Endometriosis UK
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Worried and feeling awful :(

This is my first post but have done a fair bit of reading of all your all posts recently whilst researching my symptoms and trying to calm my worries. You have all been very informative and helpful ;)

I have been suffering for about a year with abdominal pain and bloating that comes and goes and have always put it down to my bowels as I have suffered badly from ulcerative colitis in the past and my bowels are dodgy to say the least. At the start of the summer, the pain and bloating became unbearable and I developed other symptoms such as horrendous pelvic and thigh pain, sciatica and constant headaches and dizziness. My GP was away so I saw a brilliant female locum who immediately ordered bloods and sent off for a pelvic ultrasound. My CA125 levels were normal and so was everything else which was reassuring but I then proceeded to have the worst period ever whilst on holiday in Mexico. I literally couldn't move for two days and the dragging feeling in my legs and pelvis was vile - super strong co-codamols got me through.

I returned home to my scan which found a 10cm cyst on my right ovary which shocked me as I was expecting my 'lady bits' to be fine as I thought it was all to do with my big bad bowels. I then saw a gynae who did an awfully uncomfortable internal, reviewed my scan notes and said he is convinced it's endometriosis and my cyst is an endometrioma. I left with mixed emotions as there was a possible solution but also numerous other complications. I am awaiting a lap appointment to confirm the diagnosis and resolve the cyst issue but my period arrived yesterday and I'm in agony.

The dragging pains in my pelvis and legs started a few days ago, my tummy is so bloated I look in the early stages of pregnancy and the stabbing pains I get in my bottom when I pass wind or go to the loo are horrible. However, this morning my cyst is visible as a large hard swelling on my lower abdomen. Is this normal? Has it grown significantly in the month since my scan? Could it rupture? I've been feeling shocking for months now and am fed up but things seem to be getting progressively worse and quite rapidly :( Am dreading where I will be by the time I get an appointment through for the laparoscopy.......

2 Replies

Poor you, sadly yes they can grow rapidly and yes they can rupture and also just spring a slow leak, either way very painful indeed.

Please speak to your GP about getting suitably strong pain killers.

the usual one to try 1st in Naproxen or perhaps Diclofenac (Voltarol but at a much stronger dose than the over the counter version). Both can make you drowsy and sleepy but if you don't let the pain releif run out and top up (it is okay to mix these two with paracetamol and nurofen too) then you ought to be able to get a decent nights sleep and keep the edge off the pain to a greater extent.

It may get to the stage that you need something even stronger - the opiate based painkillers - Tramadol etc .But will only need these for the wait till surgery.

Your cyst size is certainly operable and yes you will notice it through the skin. Try not to press too hard for fear of causing the balloon to burst. It might be tough as old boots and keep growing, it may have fragile parts that are on the verge of springing a leak or exploding so act with caution.

I would advise taking a cellphone everywhere with you from now on..because if it does burst - the pain is paralysing and you need 999 and an ambulance to get you to A&E asap for pain relief. It is top of the pain scale, and can happen so suddenly - without any warning- even when you are calmly watching telly or asleep in bed or on the loo or in the bath.

do not lock bathroom doors just in case you need rescuing.

I'm on my 5th one. the largest was 8cm at scan before surgery a couple of months later.

The cysts pushed my belly button to one side. It did return to the middle after the op to remove a 6cm and an 8cm cyst on on each ovary. I've had two burst one of them refilled and continued to leak and was very painful all the time - nothing quite on the scale of pain felt when they burst but a 5 or 6 on the pain scale out of 10, instead of the 10/10 of a bust one.

Some of these cysts can grow absolutely huge without bursting. Just that with this being your 1st having a phone with you could be the best bit of advice in the event it does pop. You sure will not be able to walk or crawl to a phone.

While you probably do have endo, most of the discomfort you are feeling is down to the cyst and having it whipped out will make a huge difference on its own.

Unfortunately a normal CA125 result doesn't work in your favour - a high result will have had you fast tracked for surgery and jumping queues, but a normal result means you are at the mercy of the normal surgery waiting lists. Though if you are in a great deal of pain and it is still growing rapidly then you will be given a more urgent appointment than some other ladies will get.

Make sure you are getting the support you need from your GP at this time for pain.

Once the surgery is over and you have recovered from surgery pains -you'll be feeling a lot better, and then decide what steps you want to take to reduce or stop periods after wards and deal with the endo side of things. If you are still having periods - the longest lasting of the period stoppers and lowest dose of hormones is mirena coil, getting it put in is the most unfomfy/painful aspect so if you want to get that put in while having the cyst op, jump at the opportunity to have one put in at this time, also a great chance to have a smear test done if you find those painful. You won't be aware of either procedure being done. I got the mirena put in at my cyst op and it has been a life changer to no longer have periods and period pains every month.

main priority now is to take care of your self and your alien and don't over exert yourself or do anything too strenuous that might cause it to pop.

Speak to the gynae surgeons secretary to let them know that you are willing to stand by for a short notice operation - even if they don't do anything on the endo at this stage - just removing the cyst will benefit you a great deal.

Very best of luck with getting a speedy op.


Thank you so much for your reply and for confirming my concerns and worries were real and for some fab advice. The lump on my tummy seems to be growing as the day goes on and my period becomes heavier. Am lying on the sofa with a hot water bottle and some ibuprofen trying to get my game face on for when my teens return home form school. My daughters are anxious at the best of times and worrying about me is the last thing they need so need to act normal for a few hours until I can collapse back in a heap on the sofa again.

I was crippled by anxiety at the start of the summer as had convinced myself I had ovarian cancer and while the gynaecologist has reassured me everything seems ok on that front, I can't help panic still while I have something abnormal growing rapidly inside me especially as it's causing so much pain and making me feel generally so unwell. Am also worried that when they look inside it's going to be a right mess as am having so many tummy and bowel problems too :( my youngest has just started secondary school and this was supposed to be the start of a new chapter in my life - finding some new challenges just for myself........didn't think overcoming a load of health problems would be the first challenge on my list.


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