Posting this at silly o'clock as I lay in bed with terrible aching/burning legs like growing pains!
I'm yet to receive a diagnosis and understand how this all works etc - I'm seeing a gyno in a few days, however I wondered if anyone experienced symptoms all month?
My symptoms appeared somewhat suddenly over a few weeks after experiencing pain during deep penetration (sorry lol) and some bleeding after sex, then followed back pain, shooting pains etc now groin pain, leg pain etc... They aren't period related, I suffer with bad cramps the first day of my period but I haven't felt worse around this time as its been pretty constant.
I have had this every day for nearly 2 months now, it was bare able and only a few symptoms but now it seems there are more pains all the time no matter what I do. Does anyone find the pain is constant and not directly related to menstrual cycle and can gradually become more severe over time? It worries me I'm getting more and more symptoms more often and more painful?
Thanks xx
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Haych9
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Hi yes I have the pain constantly. I was diagnosed with endometriosis 2 years ago and since then I have had a laparoscopy in August 2014 where they removed some of the cells. Some cells had actually attached the back of my vagina wall to my rectum. The pain this caused was constant. Pain up and down my back and down my legs.
The only reason my pain was diagnosed was because I was having surgery for piles and anal fissures and my surgeon picked up on my painful sex comment and he knew about endometriosis so referred me to a Gyno. The endo pain can have me double over in pain when it is severe in my womb and bum.
I am currently suffering from daily pain and I have a morphine patch which releases 10mg an hour but it doesn't even touch the pain just makes me drowsy enough to sleep at night.
My recent surgery for the anal fissure was unsuccessful and I believe it's because the pain is the endo and it's causing the anal problems.
Keep fighting for a diagnosis because even if it's not endo it might be something similar and the longer it is left the worse it will get. Also remember every person is different so the pain you are feeling might not be the same as someone else but doesn't mean it isn't as significant.
Thank you very much. During a pelvic ultrasound they noticed I have pelvic varicese too which could cause some pain but other symptoms are endo related. Im hoping my gyno appointment will shed some light but I'll certainly be very demanding! Thanks for sharing your story, I wish you well and I'm sorry to hear you suffer so bad xxx
Good luck with your appointment and please do be demanding. When I had my first appointment I didn't know anything about endometriosis I sat googling it and finding as much out as best I could.
Now 2 years on I know a lot more and I even met a nurse when travelling in New Zealand that had a hysterectomy but the endo cells had already reached her kidneys so the hysterectomy made no difference to her pain.
Endometriosis can be a ticking time bomb so the quicker you start treating it the better.
Also it's not all doom and gloom diet can help the pain and there are other treatments that work for different people.
Hi I was dignosed with endo a year ago also aheadions on my pouch of Douglas I never used to get back groin pain or leg pain but over the last month or so Iv been getting this not only during my menstrul cycle but it is a lot worse on my periods getting awful cramps and pain on left side of my stomach and stabbing pain in my bum my dr is pretty certain that it's endo related but due to see gynae on the 7th April so going to ask them if it is related to my endo or if it something else hope u feel better soon hope you get some answers xx
Thank you! I've read it can be related to it because inflammation can press on nerves and stuff... Which makes sense I spose! Good luck with your appointment and hope you feel better xx
I was diagnosed last March and had endo on my left ovary. My main symptoms were painful and heavy periods but also the leg pain - I get it sooo bad to the point that I cannot sleep! They have put me on various medication to ease them but they dont help much. I was a lot better when they removed it, but I have a feeling that it has grown back. My leg pain can hurt anytime in the month, but is always worse around the time of my period. I dont know if you are the same, but I feel tired all the time as well.
I hope you get somewhere with the diagnosis and if you have any questions then please ask
Thank you! It seems mine is just getting worse week by week so doesn't matter if it's around period! But the groin and leg pain is horrible, it's like a sharp ache almost like growing pains. Thank you for your reply and I wish you all the best too xx
I hope you in me both. And I believe I jhave St gave up on the doctors because they make me feel as if I'm putting too much emphasis on the pain, which I am not. And as bad as it is I just deal with it and med myself up until I have found ease.
It's horrible you feel that way. I am seeing my gyn tomorrow and I feel like I have soooo many symptoms I'm worried hell just get bored or focus on one or something. The pain in my groin is the worst, but it's like upper groin so almost joining to my lower abdomen so I think there must be some connection there, when it's in my groin it travels into my thigh and legs which is horrible especially as my back ache is there near enough all the time! I'm so anxious for the appointment but hope for the right step forward and stuff!! Let me know if you ever need a chat about your frustrations and pains etc, I totally sympathise with you x
I always need to char about my frustration. And I hope you get all the help you need. Because when I experience the similar pain on my left side, lower back, left thigh sometimes stretching it hurts like crazy...and when those pains come it's like I don't want to be bothered. I don't know to scream, cry, pull my hair or just sit in the pain. Because it's like nothing and I do mean nothing helps.
I'm so sorry you feel that way, I almost feel like I've injured my groin and there's a slight swelling of the crease just above it which I think may be related to the shooting pains in my groin and hips, which worries me it'll be complicated case of endo so easily shrugged off because no doctor knows how to deal with it. Hospital doctor said swelling was nothing to worry about after he poked it around but something is causing it! I've only found that keeping myself busy helps but I get that when you're in pain it's hard to be busy. Talking to someone definitely helps me too, so please by all means drop me a message and rant! More than happy to listen or help where I can.
OMG! I could have written this! My doctor asked if I wanted a note for work.... like that would make it hurt less?!? I want relief from this stabbing, twisting, pulling, burning pain!
I have pain every day and that's been for nearly 7 years. The Dr's struggle to believe me (even though I've been diagnosed with endo through a lap) because it is everyday. I don't know what feedback you've had so far from Dr's but I really suggest writing everything down that you are experiencing. Because obviously endo is period related it's kinda expected to only hurt at that time and it took me 4 and a half years to get someone to believe me and give me a lap.
The daily pain Can be due to adhesions that are on a nerve end, or attached to organs, sticking organs together etc.
Good luck with the gyne, and know your not alone, were all out here, and by being on here were all here for each other!
Hi Cakegirl 25. I've read your message and sound like I'm possibly in a similar situation to you. Started experiencing pain in Aug 2015 that was every day and finally got a lap to investigate Aug 2016 and endo was removed by diathermy. I am still in daily pain and it's got worse since the operation. Now been put on Zoladex injections as they're not sure it's endo causing pain so think if they give me temporary menopause it should see if it stops pain or not. I've only been on it for six weeks (had 2 of the 3 planned monthly injections) but they've said that if pain is still there at my next gynae appt in may they don't know what to do. I'm so worried as had to give up my job now and am pretty much housebound as pain is so bad. How is your pain now and was any solution found for you? I'm wondering if there's endo that hasn't been removed or if it's nerve damage or something else. X
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daily discomfort is no fun at all. I hope you get some ease soon! X
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