Endometrioma removal due on 7th March - absolutely petrified - please help!

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!

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  • I don't have pain anywhere as severe as you do can't really advise. I wanted to wish you luck though. Try to stay positive about the op and see it as a way of regaining some sort of quality of life back. Good luck x

  • Thank you so much for wishing me luck. Trying to be a little positive but I'm such a worrier that it's really hard x

  • Oh sweetheart it sounds as though you're having an awful time! I'm sure lots of ladies will respond. In the meantime here's a few thoughts that sprung to mind as I read your post...I was absolutely convinced that I wouldn't wake up after being put to sleep or that I'd wake up during surgery. I was that frightened that I started telling my family what to do in the event of my death!? What reassured me was the anaesthetist- apparently these fears are actually quite common & he explained how this was virtually impossible. He talked me through EVERYTHING and I felt very safe, you can also have medication to relax you before you get taken to the anaesthetic room. He will see you in the morning of the procedure so don't feel silly about talking through your fears, it really helps. From a pain perspective I'm getting over excision and although my endo is different to yours, the post surgical pain is very mild compared to pre-surgery. Sounds as though your situation is nearly intolerable at present so I think you'll be pleasantly surprised after surgery. What about your gall stones? They can be horrific. On a positive note you should be really really proud of yourself to have the courage to do something about this...you sound very strong to have kept functioning for your children through all this. Hop on here for support- like me there's probably lots of ladies convalescing after surgery with lots of time on their hands lol 😊. I'm sorry I can't answer all of your questions but I can relate...I have a 14 year old son and sometimes the pain is so bad that I cannot get out of bed to get him to school. His attendance isn't great either but it doesn't mean I'm a bad parent, try not to let what others think make you feel worse. Some people are too quick to judge. It sounds like you're a great mum- it can't be easy having three children and being a single mum. I bloody applaud you as not many people could do what you're doing xxxx

  • Hello, thanks for taking the time to reply to me, it means an awful lot! I am convinced that I won't wake up and I will leave behind my 3 beautiful children, I think when you're feeling so low and vulnerable you always worry about your biggest fear becoming reality. It's going to be so hard taking them to school on Tuesday knowing I'm then going to have surgery and... *tears are rolling down my cheeks* sorry. I can't help it. I just want fixing so I can be the Mum they remember! The gall stones were an accidental find and because all my pain is located lower left womb area they don't at present think my stones are causing me any trouble so I haven't asked about them yet, I just want my womb fixing. I do have to have a endoscopy at the end of the month though because of me constantly being sick they're worried I may be suffering from some type of acid reflux or something but at the moment my main issue is my cyst and possible endo. Thank you so much for all your kind words. X

  • Hi, I have had endo removed through laporoscopy and I am about to have another.The pain of a cyst can be excruciating. Try not to worry too much. The discomfort I had after surgery was nothing compared to the endo pain I was used to. I felt bloated, sore and I had some gas pain but recovery was relatively quick and I didt regret it I am about to have my ovaries removed and I am actually looking forward to the surgery!

  • Hello and thanks for replying. Yes I'm hoping that the after pain won't be anywhere near as bad as the before pain, but I also know my luck, and how much it lacks so I'm being a pessimist until I can come back here and say, you were all right! I would be looking forward to that too! Have they said wether it's a long recovery or is it just Day case too? I wish you good luck for when the time comes! X

  • Staying over one night I think x

  • Hello hun i am going through the same as you at the minute on pain relief and awaiting surgery for cysts my 4th major surgery at 34 with no babies for me yet ive been off work since last october and have also had constant bleeding with maybe 2 days off in between you arent alone promise xx

  • Hello and thanks for replying, it means a lot! Oh how awful that we are all suffering like this. I must say Endo and related stuff doesn't get nearly as much help and press coverage as it should! None of my friends knew what the hell I was talking about, I'm sure they think I'm just over exaggerating period pains! The constant bleeding is awful. I have to take a towel everywhere I sit. I wear 2 pads to get the length. I always wear black leggings and tops to cover my bum. The constant gush of flooding or coughing out clots is horrendous. It's awful, how do we cope? I always tell myself it's because we have too! X

  • I first of all wanted to say please post on here often for support and please don't feel you'll be judged here regarding your kids. It sounds like you're doing an incredible job despite being debilitated. People who haven't experienced Endo at its worst basically haven't got a clue. When it's bad you can have all the willpower in the world, it's still not going to be physically possibly for me to walk upright and get to the bathroom/kitchen. It's impossible for people to understand.

