Confused with my body.

Morning Ladies,

So I have my laparoscopy coming up on the 28th August, I’m still on the POP Cerelle, I haven’t had any periods for so long, and I was admitted into hospital January of this year with severe pain.. still no diagnosis, hence the upcoming lap.

Over the last few weeks I’ve suffered with a constant dull ache.. and whilst at work yesterday experienced some really sharp stabbing pains in my tummy, I’d noticed some brown discharge but nothing major, I managed to get through my working day, but this morning I’m in a lot of pain and have started spotting! random for me..

I know something isn’t quite right, and my consultant isn’t overly keen on doing the laparoscopy as she feels it’ll be a negative result.. but I am right in wanting to investigate further aren’t I? Nobody should be admitted into hospital 3 days on the trot for unexplained pain should they? Morphine was the only thing that could manage my pain.

I’ve had numerous scans and transvaginal scans and bloods done, but everything comes back clear...

any advice or opinions welcome... x

[weekari]

Definitely trust yourself. Your instincts are telling you something is wrong, you may not know exactly what that is but that's why you're asking for the Dr's help. It sounds like your body is screaming something at you, you just need a bit of help translating it!

I wonder if you have a cyst that's rupturing? That would certainly account for the pain. I think I had one 2.5 years ago, I felt like I was dying, I'd never known pain like it. I didn't go to the hospital because I am a nightmare for getting help but I've since read so many descriptions that I'm sure that's what it was and I've recently been told I have another one.

I was also told my symptoms were unlikely to be endo. They didn't want to give me a lap but I wanted to rule it out. I felt like is being a hypochondriac as is made to feel like I was wanting unnecessary surgery out of anxiety, which really wasn't the case.

That was 2 years ago and in that lap, they actually didn't find endo but I've since found out I'm totally riddled with it, and have the cyst. This was all seen on an mri (which could be an option for you to request this, it's not the best way to diagnose endo but it would show anything severe or deep and a cyst of you have one) I'm just waiting on surgery now. I suspect I had milder endo 2 years ago which was missed and has since grown.

My advice to you is to just keep pushing. If you feel you're not being listened to, speak louder and complain (to PALS, every health board has a service). Trust your instincts.

I did not do this, after my lap, I was discharged and just managed things myself. I found ways to cope with the pain and fatigue (my main symptoms) but clearly my endo has grown like wild fire in a relatively short space of time. I wish I had fought harder.

Just balance the fighting with a lot of of self care. You need to really, really look after yourself. I suspect that many of us women with endo are not the best at this but really caring for yourself is key. This was a HUGE learning curve for me.

Good luck. X

[Willow16 in reply to weekari]

I have my lap coming up and im worried it will come back clear, what was your next step when it came back clear?

[weekari in reply to Willow16]

I was gutted to have no answers. I was discharged and felt like a bit of a fool for going through surgery that I thought was unnecessary. I didn't question the result. I kind of gave up on a medical approach and went holistic. I was told my fatigue and pain were psychological and I just accepted that (until very recently I was a psychologist), so I went to therapy, started meditating and practicing yoga and changed a lot of my lifestyle (eliminated chemicals from my home, using less beauty products, became vegan)... I basically did all the things I read could help with my health. I saw a chiropractor, who I still see and had helped immensely, tried reiki, acupuncture, reflexology and physio... I was open to trying anything. Although I believed that I didn't have endo, I thought that my hormones were out of balance so I worked to try change that. But my back pain worsened and I went to a physio who said I needed to see a Dr so that's how I went back to asking for medical help, got referred to orthopaedics and got my diagnosis. (I've since been referred to the endo specialist centre, I just haven't met with them yet).

I wish I hadn't given up so easily. Now I know it's important that laps to detect endo are done by a bsge qualified surgeon and now I would ensure that's who was doing my surgery, not a general gynae. I know now that the surgeon who did mine, who I'm sure is a great gynae, specialises in cancer and not endo and so is possible he missed it. I would also ask to see my notes after the surgery to see where they looked and if it was possible anything was missed. I didn't do any of these things but I would do it very differently now.

Just know that even if your lap is clear, it's not the end of the road. There are still many other options for you and its something you can deal with if that does happen.

I know it's really tough just wanting answers though, even if those answers aren't particularly pleasant ones.

[Hidden in reply to weekari]

Weekari, thank you so much for taking the time to reply! I’ve taken on board what you’ve said, you’re right.. it’s my body, I know when something isn’t right and I should push for some answers!

Can you think of any questions I should ask my consultant at my pre op?? xx

[weekari in reply to Hidden]

No problem 😊

The main thing I'd want to know is if they are bsge certified. I know it's awkward asking their qualifications but you have every right. Check their experienced in endo. If also want them to make sure they look where my problems are, endo can grow anywhere, for me, all my issues are around my back, so I'd want to make sure they looked there and not just my reproductive area (I don't have any issues with my period so it would make sense that my endo doesn't affect those parts badly).

I'd also ask about what happens afterwards with your after care and follow up. That seems to vary for folk and many are left coming back on here trying to figure things out.

Ask anything you're not sure about. No question is silly.

Good luck with it all! X