Anyone had this

[nikkimatt2019]

Hi girls anyone experiencing left,right sides stomach back endometriosis pain bad even when u try move or get up it hurts so much to point u cant move even a slightest bit because if u do ur screaming in pain if u coughed, sneeze or anything? Plz I'm in so much pain and everytime I try move I'm just in so much pain when I'm almost crying if I move ? What do I do? No pain killers work for me due to past when od I've ordered cannabis oil that's due down this week. I just dont know how to stop this pain I struggle to get up at the moment and move around. I'm in so much pain I hate it because I cant do anything and everytime I move in pain.😭💔

[persil]

I think you need to see GP or A and E that might be your stuck inside best of luck. Xx

[kittykins7]

Bi Nikki,

Sorry to hear of your awful pain.

I used to have terrible pains each side. I was told by private specialist who excised it that it was Endo of the left and right side of the abdomin. Back pain could be linked to your pouch of douglas and could be Endo of the bowels as I also get back pain and had severe Endo in that area which had to be removed......I still get the pain in the back and my bowels problems have come back which I suspect is the Endo back again, but my really bad side pains have gone for good since I had it excised(it used to be awful, when I breathed in, couched, ate, or just doing nothing at all it was there all the time)...I also have bladder problems as well, not sure if you do. I have stage 4 Endo and although I'm not a doctor, I suggest you probably have it as well. I would get yourself checked out ASAP. Good luck and let me know how you get on.

Hopefully the CBD oil will help, as i use that and it helps. X

[Jade2006]

Hey I would suggest if your pain is very severe and brings you to tears you need to go to a and e , and try and get a ultra sound or mri scan .I had a large pelvic mass inside that stopped me in my tracks , I had no clue it was there and it was very large .

Best to get things checked out , we know our bodies more than anyone xx

[Jasmin24]

I would go to A&E.Especially if you struggle to move around.

Pain should not be ignored.

I hope you get the help you need.

[nikkimatt2019]

Thanks girls. The pain still havent shifted . The gp and hospital say to me constantly theres nothing they can do till the consultant does the operation that's all I'm being told at the moment which that's not until 4 months they are making me wait for that. Pain killers dont hit the surface or work at all. I'm running out options. Yes I also have problems with my bowels as in I'm weeing constantly alot but it feels like theres a block somewhere as when I try go wee not all comes out till I go poo sort of thing this pain hurts so much I just hate my body. Its damaged and pain is never going away.

[Rarejewel47 in reply to nikkimatt2019]

Hi there, I have same and I have completely changed my diet to vegan and starting to feel better, gradually. Do research on what foods to avoid if one is continuously having recurring poly cysts and endometriosis. I just start my vegan diet about three weeks ago (now going 3 weeks) and the pain is slowly subsiding. This is also my second day on herbal tea, self made, grated ginger and turmeric with one teaspoon each of black pepper and oregano leaves. I have to take this for a month everyday. These are my first steps to helping myself. I honestly can say, I'm beginning to feel a little better everyday. I have missed work for the third day today and I have reports that are due. Im slowly sitting up to work now but at this stage, still have to lie down, periodically. But I believe by the end of this week, I should be stronger. Hope you do your research on diet and herbs, especially the oregano leaves. All the best sister and I hope and pray you get well soon. Much love 😙

[ging04 in reply to nikkimatt2019]

hi, I know exactly how you feel. the constant pain which stops you doing your daily activities. i’m constantly needing a wee and yes i’m weeing more than usual but not everytime i need it. it’s so difficult to get to the toilet as it is due to the pain… i would too suggest going back to the gp and trying to get stronger pain killers as that seems to be all we can do whilst we wait… it’s awful but i’m not sure what else to suggest other than to keep pushing :/

[Jade2006]

I’m currently using a vape pen with cannabis in , I will try anything as currently my gp keeps given me cocodmol which does nothing at all but blocks my bowelUp making things worse. I spoke with my gp and asked if I needed another mri (my last one was just before my surgery I’m sep) she said no you don’t need one .

But my endo consultant has just made me have one.