    I've had intense pain from endometrioma cysts but for me at least it's right at the ovary where they are. I have however got Endo widespread which utterly debilitates me. At its worst it's exactly how you're describing so I'm wondering if they'll find it at many sites during your surgery.

    I'm in pain right now so not thinking straight but I'll post again in a while with little tips that have helped me manage the pain. Unfortunately it does sound like you're doing most of them. In the meantime, I just wanted to send you hugs and support. Xx

  • Hello and thanks for replying to my message it means so much to me to know I'm not alone and that there are in fact people out there who really understand! I'm actually looking forward to hearing what they've found because I'm sure with this amount of pain I must be everywhere. I've just came on my period because I had to have a scan on Thursday (internal) and she poked and probed around so much that I'm sure she's made my period come early. Can they still operate if I'm on my period? I did leave that with my consultants secretary but haven't heard back. Do you know of anywhere else we can go for support? I feel so alone, none of my friends understand, they just don't get it and look at me like I'm over exaggerating period pain! :( I also get a searing pain when ever I need to poop, and because all my painkillers make me constipated it's now unbearable. I sometimes wish I could just cut myself open and tear everything out, it's such an awful thing to experience especially when nobody understands. Thank you for the hugs, I really need them! Xx p.s I hope your pain has settled down now?

  • Honestly the surgery will be fine whichever way u go you will hopefully feel better after. Key hole surgery is so advanced now it's wonderful. You may have couple of sore days and take it easy but it will result in you being in a lot less pain and better able to care for your children. I have s phobia about childbirth lol . I never got there as Ive had a hysterectomy now but even after the hysterectomy the first few days after I didn't have any pain at all! And yes ovarian cysts are a killer I had one undiagnosed for 2 years was hell. Trust me the surgery will be a walk in the park compared to your child birth experiences. Good luck anyway welcome to pm me anytime I know what it's like to feel alone. I'm in similar position my mum tries but she is getting on in years now and we rub each other up the wrong way that's all I have my cranky mum. But I love her. You will get great support on here so do use this support- all the best cxxx

  • Hello, thanks for messaging me. I totally forgot where I made this post until I checked my email address and saw all the replies! I'm thinking this may be one of my new hobbies during the night when I'm in pain to read and reply to posts on here, and make the occasional few. When I was pregnant with my twins I was on a mother and baby forum and it was a life line for me at times! I'm so glad I found this site. So did the hysterectomy fix everything or do you still get pains? I know where's a few ways to do a hysterectomy and they leave ovaries behind don't they now? Or maybe I'm completely wrong, forgive me if I am. I would love for them to take everything out. Even if it meant early menopause, anything would be better then this god awful pain. X

  • Will we all be thinking of you on Tuesday sweetie- even my husband wishes you the best!! I found that the buildup and anticipation as the op crept closer was the worst aspect of it. I cried when I said goodbye to my son on the morning of the op and cried when I dropped off my dog at kennels! But honestly sweet, once I woke up from the op I felt euphoric!! Write a post once you've had your operation and we can send you support and tips for your recovery...we are all rooting for you!! Massive Hugs Xxxx

  • Hello again thanks for replying! Thank you for your well wishes and also from your husband, that's very kind. Were you anxious before you got put to sleep? I suffer bad with panic attacks and I'm often in hospital because I get so worked up. Do they give you anything before you get put to sleep to calm you down? I just don't want to get too worked up and they can't operate because my heart rate is going mental. I plan to post once I've had my operation because I am sure I will have a whole load of questions regarding recovery so it will be nice to hear other people's accounts. Can I ask if you are all sorted now then? Or are you still suffering? X

  • Hi hope op went ok . They really do give I the pain meds these days. Sadly was getting betters but the original pain still there and now Cos Ive been vomiting since thurs saw doc for now for some pain meds . It'd your to get off them but the pain always drives me back then I get horribly bad tramadol withdrawal. Hope ur ok sorry if missed the point with ur last post at all . I too have bad anxiety especially when in withdrawal. Hope it's showing where the issue is now!! Not changed since hysterectomy with ovary removal. Only thing that works for me is hormone withdrawal. X

  • My operation is tomorrow so not quite there yet. I don't have any withdrawal symptoms from my pain medication which is good as my GP was worried I would get addicted to the Morphine, but I can take it or leave it. Just have to take it more then leave it at the moment as the pain is so bad. There are days when I can just about cope with co-codamol, although those days are tough! How are you managing? X

