Laparoscopy yesterday - nothing found and feeling hopeless! Advice please

[Irishgal27]

Hi ladies,

I hope you are all well.

So I had my laparoscopy done yesterday. I am 27 and have been experiencing a range of symptoms for the past 20 months: pain during sex, heavy periods, stabbing pelvic pains frequently, IBS like symptoms, lower back pain, shooting leg pain and chronic fatigue. My gp (male) told me it was all in head and it wasn’t until I saw a female gp that I was finally referred to a gyne after a year.

I’ve had 2 ultrasounds and they were clear. The bloods my gp had done showed high iron levels. But they all suspected endo.

Yesterday I woke up from my lap in lots of pain and still out of it when the gyne came to speak to me about the procedure. He was a lovely man and seemed sympathetic but stated they found nothing, he showed me several pictures and that everything was clear. I started crying so the conversation was cut a bit short. I wasn’t in any state to ask questions. He had told me before the lap that if nothing was found I would be referred back to my gp (can’t wait!) and referred to someone to manage pelvic pain?

I am feeling so hopeless and disheartened. It took so much fighting and pushing to get my gp to listen to me in the first place and now for nothing to be found is just so frustrating. I regularly have to take breaks or leave work early due to pelvic pains and fatigue. It’s having such an impact on my life and now I’m in pain from the lap and yet still have no answers.

What do I do now? I’ve read a few posts of people in similar situations and wondering what people did when this happened to them? I’m not sure I can afford to go to a private endo clinic or that my gp would refer me following the negative lap. Any advice would be really appreciated. My family are trying their best to support me but they just don’t understand why I’m so upset that nothing was found.

Xx

[Loulou1994]

I’m so sorry to hear this, i know exactly how you feel as I also has my first lap yesterday and nothing was found. My symptoms are the same as yours and it’s incredibly frustrating as my emotions now range from confusion and embarrassment.

I’ve had some good advice on my latest post so have a little look.

My next step is to push my GP to refer for an MRI to look for Adenomyosis. And then my mum is going try and pay for me a private specialist for endo in my local area just to get a second opinion. I’ve heard a lot of general gynaes miss endo then specialists go on to find.

Stay hopeful, we both know our bodies best and I know that something is wrong!

Xx

[Irishgal27 in reply to Loulou1994]

Thank you for your reply. Totally right - my emotions are all over the place.

Thank you - that’s really helpful. I think I will try for the same thing, hopefully my gp listens to me. I will look into a private endo centre nearby and see how much this would be.

So true. Thank you again, it’s so helpful to hear of someone else in the same boat as me.

Best of luck with your recovery! X

[Littlebirdy34]

Just wanted to send my support as there are many of us in a similar boat. I had a neg lap in March and felt very much as you do. My doctor has been amazing though and i am now under colorectal where ive just had a colonoscopy and ive been referred to urology for a cystoscopy. I have a plan as im aware that i havent been diagnosed so cant say its definitely endometriosis, i want to go through all my tests first and my doctor is willing to refer me to a bsge centre if they are clear.

There is adenomyosis which can cause similar symptoms so there are other avenues to go down. Also see a different doctor if you feel unsupported. Sorry i cant make it better but please know you are not alone x

[Irishgal27 in reply to Littlebirdy34]

Thank you for your kind reply. That’s good that they’re sending you for other tests and willing to refer you if nothing else is found.

Just wondering when you went back to your doctor did you say you still felt it could be endometriosis or how did you approach it? I think I will switch gp’s as mine is a disaster. Thanks for the advice. It’s so helpful and comforting to know other people are going through the same thing X

[Littlebirdy34 in reply to Irishgal27]

Yes i went back and said i was unhappy as i believed i wasnt checked everywhere, she then wrote to the surgeon to ask exactly where was checked. I have also got copies of my photos from the hospital. I get rectal bleeding on my period and my doctor is pretty certain it is on my bowel and i asked her if after all my tests i still have no idea could she refer me to a specialist centre and she was more then happy. I think im extremely lucky to have her behind me as i feel she believes me, i will say though that i did have a horrible experience with a gynea who just didnt listen to what i was saying. Its been tough as im forever at an appointment being prodded and poked but im determined to get to rhe bottom of this. I came off the pill last year and thats when my issues got very bad and it effected me mentally as well, i need to keep fighting and i feel really determined x

[Irishgal27 in reply to Littlebirdy34]

Well done for being so determined! It takes a lot to push for answers but it’s inspiring. Thank you for the advice. I have booked an app with my gp for next week so I will speak to her and hopefully this goes well and she will refer me to a endo centre for a second opinion x

[Littlebirdy34 in reply to Irishgal27]

Lots of luck to you, let me know how you get on x

[MaloushkaPat]

Hello!

Totally know what you feel as I had a negative lap in December under general gynae! They fobbed me off and sent me back to my GP who was really supportive but didn't realize know what to do with me... I decided to pay for a private consultation with an endo specialist not far from home and he referred me back to his NHS clinic and now I am awaiting for a surgery date for a second lap! He also has other options for me (i.e. Potentially adeno) if he doesn't find anything at the lap and a whole plan following the outcome of this second lap!

Don't give up, if you are in pain, it means something is wrong and needs to get to the bottom of it! Xx

[Irishgal27 in reply to MaloushkaPat]

That’s good, the specialist sounds great and good to know he has a plan depending on the outcome. Wishing you the best of luck for your second lap. I hope you get a date soon.

Just wondering did your gp need to refer you to the endo specialist? I live in London and most endo specialists I’ve looked into require a gp referral so I’m afraid if my gp won’t refer me I might have difficulty getting an app.

I definitely won’t, thank you. I know in myself that something is not right. Once I’m recovered I will keep pushing for answers. X

[MaloushkaPat in reply to Irishgal27]

So when I booked for my private lap, I had to get a referral letter from my GP but as silly as it sounds, as I was paying my GP just did it straight away. After I had my initial private consultation, my consultant private secretary just liaised directly with my GP surgery so I could get the NHS referral through to his NHS clinic

[Irishgal27 in reply to MaloushkaPat]

That’s great. Thanks for the info! Fingers crossed my gp is as helpful. X