Diagnostic laparoscopy

[Edda13]

For as many years as I can remember I've been struggling with excruciating pelvic pain, extending to my legs and lower back. Missed many days at school, laying with my knees up my chest and crying in pain.Now it's not getting any better, I'm missing work days, my sexual life is ruined due to pain, can't train at the gym, go on my bike and I need a toilet nearby constantly.

A couple of years ago asked for a gynae referral and went on to have a vaginal ultrasound that came up clear, no sign of cysts, or any endo. The consultant was adamant in prescribing me the mini pill, but I don't want to be in hormonal treatment for a number of reasons.

I knew that the only way to get a diagnosis was having a laparoscopy, but I was not keen on that.

Now, after a number of years, I changed my mind. I feel pressure in giving it a name, basically because my work absences are creeping up and are sometimes sporadic which is not easy to understand for employers. I feel like my pain it's invisible, nobody can see I'm bent in pain for about 3 days and apparently seem to be fine after, when I have to be on painkillers to make to work.

I'm still frightened at having a diagnostic laparoscopy, I don't know what to expect, and the thought that they might not find anything is even scarier.

[Lindle]

A diagnostic lap is no longer the gold standard for diagnosis and can often miss deep endo. A scan can often see this better but only if done by someone with expertise at looking for it..

Taking medical treatment for years is acknowledged as a risk factor for developing deep disease down the line and lower back and leg pain (typically but not always the left side) are classic symptoms. It would be best to get a diagnosis so you know what you are dealing with.

Expert imagers are usually in endo centres and it would be difficult for you to get a referral without some evidence of deep disease, although endo nodules can often be felt during a physical examination which would then qualify you for referral. A quicker approach if funds allow is to have a private expert ultrasound. I'll dm you.

This post on the value of ultrasound might be useful:

healthunlocked.com/endometr....

[Awwy]

Hi Edda13

I am so sorry to hear your experiences. You can request an MRI scan. You dont have to have a laparoscopy.

Are you under a gynecologist?

First step would be to ask for a referral to an accredited centre.

BSGE endometriosis centre register

If you put that in Google and put in your postcode it will bring the nearest ones up.

The reason I was diagnosed via an MRI was because I kept collapsing from the pain and over 4 months id been taken to A and E 6 times. On my 6th visit i had a wonderful general surgical consult who ordered it.

I was told then that I had endometriosis that was very extensive and urgently referred to a consultant.

After 2 years on hormone treatments I had my laparoscopy 3 weeks ago. Its normal to feel scared and worry that they won't find anything. I think its because for so long we have been in so much pain and survival mode.

I recovered in a week. Have experienced some pain but now they have images and hopefully a better care plan for me.

Wish you all the best.

[Awwy in reply to Awwy]

It was a diagnostic laparoscopy not a surgery hence the recovery within a week.

[Edda13 in reply to Awwy]

Hi, and thanks for the reply. Sorry to hear what you have been going through. I'm not currently under the care of a gynaecologist. Last time I went, as the ultrasound was clear, they just dismissed my case and sent me home to take mefenamic acid and mebeverin. At the time I was tired of trying to be heard and believed, my consultant ignored the fact that I ended up in A&E twice or suffered several vasovagals.After that, I felt so lonely and completely ignored, and just endured the pain the best I could.

But I am determined to push for a diagnosis, it seems that there's more awareness of the condition and that empowers me to try again.

I'm seeing my gp today. I will ask to be referred to an endo centre as my symptoms are getting worse and lasting for almost a week. I really hope that a mri scan can show what is going on.

[Awwy in reply to Edda13]

Honestly don't let anyone tell you what you feel. It's your body you know your pain. Everyone's pain threshold is different.

It's really hurtful when you are dismissed because you wait and wait for the opportunity to talk to someone in that field.

I hope your appointment went well today.

[Edda13 in reply to Awwy]

My appointment went ok. But again I have to face another dissmisive GP. She pushed me into taking the pill 'to avoid a long wait for a procedure that is potentially risky and might damage my insides' I was flipping, I had to say to her that I've been suffering this for 30 years and I am aware of the risks, and that I wanted a referral to the endo centre in my town. Finally, she referred me but tried everything she could to persuade me giving up.

[Awwy in reply to Edda13]

So pleased you got the referral. 💜 Its a step in the right direction. 😊. Some research says that a raised CA125 level can be an indicator for endometriosis. Its a blood test that you can ask for. Hope you find the answers you are looking for.

[Colourbox]

Hi

I've been going though a similar thing mine gradually got worse i was diagnosed with Endometriosis. I went to see a private specialist who was Brilliant and gave the best advice for treatment and what was best to go through they suggested to laysopy/ mri if nessary so advise you to get advice on it first specially if your not certain and they can put your mind at ease about . I understand the not knowing what is going on and no diagnosis is hard I been throught same thing once you get it though its a relief and you can manage it.

Hope you get the help you need

[Edda13 in reply to Colourbox]

I'm so pleased that you finally got a diagnosis. It doesn't change anything in your body, but least nobody can suggest you're pain is psychosomatic, you are not making it up and you now know what to expect.Thanks for your message x

[Colourbox in reply to Edda13]

It doesn't change any thing in my body but there ways to help . I really do understand where you are coming from took me a year to get my diagnosis after many many different test . Oh I did get suggestions that my pain was psychomatic from my own gp. He was just suggesting it was all in my head or making it up so I went private and ask for other doctors options instead.

You will get there just ask for lots of advice it really does help.

I really do hope you get to the bottom of your problems and get results

If you ever need to chat about it just message

[Edda13 in reply to Colourbox]

Hi. Yes, it's just so frustrating being gaslit by your own GP! Attitudes towards women health hasn't change since I had my first appointment with a GP regarding my pains, can't believe they're still suggesting having children will ease your symptoms or pushing you into hormonal treatment, which I'm not sure what long term effects can bring.Definitely a diagnosis might feel like being finally validated. Hope you're feeling better now. What meds are you on? x

[Heloo85]

I can categorically tell you, no Dr can feel endometriosis! No manual can rule in or out Endometriosis! They can, however, do a vaginal, that allows them to feel ovaries for any lumps and bumps! Again, this does not rule in or out anything! Just means you have a cyst on the ovary, and until visualised either by imaging and sometimes only by biopsy, can that be determined to be anything more than a cyst! It could be a dermoid, functional or endometrioma! Unless that Dr is psychic, he’s guessing at best!

MRI seems to be the way they do it now! They no longer use laparoscopy, but again, it will only be a guess! Full diagnosis will never be made until once again it is diagnosed via biopsy! There’s obvious telltale signs, so they can differentiate but even still, official diagnosis comes from biopsy!

Best of luck in what you decide!

I could at one point grab my Fallopian tube, I can swing my mass of organs from side to side! I can also feel when my bowel is impacted! I can feel my mass on my ovary, but what you can’t feel is the extensive endometriosis I have growing INTO very many organs xx

[Misswah]

In regards to work, do you have an occupational health team you could be referred to? They can sometimes be very helpful in making managers understand you may have sporadic absences due to pain or suggesting adaptations you may need at work to help you manage your symptoms. They may also be able to do a disability passport for you - not sure whether you'd be able to get this without an official diagnosis but it's worth trying. Good luck with everything else, and please keep pushing until you get some answers!