When excision surgery doesn't work

[LWat]

Hi everyone,

I was wondering if anyone has had an experience where excision surgery didn't work and what happened next?

I had surgery 12 months ago and haven't seen any relief of symptoms. By endo standards my symptoms are mild but I'm still experiencing:

- bowel flare ups that can wipe me out for a whole morning

- almost daily groin / leg pain

- nausea

- fatigue

- extremely low mood during and after ovulation

- brain fog

- burning sensation in my pelvis

- pain during/ after sex

I'm at a bit of a loss really and was hoping someone could give me some advice on had experienced something similar? I have an appointment with my consultant on Friday so is there anything I should be asking? They repeated an MRI in November so I'm waiting on those results but not holding my breath on that one.

I'm at a point now where its really getting me down and I'm wondering if it's all in my head but surely it can't be!?

Thanks in advance

Lisa x

[Sarahfres]

I honestly feel the same way about my excision surgery i had back in May 2020, since then i am still in pain every month just like before despite them not finding anything major & doing a full clean out apparently. With me my endo pains are triggered by ovulation so basically i am knocked out & fully consumed by unbearable pain for days till my periods arrive & then i am back to normal.

I am at that same point so tired of all this now. Even on good days my body is just not how it use to be anymore i feel so weak and the fatigue is on another level I can’t even describe. No don’t think its in your head you are not alone i feel the same way.

I think its better to let it all out to your consultant explain the frustration with the symptoms and urge them to figure something out for your case or atleast help guide you in some direction as to what treatment you should get next. With my situation my dr & i both have come to agree that the best thing for me would be to get pregnant even tho its not a cure but still i am so desperate for anything at this point.

[LWat in reply to Sarahfres]

I'm sorry to hear you're going through the same thing but it helps to know I'm not alone. They said exactly the same to me too, that they had cleared everything out and he even said the stuff they did take out wasn't active so I just don't get what's going on.

Why did your GP recommend getting pregnant? My symptoms actually got worse after I had my little boy so I'm always curious as to why GPs recommend pregnancy.

[Sarahfres in reply to LWat]

He thinks that it can slow down the growth of endo meaning lesser symptoms but ofc nothings confirmed when it comes to endo everyones body is different.

In my case he thinks it can make things better for my quality of life.

I also just plan on having kids & then getting a hysterectomy even though that also isn’t guaranteed to relief pain🤷🏻‍♀️

[Heloo85]

I had excision 4 years ago.. And since been on 3 monthly consultations having just ultrasounds.... Just like you my pain never changed, actually got worse! Last 2 years was a joke!

I now realise, that pre diagnosis/excision, I was very lucky! I had excruciating back pain, but never leg pain... Post surgery my pain shifted down my legs... 2 years ago I started to lose the will to live, never mind walk! I was constantly told my scans were clear.. I honestly thought it was all in my head! Well 4 months ago I landed in A & E with a complex ovarian mass that had abscessed and a massive pelvic infection that ultimately caused sepsis! So MRI later, and I have nodules of Endo!

So fast forward 4 months, my abscess has gone, and I now have a very complex mass on that ovary that is suspicious, possibly malignant! I found out, while being made to feel like it was all in my head, my ultrasounds weren’t clear.... I was lied too instead! So now I’m in for hysterectomy in the next couple of weeks! I’m just waiting on one last emergency MRI then it’s rock n roll!

Don’t think it’s all in your head, and if they worsen further, don’t be fobbed off like me! Best of luck! Xx