Worried about laparoscopy results - Endometriosis UK

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Worried about laparoscopy results

C765 profile image
C765
19 Replies

Hey!! I'm having a Laparoscopy 12th Feb and I'm starting to feel anxious about it, not necessarily about the procedure but the outcome of it. I've had bloods, smears, colposcopy, ultrsound and all come back normal and the last test is the laparoscopy and I'm worried this will come back as nothing as well and I'll still be in pain without a diagnostic or help. I struggle with painful periods, irregular periods (any time from 4-6 weeks), feeling nauseous and dizzy, painful sex, ibs symptoms, frequent urination, fatigue. Did anyone else feel like this? I guess I'm just fed up of not knowing why I feel like this and every other test telling me I should be ok.

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C765
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19 Replies
Amyjane88 profile image
Amyjane88

Hi hun.

I have my lap next week. I am not to worried about the laparoscopy. I am more worried what they will or will not find. I wish you the best of luck x

C765 profile image
C765 in reply to Amyjane88

I wish you the best of luck as well x

LouLouT profile image
LouLouT

I was exactly the same before my lap (12 days ago). I have pretty much the same symptoms as you and they found endo.

The week before my lap was the worst I was so scared, I wasn't sleeping I just couldn't stop worrying. People didnt understand and would talk about the lap like it's going to make my life so much better afterwards etc. But I know they were just trying to be supportive.

It's difficult because you're either told no endo and are referred for gastro investigations or they find endo but you don't know how severe or minor it will be. It's such an important moment that will change your life no matter what the diagnosis and it's ok to be afraid of that. What you have to try and remember is why you're doing this and that no matter how much you worry the outcome will still be the same (this realisation gave me some peace). Living with uncertainty when your health is involved is really tough but each day you're getting closer to knowing more.

Try not to beat yourself up, what you're doing is incredibly brave 💛

Xx

C765 profile image
C765 in reply to LouLouT

Thanks for replying, your comment has helped settle my mind a bit and your so right about any outcome. It's just a waiting game now. I hope your ok. Do you mind me asking what your symptoms were?

LouLouT profile image
LouLouT in reply to C765

The waitings the worst part especially when you've had to wait so long already but you're so close now.

Yeh sure, sorry the list is quite long...

Painful heavy long periods started when I was 11yrs. They used to last around 12 days but over the years the number of days I bleed has reduced but the pain has gotten steadily worse. Random bloating. Fatigue and random bouts of abdominal pain mainly right sided but it seems to move around, tugging, shooting, stabbing, stinging, burning, pain. I also get a cool sensation like someone's pouring water over my stomach. Lower back pain, rib pain only when menstrauting, bad hip and leg pain. Pain after sex/ slight bleeding. Constipation and diarrhoea.

In the past 2 years my symptoms have been getting worse and I developed new symptoms: pain in right shoulder, blood when having a bowel movement, very very painful bowel movements that are most painful when menstruating, severe diarrhoea like a stomach bug that can last for weeks at a time and then constipated the rest of the time, nausea, night sweats, severe abdominal pain that has been constant and much worse than before. Urgency to wee and and waking up many times in the night to wee, burning and stinging when passing urine (I've just been diagnosed with interstitial cystitis so not sure if this is to do with endo), insomnia which i think is because of being in constant pain, fainting/ collapsing due to pain (now I take painkillers daily I rarely faint now)..... I think that's it 🤔

I was diagnosed with IBS many years ago but im pretty sure I don't have it just endo and interstitial cystitis lol.

Xx

i'm in exactly the same boat, same symptoms and was terrified they'd find nothing, which they did. But honestly, it's not the end of the world, I cried and cried for days but now I've decided to be proactive about it. It seems odd to have all the symptoms but not endo, but I'm working on beating each symptom on it's own to see what's causing it, so am coming off the pill and doing pelvic therapy and taking note of when I'm in pain.

Before my lap I was in constant pain on the right side but now it's not so much, now I've noticed it doesn't actually hurt any more and there are ways I can improve it. Painful periods are a thing I've just sort of accepted due to my tilted womb, and painful sex is something I've been working on for 4 years and starting to see improvement!

Often the answer can be something simple, or it could be endo, even if your lap comes back negative, it might have been missed, but don't let it get you down, there are always other options x Good luck!

