Endometriosis UK
35,340 members • 31,458 posts

Had my first laparoscopy (19th January) 😞

Hi all,

I've spoken to a few of you in the past and just wanted to let you know what's happened. I've now been diagnosed with severe endometriosis (I haven't been told what grade yet) 😞 and interstitial cystitis which has resulted in my bladder being severely scarred and has cracked which part of the severe abdominal pain I've been experiencing. I cant say my gynes name but he has been phenomenal! He's called me a little warrior and been so sympathetic and kind throughout this whole ordeal. He's the type of person who lights up any room he's in and I feel he genuinely loves his job and helping people. He's given me a brief over view but has left me to recover over night before going in to more detail so we can discuss a plan because he needs to consult other specialists. He said he removed all the endo he could see but there is a lot on my bowel he had to leave so I will need further surgery(s).

I had an allergic reaction to something they'd given me and quickly deteriated after surgery but they managed to get it under control, flush my system, gave me drugs to - I'm guessing counteract it but I have no idea what but I'm now feeling much better. Anyone due to have surgery please don't worry this is extremely rare and even though I was scared the doctors acted very quickly and I knew I was in the best place and in the safest hands.

Once I have a full view of the situation I'll share this with you all. And if anyone has any questions at all don't be afraid to ask me. I might be slow at replying but I'll make sure to respond.

Scared for what the future holds for me but now I know it wasn't just all in my head and I'm not just "unlucky." I just wish I had been more persistent as I fear too much damage has been done now 😞

Keep fighting everyone, you are not alone 💛

Love to all of you warriors out there ❤️

Xxxx

10 Replies
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Hi LoulouT I hope you're recovering well. Take it easy and don't over do it, you're body has been through a lot. Good luck.

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Thank you, after another rough night I'm finally feeling better. Trying to stay positive ❤️ Xxx

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Oh I'm sorry your having a hard time. I have my first lap on the 8th and I am worr6what they will or will not find . Keep us posted on your recovery xxx

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Thanks lovely. I know how you must be feeling, it's not an easy place to be. Good luck with your lap!

I'm still letting things sink in and also regaining some strength but I'll do an update soon.

Xxx

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I hope you have a speedy recovery. Xx

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Thanks Kelly3322, I hope you're recovery well after your surgery. Xx

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Lou, you have literally gone through the exact same ordeal as me... I just had my first lap on the 22nd if January and I am still in so much pain.

Since I was 16 years old I have experienced terrible pain during my period, I’m talking fainting, vomiting, collapsing & taking extended periods off school & work. All in all, I think it’s fair to say I visited about 7 different GPs (including my own) all of whom said ‘it’s normal, it’s just bad cramps’. Fast forward almost 12 years later, I finally had a GP that sent me for a pelvic ultrasound, as it was becoming debilitating for me. Low and behold what I suspected to be true was: I not only had Endometriosis but I also had ovarian cysts and a blocked Fallopian tube. Unfortunately there is a lack of accuracy is the pelvic ultrasounds as they are yet able to identify the full extend of Endometriosis, it wasn’t until I had laparoscopic surgery on Monday that they found I have severe Endometriosis that had infiltrated my pelvis, ovaries, bladder, bowels & Fallopian tubes - some of this is now irreversible. Unfortunately there is a good chance this will now also have a significant affect on my chances of having a baby in the future. But I have the same concerns as you, I feel like no one really knows how serious and debilitating this whole disease is :-(

How are you managing after your lap? And are you going to get the bowel surgery? I also have to make that decision....

Xxxx ❤️

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Hi Ktorr,

I literally just commented on one of your posts about recovery post lap. I hope you're feeling better today.

We've had such similar experiences it's crazy! We're like endo soul sisters 💛

I'm sorry you've been through so much - it's really tough. Especially when people don't/ can't understand.

My gyne said I'll need to see a recto vaginal specialist and have a colonoscopy before making the decision. He said I have severe endo on the outside of my bowel, 3 small patches on my pouch of douglas and a rectal vaginal nodule but they need to see whether it's penetrated my bowel. I don't know what I'll do, it's a really big decision. I've got so much on this year and next year don't know how I'm going to find the time for everything 😬 Do you know what you'll do?

Xxxx

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Hi ❤️ Can I ask what your symptoms were post OP? I’m struggling with endometriosis and have done for the last two years, but I’m struggling to get any medical proffesional to take it seriously 😢 xxx

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I know how you feel over the years I saw maybe 7 different doctors all sent me for tests but all came back normal. I got labelled with IBS for many many years so I stopped going to the doctors because every time I went I was just given more information on IBS and sent on my way.

Doctors didn't take me seriously because I would have a flare up then be fine and I wouldn't always go to the doctor so they didn't know how bad it was. I then found a sympathetic doctor who had come across endo in the past and he referred me to a gynaecologist.

Symptoms really vary from each person. For me it started with painful long heavy periods (lasting around 12 days). Very severe abdominal pain that is constant, at first I thought I had a UTI but the pain got worse until I kept fainting/ collapsing in pain until painkillers got the pain under control. Diarrhoea and constipation. Blood when having bowel movement, severe pain when having a bm. Pain that seems to move around from my hips, ovaries, ribs, right and left sides, lower back pain, shooting pains down my legs. Pain when urinating and blood in urine.

Have you been referred to a gyne? If you haven't I would really push for it, GP's aren't qualified to treat/ diagnose endo. Hence why they don't recognise the signs.

Best of luck

Xx

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