Endo symptoms worse after laparoscopy 6+ months ago. Is this normal?

[Corgilover]

Had a laparoscopy in June 2019 where they found considerable endo and adhesions. Said it was all removed. Symptoms have been even worse since surgery with virtually no improvements ever besides less pain during intercourse. Is this normal?

[Lou93]

Hi I had surgery in April last year I found my symptoms stayed the same I was on the depo injection before and still on this now, I went to see my gyne dr again a few weeks ago and he wants me to see a bowel specialist to check things as he said my endo won’t of come back that quickly, I get horrendous pains in my ovaries now and feel like I’m back to square one so your not alone, have you been back to see gynaecologist? X

[luthien in reply to Lou93]

Same advice as below, see if you can get a second opinion by asking to be referred to an endo specialist; general gynae don't always know what to do with endo as their training doesn't cover much of it and usually suggests "treatment" as hormones. Endo specialists will want to find out the actual cause, excise the endo and will know where to look including the harder to reach places while gynae will just look round the reproductive organs.

Endo does come back quickly for some women.

It is worth bearing in mind that some hormones have similar symptoms to endo listed as their side effects - it's why my endo specialist doesn't suggest hormones until 6 months after surgery so you can see your new normal then decide if you want hormones as they all come with side effects which could make stuff feel worse.

[Corgilover in reply to Lou93]

So sorry you are going through this. I did go back to mine but they keep pushing birth control, which never works for me. I always have terrible side effects, I recently quit it again after having a 7 week period. They have not been very understanding so I am looking to find a new OBGYN. I also once a month before my period wake up with terrible cramping in the middle of the night that comes before I have extremely painful diarrhea for hours so I was referred to a gastroenterologist. Unfortunately they didnt find anything that would be causing my symptoms. Since it seems to be related to my cycle I am wondering if maybe there is endo left on my bowels. Please let me know what you find out about your situation, best of luck.

[Lou93 in reply to Corgilover]

Thank you will let you know what they say x

[Lou93 in reply to Corgilover]

Hi I had my appointment with the bowel specialist and I’ve got have further investigations and a colonoscopy to see if they can find any issues with my bowel x

[Corgilover in reply to Lou93]

Best of luck! Let us know what you find out. Also just a helpful tip for your colonoscopy, apply diaper creme once you've started the prep and use Prep H wipes for a much more comfortable experience.

[Lou93 in reply to Corgilover]

Thank you I will do and thanks for the tips x

[luthien]

How was it removed? did an endo specialist remove it?

If it's removed by excision by an endo specialist then there could be other things causing problems; scar tissue affects some women, also yes endo can regrow but that's less likely with excision.

I would see if you can be referred to an endo specialist for a second opinion, it's your body, you know something's not right so don't give up - it's not normal.

[Corgilover in reply to luthien]

I believe it was burned off. It was done by my gyno. Thank you so much for your encouragement, it truly means alot. I have felt so confused and discouraged so when I read your words about knowing my body and knowing something isn't right it made me realize that is true and I need to keep pushing.

[luthien in reply to Corgilover]

aww

Yes definately get a second opinion with an endo specialist. Check out the BSGE website for a list of specialist centers near you then you can ask to be referred to one of those.

Burning isn't one of the best treatments to remove endo as it just takes the top layer off leaving the deeper stuff to regrow. A gynae also won't know there are other areas to check such as bowel and bladder, as their focus is the reproductive organs. An endo specilaist will know to check all the other more hard to reach areas when they know endo can be.

xx

[EndoEffect]

Hello,

I had my lap on 4th October 2019 by an Endo specialist at an accredited Endo Centre and some patches were ablated and some excised. I have felt no improvement since having my surgery and recently my symptoms have been worse. So I feel your pain. My symptoms aren’t so bad that I can’t work etc, but I feel uncomfortable and bloated and a full ache constantly. It seems to get worse at night. I’m actually currently sat in my doctors waiting room to see if I have a water infection and talk to them about this. I didn’t have a follow up after my lap which left me feeling very alone and unsure. So I’m hoping my GP with refer me for an appointment with gyne after I’ve been tested for a water infection. It could just be endo pain. Hope you get some help soon! X

[Corgilover in reply to EndoEffect]

Thank you so much. I am so sorry you are going through this, I hope you find answers! I also just feel bloated and achy with worsening pain at night. Please keep me posted on what you find out, hope things improve soon!