I have noticed that every night I am having flare ups where I am in so much pain on my left pelvic side down my left leg that I honestly dunno what to do with myself that I feel nausea from it.
I always had flare ups just before, during and after my periods, but just feel like it’s getting worse and that I am getting flare ups all the time I honestly don’t know what to do anymore. It is affecting my day to day life and I hate being off sick from work a lot recently cause of it 😞.
I have a 8cm cyst on my left ovary and just concerned that my symptoms are getting worse and there is something wrong?
I maybe overthinking it and this is known with a cyst, but not getting much help from medical advice at the moment and just feel lost with it 😞.
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Chester28
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Hi, I don't get it down my leg, but I do get it in my left hip. Especially at night. I also have a cyst on my left ovary. Painkillers won't touch it and sleep is out of the question so all I can do is lie in bed and watch The Wire on my tablet for a couple of hours till the pain subsides. It's been getting more frequent over the last few weeks and I'm exhausted and barely functioning from lack of sleep.
I have my first appt with my hospitals endo team next Thursday and this is the first thing I'll be asking about. I'll let you know what they say. You have my sympathy - it's so horrible.
Aww I’m so sorry you are going through this too, I honestly feel your pain 😞. I cry mostly every night thinking when is this ever going to end 😢. It is so strange why it does that, I dunno if it is the way it sits while we lay that it’s putting pressure on our ovary or organs, but it is such an uncomfortable pain!
Ahh I agree with you it is exhausting and never ending!
I am calling my doctors today to ask for some stronger painkillers, and hoping something will work 🙏❤️.
Aww I really hope it all goes well for you next Thursday, let me know how it goes and hope you get some answers 🙏.
Hope you don’t mind me asking did you go private or have gone through nhs? Xx
Hi, my GP will only give me codeine based painkillers and I find they either don't help or make it worse. Hopefully you'll find something that works for you.
The hospital I'm seeing on Thursday is my local NHS one. But I have a lap booked at private hospital in early march because our NHS hospital has closed it's endo waiting list (I've been told). I'm really nervous that the op won't help, I don't know how I'll keep going if it stays like this 😔
I was given codeine before and I was exactly the same as you, it didn’t work at all 😞. Ahh I really do hope I find something too.
Aww I really hope it all goes ok and hope the op does work for you 🙏❤️.
It’s a shame you couldn’t do the op through nhs, but I’m happy you managed to get it booked very soon and you don’t have to wait too long. Did they refer you to the private hospital or did you have to do it? ❤️
I was originally referred to the gyne unit at the NHS hospital for suspected ovarian cancer. They did an MRI and then they called me in and said it's not cancer , it's endometriosis, we'll put you on the waiting list to see the Endo team, it's a really long waiting list, here are some leaflets, have a nice day.
So I found a local private hospital with a surgeon that knows about endo and booked a consultation with him (I just emailed through their website and they contacted me).
I'm hoping meeting the endo team on Thursday will be helpful and they'll be able to give me some help and advice about managing the condition. But I don't want to get my hopes up - chances are they'll just tell me I need surgery and be prepared to wait.
Omg that must of been worrying to hear all of that 😞, but a relief to hear it was definitely not cancer! So sorry you had to go through that ❤️.
Ohh that’s good you found a hospital with an endo team and hopefully they will give you more info and details. I get what you mean cause there’s not alot of info about endo, so not many people can advice you on it, but as they are a specialist in endo hopefully they can give you the answers you need. Let me know how you get on on Thursday and hope it all goes well ❤️❤️
Bless u! I could if wrote this myself, except mines my right side. I can tell it's another cysts but the nhs is too busy to scan me, so carry on we must 😖
It's always worse at night isn't it 😔
Mines like a burning, pinching nerve running from my groin, hip down to my knee, is yours the same?
Aww so sorry you are going through this too 😞. I am on the waiting list too and got off the phone crying to them saying I am really struggling, and they said they will see if they can get me in quicker, but I do find I am not as hopeful with it all ❤️
Ahh it always is, when I feel like I am on a mend then all of a sudden it hits you 😞. I am honestly too scared to do anything crazy in case it flares up and it’s awful to feel like this 😞.
