Help: Laparoscopy booked- what if it’s not Endo?

[Tash28]

Hi there,

I am 23 and have been presenting which what I’ve read are the classic signs of endometriosis:

- intense hip and sciatic pain in the week leading up to my period

- finding it difficult to sleep

- pressure on my bladder

- different kind of pain depending on where I am in my cycle

- finding it difficult to be mobile at a certain time of the month

- feeling fatigued etc.

- not being able to carry our day to day activities especially before period

- being in so much pain around my hip, back and abdomen that I feel like I’m going to vomit

To be honest all of this has got a lot worse recently and has honestly made my life hell, using a lot of techniques I’ve read about on blogs I can keep myself relatively comfortable (pain level 3-5) on a day to day but this escalated when I sit in a chair for more than 45 minutes and especially the week before my period.

I went to my GP and now I am seeing a gynaecologist who also thinks it could be endo. I’ve had an ultrasound and specialist pelvic MRI which came back as normal. My gynaecologist (who also happens to be an endo specialist) has said he can say with a ‘degree of certainty’ that it’s not deep endo but could still be superficial, which can still cause extreme pain.

He asked me when I wanted to laparoscopy (October 4th) and also told me that he would take pictures and use either cold scissors or a robot scalpel (excision) if he found anything. He also said that if he didn’t find endo he would refer me onto a different department.

This has made me really nervous and uncertain. As weird as it sounds, I’m prepared for endometriosis. What I’m not prepared for is to go back to square one. My throbbing hips and back have really started to impact my quality of life and I find myself not being able to do what I want to do. I’m now second guessing myself and wondering if I should take the surgery if there’s doubt it could be endo?

Someone please give me some feedback but no-one really understands how unnerving this is. I don’t mind having the laparoscopy but then wonder if it will turn out to be pointless.

I just want to know people’s opinions or if anyone has been in this situation before?

- T

[kate24601]

I had a lap at the end of 2017 and was told when I came round that my insides were 'perfectly healthy' and I cried for hours. I was so convinced it was endo at the be back at the start was devastating, especially as the doctor told me there was no point following it up and then my gynaeo stopped being funded by the NHS and I had to go back to the GP for any issues.

It's been nearly 2 years and I haven't really got any further. I chose to come off the pill against all advice and honestly, that made me feel so much better as the pill and trying to supress my periods had been causing more pain than just letting them happen and taking things for the pain/bleeding. I saw a specialist in May who told me she is 100% sure it's endo but they aren't willing to do anything for me as I won't have the mirena put in and am planning on trying for a baby soon, so they won't try anything unless we struggle to get pregnant.

Whatever the outcome, there are hundreds of people on sites like these who have experienced the exact same thing and will have tons of helpful advice and guidance, and while it can be frustrating at times not knowing whats wrong, if you keep pushing and keep advocating for yourself, then there's nothing else more you can be doing x

[Tash28 in reply to kate24601]

Thank you so much for this answer- it has made me feel a bit better to know that people have been through it xx

[Amelie8]

Sorry to hear you are struggling! Xx

I too have been struggling for years. Since I was 11 years old, I am now 27.

I have had a fallopian tube removed at 16, no explanation why it was "mangled". Last November they checked for endo, but I had adhesions all over my bowels bladder and walls, not sure if they did look for endo or not or just put it down to adhesions. As they found no endo my gyn did not want to follow up. I still have the pain and struggle to walk when I'm bleeding. I have been back to docs since but in short he said I most likely have endometriosis but it can take up to 8 years to be found and diagnose. I'm trying to just live with it and help with diet. It can be very frustrating, but after 3 operations i don't know what's next. Does it have to be at a certain stage before it can be seen?

Sorry if they was not much help. X

[_EndoWarrior_]

When you say Endometriosis specialist...are they BSGE or Nook Specialist?

Those symptoms sound similar to what I had. Have had hysterectomy and excision of Endo August 12th so still recovering.

I had laparoscopy and then a Pelvic MRI which showed Stage 4- Deep Infiltrating Endometriosis and Adenomyosis.

They do say MRI’s don’t always pick up Endometriosis especially if it is early stages. I know pain can sometimes be worse for some in early stages too.

It could also be something else but if you have an experienced BSGE Or Nook Endometriosis Specialist looking after you I’m sure they know what they are doing.

Hope you find some answers.

[Rin9]

I know what your going through. I'm in the same boat. My sugury is September 20th. I'm kinda freaking. If it's not Endo what could it be? It's scary and stressful to even think about. I'm kinda actually really hoping it's Endo. At least that I know what is and how to deal with it. I wish you luck in your surgery.

[missusbroc]

You’re doing totally the right thing!

I didn’t present the classic symptoms of endo, my only symptoms were chronic pelvic pain and a pressure type feeling which spread up my lower back. ALL of my tests were normal, every single one (ultrasounds, blood, colonoscopy, urine etc..)For 6 months about 10 different doctors misdiagnosed me, I felt the only way to get an answer was to have a laparoscopy.

I decided to go private with a Nook doctor, he said there was a reasonable chance I have superficial endo. I paid thousands of pounds for the lap not knowing whether they would find anything or not. Just that I knew my pain wasn’t normal and this would be the only way to find out what it is.

Yesterday I had my lap and they found and removed endo from both sides of my womb, my bladder and the pouch of douglas.

As long as you have an endo specialist doing the lap then I believe that you can trust him to find the endo even if it’s hidden (: