Wondering if anyone else suffers with a similar pain to me..
I started to get a burning pain in my vagina/lower back and it’s gradually got worse over the last 2 years. The lower back burning pain is worst when I’m sitting down for long periods of time.
My periods are also getting heavier each month with lots of clots.
I’ve been to the doctors a few times but feel quite dismissed each time and it’s just passed off as ‘hormonal’.
Just wondered if anyone else suffers with this awful burning!
Hi lovely, I get burning pain with my thoracic endometriosis in my diaphragm. I haven’t had this type of pain in any others areas my endo is. Have you ever seen a gynaecologist? I would push to be seen if you haven’t, it took my GP 12 years to finally refer me to one by which point my endo was stage 4 x
Thank you for replying. I haven’t yet, finding it really hard to even get a face to face drs appointment! I’ve had a scan which didn’t shown anything but I’m aware endo wouldn’t show up anyway. I’ll keep pushing the doctors! Thank you and hope you’re feeling okay today x
Do keep pushing! Endo is notorious for hiding in scans as you said. I found it helpful to keep a log of all of your symptoms because it’s so easy to forget how many times you have felt pain and where. It’s so hard but do keep pushing, literally call them every day if you have to! Sending you the warmest wishes 💛
Hi, I get burning in my labia occasionally, and regular stabbing in my vagina, I also get back pain, although I wouldn't describe mine as burning. I have endo and am sure the burning is related by nerve involment.
You have a gynecological problem that your GP is unable to diagnose or give you any treatment for. Therefore they need to refer you on. I know how hard it is, especially over the phone, but be strong and politely insist on a gynaecologist referral, and don't be fobbed off.
Good luck x
Hello, before I was diagnosed, I had a constant burning pain and pain in my lower back that I had thought was a pulled muscle. It went on for so long that the physio recommended an mri and that's when we discovered I had some large cysts that turned out to be endometriomas, they called them chocolate cysts. I had previously been to my gp about periods being so heavy and extremely painful and I was completely dismissed so I never thought it was all linked. I just thought I couldn't deal with pain and was weak. Please make sure you get seen, push for a referral. Tell your go of your endometriosis concerns. Good luck and I hope you get seen ASAP xx
Thank you, I hope you’re feeling a bit better now! I’ve had a scan and nothing was seen on there but fully aware that endo doesn’t always show. Just makes you feel like you’re going crazy at times. Xx
Aw it's such a common feeling. I've had 3 surgeries now, and I still question myself. It would drive you crazy. But thankfully the community online helps us make sense of it all and deal with it better. It's very true that scans don't always show endo so please do get yourself heard. If I had the chance to go back I definitely would have done something about it earlier. Massive regret. Definitely believe things wouldn't be as bad if I'd been seen earlier. Sad :(I hope you get somewhete with it asap. Look after yourself and remember we are always here and you are not imagining it xxx
Just had my drs appointment and made me think of your reply! I’ve now cos a physio as they think the back pain is separate to heavy periods (which I don’t think is the case). They mentioned an MRI scan so you never know that might help and show something. x
Hi, that's great you got seen but the outcome is a bit disappointing. It feels like going backwards. I went to a physio for my painful back, which then led to an mri and then the diagnosis of endo. I am 100% sure that my back pain was because of my endo. But it's helpful to get another opinion. My physio had heard of endo and explained that my back was suffering because I was hunched over in pain alot too!! Who knows!! You are being proactive about getting it sorted so hopefully things can happen quickly for you. Your pain is real. Here any time xx
Exactly the same here… you’ve come to the right website! Good luck getting a diagnosis. Hopefully soon x
Sorry you’re going through this pain too! Are you any closer to a diagnosis? How do you deal with the burning pain? Xx
I have an appt for a scan and consult with a private endo specialist in two weeks time so we shall see. Do your pains come for a few days then go or are they permanent? Mine come routinely 2 days after my period and end about 10 days later. Soon as they’re gone I convince myself I was making it all up and should get over it, then they come back again!
I’ve tracked the pain before and seem to have a small break after my period and then gets worse towards ovulation and then a few days before my period again. Even having a day with less pain is a dream! Hope you’re appointment goes well! Does your pain ease with anything? I find it helps so much if I can get out for a walk and move about xx
Yep agree, sitting is the worst, so moving about is helpful and I guess hot water bottles but after a while only those 400mg Nurofen will do anything. Hate taking it long term though. If you get a diagnosis let us know what they say - Ill do the same x
Yes please do keep me updated I’ll do the same, always on here if you want to drop a message x
Yep they just confirmed I have ‘extensive’ endo although I get the report emailed to me later tonight. Was so worth going private just for the skill of diagnosis via ultrasound rather than having to go through surgery. No idea what I’m going to do about it yet but glad I’m not making it all up. How you getting on?
I have a burning feeling around where my uterus woukd be and my legs. Inly thing that helps is shaking my legs like crazy. For me its endo pain dont let them dismiss you it will only csuse more pain in the future i know that from experience sadly. I wish you best of luck you have our full support 💜
That’s where I feel the pain too, it’s horrible! If I can get up and move it helps so much but an office job means I’m sat down a lot which seems to make the burning pain worse! I have to have a hot water bottle most of the time! Sorry you’ve gone through this pain! The support on here is so lovely xx
Hi
I get this too ive always said its like a hot poker going thru, ive got my specialist appt tues ive got stage 4 endiometrosis im not to clued up on all this as still getting used to everything my endiometrosis is around my bowel bladder and ovaries im soo glad I found this forum as i no longer feel im loosing it
Dont suffer
Push for help
Keep going and stay strong
The media is also highlighting how long and unnecessary the process is soo hopfully there will be an end to the suffering and maybe one day there will be answers or a pain free life xx
Omg yes I get the exact same thing! I also get burning in my lower tummy. The only thing I can compare it to is when you’ve got really bad sunburn or a scab and it feels like it’s constantly being scratched! I haven’t found anything that makes the pain better
Yes it is like a intense sunburn! It’s hard describing the pain! I just feel like I live with a hot water bottle attached to me all the time! That’s the only thing that helps me x
Omg yes! I litrally feel burning from my womb & in my back &to my lady bits 😞I used to think it was a uti x
Same sometimes I feel like it’s UTI and sometimes the burning goes to my inner thighs too! I called this week and have a drs appointment in three weeks time, better than nothing! Hope you are okay and always here for a chat x
Yes I identify with this completely. I get this feeling often
I have spent many years trying to describe the pain. I found if i make the description more visual ppl tend to understand and then gasp- or agree with me. Have you ever seen furn-gully? The part where the evil black spirit is Oozing like thick burning oil up through the belly of the machine? Imagine that around your internal organs That’s one description. Or see a film that has an evil lab, there’s always a vessel of green bubbling liquid, that’s what it feels like my organs are seating it just being burnt n pickled away. Sorry Iv been up most the night in pain and I think im going a little crazy lol x
Yes I am 100% with you on this. It’s hard to explain sometimes, but you have nailed it! Hope you’re feeling a bit better now and managed to get some sleep x
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