Ovarian Cyst Surgery And Diagnosing Endometriosis

Hello my names Kat, I'm 30 and a single Mum of 3 wonderful children.

Since my last pregnancy (twins in 2011) my lady parts have been savaged. I've had month long periods with only a couple days dry in between before it starts again, clots, pains (terrible, terrible pains!) amongst other stuff.

During this time I've been back and forth to my GP, and consultant, trying various medications and contraceptives etc. I was scanned not long after having the twins and they found fibroids. Which they just left and monitored. Then my symptoms got worse in 2014/2015 and I was rescanned and my consultant at the time spoke to me about various surgery options but because I'm a single Mum with literally hardly any family or friends, surgery wasn't something I could choose so I had to carry on with medication and my symptoms.

Then we move to November 2016, I was rushed to hospital (I thought I was dying, it certainly felt like it), they then discovered I had an ovarian cyst on my left ovary, mor fibroids and also gall stones which they said was an accidental find, as all my pain and symptoms are womb area etc.

So after now having a new consultant, and daily chronic pain I decided I finally need to put my health first and get this sorted once and for all, and so my date for removal is on Tuesday, 7th March 2017.

So after more scans and an MRI, they now know it's an endometrioma and its approx 8x9cm. I'm due to have keyhole removal. I begged them to remove everything, as I can't cope with this pain (I'll talk about this in more detail in a moment) but she said there's a chance I may want more kids and the risks associated with a hysterectomy blah blah blah. But all I know is, since November I have no quality of life hardly!

She is also certain that I will officially get my diagnosis of endometriosis on Tuesday once I've been opened up. It's such a shame that this is the only way to confirm it.

Because they are removing the cyst they will be able to see any endo there won't they, and if they do, is this really when I will get my diagnosis of endometriosis and what stage it's at? I'm slightly worried I may not get my diagnosis on Tuesday as they'll be too busy removing the cyst. But if it's an endometrioma cyst then surely that means they already know I have it?

I'm in chronic pain, I rely on morphine sulphate, co-codamol, paracetamol and diclofenac suppository's to even stand some chance of getting through the day. I've lost 2 stone because I can't eat, everything I do eat, comes back up due to the pain. There are some days I can't even get out of bed and take the kids to school (please don't judge) so now my eldest (13) has turned into a young career and we receive support as a family, but her school attendance is 82% at the moment. The twins aren't so bad as their school often will come and pick them up and take them home again on my really bad days.

With regards to the pain, is it normal for an ovarian cyst to cause so much pain?

I get two episodes (my term for them) a day, normally it's during the night which lasts approx 5-7 hours!! It's exhausting, I am rolling round my bed trying to get comfy. Crying out and sometimes even roaring through the pain. I stand and I sit, pace the floor, get on all fours and sway my hips like I'm in labour. This is what I feels like every day but only there is I end to it where as if I was in labour, the baby would be born and I relax but there just is no end with this. If it's not excruciating pain, its pain where I can't stand up straight and I'm so dizzy that I have to lean onto something. I'm seriously considering asking my GP for a referral to Physio so I can get a walking aid, this is how bad it gets.

Please tell me this is normal? I'm not alone am i with these symptoms? There is probably more that I've missed but it's 3am and I'm in pain and wanting to try and get some advice before my surgery.

Other things I've tried for the pain is heated wheat bags, meditation videos on YouTube, and more recently a tens machine which I think helps a little even though I think it's more the fact is distracts me from the easier pains by making them tingle instead.

I'm so sorry this is so long, But if you're still reading this then, thank you!

How did your laparoscopic surgery go to remove your cyst? And quite possibly endo matter aswell.

Please tell me your experiences as I am absolutely pooping myself! I'm worried that I won't wake up and my kids will become orphans, or I'll still be in this agonising pain and it hasn't actually stopped the pain at all which is what I'm really relying on it to do!

Please be kind with your replies, I'm new so if I've posted in the wrong bit I'm sorry!

9 Replies

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  • Oh my gosh, you poor thing - that sounds horrendous the pain you deal with each day - a HUGE Well Done You for coping with a young family and getting through each day!!

    I am due a lap in April but no date yet, so cannot help you on that side of things.

    The morphine shows you have large pain - can you get pain patches? Would that help?

    There are ladies on here who have pain as bad as you and surgeries to remove endo, hopefully they will reply and give you the advice you need,

    I wish you HUGE HUGS and encouragement - you are doing so well through your pain and I am sure your lovely children love you to pieces.

