Can you describe your pain?

[durdledoor]

What does your pain actually feel like? Can you describe it!? I am finding it difficult to find good examples of how people are experiencing their symptoms, Google gives a bog standard list but am finding this unhelpful.

[LSD9944]

I think this really varies from person to person. I have really sharp pains in my abdomen which are agonising. Fortunately it's only when I am

On my period.

Not sure if I've described it too well. It's hard to do. Do you think you may have Endometritis?

[annelou74]

Mine was anything from a constant burning come nerve pain which became worse during a period to a dull ache in the pelvic area on good days, but everyone experiences pain different all i put it down to was it wasnt a normal period pain feeling for me

[Rhiann]

Like LSD9944 said I think it really varires between people, and also may depend where you have it. I have stage 2 endo, (also called mild but again the severity doesn't have a correlation with pain). For most it's extremely painful periods, and pain during the run up to the period. For me my pain actually lessened on a period. I feel gnawing pain over my left ovary (which is one of its locations) and this can develop into a dull stabbing or twisting pain as it worsens. I also get pain during sex which feels like a severe menstrual cramping, pain which feels like it's from my bowel (I have it in the Pouch of Douglas also) which makes going to the toilet painful and seems to cause constipation, and I generally can feel like I have period pain constantly on and off. Sorry if that isn't very helpful. It really does seem to vary massively.

[rekroceisus in reply to Rhiann]

YES! you hit the nail on the head omg. I have all of the same criteria as you and similar experiences.

[kelsbels88 in reply to Rhiann]

I have my lap and dye test tomorrow but this is what my pain feels like too although it is worse during my period where I have on occasion visited the bathroom several times in an hour due to the effects on my bowels.

[Amie10]

I get stomach cramps and it's a killer feels like someone is grabbing my inside twisting and pulling them! Agonising. Sorry if this is a bit grosome.

[discobec]

During my period I have terrible deep cramps which come in waves. After my period for up to 2 weeks I have a horrible feeling of heaviness and pressure, like I'm carrying rocks in my abdomen, and sharp hip pains which radiate around to my lower back.

The week before my period seems to be my best week of the month pain wise.

[sami78]

Mine feels like I'm being burned,and also get sharps pains like I'm being pinged with a rubber band over and over x

[MiriamGrazier]

Mine varies from a dull ache due to scarring to really bad burning and stabbing pain. It feels debilitating. It affects my bowel and makes me feel exhausted. I often wonder how I manage to hold down a full time stressful job.

[Nicole124 in reply to MiriamGrazier]

I hear you girl!!! the stabbing, burning, constipation and gas that won't come out!!! hard to walk. Praise God he gives me the strength to make it with some actual JOY in me spirit. I'm having another surgery soon the date is not set I see my OBGYN tomorrow.

[Kerri215]

I agree every persons pain varies. Mine is like a burninf hot feeling and sharp needles being stabbed in my lower abdomen. With also heavy period pain feeling. I have pain all the time even when on period. Sex can at times be uncomfortable but its not unbearable. My belly swells up to which isnt comfy. Hope that helpped.

[durdledoor]

Thank you so much to everyone that has responded, really helpful! I am waiting my first lap and am just getting really paranoid that they don't find anything, I'll be back at square one. As bad as it sounds, kind of really hoping it is Endo. My pain appears to be similar to some of yours, constant period pain, extreme pain in legs bum and lower back dull and aching and twinging sensations that don't last long but are so painful. Thanks everyone

[shazlovesevo]

In my experience it's a very painful aching in my lower abdo and literally feels like someone is trying to pull my womb and ovaries down through my vagina, (nothing ever comes out obviously, else that would be a different story but it's just how it feels), it's horrible :(xx

[shazlovesevo in reply to shazlovesevo]

Also a lot of pain during sex, shooting pains in my lower abdo & vagina, pain during sex is felt deep inside but then gets worse after sex and takes a while to go off, sometimes it's crippling pain and don't wanna have sex because I don't want the pain, just hope they can do something for me, glad my boyfriend is understanding, been with him 5 years and he's my first sexual partner too so it's nice when you have someone who's supportive x

[angelyn]

Mine started with a burning pain in pelvis the week after my periods.

In the past i always had pain for a week before my period. This felt like moderate cramps with severe stabbing pains. During my period I have heavy cramps and sever stabbing pains.

Recently ive also developed kidney pain which is currently being investigated. It feels like an aching/pressure/throbbing interspersed with either mild stabbing pains over flank and back (where ribs start) or excruciating stabbing pains (over kidney)that cause my whole body to spasm and I cry out in pain.

I have endo on my bladder which at least explains why it feels like someone put a hot coal inside me and left it there to burn for hours. Sometimes my bladder is so sore I can't walk- feels like a terrible uti.

(They've ruled out uti,kidney infection,kidney stones via some tests)

The kidney pain is that bad I could feel it through the morphine they gave me for my lap. If I don't take pain killersii literally can't think about anything else.

The burning pain gradually professed over a year and the kidney pain over about 5/6 months. At first they tried mefemenic acid then codeine,then tramadol, then added stuff to tramadol about 3 different times.to the point where I was on 23 pills a day.

I'm now on tramadol,naprocin and amytryptaline. However I'm still experiencing pain. My pain has progressed to a daily occurrence. Next week I'll be asking gp for 12 hour morphine pill.

The first gynae I saw told me that my pain wasn't cyclical enough to be endo. She also said that people with endo don't describe a burning pain. She basically sent me out the door feeling like I had made it all up because I didn't fit her criteria.