Yeah mines exactly the same but on my left side and if it gets really bad the pain also goes across my pelvic and lower back and I get diarrhoea from it too 😞 xxx
Oh it's awful isn't it 😔 litrally rules our lives.The amount of times I've broke down to the professionals, sadly they tell me what i want to hear in the moment but don't act on it. It's so lonely at times.
Yeah it is exactly that! I just feel like it’s never ending and they only tell you what you want to hear, and I feel sometimes they don’t know what else to say as it’s such a grey area.
Ahh I am really grateful for the group ❤️.
I haven’t been on the wait list for long, but they are saying I won’t be seen until may, but been pestering for cancellations and hopefully be seen sooner ❤️.
Yh definately.Yh I've been on the waiting list since 14th december, apparently I've got a years wait 😔I asked to go on the short list incase councilations but I still reckon it will be awhile. Such a drag when we're in pain.
I just want answers as feel like I'm going mad with it, it's all I can think about as it's there everyday & night.
I could be carrying a bag of shopping home & feel ok but as soon as I sit downit creeps in & I've caused a flare through such a simple everyday task. It's so crap.
I took my little boy to playgroup earlier & now i feel like my pelvic area has a strange ball of dull aching which i no will get worse & worse as the night goes on 😖 x
Aww I am so sorry to hear this 😞. It does break you when you hear the waiting list is forever as you don’t know how long you are waiting for.
Yeah I know exactly how you feel, as it’s always around so you can never just forget about it.
I can see my health anxiety going to play up with this as I am always worried to do daily tasks incase it just flares up and I am like you if I do something cause I feel so much better I think yeah I can do that task but then it starts creeping up again 😞.
Ahh it is the worst when it creeps up in the night especially when it’s the time when you want to rest 😞❤️ Xxx
Hi. Sorry to hear you’re going through this. I’ve had similar symptoms to you but on the right side. For me, I have a similar size cyst and also endometriosis affecting the uterosacral ligament (holds the ovary up).
I asked my consultant and he said it’s common to get leg pain as it radiates and refers down from the ligament. Hope that helps to reassure you - I know it’s so painful but just reaching out to hopefully make you feel less alarmed by your symptoms! X
Aww I’m so sorry you have been through this. Have you had this all solved now or you still undergoing treatment?
Ohh ok that makes sense and thought it would be something to do with that, just sometimes with my anxiety it always thinks the worst 🙈. Thank you for letting me know about this, it has reassured me with it all ❤️ Xxx
No problem - am glad it’s helped reassure you! I’ve just had one month of zoladex, my surgeon wants me to have 2 more months of it and then will be having surgery at the end of March 🤞🏽🤞🏽 I totally understand - the pain and the anxiety all feed into each other I find - silly endometriosis haha! 😭
Hi, I’m so sorry this is happening to you. I get severe pain like this sometimes during the night and I can’t sleep. If the pain relief I’m taking isn’t working, I put on a tens machine as I find that’s the only thing that will counteract the pain and actually make me lay down properly and not wriggle in pain. I’m currently taking naproxen and ibuprofen to help with pain. I’ve also been prescribed dihydrocodiene but I find that doesn’t really help me at night when I try to sleep. I also suffer from endometriomas in both ovaries and I’ve opted to having them surgically removed.
Hi Roseyred13 I noticed that you said you take both naproxen and ibuprofen? Is that correct? You can’t take the two of them together as they are both anti inflammatory drugs, you can take either of them with paracetamol though and I would suggest to try and get some omeprazole to help the lining of your stomach, sorry to but in on your reply but I don’t want you to overdose x
Aww I’m so sorry you are going through this too! It is horrible isn’t it and is not a comfortable feeling at all 😞.
Ohh I have never heard of a tens machine before is it good? And if so where can you order it from?
I have also been prescribed with naproxen and take it with paracetamol! I also take mefenamic acid with omeprazole only when I am on my periods too. I am going to see how I go with them and if not may try different meds.
