Day Laparoscopy no Endo

[Amib]

Morning girls,

I am day 1 from my first laparoscopy, they didn’t find any endometriosis but found an inflamed bowel.

I just feel really disheartened that I have gone though all this pain for so many years and now it could be my bowel.

Has anyone had a similar experience.

I’ll just explain about some of my symptoms I’m having I am 27 and have struggled with pain in my left side for years since I can remember tbh. My mum has endometriosis too.

The pain is excruciating at times and find it hard to do anything but roll around the bed never mind go to work. I’m exhausted all the time and I am getting horrendous PMS symptoms. I am am emotional wreck most of the time. I’m having a heavy 4 day period and struggle to wear trousers when on my period with my bloated and painful tummy. I’m struggling to go the toilet when on my period and god forbid if I have a full bladder ouch!!!!

I also get nose bleeds during different parts of my cycle and the consultant said I may have Endo in my nose.

After my period I very rarely get a week before the pain come back because I’m ovulating. Then a few days where I’m actually me (even though I have this pressure all the time) i wouldn’t say the pressure is painful just like a ache all the time pushing down pain in my groin always on the left side.

Then the pms starts again and yep another hurendous period. It’s taking over my life!! And if I’m honest it’s getting me really down even more so no I have no diagnosis.

Has anyone suffered anything similar?

Is this a bowel problem or a gyne problem? I’m so confused.

Thanks girls

Ami

[Rowena82]

I had confirmed endo in 2010 where I had a lap and they removed endo deposit from my ureter. Yesterday I had another lap as I’ve been having pain on my right side (ovary) that has started radiating down the top of my thigh during ovulation and before bleeding also discomfort during intercourse and bloating , I had a previous tv scan suggesting inflation and cysts on the right ovary and also a raised ca125 . Unfortunately like you the lap revealed nothing just an inflamed bowel which really confused me as I eat quite healthily and have no problems in that department. I also have severe pms, but fortunately after exhausting many avenues, including the use of Gnrh analogs and hrt, I have found some relief from a combined pill.

I too am a little confused at where to go from here with regards to the pain I have been having, I have not been offered a follow up appointment as the lap was clear. 😳

What are you planning to do? Xx

[Amib in reply to Rowena82]

Oh we are in quite a similar position then.

Thank god the pill is helping for you though. It does sound like you have Endo but it’s soooooo hard to bloody find isn’t it.

I have a follow up appointment in 4 weeks with my consultant so I’m gunna try and get a list of questions to ask him before then.

I’m sorry you haven't had the news you wanted and I’d love to hear about how you get it sorted though xxx

[Rowena82 in reply to Amib]

Do stay in touch, it’s really disheartening isn’t it. I’m convinced I have it somewhere in there... unfortunately I couldn’t talk to anyone after the lap (only the nurse) and don’t have any follow up appointment either... sigh.

Let me know how you get on.

Hope you aren’t feeling too sore, I’m not great and alternating ibuprofen with paracetamol (I was discharged with no pain relief either)... Take care of yourself! X

[Endosufferer1 in reply to Amib]

Sometimes, endometriosis can be on your appendix. They need to remove it a and take samples from it and you'll see that you've got endo!

[Endosufferer1 in reply to Rowena82]

Sometimes, endometriosis can be on your appendix. They need to remove it and take samples from it and you'll see that you've got endo!

[Sarahlou23xx]

Similar position.

I have really bad bowel problems /lower back ache,urine troubles etc

Had a lap yesterday and all they found was a tiny tiny spot on my uterus which they said was that small it didn’t need treating.

My bowel was clear ,bladder fine,tubes /ovary clear,no scar tissue.

Been told it’s ibs causing the issues

I’ve been discharged with no follow up

[Amib in reply to Sarahlou23xx]

Oh that’s rubbish isn’t it!! And no follow up of awful!!!! You still have a spec even if it is small it’s still there! You need to chase the ibs thing up too but I would ask for a follow up for the Endo Defo.