  • Hi again Hun, yes I was really nervous; it would be more accurate to describe myself as terrified. I could feel my heart pumping furiously and was quivering with fear as they attached me to the various machines. My heart rate was very high and my blood pressure was enormously elevated. I asked the anaesthetist about this (like you I was worried that they'd cancel the op because of such high readings) but he reassured me that EVERYONE is like this, even if outwardly they seem calm. So don't worry about that aspect- they won't decide surgery. Ask for something to relax you before you get wheeled down to the anaesthetic room- they gave me meds that made me fairly drowsy but relaxed. I too suffer from anxiety and made sure they were aware of that: they then took this into account and treated me accordingly. As for my personal experience, well, I'm 34 and started experiencing horrendous symptoms last year. The usual happened- misdiagnosis galore including Fibromyalgia and anxiety that causes pain (?) amongst an array of other labels. Basically I had an ultrasound and they found cysts. Had a diagnostic lap back in October and severe endo was confirmed. The symptoms got worse over Christmas and that's when I decided to have the bast**d disease cut out!! Had excision on the 13th Feb (unlucky date for such an anxiety ridden lady lol😀)....BEST THING I ever did. It's been nearly three weeks and just a bit achy/sore...the pain relief was immediate. I really really feel for your suffering and I promise you that there is hope. I'm sure that you'll get to enjoy a pain free summer with your children, sounds like you'll deserve a nice holiday after all this!

  • Wow that's fantastic that you've been pain free since the last surgery! I'm so pleased for you that you've found something that works. Did you mean cut out as in actually cut out? As I know they can laser / burn them as well but apparently they grow back? Can they grow back if their cut out? As I know endometriosis is a life long disease :( Also do they go back through the same incisions for the removal or does this require a different site? Sorry for all the questions. I'm loving this little site, I downloaded the app so it makes it easier to reply to people. My GP actually mentioned Fibromyalgia to me too, I think gathering things I've heard Endo is often the last thing GP's think of because it's the hardest to diagnose as needs an operation etc. Their inserting the coil as well whilst I'm under, the consultant seems to think this will cure my period problems but I've heard so many horror stories but she said all her ladies have not wanted them removed as it's worked straight away, so I just said well you can try it but if it doesn't work, I would like it removed etc. I'm at my wits end now where I'm willing to try anything. X

  • Pain was still there after hysterectomy then just as it was getting better then think Ive pulled something vomiting from some sickness bug or too rapid withdrawal from tramadol. Big bruise on my left side has appeared and I was kind of straining hard for long time see doc for updated pain meds.

  • My pain and symptoms are nowhere near yours, but I wanted to post to say that I think you've done incredibly well to get through this and to wish you good luck for your surgery.

    I think it's normal to feel nervous before a GA. Talk to the staff at the hospital, especially the anaesthetist. But remember that it is an every day event for them to put people to sleep, but this is not an every day event for you, so it's only natural to feel anxious.

    Just my experience, but I've never met an anaesthetist who wasn't incredibly skilled.

    This is your next step towards health and quality of life! Good luck and let us know how you get on.

    Gx

  • Sorry I can't answer many of your questions but I found an electric heat pad the best thing. I have it that hot and for such a long time like many other women it makes my stomach bright red, but it helps. Im not sure if we can send links or give brand names on here but there are many out there or inbox me and I'll let you know the one I got.

    Also for your op, if you can I would recommend cooking and freezing as many meals as you can (even if it's just mince in chopped tomatoes) you'll be greatful when you're out of hospital.

    Last thing ... after the op get lots of pillows to prop up on, peppamint tea and walk little but often - even if it's just to get the post or make a cuppa x

  • Thank you so much for the advice and the tips. I use the microwave heated wheat bags but I will certainly look into the electric ones as it would save me having to hobble downstairs to heat them! I'm planning to get some peppermint tea today, I remember after I had my section they gave me a hot peppermint drink on the ward to help with the gas. It seemed to work. Thank you for replying x

