Lumps in groin - suspected inguinal endo

[Z_tz]

I was diagnosed with endo in April. In several appointments leading up to my surgery, I told my consultant about some lumps on both sides of my pelvis (which I've had since December 2016). However, despite these being on my notes, they weren't investigated during my laparoscopy.

He thinks the lumps might be caused by a inguinal endometriosis or swollen lymph nodes due to the endo in my pelvis (now removed). He thinks it's most likely the former but I'm having to wait until October before he'll look into it any further (in case the lumps go, although I am very doubtful after all this time).

The lumps can be painful, particularly around my period when they swell up even more.

There is virtually nothing about this on the internet and I'm not reassured by the fact my consultant isn't really sure what to do next.

Does anyone have inguinal endo or groin lumps similar to what I've described?

[nat94x]

Hey, sorry I cant offer advise or knowledge on this but from what you've said it sounds like i'm in a similar position so i'd like to see how you get on in future! I was diagnosed via laparoscopy with endo a month ago, it was found on my right pelvic sidewall and bowel adhesions on right side too.

I've had right sided inguinal lumps for about 4 years, these get more painful, tender and swollen near my period like yours. I've been sent for quite a few ultrasound scans because of how tender and big they get, one is around 10mm. Each time i've been told they're enlarged lymph nodes, but no one has ever been able to tell me why I would have enlarged lymph nodes in my inguinal area for 4 years. My consultant knew about the swellings too, he said they were enlarged in my appointment before the laparoscopy. I haven't had my follow up to the surgery yet but when I came round after the surgery he didn't mention anything about them so it seems he didn't investigate them either.

I've wondered about inguinal endo but i've read its really rare so I don't know... Personally i've put them down to the endo on my right side causing the inflammation like as a reaction because there is something wrong?

But like you I too would really like to know the reason for them - especially as they get so painful! I'm going to see what my consultant says when I have my follow up as I dont think mine will be going down anytime soon either after 4 years!!

Sorry I cant offer any knowledge, but I know its sometimes good to hear someone else is having the same issue.

[Z_tz in reply to nat94x]

I completely agree that it's sometimes good to hear that someone else is in the same boat - especially when there's so little information about this online! That said, I'm really sorry to hear you've had the lumps for such a long time - you poor thing.

Before my diagnosis of endo, I had several ultrasounds too and was always told that the lumps were "just swollen lymph nodes that would go down". I was on the pill when they initially appeared, so I hadn't noticed a pattern to the swelling/pain.

My consultant thinks that the lumps could either be swollen lymph nodes or inguinal endo but, given the symptoms, he thinks it's the latter. If they are lymph nodes that were swollen due to the endo in various areas of my pelvis, he thinks they should go down now that the endo has been removed.

If they aren't gone by October though, he said he'll look at either putting me through HRT or doing a different type of scan (I think MRI) but he didn't really seem sure which route would be best. Apparently, if the body thinks it's in the menopause, the lumps should disappear or shrink if they're inguinal endo but I'm really keen to avoid HRT, especially when he didn't seem convinced that it would help!

Let me know how you get on at your follow-up - I hope you get some answers x

[nat94x in reply to Z_tz]

I hope you get some answers and get somewhere with this.. it's hard because it seems so little is known about it like you said! It sounds promising that he is considering another type of scan at least. Let me know what happens and I hope you're doing okay.

I'll try push for answers at my follow-up, they haven't gone down yet anyway since the laparoscopy and i'm doubtful they will...

X

[Laura2012]

Hi! I don’t really know anything about this type, but I just wanted to let you know that I was talking to a friend of mine only on Saturday night. She told me for ages she’d had terrible periods and then not long after she got married, moved out, and had some stresses along with these big life changes, she found she had lumps in her groin. The doctor tested for endo but eventually she found she had glandular fever, and the lumps were her glands swelling.

Now, that’s all I’ve got, and I don’t want it to confuse anything for you, but I’m just repeating what she’d had done.

Hope you’re ok. X

[Z_tz in reply to Laura2012]

Thanks, Laura. They did initially think they were swollen glands but I had glandular fever about 10 years ago and I'm certain it's not that. It's very bizarre but I'm hoping they'll get to the bottom of it one day! X

[Lulububs]

Hey

Yes i have no endo APPARENTLY but about 5 months ago i was at a physio session and she turned to me and said “‘do u know u have a lump here “ in pelvic area.

I didn’t but can feel it now.

So went to dr and she sent me for ultrasound, nothing to worry about apparently lymph can do this round that area but they think it was a general bloody fatty mass ....

It moves so it not cancer and as u it swells and gets more sore with period. So i hope this helps.

I was asked if i wanted another lap i said “ no thanku”!!!!

The more internal abdomianl scar tissue u get the worse pain will get as ur insides stick to scar tissue and i have enough trouble with my old scars

[Z_tz]

Hi nat94x and Lulububs ,

I wonderer whether either of you have heard any more from your doctor about your lumps?

Really hope things are looking up for you both xx