Most gps have no idea .

One told me at least your don’t have cancer , well obviously but that wasn’t helpful .

Hope you get the help you need it’s all very frustrating as they don’t take us seriously .

X

[nikkimatt2019 in reply to Jade2006]

Thank u. I'm hoping the CBO will help at least for awhile. I'm gonna go for more scand while waiting for op as my gut instincts is telling me to get check as something dont feel right and feels like it has gotten worst. Because then that way when it comes back theres more damage because of them then that's on them either way. The same with my gp constantly trying to give me tablets when nothing is working. Its frustrating as so much pain and being left each time I go hospital was sent home. I'm tired of this all. I'm 26 in 3 days time and still going through this. I was told a few times I had cancer didnt believe them I was in shock dont get me wrong as when ur young u dont know what the hell is going on and why it's happening to u. I just feel like they are waiting till it's to late I'm still young never had a life no memories or nothing and feels like I wont get that and I'd be taken to soon without getting to live life. I dont have family only 2 friends and my partner. That's all I have I am an orphan always been on ny own no one there for me. But then at same time trust issues because people lied. 1 min there there next they vanish after using and abusing u to the point u dont dont wanna be round anyone life is not a fairy tale to me i see it astheres never a happy ending never have been for me and i know it will be same to point I'm dead. But life is beyatch we cant know what's round corner until to late I wish life was easy but it's not. Thank u for your reply hope ur ok and hope u get something sorted just shame we have to wait all this time for these useless gp's and hospitals. I've been waiting many years before convid even existed. Keep in touch u sound like a really good person. Least I know now theres at least some descent people out there. X

[Jade2006 in reply to nikkimatt2019]

I have not tried cannabis oil just trying the vape pen with cannabis that my friend ordered for me to try .We have to try and stay positive about things don’t we.

But definitely have to look after ourselves.

If you ever need to chat my inbox is always open.

Hot water bottles and baths help a little .

Iv always ignored my symptoms and though they where normal until last year.

I’m 10 years older than you but feel like I’m 90 .

X

[nikkimatt2019 in reply to Jade2006]

Thank u. Ur not that old really when we hit the 70'80's I say that's when we are old lol. Yes we do indeed its hard to stay positive alot when u have so many things going through ur head not knowing what the outcome is gonna be with are health and other things but at same time we are still here. Its horrible going through all this. I hate this pain more so tho just fact bad pain that just isnt budging and ur trying move as much as possible and in so much pain to point u cant move. I try to fight my pain a much as I can and I can only tolerate so much pain and put up with it for so long and this pain i csnt cope just surviving as much as going along. It stops u from doing activities or shopping when u need to do something u cant. X

[Simo7]

Sorry you’re in so much pain. The only other option that I could suggest is a heat pad and/or hot water bottle. Or maybe a tens machine - personally I’ve not tried the tens machine but I have heat pads (electric ones) and on bad days I’ve one on my belly and one on my back, or a hot water bottle. I hope your cbd oil helps when you get it, but keep in mind it may take a while to find the right dosage for you. Wish you well x

[nikkimatt2019 in reply to Simo7]

Hi thank u so much. This pain still not budging I'll try hot water bottle later to see if that makes it any better or at least a bit. I'm constantly trying pillows and cushions and not working either just alot pain.x

[EndoRabbit08]

Come to think of it, I've recently started getting pain on my sides, mostly left. It's unbearable and sometimes I feel it's hard to take a deep breath but that's more of a feeling. I also can't cough, sneeze or laugh because if I do it hurts like a *******". Suffering from hayfever and i dread getting my periods come spring time. 🫤

My pain can be unbearable at times and so many times I've been that close to calling an Ambulance but then I pull myself together and make a hot water bottle/ herbal tea and it seems to calm down a bit. Then I'm glad I didn't go. 🙃

When I stand up after having sat down for a while the pain is excruciating and I feel like something inside is stuck and coming 'unstuck' as I pull myself up and try and straighten. I look like a 90 year old when I walk after that. I get random painful stabbings like I'm being stabbed with a hot knife. I feel burning, itching, prickling and what feels like broken glass under my skin. This condition is absolute sh**e and I really feel for you.

