Log in
Endometriosis UK
39,797 members34,233 posts

Back from 1st lap and have been in tears. No endo found. Currently in pain - my usual pain is overriding the surgical pain! What next..?!

Hi ladies.. hope you're all well.

So today I went for my first laparoscopy, which I have been waiting for for 5 months.

I've been experiencing dreadful pain; my right loin, lower back and just right of my navel. This can be searing, throbbing or burning in nature.

All my lap revealed, was adhesions to the appendix and small bowel. My surgeon is really good, but couldn't give an explanation for the above findings

The only positive that has come out of this, is having the Mirena inserted. I just hope and pray it helps my symptoms as I've had an much time off work.

If it does help, then surely there is some endo there??

If it doesn't, where on earth do I go from here?

The conclusion is, that I have IBS.. but my bowels are regular and non problematic.

I'm in tears right now and just conscious that my bf, colleagues and friends think I have a screw loose.

Many thanks to you in advance and much love. 💙

9 Replies
oldestnewest

Oh bless you! I’m just at the start of investigations and doctor believes I have Endo. I’m so relieved that someone is finally taking my symptoms seriously but do worry about them not finding anything and what my family will think of me. For this reason I’ll be very interested in the responses you get. I do feel for you, it’s my worst case scenario x

Reply

Hi Bex x

It was one of my worst fears too. And now I have to explain to work, that they didn't really find anything, after being off previously for 3 months! 😳

My bf is really supportive though and he's witnessed the pain that I've been in.

I really hope all goes well for you Bex, this site is more useful than seeing a GP IMO!

Will keep you posted with regards to my future investigations. Take care X

1 like
Reply

I’m in the exact same position as you and this is what is happening to me:

I had my lap three days ago and I’m in so much pain from that as well as my usual pain, so I understand what you’re going through! Right after the surgery, I was in so much pain and having bad reactions to the pain medication. This meant that immediately after the procedure, the doctor only talked to my mum about what she’d found, which was apparently just adhesions. When the doctor visited me the next day in hospital, she showed me some pictures which were confusing, and said that she’d found adhesions that she’d removed but no “active endo.” I didn’t ask all the questions I had so I’m glad I’ve got my post-op appointment in a couple of weeks. I’m so confused by how little they found when I’m in so much pain. I know the amount of endo doesn’t correlate to pain, but not even having “active endo,” which would help to explain my extreme pain, is really bumming me out. I also got a Mirena inserted and advised to also continue the pill, so I hope that helps me. I also hope that you feel better soon and get the answers you need too!

Reply

Hi Hannah

Sounds like you've been through the mill too!

So they removed your Adhesions? I wonder why she didn't remove mine? 🤔

And isn't it awful, having to tolerate not only surgery pain, but also usual pain too and not receiving a proper answer?

Let's hope the Mirena coil works for us as I've heard they're so effective.

Keep in touch and let me know how you get on. Xx

Reply

Im so sorry, i know exactly how u feel, i had my lap last july after suspected endo for over 20 years but when they went in absolutely nothing! A few tiny adhesions and i clot easy so i was put on transexamic acid which has worked abit but still in pain after.

It took me 4 weeks to totally get over that lap so to then b told nothing i felt like i had put everyone through years of moaning for nothing!

I then went to see a gastro as i was told it could b gastro so i did there diet they gave me for 6 months and it helped a little but not much, i was already gluten and dairy free anyway so it wasnt much diff to what i was already doing.

Then i went to see another gastro and she said “ have u had a xray or mri on ur back or hips” i said “ no i have no back pain it all in groin and pelvis “ but she was adament i had one.

So i toddled of round corner and had xray then upstair for mri and what do u know i had a bulging disk and minor desease in hip....

That was where all my pain was coming from... she said “ if it not endo and it not ibs which mine have all proved not to b then always check hip and back as it same kind of pain” and will get worse when ur on ur period as that area is heavier and bloated so puts pressure on ur back.

So i have been having osteo and physio for last 6 months and i am nearly 1-2 out of 10 for pain now.... i have flare up if im stupid but very rarely now.

So dont b disheartened.

Ur pain is real

It just case of figuring it out!

I also see a great womens osteo that deal with all the back and hip but she also deals with pelvis periods and adhesions....

Reply

Hey Lulububs!

Wow 20 years!!

That must have been an awful blow to you.

Very interesting to hear your story though, as I actually walk with a limp and feel like most pain is in my right hip and lower back.

Can I ask if you went private at all? I really can't afford to, but will be contacting my GP on Monday with regards to an MRI.

I'm just hoping that the Mirena works for me. But I'm going to push for an MRI anyway as I need some answers!

May consider an oesteopath too.. that's really something that had occurred to me.

Take good care and stay in touch. Xx

Reply

No i went nhs hence the 20 year wait for a lap 😂😂!!

The osteo i found just by chance she is literally at end of my road , what a blessing she is, as soon as i saw her she just went “ oh yeh ur back is knackered and ur hip” so i been seeing her on and off for about 6 months i treat myself now just once a month to get it all aligned and make sure it stays good.

I would NEVER EVER EVER have though it could b my back and hips as it always seemed to get worse during periods but they explained that! I just would never have thought.

If that gastro had not thought to give me xray and mri and explained it if not ibs or endo it can b back and hip as there all attached and surrounded by the same ligament and ur pelvic floor and muscles so if ur back or hip are out the most common side effect in women in pain in pelvis, groin, hip and can effect ur period and weeing and pooping!

Mine was so bad i kept weeing myself and i could not poop at all it was awful, the pain when i pushed to poop made me see stars but within 3 sessions of osteo it had gone?

So mayb try a osteo once there about 35 quid a hour and see how u feel after?

Adhesions will not give u that much pain aless they stick to a organ or muscle which they would have seen in a lap so i wouldnt put ur pain down to adhesions.

Reply

Did you have an MRI at any point? This can show endo where the lap does not. But I'm not sure if it can be done once a coil is in.

Adhesions can be caused by endo, did the surgeon remove the adhesions? If not then I don't think they can know what is sticking the bits together.

Reply

Hello!

I am in the exact same position! I had my lap last week, no endo found but I had bowel adhesions that were freed. I was in my usual pain the first few days, however 10 days post lap with the adhesions freed, I am feeling better than ever!

I was quite confused with the diagnosis as I could have ticked all the boxes for endo, however after doing some research the adhesions can cause very very similar symptoms of endo!

Maybe give yourself a few weeks to heal and rest and see how you get on? Ive been told that if I am any further problems I will be referred to gastroenterology.

My surgeon was a very skilled endo specialist and checked everywhere possible for endo so I do trust him and his judgement. At first I was kind of "disappointed" he didn't find endo but now I am very relieved and ready to move on. I am just staying a bit longer on this forum to look for adhesions related posts.

If you have any questions or just want to have a chat - let me know! Xx

1 like
Reply

You may also like...