Inguinal swelling anything to do with endo??

[Lsimpson15693]

So I initially went to the GP with a swelling in my groin that only appeared when I stood up. It's been appearing for years but it only came out every now and again, maybe every couple of months. I could be on a shift and it would appear and 30 mins later it was gone and with no pattern it seemed. Other than when any pressure was applied, it wasn't painful. It just caused discomfort.Things changed suddenly and started to come out on a daily basis any time I was upright. Scared to cough or sneeze like it would pop if I did but still, it was mainly just uncomfortable. Then it escalated and I started getting immense pain that I can describe only as a, "Phone an ambulance you are dying" type situation. I was literally paralysed with pain if I got up for longer than 10 minutes.

The GP initially thought this was a hernia when I first went in but an ultrasound debunked this theory.

Turned out I had a large ovarian cyst. I just had surgery to remove it along with my right tube and ovary around 20 days ago.

The swelling from the surgery itself has pretty much subsided but as this went down, I noticed that the groin swelling was still there and behaving visually as it was before. I don't know about the level of pain it's causing as a stand alone issue because there is still pain from the surgery alongside this but I feel no change.

It was explained to me that my cyst was likely pushing on things and causing this area to bulge. But now I no longer have the cyst to excuse it and the swelling point is also quite a bit further down from where my ovary once lived. The incision was vertical and the closest area of the wound isn't anywhere near it and that's healed up pretty smashingly.

My doctor is great but I think he's going to be as confused as I am when I tell him tomorrow.

I was told after my surgery they had found endometriosis on their travels around my insides but only on my rectum and left ovary I think (it was day 1 still and I was very high on morphine when given this info). I don't actually know too much about it and haven't had a follow up with the consultant yet. I'm thinking they wouldn't have seen the area where the swelling is in the surgery, being focused on not spilling my cyst and all, so I don't know if this could also be an endo situation that got missed. But surely something this size would have been picked up on the ultrasound or MRI regardless.

If it's not endo, not a hernia and not a separate cyst then I have no clue and I right now I feel like I'm going to be practically disabled forever.

Has anyone ever heard of this being a thing? Or have any ideas of other things?

Any help would be appreciated.

Thanks in advance.

[TogetherWeAreStrong Moderator Endometriosis UK]

Hi Lsimpson15693 I am so sorry to learn of this issue you are experiencing, I have never heard of it before, but you have come to the right place for answers.

Endo warriors, have any of you experienced this and can shed any light on it for all of us.

Take care of yourself and please keep us posted 💚

[Lsimpson15693 in reply to TogetherWeAreStrong]

Thank you After I posted this I found a couple people talking about a rare situation of inguinal endometriosis a few years back. I'm not sure if this is a possibility and I don't think the person had posted about any resolve of the matter. But it kinda helps settle the mind when I can name it or pin it on something. Will definitely update when I found out, just incase this happens to anyone else!

Take care thanks again

[Keepondreaming]

hi Lisa

Is it possibly still swelling from the surgery? Or just a thought… but could there have been some lymph node disturbance from the surgery and it could be an element of lymphoedema? Maybe something to suggest. It’s had to understand without been able to visualise. I hope you find the answer you need xx

[Lsimpson15693 in reply to Keepondreaming]

Thanks for the reply! I don't believe it is the surgery, I can see the slight swelling I have around the wound itself but that's there consistently, the groin bulge is the exact same as how it was presenting for years before my surgery, not always there. It's like it swells and deflates depending on how long I stand or certain movements maybe? It's so hard to describe. It's basically on the right side of the Mons pubis, if I lifted my leg it would touch it basically. Everything about it told my doctor in was an inguinal hernia, in fact 3 doctors thought this. He also had a feel around at the beginning checking my lymph nodes, did bloods, didn't detect infection or anything being abnormal and then all fingers pointed to the cyst leaning on stuff as the cause.

I'm just confused and I think my GP can't do anything other than try and help with the pain management.

Not sure how long after a surgery it takes for a consultant to phone with the results of biopsy and such to ask for any advice there. I will have a look at the lymphoedema you mentioned see if I can spot any links!

Thanks again 😊 x

[Keepondreaming]

oh it sounds complicated. I hope you get some answers soon and it resolves!! Get well soon xx