C765 profile image
C765 in reply to

I bet it was frustrating for you! I'm glad your starting to find other alternatives to help. Did you have an internal examination by the guarnatolgiest before? I had one last week and it made me cry out in pain and I'm not sure what else could be causing that

in reply to C765

Yeah I had one too, but it was delayed a year til my vaginismus had improved as I was told they wouldn't offer me one unless I was sexually active, but the scan was to find out why we couldn't be because it hurt so much! I've been using dilators for 4 years and we still can't have 'proper' sex, I think it's just one of those things, especially if you hold tightness in your pelvic floor as a reaction to stress of pain from endo. Mine are just naturally tense 24/7 which was causing all the pain in my pelvis and during sex, starting to relax them has made me realise just how much they were tensed! Might be worth asking about it or vaginismus when you next see the gynae x

Puttingonaface profile image
Puttingonaface

I'm in same boat have my lap in a few weeks and I swing from certain they'll find the worse case of endo they've ever seen to nothing at all and tell me the pain is all in my head.

C765 profile image
C765 in reply to Puttingonaface

This is exactly what I've been like as well. It's so frustrating and I'm over thinking everything. Just can't wait for it to be over with and hopefully have some answers. Hope everything goes ok for you.

Islandgirl01 profile image
Islandgirl01

Heya! I know this Post was written a long time ago, but I relate to it so much and with my lap next Wednesday I wondered if you could update me on what your outcome was in the end? Did they find endo? Xx hope you don’t mind me asking! I’m so nervous now that it’s so close!

C765 profile image
C765 in reply to Islandgirl01

Hey! Yeah they did find endo on my bladder, bowel, womb and back of the vagina. But even if they didn't find endo there are other things it could be such as adenomyosis or interstitial cystitis, so there's always more to investigate. I hope it goes well and wishing you all the best with recovery. Any question feel free to private message me :) I know it makes it easier to talk to people who understand xxx

Islandgirl01 profile image
Islandgirl01 in reply to C765

Aw honestly from the bottom of my heart thanks so much for the reply and update! So glad you got some answers, hope I can too. You’re right, just feel like I have everything pinned on this but need to remember it’s not the only answer. Thanks that really means a lot. Xx

C765 profile image
C765 in reply to Islandgirl01

It's so awful not knowing and then second guessing yourself. The pain you feel is real and try not to doubt yourself. If it's not endo then it's something else and just got to keep fighting for answers. Best of luck and let me know how it goes.xx

Msky profile image
Msky

Yasss. Before I had my LAP in February 2018 my symptoms we're the same as your symptoms. The pain was absolutely excruciating to where I would have to lay flat on my back and not move at all. It felt as if someone was taking their hand and twisting and pulling on my insides. Those are symptoms of Endometriosis. The actual only way to tell if you have Endo is by Laparoscopic surgery. For me 3 days after my surgery I stopped the meds I was prescribed and continued on with 800mg ibuprofen because the pain was not so bad from the surgery. I'm just glad I'm not the only person that had these exact symptoms now it is literally 7-8 months after my surgery and Endo is recurrent and I'm starting to have those awful painful symptoms all over again. I have heard alot of people say that Endo can't come back in that short of an amount of time, but I'm well aware of the exact same Endo symptoms and not just that but since my surgery every month during my menstrual I become so light headed, dizzy, and faint feeling that I do not want to move.

C765 profile image
C765 in reply to Msky

I had my lap in March to remove it and still have all my symptoms apart from ibs. They never really went away. Did you go on the coil, pill or anything after? I know a lot of people do cos it's suppose to keep endo away once it's removed but I'm trying for a baby so wasn't a option for me.

I keep going back to my guarnotologist cos I can't cope with it any longer. He thinks I could have adenomyosis but the only cure for that is a hysterectomy and I'm not doing that. Have you gone back at all?

Msky profile image
Msky in reply to C765

I have went back and I was prescribed letrizole 2.5 mg but it did not touch my ttc process. Still no pregnancy and still having those same Endo symptoms. ENDOMETRIOSIS sucks. I am now since July 2016 when I miscarried over 2 years and no pregnancy since. I've tried every different way plus some to conceive and it's just not happening. Everyone keeps saying if you stop trying it will happen, but I feel like if I stop trying I'm giving up on everything. All we can do is hold our heads up and have faith and hope on our side.

C765 profile image
C765 in reply to Msky

After two years trying you should be able to try IVF no? Endo does suck :( I'm going to a new guarnotologist at a specialised endo hospital so hopefully can get some help. My symptoms are only getting worse since my lap so I don't understand. My guarnotologist before said to not stress with ovulation sticks etc and to just do it every 4 days at least and that's enough, thing is most days I'm in pain or too tired or sex hurts to much to have sex that often for me, it's really annoying.

C765 profile image
C765 in reply to C765

Also so sorry to hear about your misscariage, sending lots of love xxx

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