Endometriosis returned already??

[Lmcphee]

Hi everyone,

First time posting here, but I have gained so much knowledge and hope from reading everyone’s posts, thank you.

I had my first laparoscopy March this year, and Mirena coil put in place.

My pain is a little better, but I still have a horrible pain on my left side that radiates into my hip and occasionally down my leg. The side where endo was removed in March.

Could the endo have returned already? Would they have missed some during the op?

I have my 3 month check next week, but if anyone has any advice or experience I would really appreciate it. Am I to expect another laparoscopy so soon?

Thank you in advance xx

[Lejay]

I am experiencing the same thing. I had my first lap in May this year and my left side was the area that had most endo and was worked on a lot in surgery. I am still not 100% recovered yet as my surgery was quite extensive and you are obviously further along than me in recovery (lucky you!). I have felt an improvement with pain and endo symptoms too.

But I am still also having trouble with the radiating pain on left side that is deep in my hip and pelvis and can be at best a dull ache, and at worse sharp and shooting through my hip, down my leg, lower back and sometimes up my abdomen and across to my other hip. Is that the type.of pain you have?

If so, then it is nerve pain. I was told it's nerve pain from my nerves being sensitized to the endo pain for so long (2 years). I was prescribed naproxen when I was discharged from hospital after lap but in my 2nd week post op check my gyno prescribed me a stronger dose of naproxen that was a slow release version because my pain was bad. I could tell the difference between what was endo pains that I had experienced before op, period and ovulation pains, recovery pains and what I now know as nerve pain. Took me a few confusing weeks to figure out what was going on with my body.

I had a bad nerve pain flare up early this morning along with severe nausea, and I am currently waiting for pain killers to hopefully kick in soon so I can move properly.

Have you been prescribed any anti inflammatory medication or anything to help in recovery?

[Lmcphee in reply to Lejay]

Thank you for replying! Hope you’re feeling better after your flare up?

Im not sure if it’s nerve pain as it’s still coinciding with my cycle, gets worse middle of the month and eases more with my (now sporadic) periods with the coil As well as being aggravated with bowel and bladder movements and exercise which is like I had before the op...

It’s nice you’ve been kept an eye on since your op though, I vaguely remember them telling me it was endo after I woke up after the op and that’s all I’ve had until my 3 month check now on Friday! Will be nice to get some explanations/help/answers!

[wanwood]

I doubt they would do another lap any time soon. If the endo is starting to come back despite the coil, it would still take a long time for the endo to be extensive enough to be worth operating on. I had a large endometrioma (8 cm) removed from one ovary last year, and I’ve had a lot of ovarian pain in the last couple of months. I’ve been so worried it meant the cyst had come back, because they can re-fill quite quickly. I had a scan recently and it turns out that what has been causing all of the pain on that side is a very tiny cyst that’s 2 mm, barely visible, and definitely not something to operate on. Pain can be seemingly disproportionate to what’s going on inside. I don’t know if that’s encouraging or not?!!

In terms of whether something was missed, if you were seen by an endo specialist it’s unlikely but it’s something you could ask about. There may be before and after photos.

I also wonder if your pain could still be recovery pain, your body’s probably still healing after 3 months ....

Best wishes and hope you feel better!

[Lmcphee in reply to wanwood]

Thank you for your reply, I’m sorry you’ve been suffering with your pain so much too it’s horrible that the amount of pain doesn’t correlate to what’s going on inside... but like you say, encouraging in a way as well!

I had this operation on the NHS, so as far as I know she wasn’t a specialist!

Have so many questions for my appointment on Friday.

Thank you again

[wanwood in reply to Lmcphee]

Thanks for your kind reply!

Just to reassure you, pretty much all of the surgeons whose area of specialisation is endometriosis work for the NHS! Some of them do private work as well in addition, but the expertise on minimal access surgery for endometriosis comes through training and working in the NHS.

Best wishes for your appointment on Friday! xx

[gdfzhkgukl]

That pain could be referred pain from the Mirena rather than endo. You could ask the doctor to check the position of the IUD as it may have moved to one side and be causing pain.

[Lmcphee in reply to gdfzhkgukl]

Thank you for replying I had my Mirena checked at 6 weeks and was in the right place at this point, and the strings seem to be in the right place still but you never know! My first one partially expelled itself so will defo be checking that on Friday in my appointment!

[gdfzhkgukl in reply to Lmcphee]

No worries. I was also told this pain could be cysts bursting since Mirena can trigger ovarian cysts. Just another thing to consider. Hope you figured it out and are feeling well