling ok have you called them to say you haven't had an appointment yet? They are removing the 4 cysts and doing something else to the endometriosis. The troublesome cyst is attached to my womb ovaries and bowel the MRI shows they need the bowel surgeon but they aren't sure exactly what they will do till they are in. He needs to free everything up as it's all stuck together. Dreading the bowel prep and pre load tomorrow 😱.
Hope your making the most of the bank holiday. Xx
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