  • I knew lots of ladies would respond to you, we are all here and most importantly, we understand what you're going through and how it effects you emotionally 😭. They made new incisions during my second op so I've got seven scars: the older ones have faded well so my belly doesn't look too unsightly lol. Yes I had excision, sounds strange but I compare the treatments to getting out weeds- lasering/burning would be equivelent to burning off the leaves but leaving the roots intact. Makes sense that sooner or later, with the right conditions like hormonal stimulation they'll grow back. Excision is like digging out the weed, roots and all. They cut out a small amount of healthy tissue too, a bit like the soil that'd be dug out with the weed. It's sore afterwards because you're left with raw tissue that's got to regrow its protective covering, however there shouldn't be any remnants of Endo. The statistics are variable as to whether it'll take seed again, but I know that it vastly improves symptoms for 70% of ladies. I force myself to be optimistic and positive otherwise I'd fall into a pit of despair!! Excision is the gold standard treatment so if they discuss removal with you then ascertain how they're going to do that. There's lots of ladies that have ablation/lasering and found that it offers little pain relief, however some surgeons tend to lean towards that option. Once you've established how widespread and where the Endo is then start doing some research. For example, I suffer from shoulder and back pain (hence the Fibromyalgia diagnosis). It's only as I got to understand endo that I realise that it can be responsible for a myriad of symptoms, including shoulder pain and interestingly, anxiety. It validates everything you've been feeling- you're not mentally ill with psychological pain- you have a real, physical disease!! I hope you are feeling calmer today, thinking of you xxxx

  • Hello again, thanks for replying! I like the way you described the difference between the two, it makes much more sense that way! So excision is the way forward, I will be sure to remember this when I ask tomorrow afterwards, if my head can remember that is! I'm feeling ok, surgery tomorrow afternoon. Just the usual anxieties but feeling lots better since joining this site and reading other people's posts etc x

  • Hope u get some relief soon please see your primary care provider I know it's a double edged sward with my pain reliever but take care of yourself see doc if things going awry even if it's just a bit of piece of mind .

  • Thank you for replying! I'm booked in for surgery tomorrow so I'm hoping this is the start of my recovery. Thanks for your well wishes, I always try my best to look after myself x

  • Your story sounds just like mine . I was excactly the same way- 8cm cyst , chronic pain, trips to ER & nothing helped. By the time I was booked to see a gyno, the cyst had dissolved & I was back to square one even though I was still in pain. By then I had tried almost anything from castor oil& heating pad, Apple cider vinegar, Natural Progesterone cream ( which I could say helped a little) while I was waiting for surgery, which was scheduled at 3 mns.

    Anyway, the laparoscopic surgery wasn't too bad & went very well. I avoided lifting the first week & the pain has subsided, I was able to get through the day without painkillers but pain was still there. I made a decision to go back to bc with a lower dose of estrogen & since then I have felt much better. I occasionally get the pain especially if I am not moving but I try to keep busy being on my feet so I do feel the pain & do Aquafitness & that seem to help.

    Goodluck with surgery & just remember, you are doing this so you can be better & be there for your children.

  • Hello, thanks for replying. Yes the whole reason I am doing this is to be healthy and happy again for my children. It's awful being so helpless at times and relying on them. It breaks my heart when they ask if they can go to the park etc and I have to say no because Mummy couldn't physically walk or drive us there safely. But hopefully tomorrow is the first most important step in my recovery! X

  • oh hun, i'm so sorry to hear you are in so much pain. i will pray for you! i had stage 2 endo and did a lap procedure. endo is only properly diagnosed during surgery- not via any scan. so yes when they look inside during your procedure they will be able to determine/diagnose. My pain only hit me during my period, non stop. Warm baths helped but as soon as i stepped out i was in pain again. somehow sleeping on the floor helped me. the hard surface alleviated a bit of the pain. I also did acupuncture which helped. i suggest trying that.! Also, if heat alleviates you, i highly suggest MOXA packs. You can buy it on amazon. it his a self heating pad that lasts 9 hours and is infused with herbal medicine. Hope this helps. Pls continue to be strong for you and your kids. Continue to be proactive in trying to get to the bottom of this. Much love. Liana.

  • Hello Liana, thanks for the reply, it means a lot to hear from other people who suffer the same! I will look into MOXA packs right now, I am at the point where I try everything that people suggest. I am determined to get to the bottom of this, I need to know exactly how I can go from being active and healthy to feeling like I am dying most days and physically unable to even bathe myself, how is that possible. Surgery is tomorrow, I am feeling calm at the moment. It's my youngest birthday on Wednesday, so I've managed to make them a little picnic party food tea and they've (twins) opened some of their presents as I think on Wednesday I may still be in hospital or not in a good position to really enjoy celebrating their birthday, so I thought if I do it early, at least that way, we've still celebrated it like we would have! X

  • Best of luck for tomorrow!!! Try (though it must be ridiculously hard) to get some sleep tonight. Massive Hugs and keep us informed xxxx

  • I'm in bed now, went to bed early with a clear head and now my brain is going mental and thinking of every thing that can go wrong! I'm going to try and shake it off and put some relaxing music on or actually listen to the Harry Potter audio book as that normally works and forget about it and just deal with what ever happens tommorow as and when it happens. Thanks again for all your support xx

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