It's dragged me down mentally some days and I consider myself a positive person. I've had negative thoughts at times. Sometimes I want to scream. Other times I just don't want to talk. At all. I feel like ripping my insides with my bare hands. That's me on my bad days. Here I am, unashamedly saying it like it is.

I'm having a flare up now ( even though I've done nothing to warrant it) I've had a screaming match with my husband because I'm tired of having to explain myself about why it hurts so much. I'm now sat, confused, tired, annoyed and just trying to forget I have it by distracting myself on my phone. I'm on day 2 of my period which means about another 8-10 days of this to go through. I'm on top of it most days but I'm not ashamed to say that at times I can't cope. Today is one of those days. You're not alone. Stay strong. ❤️

[nikkimatt2019 in reply to EndoRabbit08]

Hi I'm so so sorry u are also suffering this. That's how mine started of it was only on the left side for months then spread to my right side bottom of back hips and ribcage months after. I understand what u are saying and how u feel because I'm the same when this pain is that bad sometimes I just want to cut it all open myself I get like that alot I just want to rip it all open and get to all the parts that is hirting so much so I know how u feel. I'm the same with my moods because I also have bipolar I dont want to speak to people sometimes as no one understands, or if I do speak to my 2 friends or partner I'm stressed out so much I stop talking to them because I know by me getting wound up I will release my stress out on them. I'm a lovley kind person. I've never in my life had moods this bad. When I'm in pain I do the same with my partner. Sometimes are love ones can only do so much buy most time they dont understand because they havent or ain't going through it so it's more difficult. Theres woth my partner he just see's how much pain I'm suffering and where I'm crying my eyes out and where I cant move. Sometimes hes had call ambulance or sometimes I tell him no!!! Dont call ambulance because last time he called ambulance they didnt come it went on for nearly 2 hours then ny partner contacted my friend and my friend took me and got us there with in under 15 minutes they are useless ambulances,hospitals and doctors its frustrating I try distracting myself with not thinking of pain and my partner trys talking to me to distract me as well but it dont work or help. It's really frustrating where u have to suffer this much pain and nothing still gets done with this situation u just get left to suffer. The only way to describe the pain is like if you are a dying patient really but in alot more worst pain. Hope u stay strong also. They CBO I've ordered that also. Some women recommend it and say it helps, I will try hot water bottle also see if that works for me but everything for me at moment just ain't working and painkillers never work for me dur to my past history of overdosing. So I'm stuck in hell lot pain and agony.

[EndoRabbit08 in reply to nikkimatt2019]

Sorry to hear it. I really am. It's funny how symptoms seem to be similar across the board. Only someone suffering from this pain can understand it. Our partners, children, friends etc really haven't a clue. And bless them they try to understand and imagine how bad It is but even with all their imagination I'm still left saying "Nope! It's way worse than that!"

The way I describe my pain to them is like describing a scene out of a horror movie 😆. I know they think I'm exaggerating sometimes. I don't think any human can comprehend how bad this pain is. They think if I really felt that way, I wouldn't be working, cooking cleaning, walking etc. But that's just it. I still DO all that stuff because what choice do I have? I'm not one to let anything control me. That's not to say that it doesn't get to me. Like it did today.

So I totally understand what you're feeling. I feel your frustration, your hurt, your desperation. I live it day in day out. I can be sat with my whole family and yet still feel so alone. I'm sick of talking about it. I'm sure they're sick of hearing about it. You start to sound like a broken record so you either not say anything or lash out. I know. I've been there.

Anyway, I really hope you can find some relief. It's pretty much trial and error. What works for some may not for others. It's strange how one condition can affect everyone so differently! I dread bedtimes the most. I can't even sleep normally. I'm either propped up on pillows or sleeping on the reclining sofa. Hurts to sleep on left. Hurts to sleep on right. It feels like having a C section EVERY month except way worse! Ugh😖

Sending you hugs, good vibes and lots of positivity. I hope we all find relief somebody. This isn't a way to live. But we're warriors.👊 We'll get through this. Just hold on.

