Anyone had repeated Cysts with endometriosis?

Hi, I was wondering if anyone can help me. I have query endometriosis as I have A LOT of the syptoms. Right now I have a flare up of severe pain and on really strong painkillers. In middle of Jan this year I had a cyst on my right ovary and doc was gonna do op to remove it but it had burst before they got me to theatre. I then got out of hospital and on wed this wk been told I now have another Cyst on my right ovary again. I don't know whether its the cyst that causing me so much pain right now or not. Every time i go to hospital as pain is so severe I can't cope with it they just don't want to know and get rid of you as quick as you went in. Anyone able to shed any light if they keep getting cysts due to endo. Sorry if I have bored you with a big story lol

5 Replies

  • Hi I suffer with cysts with my endo - I have to say I find cysts very painful takes over the endo I am always sick when I have a bad one I have mine drained but they always re appear x

  • Hello. Yes, I have cysts too. I haven't had one that has burst, they tend to disappear on their own as they are the chocolate cysts that you have probably heard of. I can tell when I get them because before and after my period I bleed brown blood for a number of days and have stabbing pains usually on my right lower abdomen. My first hospital stay due to severity of pain was when I was 16. The docs said I had a cyst but they didn't think this was the cause of my pain so they put it down to grumbling appendix. I am now 38 and was only diagnosed with Endo after a laparoscopy 2 years ago. So after 22 years of pain and hospital visits, finally a doc said....' I wonder if you have endometriosis'. It astounds me that so many of us are dismissed so easily. I have learnt only very recently to push for what I want at the docs. I have learnt far more about my condition from sharing experiences online with fellow sufferers and doing my own research. It amazes me why they haven't booked you in for a laparoscopy to confirm Endo one way or the other. If I were you I would go to the doc and ask to be referred to an Endo specialist. Best of luck with it all. X x

  • Hi - I am the same and my story goes back to age of 18yrs( now 48) when I was rushed to hospital with collapse and severe pain.Was given morphine and scanned inside and out and found to have a 6cm cyst which they said had to come out.Surgery was arranged for next day,but bloods came back abnormal sothey wouoldnt operate.They gave me antibiotics and sent me home with codeine.I then experienced collapse the next day and back to hospital -cyst had burst.They just said the antibiotics would mop it up and that was it -back home still in agony.30 YRS later it seems I have follicular cysts-which are normal but in some ladies keep filling up,burst then the body reabsorbs them.As they are filled with fluid,and not generally puss or blood(chocolate cysts) they cause extreme pain but shouldn't cause infection when they burst.My cysts appear every time I am not on hormonal treatments( pill,progesterone) or GNRH agonists,so I dread every time I have to stop.Most recently had one in December,as well as kidney infection and adhesion pian.

    I so sympathise with you,As been through it so many times,as will many of us on here.Dont know what age you are,but insisist on seeing a proper endo specialist and on having a lap to investigate and treat at same time.It makes me so angry to read so many ladies are still experiencing poor treatment and disbelief of their symptoms.Early diagnosis and treatment is a must,especailly if you have pain.

    Do let us know how you get on.Take care.

  • HI,

    Sorry to hear about all your troubles. I have endo and have had about 6 burst cysts over the last 5 years which are about 5-8cm. Pain is really awful and I am hospitalised for about 3 days to a week each time. The cysts easily show up on an Ultrasound so the hospital should be able to work out if it is burst cysts causing your pain. I can usually feel when I have a cyst that hasn't burst it's a bit like being punched in the stomach, a sick feeling that sort of lingers and I can feel it there pressing all the time. It is not like period pain or endo pain which is constant, I find the cyst hurts when I knock it. Most of my pain comes from the endo though not the cyst unless it bursts. When it bursts I usually vomit a lot of blood and can't move at all without wanting to scream my head off. Endo pain for me is constant and feels more muscular if that helps?

    It is the endo causing the cysts. If you have a burst cyst and they don't remove it just drain it it will just re-fill again, that happened to me 3 times before they managed to operate and remove it before it burst. Unless I am on hormone treatment I get cysts coming back very quickly, usually a month after surgery. As I understand it nothing can stop cysts developing - they then either go away on their own or they keep growing and growing until they burst which leads to infection etc not to mention a whole load of pain.

    If you have serious pain it's probably the endo and the cysts are just adding to it. Since my last surgery in May I have not had any cysts but the pain is worse than ever and painkillers just don't help. The doctors haven't got a clue how to treat it or what to do, I have stopped going into hospital when it is that bad because they can't do anything to help, my main hospital stopped treatment because they said the pain "wasn't gynaecological" which is totally ridiculous, stage IV endo doesn't suddenly go away! So feel your pain!

    I find mefanamic acid and TENS machines help with the pain. Best of luck with the doctors xx

  • Thanks for all your replies. I am only 24 but can't go on any methods to stop my periods as I am trying to get pregnant (which is another problem) I Have seen infertility Nurse who said the best thing for them to so is a lap but I have to wait until I see the consultant before they can put me on the list:-( I just feel as this condition is not life threatening they don't care and just leave you in so much pain. My doctor has now gave me pethidine tablets for when the pain gets so bad. My cyst is now still at 6cm but has came back and grew so quick and always on my right side. I just don't know what els to do to try be pain free. x

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