Well that gynae was wrong as they found endo on my bladder during lap. Do not let a gynae fob you off. Admittedly the 3rd gynae I've dseen says I'm not a simple case. He thinks I might have adenomyosis in addition to endo,since he can't resolve the severity of my pain to the small endo they found on my bladder. Awaiting mri.

[will-EndtoEndforEndo]

I found a description online which I explained to my partner who has Endo and she said it explains quite well the feeling. Its about 7min50 into this video. youtube.com/watch?v=d2x7s5K...(Not working as expected?)

[KWJ2]

I always had ache in lower back in the lead up and during my period but one period had me in excruciating pain where I just couldn't settle, I couldn't stand up and no painkillers helped. It lasted 2 days then settled down over a week or so. I also had some spotting after intercourse but otherwise my periods were regular. Recently I have had stabbing pains in my abdomen and pelvic area as well as aching in my groin and hips. I also suffer from constipation. The more I read the more symptoms I hear about which just shows how everyone experiences different symptoms at different times and to different degrees.

[Hidden]

Hello mines a dull constant ache that lingers on all day everyday non stop that can make me start feeling sick or get tired after a while. Theres also another pain which comes when pain gets bad which is like a stretching feeling and then a sharp pain.

I have endometriosis, adenomyosis and pcos so im unsure which comes from what.

[durdledoor]

Thanks angelyn for your in depth response, sorry you've had to deal with these problems, doesn't sound great! They are saying to you that the amount of pain isint adding up with the severity of Endo found but I'm sure they are not usually connected anyway; a large amount of Endo doesn't necessarily mean extreme pain, every case is different,, good luck for the mri.

Thanks to everyone for sharing your stories.

Thanks so so much to Will for the video, it is brilliant!!

[InNeedOfAdvice]

everyone one has different pain but before I was on the pill my pain was constant pain while on my period as if someone was swinging me round by my insides (sorry for the use of words) pain doing sex felt like I was being stabbed in the stomach everytime he went near me. Bad back pain but now Ive got the coil & fingers crossed it's working so far.. My pain during sex hasn't completely gone it's a lot easier to tolerate now, sorry to sound crude but every so often if it goes to deep I have terrible stabbing pain which makes me feel sick and stays a while along with the fact we can't do certain positions. I get very tired a lot of the time still. But periods now are still painful as a normal period would be but I get cramps in waves, it almost feels like contractions or what I would imagine contractions to feel like as I've never had a child. but when my period is due I still get almost like cramps up my recturm & loose stools which are always very painful when trying to pass them. I don't know if this has helped you at all, hopefully it has. also I've been refused surgey until I want to try for a baby so take what you will from different people xxx

[_lovelyness]

My pain feels like I'm in labour with very bad contractions. I also have shooting pain in the vagina and rectum. Stabbing pain in the pelvic area and ovaries. Intense pressure on my hips, lower back and tailbone, and a feeling that hot metal is running through my nerves. All this at the same time.

[durdledoor]

Thanks lovelyness and InNeedOfAdvice!

InNeedOfAdvice - your problems with sexual intercourse sound very similar to me, sorry to hear this but I agree different positions make a difference although this pain has been so severe for me I've ended up in tears.

I'm surprised to hear they won't give you surgery until, you want a baby, I'm 23 and I did tell my consultant that I would be wanting a family soon which may not be completely accurate, could you not tell a little white lie,? They can't expect you to live your life in pain just because your not ready for children, that is absolutely ridiculous!

Have you had any diagnostic surgery or nothing at all??

X

[InNeedOfAdvice in reply to durdledoor]

Hey, yes I've been in tears many times not just from pain but from constantly getting frustrated with myself!

Well you see I'm only 19 & I suppose I could try that but my other half gets private health care cheaper as he is in the armed forces so when he's home I'll get put on that for another opinion, I may lie an say I'm looking to start a family.

And that's my point he won't do surgey at all! so I've had a scan bak in 2013 and it was clear but it doesn't always show up on scans, he made me keep a diary for 6 months on the pill without takin a break he INDIRECTLY DIAGNOSED me with adeymosis & endo, although he won't do surgey I need to try the coil first apparently. but I'll get a second opinion, to gt a more detailed explaintion look on my page. but I really hope things work out for you

And please if you find some answer or anything that helps I would be much appreciative it's so frustrating sometimes especially the pain during sex, it doesn't only hurt me but makes me feel bad on him because he thinks it's his fault! he's very supportive and understands though.

I want a diagnostic surgey so I can actually say out loud what eer the hell is wrong with me! best of luck to you. Keep me posted xxx

[durdledoor]

Hi InNeedOfAdvice, how long have been taking the pill non stop now? I'm guessing it has not helped you at all?I also thought the coil was not recommend for anyone that hasn't had a child yet, I think it can be very painful for the younger woman just to warn you, i personally would suggest to your consultant that you want a family as this seems to be the.only way they will listen to you

[durdledoor]

Also ask for a second opinion and do some research into Endo specialists in your area and go back to your GP about this!

Unfortunately I haven't yet figured out any thing helpful in regards to intercourse as of yet but I will let you know if I do. Thankfully I also have a wonderful partner who is very understanding.

Take.care xx

[InNeedOfAdvice in reply to durdledoor]

well it was from July to January & my period when I took a break was worse! so that means the endo didn't shrink which is what he thought would happen! and I've had the coil fitted now a few weeks ago, but not the mirena as it didn't fit too big but the jaydess which is slightly smaller & I didn't realise it was going to hurt until the doctor asked if I passed out from pain! which of course I didn't! according to the nurse I handled it quite well which was no surprise just felt like normal pain to me!

Yes I will say I want children & look for a endo specialist in the area, hopefully somethig will come up. thank you very much for your help & advice, I'm hoping to go to a support group soon to also get some advice and ideas.

Take care xxx