What is your pain like?

I'm in Canada, but this so far has been one of the best forums I've seen. Everyone talks about the pain but I don't see many descriptions. I've had this sharp pain for years and years that nobody else I know seems to have ever experienced - even the ones with IBS. I've done the internal and external ultrasounds, xrays, bloodtests and nothing. But up until recently, I thought all my pain was just normal, something that as a woman I just had to deal with but the more I read the more I'm finding it's not so normal... I'm hoping others will be willing to descriptively share what their pain is like...

Bloating so much, so much stomach discomfort it causes pain to wear tight fitting pants

Bloating (lately, all the time) around period, not helped by probiotics.

Pain, sharp and camping and aching in pelvis, back.

Awful debilitating cramps when I first started my period around 12, that's around when sharp pain started too. Mom said it was normal cause she had bad periods too when she was younger.

Cramping a lot even after periods, not quite the same as a period cramp but still there and still painful.

Diarrhoea on period, like, always.

The sharp shooting pain that I get majority of the time to do with bowel movements but not always, can be so bad it stops me in my tracks, afraid to breath incase it makes it worse. Want to literally scream in pain but can't because I'm breathless. I've had to stop in the middle of a store completely embarrassed with my social anxiety holding on to my friends arm and have a store associate ask me if I'm okay and if I need a chair because I'm just standing still obviously in pain. Fallen off the toilet with this sharp pain that shoots all around my pelvis area, couple to few times had it go down into my legs and up into my torso. It's been so bad a few times I thought something extreme was happening in me like my uterus or bowels were going to fall out of me and considered the hospital.

I've tried completely relaxing my muscles everywhere, knowing I get tense with pain, and I've tried being more tense and neither seems to help I just have to wait it out

Going too deep during sex is extremely uncomfortable and can be painful. Having tampons in was always a dream but always too uncomfortable, no matter how I put it in or how many times I tried, or how many sizes or how long I'd go trying just hoping it would get comfortable the longer I had it in, it never got better so I just stopped trying with the tampons.

The general every day pain seems to be getting worse and worse over the past year, still another 4 month wait for gynaecologist to even discuss the possibility of a laproscopy to confirm or deny endo.

Appreciate any descriptions!

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  • You're not alone!! I also have this kind of pain. I have IBS on top of the endo and I'm miserable all of the time. Especially if I don't take Miralax. Sometimes, if I push while trying to make a bowel movement, I get a horrible sharp pain that feels like I'm being stabbed and I'm afraid to go afterwards. But taking Miralax twice a week really helps. Having sex and wearing tampons can be miserable for me as well and it sucks. I can only use small tampons and even then I have discomfort. And when my SO and I have sex, he has to go in slow because if he goes to fast or deep I have severe sharp pains. I do not have the bloating that you have, but I have pain in my legs, back, lower abdomen, and up my vaginal wall.

  • And I've also had the same thing lately where you can't walk in a store because the pain is so sharp. It happened to me while shopping with a friend and I had no idea what to do. I felt helpless and I just wanted to be home in bed.

  • Hi I'm so sorry to hear that you have really suffered a long time. Everything you have discribed is the same as me. I've had numerous problems due to endo and the pain is hurrendous all the time sometimes it's dull and achey but the majority of the time the pain is sharp stabbing and like burning. It does cause a lot of anxietywhen out. I get pain running down my leg too. But I don't know if that's because the endo is growing up my spine, it's quite strange readingabout how it effects you I can't believe how much it's like mine. Please let me know when you see your gynaecologist, hope you get some answers. Anything you want to know if I can help I will. The women on here are lovely were always here xx

  • Im in Canada too, I know the gyn wait here sucks. I'm 17 had my first period when I was 8/9, currently awaiting a speacilist and have been suffering the pain ever since my 1st period.

    For my pain it varies, it always hurts like crazy but it's different.

    Sometimes it'll feel like a huge amount of weight is on my organs and crushing them.

    Sometimes I'll feel like a knife with ridges is inside me moving around, it feels really gross.

    Sometimes it'll be sharp pain travelling around but mostly staying inside my abdomen.

    Sometimes it feels like someone's pulling me apart.

    Sometimes I'll feel like I stretched my legs, like that soothing sensation but it's really painful and it feels like I'm on fire.

    And just recently I've developed this odd pain where I'll feel like I broke a bone (popping sensation) 'down there'.

