Overwhelmed by findings from diagnostic laparoscopy

[Kellt]

I had my diagnostic laparoscopy on Friday after a long road of symptoms and initial diagnosis of PCOS in my teens. I have stage 4 with bilateral endometriomas with quite extensive bowel and bladder involvement. I need an urgent MRI to get a full understanding of the bowel involvement, I am heading for bowel surgery and hysterectomy. My surgeon wanted me to have the implant prostap before I went home to induce the menopause but it was all a bit too much to take in in recovery. He told me to think about it.

Has anyone else experienced a similar journey? I’m a little feeling overwhelmed.

[Hidden]

I had a similar diagnosis after years and years of being fobbed off (first trip to the GP, final diagnosis at 38) by which time it was basically everywhere and I was told right from the off that I needed a hysterectomy and oophorectomy. I had that surgery in March last year at the big bsge centre in London and they also excised all the endo from my bladder, bowel and pelvic sidewall. It was an incredibly tough 14 months as I went through 3 surgeries and a lot of drug treatments but I am out of the other side of it now and doing well. If you have any specific questions please ask.

[Kellt in reply to Hidden]

Wow your journey sounds very much like mine currently and the surgery(s) I’m heading for. I’ll be 38 next month too.

Ive always struggled with periods but told it’s cramp etc... the bladder and bowel symptoms started about 3-4 years ago that just intensified. I really struggle to pass urine, like you, dribbling, no true urgency just a pressure that builds. I have to move my position around to try and get and get a decent flow but usually just long dribbles. I have to take Laxatives 2-3 days before being due on to minimise the pain and struggle to open bowels.

I was really overwhelmed in recovery when my surgeon discussed the extent etc... still am. I’ve got to get my head around it.

Really great to know you are through the other side and feeling better, this gives my some light. Thanks for the reply

[SEB88]

Hi, its a lot to take in, take time to think, research, may be go back and have chat with the dr.

My first question is, was ur surgery done at a bsge centre? If not please get referred to one as they are the only ppl recommended under the new 2017 nice endo guidelines.

A document worth a read is the ESHRE document, it is long but read the bits that relate to you. Dont be afraid to ask questions and get 2nd opinions, its your body no one can make you do things that you dont want. I wasnt happy with one drs plan saw a different one in the same team, the plan was the same but the way he explained and allowed me ask questions was better than the dictator attitude of the other dr.

And always feel free to post here x

[Kellt]

Thanks for this, I forgot to reply when I first read it. I read the document and it has opened my eyes considerably.

Thank you

[Magsiemoomoo]

I'm recovering from having my first lap surgery yday, had my left ovary, Fallopian tube and 2 cysts removed one was 7cm ish and they drained 900ml fluid from it in a bag before taking it out through incision. Also found clear endometriosis gluing my uterus to pelvic wall and bowel and surgeon excised all that too. I went in knowing he was removing the ovary and tube and cysts but while he suspected endo didn't know for sure.

Also have 5/6 fibroid in uterus one is half to 2/3 size of uterus and thickening of lining so he has taken biopsies of the endometrium lining as well as sending ovary cyst and tube tissue to be checked.

To be honest I have been in so much pain daily that after coming round from the surgery I felt great. Home at 5pm last night (in at 7:30 and first surgery).

Didn't sleep well last night due to pain in abdomen and shoulders from CO2 gas and just took one 30mg cocodamol until just now taken ibuprofen.

Not sure what stage my endo is as yet until I have my follow up with gynaecologist, he said he will edit my video of surgery (removing the gross bits) to show me what he found which I am looking forward to seeing. I told him not to bother editing 😂.

In quite a bit of pain today but overall moving better and not taking any more painkillers as they may cause constipation and no BM as yet.

I have had the monthly decapeptyl injections over the last 6 months, last one 23 Jan before surgery and taking HRT Livial as well but I think he will discuss other options at my follow up as not sure this is right for me.

Xx

[Kellt in reply to Magsiemoomoo]

Gosh, your surgery sounds very extensive.

Like you, I’m in the dark about everything until I have an MRI and follow up with the consultant. He said the endometriomas were kissing and stuck to the back of the uterus. He opted to drain them during the lap, I don’t know what, if any excision took place and I’d really like to know by from what I gather he wants an MRI to look at the extent possibly.

My symptoms are generally all on the right so he put 2 ports in my left, they have been really sore but much improved since last week. I have had more probs with my top port site because hey found a big umbilical hernia which made it a bit more tricky.

When I sneeze at the min it is really painful to the left of the top port site. Hoping that settles soon.

How did you find having the injections and the HRT?

Are you due any further surgery?

Hope you start to feel more comfy ASAP

X

[Magsiemoomoo]

Feeling a bit bruised and battered to be honest but I'm up and having porridge 😂! My surgery was on Mon am should have clarified as I am on Day 3 now but when writing reply last night I was in pain so it got a bit confused.

Didn't sleep well last night as very stormy and windy out and I was in a lot of pain as didn't take any painkillers (trying not to get constipated). I've come to the conclusion that was a mistake as I gave in at 6am and fell asleep when pain abated a bit.

The injections were okay apart from having more pain the first month after which is usual until they kick in. My pain definitely reduced from what it was but I was still having pain maybe 3-4days then a few days pain free and back again to pain. Some days it was hard to walk down the stairs but not sure if some of that was due to joint pain from enforced menopause or from my uterus being stuck in the wrong place and nerve pain?

You have to have the monthly injection in your butt and opposite sides each month as it can be a painful site afterwards. Not sure how much the Livial/Tibolone HRT helped or not as I was having regular hot flashes, they were horrible. I would be drenched in sweat in 5mins and it would carry on for up to 30mins, very often they would happen at work and I felt gross.

Not sure what the next step will be as depends on what the biopsies show I guess (hopefully nothing) and how he thinks we should try and manage my endo.

Sounds like you have been through the mill a bit as well but I definitely feel relieved to have some answers to what was going on inside me. It kinda makes sense with the pain I was getting. It is possible the uterus and fibroid may be causing issues but we shall see I guess.

Think I may bring a few packs of popcorn to my surgery screening 😂

Hope you feel better too and you get the answers and treatment you need.

Let me know if anything more you want to know?

Xx