Ahh I am so sorry you have endometriomas on both ovaries that must be awful 😞! When is your surgery date or you waiting for a date now? xx
Hi thanks for the response. You can get a tens machine from Amazon.
I’ve been on the waitlist for surgery for a year now but it’s gotten really bad for the past two months. I’m finally having a consultation about the surgery this Feb so hopefully it’s not a too long wait afterwards. I’m having treatment under the NHS.
Hopefully the pain meds help for you. I stopped taking mefenamic when on periods after awhile and just switched to naproxen because it stopped working. I’m also on the combined pill so that I bleed less and it’s helped with the pain. I’m using it back to back as well because let’s face it, we don’t actually need to have a period if it can be avoided. The evidence shows that a break from the combined pill adds no benefit.
No problem at all. Ohh that’s great I will have a look into that thank you ❤️.
Aww I am so sorry that you have been waiting a year for surgery 😞. I hope your consultation goes well in feb and you get into surgery very soon! Yeah I’ve had to make that decision to go on nhs as I went private for a consultation but never got anywhere and will cost loads of money 😞.
Aww thank you I hope so too. It’s funny you say that as I started to notice that it wasn’t doing much for me last month, but I will see how I go next month and if it doesn’t work then I will do what you done switch to naproxen. This is the the dilemma I have at the mo as I’ve been on so many pills and none of them agree with me and I honestly don’t know what one to try out. I’ve been on pills for years and I think this is where all this has been hiding for so long and started to notice more pain back in 2018/19 when I was on the pill and originally I thought it was the pill causing it so I come off it completely in 2020 and I think that’s where it all just flared up for me, but was always told I have bad menstrual cycle and that was it, so never thought anything of it until I chased it up 4-5 months ago and here I am now xx
Hi Chester28, I have end stage endometriosis, it is on my bowel bladder kidneys uterus (frozen pelvis) adenomyosis too and large endometriomas on both ovaries and the pain I get is unimaginable. The worst of my pain is left sided and radiates through my lower back through to my hip and leg. My gp said this could be due to the cysts pressing on the sciatic nerve. Or that the endometriosis has spread to that area. I am having surgery on the 9th of February to drain the cysts and have a look how bad things are then I have to have multidisciplinary surgery with endo specialist, colorectal surgeon and urologist to fix the mess that I’m currently in. I am 99.9% sure I will opt for hysterectomy to be honest as I has suffered with this now for 26 years I’ve lost my career as a result of it, and I am severely depressed. My list of pain meds is naproxen 500mg twice daily, 300mg gabapentin 3 times daily, zapain 30/500mg 2 four times a day and oramorph as needed every 4 hours. My advice to you would be please do your research on your gynaecologist and if at all possible find a bsge centre near you and ask to be seen by them as they are specialists. Nhs gynaecologists in my opinion (and I have seen lots) do not care about you, you are just a number to them. That is why I am in such a mess right now! I hope that you find the answers that you are looking for. Good luck xxx
I feel for you so much. I really hope that they do a good job of finally fixing you up. It's so terrible, it should never be allowed to progress that much, it makes me so angry.
Hi Endowarrior84 thank you so much for your reply and advice!
Aww I am so sorry that you are having to go through this, I honestly do feel for you 😢! I am pleased that your surgery has been booked for feb and hope the surgery all goes well and they sort this all out for you ❤️
That does make sense why I’ve been getting a lot of pain round the back of my leg etc, thank you for letting me know! I am also on naproxen too, going to see how I go with my meds and if nothing changes I will have a look at other med options.
Yes I noticed that with some gps and gynos I have not had much support with this as who I’ve spoken to don’t really know what to do or advice as they haven’t fully dealt with it before. Luckily I finally found a perfect doctor that understood and has referred me to a gyno that is bsge centre and so grateful they have done that for me! I have been calling the centre up and they are going to try and get me a cancellation appointment so hopefully I won’t wait too long 🙏❤️.
