Experienced endo ladies - pain help please?

Hi all.

I'm 21 years old and haven't officially been diagnosed with endo... My GP has passed me to a gynocologist as she isn't sure what's wrong as I have varied symptoms and varicous veins in my pelvis. She seems to think it's endo... I had a few questions about people pains if people wouldn't mind? I'll give a basic breakdown below and any similar experiences or pains or advice would be great please - I'm going crazy with worry as I still have no diagnosis and I'm too young for a smear test etc - which isn't great when you suffer from anxiety which in turn triggers your IBS (I know moan moan moan right!?)

So pretty much daily I have had the below:

Backache

Groin pains (shooting and dull ache both sides)

Thigh pains (shooting and dull ache)

Hip pain (or so it feels, it's hard to tell when it radiates around can even feel like stomach ache)

They all range in severity with some days worse than others.

On and off I have the below:

Period style cramps (at random times and days)

Sharp pain in the back of my thigh

Sharp pain in my pubic bone area

Pain during sex deep feeling almost as if in my lower abdomen - but not always

Sometimes bleeding during/after sex again not always

Do these sound right to anyone or do I have a bigger cause for concern? For the past 4 weeks I have been in pretty much daily pain out of the blue. I'm 21, been on the pill 4 years and have never been pregnant if that makes any difference?

Any guidance on the pains and stuff would be great. Just concerned about the shooting/aching in my groin and I've also now noticed a small hard painless lump under the skin on either side of my groin.... Sorry for all the info, I'm just a little scared and pained!

Thanks everyone and I wish you all well xxx

12 Replies

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  • Hey, this does all sound very Endo like with the pelvic and leg pain. I experienced this with Endo in pouch of Douglas and around ligaments etc. The Endo can affect nerves which can make the leg pain worse. As for the lump - it is probably just a cyst which will go with time, very common around the groin, but get it checked by your gp next time you see her.

    Here is a website that will help explain some things if you're new to Endo endo-resolved.com

    - check out the alternative treatments/lifestyle changes, you can implement a lot of stuff that may help whilst waiting for your referral to gynae. I hope it comes through soon for you. Feel better xx

  • Thank you for your reply. I've checked online and it seems to be that my nodes are a little inflamed and this can happen when the rest of the pelvic region is a bit irritated, apparently anyway! Thanks so much for taking the time to reply.

  • Hi - where are you in the UK as this affects treatment options.

  • I'm in London.

  • Hi - click on my name and have a look at my post on how to find a specialist centre as you can choose where you want living in England. Also have a look at my post on rectovaginal endo. x

  • Thank you very much, was a useful read. Would you think that the severe nagging pain in my groin both sides and left side hip/back are a common indicator of that type of endo? The pain in my left side is agonising right now, like sharp/stabby dull ache that shoots along every 5-10 minutes! Would never think something like this can cause such pain and in such places! It's like my whole pelvic region is so peed off!! X

  • Hi does sound like endometriosis pain and symptoms as I suffered most of them prior to being diagnosed. The link above is very informative and I've learnt alot from the people on here as Drs seem to know very little about the condition. Hopefully you will have your appointment with your consultant soon

  • Thank you for your reply. I have 10 days until my appointment so hopefully some progress then. The groin pain is quite severe at the moment which is worrying but hopefully significant of endo.

  • These do sound like they could be endo symptoms. What I'm curious about is that you were told you were too young for a smear test--I had my first Pap smear before I was 21, and was told by that doctor that once you're sexually active, you're not too young for one. What you're describing sounds much more like endo to me than whatever you're alluding to being worried about (cancer? STIs?) but perhaps the gynecologist you're being referred to would be willing to do one if that would help ease your concerns. Good luck :)

  • Hey, thanks for taking the time to reply. It's really difficult to get one under 25 as they can offer more harm than good as some cell changes repair themselves however I think you're right and the gyno may want to do one anyway! It's just the symptoms overlap with cervical cancer a lot! I've had a pelvic exam, internal ultrasound and all came back fine with just inflamed veins in my pelvis. I've just not had random pain at this level before, it's almost like growing pains/aches and shooting in my back, hips and groin! With no complete knowledge on endo I wouldn't know if this is normal! You only hear about the issues with periods! X

  • Hi! My circumstances are totally different to yours. I do have endometriosis (severe), but am 41 and have two children (ivf). The best thing I have done, though is have a miserable coil fitted. This has stopped my periods and all associated pain. It can stay in for five years. Of course, this might not be suitable if you're planning a family any time soon, but it might be worth talking to your gp about it as it has transformed my life. Best wishes.

  • Predictive text - should say mirena coil.

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