But on a positive your quite clear so that’s good for the future. Xxxx

[Linley]

Hi! I have had moderate Endo and now confirmed IBS, All my menstrual life has been dominated with pain, heavy bleeding and urgent bowels movements more profound when I had periods, there is no question in my mind that because all our bits are in the same area( bowel, bladder and womb )problems are connected. The Laps and hormones got the Endo under control but.........if you have been told there was no Endo and you have been told your bowel is inflamed, then you have good reason to go back to your GP and ask for a colonoscopy to see what is causing the inflammation. It still could be an Endo adhesion but at your age you really need to find out now if there is a problem. Good Luck and let us know how you get on

[Panda098]

Same position. Had lap last week and was told no endo but had adhesion to bowel.

I also suffer from nose bleeds during periods (almost every month) but no doctor said it's endo-related and none would even though a Traditional Chinese Medicine (TCM) doctor told me it could be. So I'm surprised your consultant said it could be endo.

I'm waiting for my follow up with my doctor to discuss next steps. I was so confused when she first told me it's not endo as I have all the symptoms. She said it could be IBS. Does IBS cause all the same symptoms? I'm also trying to have a baby (been trying for more than 5 years) so would like some answers.

All the best

[Amib in reply to Panda098]

Yeah he’s brilliant my consultant I literally can’t fault him. Just a bit gutted I haven't got the answers I wanted however it’s good news and of IBS causes they symptoms I will run with it.

We have been trying for a baby for 1 year too and now I know there’s no Endo hopefully It mite work soon.

Good luck girly I hope you get sorted soon and get some answers and you get a gorgeous baby soon xxx

[Panda098 in reply to Amib]

Did your consultant say anymore about the nosebleeds and what can be done?

[lolo88]

This sounds very similar to what happened to me.

I had my first ever laparoscopy 5 weeks ago and similarly to you no endometriosis was found. However my consultant did find some adhesions on the left side of my bowel which connected to my internal abdomen wall (which she removed) and she also found some small fibroids the size of marbles.

I’m 3 (31 in 2 months) and similarly to you I’ve suffered from a pain in the lower right side of my abdomen almost daily for the last 20 years, most likely since I started my period. Like you it’s not painful as such but more of an ache or pressure that’s there constantly but it can be sharp at times too. I also suffer from daily exhaustion, brain fog and regular headaches.

When I’m on my period or am ovulating I also have awful abdomen and back pain, bloating, gas and pain when I go to the toilet or have a full bladder.

My consultant has told me that my next step in finding out what’s causing my pain and symptoms, is to rule out a hormonal problem and therefore she wants to put me into a 3 month medically induced menopause with monthly injections of Decapeptyl and HRT to relieve the symptoms. If my pain and symptoms reduce or go away during the 3 months, they can determine that it’s a hormonal problem and if my pain and symptoms stay, then I will be referred back to the bowel specialist who I’ve seen previously.

I feel so disheartened that I didn’t get an answer and a diagnosis from my laparoscopy and that I’m still in the unknown about what’s wrong with me. But I’m also scared about the next step in treatment as I’ve heard from other women who’ve been on the same drug that they’ve been so low and depressed and some have even had suicidal thoughts!

I’d love some reassurance that this doesn’t happen to everyone, as it’s the only way to rule out a hormonal problem.

Thanks for reading.

Lauren

[Amelie8]

Hi,

I really can relate.

I had my 3rd lap in November, checking for endometriosis . Doc said there were no "obvious" signs of it, what does that mean! However I had adhesions removed that where attached to my bladder, walls of my stomach and bowel. and my bowel was inflammed. I have had my right tube removed when I was 16 they never said why it was this way, and my appendix back in 2015.

Anyway I have had no relief from my symptoms or from the pain! I have some sort of pain every day, and it can just come on suddenly. It hurts alot to wee and poop mainly if my bladder is full or bowel is full. I have all the symptoms of endo, and one doc said I think you have it but it take a while to diagnose!!

