As I'm writing this I am shaking and have tears running down my face, I feel lost and alone. My mother passed away when I was fairly young which makes it difficult for me to talk about "women problems" this is why I joined this forum to share my story as a way for me to express.
It all began about 3 and a half weeks ago when I was taken to emergency in what was suspected appendix in which they removed but it ended up being a burst chocolate cyst with 100mls of free blood. One week later I had a pelvic ultrasound in which they found another cyst on my right ovary that is 36mm in size and yet to be diagnosed of what exactly it is.
I had some tests done and these were the results
S AFP is 2.4
S CEA is 1.9
S CA-125 is 34
I feel that those results seem fairly high for a 22 year old female..... what do you all think?
I'm also concerned as I have a little bit of extra skin surrounding my rectum area which I don't know what that is.... just found some blood in my stool also.
I'm so scared and I just need help, I don't know what to do anymore, I'm not myself and I can't be myself until I know my health is 100%. My next ultrasound is in 4-6 time to see if the cyst on my right ovary has grown or disappeared. I'm so scared and I can't focus on anything until I know what is happening with my body.... I don't want to be in hospital anymore, I want to be ok.
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Crystalee
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Hi, I'm sorry you are going through this and so scared
For your blood tests do you have the lab report? From my knowledge and tests all those numbers are within normal ranges
(S AFP normal at less than < 7.5
S CEA normal < 5.5
S CA 125 < 35 )
Also factor in that things like these tests can be raised for a number of reason the S CA 125 even lists that it can be raised due to endometriosis
You may find that you don't have another chocolate cyst since surgery but that it was there before. They will monitor it and take action if needed. A chocolate cyst is endometriosis and can recur, are you have any other appointment with a gyne to do anything? There are different treatment options
In terms of blood in your stool it can be from various reason especially after surgery and with any painkillers if you are constipated but if you are worried then see your GP, will be able to help with skin flap also
Try not to be scared although I know it's a scary time. Have you read any literature on endometriosis? I would I found it helpful and reassuring as are the people on this group
But please remember CA 125 can be raised by Endo which you have from your cyst and it's not raised it's normal some people have naturally higher level also that go above that and it doesn't mean anything
Is your GP good? Could you speak with them just for some reassurance
Google often does that unfortunately, skin flaps can equally be piles, polyps and piles can cause blood in the stool also, they are fairly common
I really would try and see someone today if you can or speak to someone just for your reassurance. But with standard follow up times and monitoring I don't think your dr is concerned at all about your chocolate cyst being anything more than that
If it helps, my CA125 was 119 and that was with stage 4 endo. My consultant told me that with cancer, it's high hundreds or even into the thousands, and ovarian cancer is incredibly rare in women your age.
Thank you for being reassuring that makes me feel some what better! So yours was 119 due to having stage 4 endo only?. Oh wow so ovarian cancer is really high digits then
This story seems quite similar to mine I was diagnosed with endo November last year when the same as you suspected appendicitis but when they got in there a cyst had ruptured and I had endo. They didn't remove the endo and within a month the cyst was back. I went to an endo specialist in march this year to have it removed and when he operated the cyst had doubled in size. He told me typically blood cysts don't go away on there own because every month the endo bleeds so they typically get bigger. If I was you I would push for surgery to remove the endometriosis. I also experience rectal bleeding but it was red blood so prob from haemorrhoids internal. If its old blood that's when you really need checked out. Try not to stress out xxx
Oh wow thank you for your advice, it hasn't been diagnosed as to what kind of cyst I have on my right ovary just of yet. Hopefully I will know in 7 weeks at most of what it is. Do you mean old blood like dark colour blood from the rectum?
Ye dark blood isn't great but ask to get checked at your next appointment you prob just have to provide a sample. I was worried because my left ovary was also stuck to my bowel that endo had eaten through my bowel and that's what was causing the blood but I was reassured because its fresh blood its prob nothing to worry about. They can normally tell from the scan if its a chocolate cyst or they did with mine anyway. Either way its a 4cm cyst if it hasn't gone itself request to have it removed x
The likelihood is that its another chocolate cyst if its the same ovary if they didn't remove the damaged tissue it will just come back like mine did x
Yep it's on the same ovary, in the lap I had where they removed my appendix they didn't remove the chocolate cyst that bursted they only cleaned 100mls of the free blood. So could it be the same chocolate cyst?
Not the same one. The reason you get chocolate cysts is you have endometriosis in or on your ovary so every month when you bleed it just stretches the ovary/causes a cyst. Mine was all localised to my left side the specialist removed the cyst and then passed an electric current into the area where the cyst was to essentially kill the cells. I haven't had another cyst since x
Oh wow that's interesting! This is all new and scary to me. If the cyst on my right ovary is still there in 4-6 weeks time then I need to have it removed so hopefully once it's removed if they have to then it won't ever come back again.
So glad to hear that you have not gotten another cyst since your operation, that's wonderful!!