    I've been to the hospital in pain lots of times, you'll be taken seriously don't worry, just say your in lots of pain and they'll check you out and maybe give you a painkiller in your thigh (it hurts but then it's good). Besides it could always be something else and it's better safe then sorry:

    Are you able to get any pain killers from your dr now? I like Naproxen.

    Are you on a contraceptive? If you have no cycles the endo doesn't have as much of a chance to grow. I'm on a progesterone only pill, I find their easier to get used to then the high dose pills.

  • Yep more or less the same. I was diagnosed with endo when I was 17. I'm now 42 and it seems to be getting worse and lasting all the time not just around my period. At the moment the sheer exhaustion is getting me down and I broke down at work...it was a long time coming. I'm currently waiting on a lap to see how bad it all is. I've lost me appetite completely and I think that's down to being scared of the paid when my bowel is full. I also suffer from achy legs...just had a full nights sleep yet I feel like I've run a marathon!

  • Hi Sharpyy your symptoms sound similar to mine, and I have stage 4 Endo. I get shooting pains in my rectum that stop me in my tracks. I have a deep boring pain in my hip that feels like someone pushing a screwdriver into it. I have pain everyday and it feels like my pelvis is rotting. Also very strong sciatic nerve pain in my left leg. The pain can be mind bending and leave me unable to speak or move. I have chosen not to take hormones so it's me V's the Endo-not easy.

    Wishing luck and hope your appointment comes soon x

  • I can relate to a lot of the pains which you have described.

    I also feel like an ice cream scoop with razor edges is scraping out my insides. Dramatic I know but that's the only way I can describe it.

    :(

    I've finally been referred to a gyne and hoping and praying that I'm taken seriously!

    It's not easy to get a diagnosis and unfortunately there is an attitude that Women should put up and shut up , please don't, seek advice and help don't stop until someone listens.

  • The majority of pain that i get is a sharp stabbing sensation, or it feels like someone is tugging on my stomach. Back pain is similar to this stabbing feeling i get in my abdomen. I have the same issue when opening my bowels/ when they are full (it really hurts!!)

    Hope your pain eases up soon xx

  • Oh and i get that pain where its difficult to walk too sometimes.. So annoying x

  • Hi Sharpyy,

    I have been diagnosed with endo and IBS. My IBS diagnosis came at 15 years old and endo last year after a laparoscopy. I get sharp pains in my abdomen most times before a bowel movement and it's really painful. I then need to rush to the loo to relieve the pain. I also get spasms in my rectum which are excruciating and sound similar to the pain you are describing. I can't move when it comes on and sometimes it takes up to a minute to pass which feels like forever when you are paralysed by pain. I have endo between my vagina and rectum and i think this is why i get this type of pain. I also get pain during and after sex. You will need to have a laparoscopy to know for sure but it sounds like your symptons could be endo.

    Hope this helps

    Nicki

  • consult a homeopath with all your tests done reports ,you can get relief from all your sufferings,thank you.

  • I have had the same issues and problems and same exact tests done including lap surgery and colonoscopy and d&c and beth control and everything you can think of but still not yet diagnosed. if you get any results back let me know because we might have the same issue that isn't diagnosed yet :)

    praying for you

  • Wow, I really appreciate everyone's replies... I didn't expect such a response but I'm so glad I got one.

    I honestly don't mind if it's not endometriosis causing the pain, but just knowing others have the same pain is comforting. I remember the first time I tried to explain it to my doctor years ago (I'm 24 now) and was so embarrassed I could hardly get it out..

    Whenever find out anything, if anything at all I will be sure to post. I'm on here almost every day reading trying to find some understanding in anything.

    Thank you so much to everyone who replied.

    -Erin xo

  • Hi! I can also relate to the pains you described. I haven't been diagnosed but have my first lap in October. I have IBS as well and it is always worse leading up to and during my period. I know it's a bit too much information, but the worst I've experienced are these horrible gas pains where I can actually feel something digging and moving around. Maybe that's like the ice cream scoop pain that Li__B described. When that happens, I also have to just freeze and wait it out without moving. I also have really bad lower back pain that comes and goes, radiating to my upper butt and hips. Anyway, I wish you all the best w/ seeing a specialist and hope you get to the bottom of it soon. Will look out for your updates!

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