First lap with a BSGE surgeon - still in pain

[Wildfire_]

So this is my first lap and I’ve been diagnosed with widespread endometriosis. Quite a lot was done in my lap, all visible endometriosis was excised apparently and a couple of organs were unstuck on the left hand side.

prior to my lap I had severe pain and symptoms. My whole pelvis felt full, swollen and inflamed. The pain was always worse on the left hand side and they found endometriosis all over my uterosacral ligaments, pouch of Douglas etc.

I am 2 weeks post lap and have not had this miraculous experience that I see others talk about on the Nancy Nook group where they wake up totally pain free and knew the endo had gone.

I am still in a lot of pain, worse on my left side just like before the lap. My report says all visible endometriosis excised so I don’t know if this is normal?

My bladder is still not functioning properly. I still have gut issues. I don’t feel all that much different to prior to the surgery. Is there still hope that things will improve? I don’t know what’s normal.

[Tangoandmax]

Hi Wildfire, I’d say it’s much too soon to expect to see any significant improvement, you’re very much still healing at this stage. Sounds like you’ve had a bit done too meaning the healing will take longer. I’ve read a lot of bad stuff about Nancys Nook (I’m not on Facebook so haven’t been on myself) so I’d take it with a pinch of salt.

I had my first op 1st august with a BSGE specialist. I had DIE removed and organs detached from one another also. They told me to give it plenty of time I think around the six week mark I started to see progress, however my symptoms have persisted since and I now have a clinic appointment beginning of December. I also have adenomyosis which I’ve put this down to, have you been checked for this? Surgery is only a success for 8/10 people, I, like you (by the sounds of it) went in assuming I would come out completely fixed but unfortunately that hasn’t been the case. It’s incredibly frustrating but it’s so early for you. Keep resting and give yourself time. It’s hard to differentiate between healing pain and pain from endo so early after surgery and it’s incredibly hard to be patient but your body has been through a lot. Try not to worry just yet xx

[JOSANDY40 in reply to Tangoandmax]

My several laps over yrs only gave short-term relief from 2mths after the lap. Mostly a half improvement for upto a yr. Staying on the Zoladex helped more longterm. Unfortunately I am well bedded down now after 6 of these types of Ops. The bowel has become ridged so there's new issues there with digestion and emptying, the need for easier foods to eat, soluble fibre. Colitis and Diverticulitis.Things for you will improve once the inflammation and healing is better.

x

[Mhol752]

hey, I had superficial widespread peritoneal endometriosis diagnosed and excised in July and I’m currently on my second hospital admission due to endometriosis pain. Unfortunately surgery doesn’t always take away the pain, but fingers crossed it’s just you’re still healing x

[Hollymariaxox in reply to Mhol752]

Hey, I'm sorry to hear that! Sorry for just jumping on but out of curiosity what have they done on hospital admissions for your pain etc? I have been so close to wanting to go with pain but feel like they will fob me off 🥺😩 xx

[Mhol752 in reply to Hollymariaxox]

It is literally just pain management, I’ve put my foot down to not be discharged until it’s more manageable though xx

[Hollymariaxox in reply to Mhol752]

Good for you! I'm due to go doctors this afternoon again, god knows what they will say this time! I was so close to a&e last night 🥺😩 how long have you been in there currently? What are they treating your pain with? I wish you all the best 🙏🏻♥️ xxx

[Mhol752 in reply to Hollymariaxox]

I’ve been in since 14th November! Thinking of going home tomorrow though, standard paracetamol, codeine and oramorph. They’ve switched me from ibuprofen to mefenamic acid and started me on a new medication called Zyeqo today until I can have another surgery. Good luck, and if you are at the point of needing to go to A&E just go and don’t let them fob you off, make sure you’re seen by gynae at least! Xx

[Hollymariaxox in reply to Mhol752]

Oh good for you! I absolutely will be doing the same if I feel necessary! Thanks so much for your reply sorry if I sounded too nosey 😬 just nice to hear from others in the same boat as I'm just so used to feeling like I'm constantly being dramatic but it's just an awful pain to suffer isn't it 😩 wish you all the best ♥️ take care of yourself xxx

[Wildfire_]

thank you everyone! I feel very inflamed, sore, swollen and the pain is worse on the left hand side just like before my operation. As I have endo really severely on the left hand side and my ovary was stuck to my uterus. Which he freed.

[HedgehogMad]

Aw it's so hard, I really feel like they should give us clearer expectations! At my follow up the consultant told me six months for full recovery which would have been helpful for him to tell me beforehand! As I felt no improvement until about 8 weeks or so in. I'm now about 12 weeks in and definitely noticing improvement in pain, I've also started with a pelvic physiotherapist which has been brilliant and i feel this has accelerated my recovery. I'd definitely ask to be referred to a pelvic physio if you can. As hard as it is to be patient it does just need time to heal xxx

[Wildfire_ in reply to HedgehogMad]

I’m so relieved to hear this.

Did you see a BSGE surgeon?

How were your periods post op? I’m struggling. Just made a post

[HedgehogMad in reply to Wildfire_]

Yes my surgeon is our regional lead for our BSGE centre. He advised I stay on dienogest for 26 weeks post op so I haven't had a period yet! I've read though and have been told that the first three periods after can be quite rough as they are happening while things are still swollen and healing xx