The likelihood is it will still be there if not be bigger. Make sure you get a specialist to remove it. If they just move the cyst and not the cells it will just come back and endo gets worse over time x
Thank you for that, so you recommend a gynecologist to remove it or is it called an excision gynecologist? I do not want it to get worse over time and especially if I want children, there's nothing more I want then to be able to conceive. I really hope none of this interferes with my future.
What you want its a BSGE specialist. Its someone who specialises in endometriosis. And get sent to a BSGE centre aswell so you know its the best people for removing it x
Also try not to panic endo is really common a lot of people who have it aren't even aware as they don't get symptoms. The earlier its treated the better as It can affect fertility and I was in agony with it x
Prior to this cyst I wouldn't say I had many symptoms, I might of got a painful period every now and again but nothing a few painkillers couldn't fix! Thank you for all your advice and support also congratulations with falling pregnant that must be the best news ever!!!!
Its super scary got my scan tomorrow. I was 3 years trying 1 failed IVF then within 1 month of having my endo removed we conceived naturally so try not to worry about conceiving there are ways and means xx
Thank you, this is still all early days for me and have no idea where it is in my body. Lots of tests and waiting to come fingers crossed it's not too bad.
Of course it will be an exciting and terrifying experience for you and your partner but so rewarding xxx
The only way to really diagnose endo is through laparoscopy so the quicker you get to a specialist the better. It took me 6 years to be diagnosed and the NHS always push for hormone treatment first to try and slow it down. They would have seen it if it was bad or they should have called in a gyni to look while you were on the table as that's what happened with me x
See that's what I don't understand nor does the gyne, when I had the lap 3 and a half weeks ago why didn't they tell me if there was any endometriosis. There was no mention of it at all.
The gyne said to me maybe because there was to much blood.... they couldn't see it.
Or because there not experienced in that field and only removed my appendix they didn't know what endometriosis looks like.... all I was told was there a 100mls of free blood and a cyst that bursted
Mind you if it was just a normal cyst and when It burst your ovary may have ruptured and that may have caused the bleeding but im still betting on chocolate cyst because it would have been old blood no doubt not bright red. It really pissed me off when I woke up and they said u have endo and when I asked if they removed it they said no its mild! Mild my arse 3 years of trying and nada then the month after surgery im pregnant im pretty sure there just full of shit x
They would have seen that when they were in there if it had. One of my friends has polycystic ovaries and is bothered with large cysts bursting and causing a lot of internal bleeding and pain for her. But its not the same as endometriosis. I didn't start getting bad symptoms until I came off the pill because it must have been keeping it at bay. I got tested for all sorts and then they assumed it was IBS so I was started on meds for that which helped with the cramp feeling and I had to really watch what I eat. They said after my surgery it was a chocolate cyst that had burst because there was a lot of old blood that had been pooling in my abdomen over the months because it has no place to go. I'm sure your doctor or a specialist will get down to the root cause but if your not symptomatic all the time try not to worry stress isn't good for you x
Thank you for that, I'm trying my best not to stress as it is so bad for you but I honestly can't help it. I'm going to try me see a counselor or someone who can help me mentally. I will keep you updated, as I will like to continue to follow your story also so if my ovary ruptured they would of seen it in the surgery right? I've even been told I had PCOS then I was told I don't have it, I feel like no one knows exactly what is going on with me and just going in circles
A counsellor is good and they can give you coping mechanisms as well. I have relaxation apps on my phone for when I'm overwhelmed. Ye they need to decide what is wrong and diagnose you properly its horrible not knowing what's wrong but being fully aware something isn't right x
Ye its shit but endo/polycystic ovaries isn't life threatening so as much as its scary its not the end of the world and nowadays there are loads of ways to cope and loads of places for support/ treatment so honestly just take it one appointment at a time. Neither is curable its something we just have to live with and learn to cope with. Anytime you need to talk just give me a shout xx
I'm Scottish and its 14:35pm and I'm at work clearly not doing much work haha:-). Its good you can get support from people all over the world here. Try meditation apps for relaxation that's what I use its good for chilling out when you feel over the head. Night night x
Yes I love that parts of the world can get together and share their stories and experiences. Enjoy your day at work, thank you once again and we shall keep in touch xx
If you had a chocolate cyst then it means it's endo. I had a chocolate cyst and a water cyst, both common in endometriosis.Endo is a disease you can't cure. You have to live with it but it can be kept at bay with the right treatment. If you ever have any problems or doubts call your hospital's reception and ask them to put you trough to gynae. They should be able to give a number to your consultant, and if you need to see them before your next appointment they should be able to see you.
From now on you will need treatment, don't let them tell you to wait and see, every time you have your period endo gets worse, so waiting is the worst thing you could do.
I don't even know if I have endo for sure, the surgeons who did my operation for my first lap were not gynes and did the surgery to remove my appendix. I was told when my next period comes to take the pill levlen on the first day of my next period
Levlen is a combi pill. I was on one although it wasn't levlen but it didn't work for me. I would think they suspect endometriosis otherwise they wouldn't have told you to control your periods.