Hi There.I had a 8cm cyst on my left ovary. I was in do much pain. One day the pain was so severe that I ended up in A and E at this point I didn't know what was wrong with me and had so many tests CT scan blood tests, ultrasound etc. First the medical team told me I had a Cyst what type at this point didn't know. The A and E doc made a emergency referral for the next day to see a gynecologist, no one contact me so I waited three days for an emergency referral to see the gynecologist,so I had to chase them up and ended up getting an appointment after they messed up.
Had my ultrasound the doctor found 8cm cyst on my left ovary. Then I was booked in the next day for a CT scan, the cyst was attached to my plevis wall, left ovary and rectum.
So I was booked in for surgery still at this point they did know if it was a mucinous cyst ovary or something else I was scared. Then I went in for surgery on the 21st Oct after 5 hours waiting to have my sugery it got cancelled.
A week went by nothing from the hospital so I kept on them for nearly two weeks in the end I got my surgery on the 2nd of November. Even on the day of my surgery the sugeron did not know want she was dealing with, after all the fight I had felt in me it ended up it was endometrioma. It's relieved my pain abit.
Before my surgery I was told to take turmeric, omega 3 which helps with pain and flare ups, vitamins b's and B6 good for hormone balance, I also was told to take endo- complex this vitamins specially designed to deal and help women with endometriosis symptoms. Also flaxseed good for flare up, cut down caffeine big NO, drink camomile tea again good for flare ups and pain, read a book called take control of your endometriosis, it tells you want food to eat and avoid. Gluten free diet may help to control pain. and lastly try Buscopan very good for abdominal pain or any suffering pain from a cyst.
You need to get on your GP or hospital to get surgery. I don't wish this on anyone my endometriosis cyst twisted that's why I ended up in hospital I was in very severe pain and it could of reputed.
Please fight to get sugery. I hope it helps you and wish you all the best
Omg I am so so sorry you went through this that is awful and couldn’t imagine the pain you went through 😢❤️!
That must of been so scary and awful that you want through all of this and that is one thing I am fearful of, as I felt like a couple of occasions it was nearly going that way, it’s like I went to A&E once but this was way before I knew I had a cyst and had such a painful period and left side pain that I couldn’t walk and was crying in so much pain, but they never scanned me or anything just said I had a painful menstrual cycle and then three months later was referred and they found a cyst on my left ovary. I have been very lucky that it hasn’t gone the way it went for you, but it is like what you said you have to keep pestering and fighting for it!
Thank you so much for you advice with vitamins and the book! Will definitely look into this thank you ❤️ I hope you are ok and well now? ❤️
HiI know exactly how you feel and it is so uncomfortable and exhausting. I had severe endometriosis and a 15cm cyst (was an endometrioma) that had stuck to my bowel and ovaries had fused together etc. I had a laparoscopy to diagnose and treat this. The sooner you can have that done the better.
I would give the same advise as Cockapoo 2016 above and really push for surgery as soon as you can. I was referred to a brilliant gynecologist on nhs. You have to really push for action or go private if you can to be seen sooner. Its worth every penny to get your life back! Good luck and let me know if you have any questions or want a chat xx
Ahh that is so awful! So sorry you went through this 😞❤️! I hope you are well and better now?
Yes I do 100% agree with you there, as I have noticed that I have to keep fighting all the time to get seen sooner and have been pestering the endo gyno centre and they said if I keep calling I should get a cancellation appointment hopefully 🙏❤️.
I am sat crunched up trying to get rid of the pain again. It was the same last night too. On a weird sort of way it’s comforting know there are others out there with the same. Pain down my left side, feels like someone is trying to pull everything out. I take naproxen, codeine and paracetamol, just waiting for it to ease with my tens doing it’s work. Waiting for a total hysterectomy, cannot come soon enough. Stay strong sending hugs
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I’ve just had one month of zoladex, my surgeon wants me to have 2 more months of it and then will be having surgery at the end of March 🤞🏽🤞🏽 I totally understand - the pain and the anxiety all feed into each other I find - silly endometriosis haha! 😭
xx
Working endo diagnosis 3yrs in!
Possible endometriosis
10 weeks post Lap and still in pain!
Cyst pain or endo pain?