Chat anytime xx

[nikkimatt2019 in reply to EndoRabbit08]

Awe thank u and sending back to u. I understand what u mean we have so much in common I'm the same I try doing as much as possible even when in so much pain because it's just how I've always been deal with it and get on with things. I dont know what a c section is my partner just explained it to me. That's same with me even on ur back it hurts as well. I know right. Everyones bodys is different some is lucky some is not.xx

[EndoRabbit08 in reply to nikkimatt2019]

Yes. We're all different. There's why it's great being on here. Learning and sharing experiences. Just being able to find others who totally understand has been really great mentally.

I decided to stop coffee today and am taking more herbal teas. I've also been drinking loads of green tea, ginger tea, turmeric tea, fennel/ caraway tea, chamomile tea. A friend of mine recommended organic black seed oil. All of these combined have really taken the edge off my pain. I'll try anything. The more natural it is the better. It's a slow journey full of ups and downs, twists and turns. All we can do is see what works and what doesn't and hopefully find our comfort zone in amongst all the chaos.

Take care

Xx

[Hidden in reply to EndoRabbit08]

Hi,u r absolutely wright,nobody cant understand how we suffer and many people thinks for examle -well if she is cooking etc must be not that bad but they dont know what that mean for us to trying so hard to be a little bit active with housework, going beyond my pain,learn how to ,,switch off"when cooking etc.Sitting is painful for me too and when i hear from Surgeon probably IBS i just cant believe that,really 2,5 yrs just wrong diet?I am reffered to gynecologist urgently finally.Wonder how long this will take now?.I am tired of begging Doc 4 help,trying to be positive but only with God's help.Wish u all the best ,thank u 4 sharing your ,,pain".

[nikkimatt2019 in reply to Hidden]

Thank u. I hope u get yours sorted to. Yes it's a pain no one understands all they just think is that it's normal and we ain't really in pain or we are just putting it on or making it up I hate it. I wish there was a way for them to suffer and feel are pain for 1 whole day and night to know how much its effecting us and how much its hurting us.

[Hidden in reply to nikkimatt2019]

🤗

[Hidden in reply to EndoRabbit08]

Hi,glad to read your story exactly the same problem stabbing,pulling,sharp pain and burning sensation in left lover abdominal and vagina.Something stock in body i feel.Even Sitting is painful too many times.Sadly cant use hot water bottle anymore as too sore.Cant wear jeans since 2,5 yrs.Thank u 4 your info.Wish u all the best!

[nikkimatt2019 in reply to Hidden]

Your welcome. Its horrible not a nice thing to go though. Hope u get yours sorted I'm still waiting and suffering.

[Hidden in reply to nikkimatt2019]

i am sorry for your pain too,me too still suffering,and not even diagnosed yet...Be strong God Bless!

[BloomingMarvellous]

Hi Nikkimatt2019,

Sounds grim. Have a medical background and so researched this for myself as painkillers weren’t helping. The thing I’ve found really helpful is NAC ( and that will help post OD toxicity too ) and Omega 3 which has both EPA and DHA ( I use Biocare’s one as it’s good quality ). Look at the info and studies online (they also find that peeps with BP tend to be deficient/ need extra EPA& DHA ) to counteract imbalance with vegetable and meat based essential fatty acids. I take the oil in apple Juice to help it down. I found with a really good diet the pain significantly reduced. Worth a trial.

[Tillyfloss]

Hi. Have you heard of a frozen pelvis? The pain you are descending sounds similar to the pain I was having, I have endo but everything had completely stuck together and nothing could freely move in my pelvis cavity so everything hurt all the time as it fought against each other. None of this showed up on the ct or mri scans I had, when they operated they thought it was just a cyst attached to my ovary, bowel and womb. There isn’t much information about it but there should be as it’s aganoy😱. I do recommend the diet idea as that did help in the months leading up to the surgery, I did still get pain but it was more controlled. Xx