I eat very healthy, cut alot of dairy out, have very little wheat or carbs.

I take CBD which helps I think. And I have a tens machine which really does takes the edge off. When it's mega bad dissolvable codine and paracetamol is the only thing that will touch it, but this is a last resort, as it can make you constipated.

Sorry I'm no help, just wanted you to know you're not alone! It's so frustrating especially when no one understands how it feels.

Big hugs.

X

[Arcticfo]

Of dear ... exactly the same but on a right side ... had all gastro tests - colonoscopy upper endoscopy camera endoscopy!!! Everything ok and awaiting my 1 st laparoscopy ... so hope they will find something if not I have NO IDEA what to do anymore .. I do endometriosis diets ibs diet low FODMAP diet no diary gluten , lot of herbs essential oils Castor oil infrared sauna tumeric you name it ..but to no avail , my ovulation its like jack the ripper in my ovaries intestines bum hip bones feel broken tailbone pain backpain trouble pass stool or gas and of so it’s painful and so on the list of symptoms is long , c125 is fine.. if I eat more fibre vegetables and get bloated pain gets worse .. I wasn’t told I had IBS by gastroenterologist so if they won’t find adhesions or endo will be gutted .. fingers crossed for u !!!!

[Genie100]

I have Crohns Disease and have exactly this left sided pain: it is worse after intercourse and before my period. I have been investigated by gynae because of irregular bleeding but they think all the pain is Crohns related. I would ask for a colonoscopy.

[Lofty1589]

I’m sorry to hear that! I had my lap on 4th June and was told absolutely NOTHING about what was found. My discharge letter said that I had a normal looking pelvis and evidence of Adenomyosis. It’s disheartening that no Endo was seen because I have so many of the symptoms

My periods have been awful since I was 13 (I’m 19 now) and there are times I pretty much cannot move - or remain conscious thanks to the pain! At the moment, I have horrible stabbing cramps in my pelvis every day, stabbing pains in my pelvic bones on either side and pain when I pee - if I have a full bladder, I feel like I can’t actaully empty it. Tramadol and Naproxen are taken daily with little effect on my pain which is great. 😶

5 weeks down the line and I have no bloody clue about what was seen or how I can feel somewhat normal. I have a follow up on August 15th which feels like forever away and I am so worried that they will just discharge me because they didn’t see any Endo despite me having so many corresponding symptoms that aren’t relevant to Adenomyosis

[Endosufferer1 in reply to Lofty1589]

I feel like you need to go to a private hospital.

[Lofty1589 in reply to Endosufferer1]

I’m not fortunate enough to have the funds to go private sadly. However, last year I did have another lap and Endo was found. Now on the waiting list with a specialist I trust to have it removed. Though, once again, it is a lot of waiting. If I had the means, I’d definitely go private but I just don’t.

[Endosufferer1 in reply to Lofty1589]

So glad they finally found it. 👏👏👏👏Did you change of hospital? Why can't they directly remove it when they do the laparoscopy? What stage is it?

[Lofty1589 in reply to Endosufferer1]

I didn’t change hospital but changed consultants after making a complaint as the previous one insisted it was all in my head and refused to help. It wasn’t removed in my lap because the consultant who did it wasn’t trained enough (it should have been my consultant doing the surgery but on the day, it was someone else). I’m not sure what stage it is but I have a nodule of my left ureter and Endo on my uterosacral ligaments.

[Glondon1]

I’ve had a pretty similar experience. Has my first lap on Tuesday and they said they found nothing and that it’s not a Gynae issue so have discharged me with no follow up. We pretty much have the same symptoms so I think a second opinion is best. Feel free to pm me x

[Anonabc]

Hi Amib, I wondered how your follow up went? I hope that they have been able to provide you with more answers/information.

I had a lap last week and they removed a couple of atypical superficial lesions from my uterosacral ligaments and also said I had an inflamed bowel, so now waiting for a follow up myself to see what this all means.