    Best wishes

    xx

  • Thank you so much for taking the time to reply to me. My pain is awful, I know this sounds really bad but I class myself now as just existing not living, honestly none of my friends or family realise how much it hurts and how exhausted I am so I've joined this place to speak to other ladies who can relate. I will ask my GP about those Morphine patches, she wouldn't let me take the tablets as I'm on my own with the children and she didn't want me to get too dopey. Good luck for hopefully getting a date soon for your surgery! I've been in and out of hospital since November but they have always said we will just control your pain and send you home rather then doing my operation there and then :(

  • Hi, I'm sorry to hear you are in such horrendous pain and that you need an operation.

    As your scans show an endometrioma then that's most likely what it is.

    I went in for surgery yesterday also with an ovarian cyst which they thought was an endometrioma of about 10cm. They were able to remove it laparoscopically (keyhole). The consultant said it was all endometriosis which is reassuring that it's at least not a cancer. The consultant will write to me with the results from the lab known as the histology result.

    I had some pain relief but felt well enough to return home later the same day. I am a bit sore but I have been able to move around and get in and out of bed okay without help. I asked for anti-sickness in my anaesthetic so I felt well afterwards with some discomfort but sleepy.

    So not too bad really. Hope it goes well for you. Just make sure you ask the consultant for your staging then they should be able to provide it for you

    Everyone thinks about not waking up but it's very unlikely that would happen if you are fit and well for a routine procedure.

    So you will be fine xx

  • Hello, thanks for replying to my post and giving me a little info about your own experiences. It really does help a lot to know that I'm not alone. Because it really does feel like I am. How are you feeling now with having the surgery? I hope no complications have happened in the meantime? How are you with regards to lifting your arms and going on and off the toilet with regards to the pain? Does it hurt when you lay down for sleep? With regards to staging, do you mean when they come round afterwards, to ask what stage my endo is? I know this probably isn't how it works but how do you get a diagnosis? Do they write to you confirming 'Kat has a medical condition called Endometriosis' etc or is it just word of mouth? I always wondered how people get their official diagnosis and then what happens next. Is it now about controlling the pain as this is a life long condition now isn't it :( Thanks again for your reply. X

  • Hello, I feel a bit better today having passed my 2nd night now. I had some additional bowel cramps and discomfort prior to emptying my bowels but feel okay now I have been a bit.

    I'm feeling a bit less sore from the surgery today. I can feel my wounds feel bruised and sore but I don't feel that I have any internal period type pain at the moment, though I had some on the day of surgery. But it eased when the bleeding stopped that day. I'm fine to move around, my wound areas and abdominal muscles are sore to get up from lying down or sitting back on the sofa. Getting up from the toilet is okay. I can walk without it being painful, just more slowly. It doesn't feel sore when I'm not moving. Of course I cannot guarantee how you will feel but I hope that is reassuring.

    I had bladder endometriosis diagnosed previously under urology and for that diagnosis they sent me a letter. But gynae told me on the day it was endo, but they will send a letter to confirm once the results are back. They are used to seeing endo so will most likely be right. I would ask before your op for your staging.

    I think endo is lifelong but the menopause helps.

    Good luck with your operation, I hope all goes well and you feel better.

    X

  • Hello again. I'm pleased to hear that your recovery is going well. Still going good I hope? I've wrote down questions to ask so I shall just hand my doctor the paper and let her speak. Hopefully I'm not too doped up to remember to ask, but I assume I will get a follow up appointment and a letter anyway. I hope!! Thanks for the well wishes! One more sleep!

  • Hello, yes I'm fine thanks, still a bit uncomfortable but it's still not been long since the op so it's all still healing. But but finding it less sore to get up and down from bed or chair or to cough now.

    It's a good idea to write down your questions.

    Good luck again for tomorrow. Let me know how you get on.

    X

  • Just reading your post and what an amazing woman you are. I was In tears because you have coped so well. I have pain and some type of relapse, so can't walk properly or get to work which is frustrating, (only have it some times). I am missing a family birthday today, because of this.

    I just want to say I hope your surgery went well and you are recovering ok.

    take your time and be kind to yourself, talk as much as you need to.

    take care and thank you for your post.

    It is encouraging to hear other peoples stories and get support.

    I am very scared of surgery to.

  • Hello and thank you so much for your kind words.

    I still haven't had surgery, it got cancelled, there is a post explaining somewhere.

    People often tell me how strong and amazing I am but I really don't feel it.

    I'm still struggling every day.

    The thought of surgery is still terrifying for me also.

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