Does this sound like Endometriosis?

I know pain is all relative to whoever is experiencing it.

But could someone give me an idea of what it feels like to them please or how it has been explained to them by others. By no means am I asking for medical advice as I have already sought it, but just wanted to have others insight please.

I was Dx with IBS a while ago, and the pain I feel I always associate with that, However after a trip to the GP this morning, it appears one of the blood test I had recently Ca 125, was quite raised. Not raised enough for him to be worried it was something nasty but enough to suggest it may be something like Endometriosis, after fair bit of questioning and explaining about heavy periods/lots of flooding/pain etc, I am now being referred to Gynae.

The pain I get, and its not every month, but when I do get it its quite dibilitating, I just feel like all my insides are inflammed and are about to spill out of my flue, I have a fair bit of bloating and lower abdomen/uterine area is very tender to touch. Every time I walk and take a step it feels like it is ricocheting up my body and aims right for the pelvic area, even my hips and lower back are affected. It hurts to fart, sit on the loo for a wee, and i need to brace myself for a poo. This can last a few days, not much more and usually after a period.

TIA

11 Replies

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  • Does sound like endo to me hun.. my pain is like a burning grinding pain deep in my pelvis and I get sharp stabbing and pulling pains around my ovaries. Wind is painful and so are bowel movements and if I have to do a big wee that can make me quite achy afterwoods too. I also get ibs symptoms where I'm normally bunged up between my period and loose when I'm on my period. I also bloat and my public bone is often sore to the touch. Hope you get sorted soon hun and you get some answers for your pain but it does sound very much like it could be endometriosis xx

  • Thankyou for your reply, Ive had these symptons on and off for years, the last time I was this bad was a few months ago, where i could hardly walk and the only relief i could get was in bed lying on my tummy with the electric blanket on.

    Ive always thought it was part of IBS, but after talking with GP today it is sounding more like this as well.

    Wonderful, just another thing to add to my list!

  • I was in a similar position for a long time - I've had a diagnosis of IBS for years, and I always thought the really severe pain I got some months was my period aggravating my IBS. But I slowly started accumulating other symptoms - spotting at ovulation, bladder problems when I had PMS, pain before my periods started etc, and eventually my GP decided I should be referred for investigations. It turns out that I had a particularly nasty patch of endo in my Pouch of Douglas, which was responsible for my IBS symptoms - so I might not have ever even had IBS!

    From what I've read it sounds like the general guidelines are that if your period causes enough pain that it interferes with your day to day functioning, it's not just 'normal' period pain. So for example, I started scheduling stuff around my periods, making sure I wasn't planning anything in the mornings when it was likely to start (for fear I wouldn't be able to leave my bathroom floor), kept having to cancel things due to pain/fatigue/faintness - it was definitely an abnormal level of discomfort in that respect, but because it got worse gradually I never even noticed how much it was taking my life over.

    Hope that helps?

  • Im not actually on my period anymore, i finished yesterday and started with the pain today, this is how it is for me. My periods are quite heavy but i just assumed they are my own "normal" only when i told the GP today that i use a Mooncup and they hold 13mls and I can empty it out 4-5 times a day, he looked a bit shocked, he said that is a normal amount for a whole period!

    i just need to wait for this Gynae referral now, lets see how long this takes

  • Hi - it sounds very much like you have endo affecting your bowel in a place called the Pouch of Douglas. When endo flares at period time it will give IBS symptoms so these are actually caused by endo if you have it there but you can have pain all the time from scar tissue and nerve involvement as a consequence of it. A raised CA125 in relation to endo indicates a ruptured endometrioma (chocolate cyst) which will usually be present when you have endo elsewhere. Click on my name and have a look at my post on rectovaginal endo and the one on how to find a specialist. It is very important that you are seen by a proper specialist and not a general gynaecologist as Pouch of Douglas endo is often missed by them and you need to take charge and get this right from the start. Feel free to private message me if you have any problems. x

  • Do you mean the endometriosis can be attached to the outside of the bowel and also the top of the vaginas? The pouch of Douglas is tucked away behind the cervix

  • The Pouch of Douglas is a really common place for endo to be found, even though it's tucked away nicely. Bodies can be so awkward!

  • Got a call from my GP this afternoon, got Gynae appt in a couple of weeks.

  • Well that was an interesting few days, OH had to call 999 for me on Sunday evening as had temp over 41 and was shivering and delirious.

    Short version is ive had 4 days in hopsital with high fever, hypotension, and abdo pain. Been Diagnosed with PID and have Gynae referral in a few weeks.

    Am home now, still a bit flagged out but didnt get much sleep in hospital, so should sleep well tonight. have got 2 weeks supply of Doxycycline and Metronidazole. Was on IV Tazocin and oral met in hosp.

    feeling pretty meh at the min as could have done without over a week off work as need cash for holiday coming up at Christmas. But hey ho, Im home and healthy (ish)

  • Hi,

    My form of endo effects my bowel too. I would say that the pain feels like the worlds worst period pain - excruciating and relentless cramping and tender. In some ways almost like you have trapped a nerve and unable to bend over or stand up straight due to the pain in my pelvis. It hurts from the bottom of my ribs to the tops of my thighs and rarely is there any relief from it. The condition also causes constipation so from time to time I feel so backed up that going to the toilet is excruciating.

    I hope this is in some way helpful,

    Best of luck with your treatment

    Beth

  • Hi have extensive Endo around my bowel. 5 years ago I almost died due to a blockage in my bowel caused by the Endo. Some days I am constipated others I've been known to only just make it to the toilet. The pain is unbelievable. Ironically I look 6 months pregnant even through I can't have children naturally. Buying clothes is a nightmare and I have resorted to maternity trousers which does nothing for the self-esteem.

    I cut wheat out of my diet years ago as I read that it can aggravate the adhesions around the bowel and of course give you IBS.

    It's nice to actually talk to people that understand. Even though I have suffered terribly with this condition for years and should be used to it by now. I still can't help feeling completely alone.

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