The way to deal with endo is to first remove cysts and adhesions either by surgery or other treatments and once that's done you need to control your periods, ideally stop your periods. Either with the pill or mirena coil which i have. I find mirena far better as it doesn't have any side effects. Most women don't bleed woth mirena, I haven't had a period for years and i am endo and pain free now.
Thank you, I had the option to stop my period when deciding what pill I wanted to try and I said I still wanted to have my period, I never really had much problems with my period prior to the burst cyst besides the odd painful one every now and again.
She told me to go on the pill up until the next ultrasound that is in 4-6 weeks to see weather the pill has caused the cyst to shrink or not
The problem is as you bleed every month the lining from the outside of the womb peels off and attaches itself to other organs or to an existing cyst causing build up. So if it's a chocolate cyst it will become bigger with every period if it's a water cyst then not necessarily. With endo cysts aren't the only problem, it can attach to bowels and other organs so going period free is really the best option.
Oh wow I was not aware of this at all!! It makes so much sense, thank you. So people with endo it is best to not have a period. What is a water cyst? Does having endo cause them?
A chocolate cyst is a build up of the tissue from the outside of the womb and a water cyst is one filled with fluid. Water cysts can form in anyone but chocolate cysts only in people with endo. I am not a professional but have been dealing with endo for 7 years and what i tell you is based on my own experience. If you don't bleed the lining won't shed and there won't be anything that could build a cyst or attach elsewhere.
Hi, i suffer from endometriosis. I had a chocolate cyst on my ovary and it disappeared after treatment. I remember my results were high when i had them done but it was due to endometriosis, it is quite common i think.
As to the blood if endo spread to the bowels that may cause the bleeding maybe? Not sure.
I know it all sounds scary, i was terrified when my results came back and i found out how extensive my endo was( bowels ,ovaries, womb etc). But as you go further you find out more and more about it all and it helps you deal with it. I hope you will feel better soon. It is important to keep talking to people about it to stay sane so talk to your gp or your consultant, they can refer you to a psychologist if you'd like that.
Hi, what treatment did you receive for your chocolate cyst on your ovary to disappear?
Yes it's so scary and I think I need help mentally as I am really not coping I know nobody likes to have anything wrong with them but when I know something is wrong with me it takes me to a very bad place and I honestly can't cope... I don't talk to anyone, I don't eat, I don't sleep, I need to find some help
Thank you I have heard of them before! Glad it worked for you xx
Dear chrystalee
Please don't be afraid. I have endometriosis. I have had 5-6 laparoscopies in the duration of 8-9 years. Last year when i had my bloods done my doctor thought i had bowel cancer as i was getting blood in my stools aswell and I mean lots of it. But when I went to see my gynae he said it's the endo that's causing all this and no I don't have cancer. Thank god i was also worried like you and even went as far as making a will. It's strange how we humans react. I have since had another laparoscopy and I feel a lot better and free from excruciatingly painful periods. My children used to suffer with my depression phases and mood swings too. But I'm really happy it's all better now. Please don't lose hope and we really do appreciate life more after little hardships. I pray you have good health and happiness xx
Oh wow, you have been under the knife a fair bit you poor thing wow that would of been such a scary time for you, I couldn't imagine. I'm scared just waiting for my next pelvic ultrasound in 6 weeks to determine what kind of cyst I have on my right ovary, praying it has disappeared! May I ask how old you are? So what stage is your endo and how are you dealing with it currently? Thank you for your kind wishes I send them right back to you also xxx
So did you have your children before you were diagnosed with endo? My biggest fear is not being able to have children, there's nothing I want more then to be able to conceive healthy children xx
I am with you!!! We are in the same boat it seems.
I'm 22 as well and I have 2 very big bilateral endometriomas/chocolate cysts. I had an ultrasound today to see if they've reduced in size after 3 months of Zoladex injections but it seems they have got even bigger.. Looking very pregnant at the moment and finding it hard to do simple things.
I know how you feel. The thought of not being able to conceive children breaks my heart too but we mustn't lose hope. It doesn't mean we'll never have kids! We are young and have so much ahead of us! Hell, even if we were older we still can have so much to look forward to in life. I too have felt like I wasn't myself when I found out I had endometriosis but you know what? Your mindset will dictate how you approach this whole thing. Be compassionate towards yourself. Something I feel a lot of us do is fall into a victim mentality (me included, it's hard not to sometimes) but it does not help one bit, it just makes you more upset. Although endo is so different for every person, it really is a journey of finding out what works for you to feel as good as you can.
Since you don't have many people offline you can talk to, use this group! I feel like I bother my friends/family/loved ones if I talk about it too much so this is a great safe space to get some support.
You will get through this my lovely! As will I. Feel free to message me anytime if you want to chat to someone who is going through pretty much an identical situation.
X
I had problems conceiving. It was after i had my second child that the doctor confirmed it was due to endo. My youngest is 13 and I have been trying every since. But it's different for every woman. Some don't have trouble conceiving with severe endo while some may have stage 1 and still find it hard. I hope and pray you don't have any difficulty. And please don't worry no point stressing over something that that hasn't been confirmed. Xx
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