Unfortunately this week for me started with a trip to A&E on Monday. I had experienced some severe pain in the early hours of Sunday morning despite not being on my period (vomitting, hot and cold sweats and I found it almost impossible to get myself up off the bathroom floor.) I had been diagnosed with a very large cyst on my right ovary at the the beginning of April and was very worried something had gone wrong as the pain i was feeling was mostly on my right side. After 8 hours in a&e and 6 lots of bloods and lots of proding and poking i was finally allowed to go home with some antibiotics and painkillers- the first time i have been offered pain relief more than ibroprofen in the nearly 2 years I've neen suffering. I was told to return on Tuesday for another round of bloods and a scan.
They still seem convinced my cyst is caused by endometrioma but described some parts as 'atypical' and 'complex' which has obviously caused me a bit of anxiety. I was already on the waiting list for surgery but he seemed to think I needed to be treated as a more urgent case. apparently my ovaries are now so damaged they touch and it looks like i will need at least a partial hysterectomy- a big shock at 32. the doctor mentioned they could give me some injections after surgery to help but i dont really know what sort of treatment that is in reference to.
After 2 stressful days in the hospital alone, I was a bit too stunned to ask any questions and wondered if anyone else had had a similar experience or advice? I've had to take a week off work and cancel some social plans this weekend, as i still feel too weak to do very much. So this has left me feeling a quite isolated and because of that my mental health has taken a big downturn this week. Feeling a bit hopeless at the moment, thanks for listening.
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Violentfemme
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When you say you were on the waiting list for surgery was this in a specialist endo centre?
Regarding this recent trip to A and E - when you went back for the scan and they talked of a partial hysterectomy and injections was it a doctor in A nad E saying this?
They took me through to the emergency gyno ward at that point as I had explained the situation to at least 3 a&e doctors. When I went back on the Tuesday it was to the same gyno ward. I don't think I have access to a specialist centre where I am but I have been under the care of my local hospital gyno department. Yes, I'm based on England.
Everyone has access to an endo centre. Endometriomas are almost always associated with rectovaginal endo and kissing ovaries (when they get pulled behind the uterus and join each other with adhesions) is a classic sign of this and what is called a frozen pelvis. This must only be treated in a specialist endo centre and they should have immediately said that they would refer you or asked your GP to. This is absolutely not surgery they can do in general gynaecology as it is complex. You now need a more advanced scan to 'map' your pelvis prior to surgery which would be done in the centre prior to surgery. Unfortunately there will be a long wait.
The injections they talked about are called GnRH agonists (aka the menopause injections) and these shouldn't be given after surgery for deep endo as there in little evidence that they will have any effect. Non-endo experts sometimes think they 'mop up' any endo left behind which is not true.
This is the NHS England specification for the treatment of severe endo that you need to take to your GP.
Hi wow this was very useful information ,I was told my ovaries are pushed into my uterus also have adenymosis.Im getting alot of pelvic pain ,bloating and flare ups in the morning of vomiting,they have advised me to take postap injections and all fails then surgery but if I refuse the postap would they give me the surgery ? X
I had a very large one which was 10cm by 13cm it made me very ill and stoped me in my tracks .
Go back to your doctors when get them to refer you to a endometriosis specialist as if you don’t they will do surgery then you will to have surgery again .
I’m currently on the waiting list again for urgent surgery as mine was done by a cancer specialist not a endo specialist.
I unfortunately lost my ovary .
Push for yourself and don’t let them fob you off .
Keep going to a and e hopefully might take you more serious.
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Is a cyst burst an emergency? 
hemorrhagic cyst? Does anyone suffer with these? 😔
Ovarian cyst and diverticular disease
Endo and cysts 
Ovarian Cyst
