Suspected Endometriosis

[VioletCoffee]

So I have suspected endometriosis, it’s something I’ve suspected for a few years now and I’m only just getting somewhere with hopefully getting a diagnosis. My aunt has it, so that gave me an inkling it could be that. I’ve tried many different contraceptives, but as I get migraines my options are a lot fewer and I only have the implant left to try. It’s quite scary that I’ve nearly run out of options and I guess it’s just confirmed to me there’s something wrong.

Over the past year especially, my pain has become unbearable and I get consistently get lightning bolts up there when I used to only get them during my period. My legs always get cramps and go almost numb (my symptoms get bad about a week before I start and they last till the end of my 7-8 day period). I just feel so alone and I like no one understands. It doesn’t help that despite feeling like I’m going to pass out 2 days before I get my period and during it until the end, but all my blood tests tell me I’m not anaemic. So far, every blood test has found nothing. Although at my gynaecology appointment they found a cyst on my right ovary and said they weren’t going to do anything. I still don’t know if it’s still there (this was in May).

In my most recent appointment, my gynaecologist told me my symptoms check all the boxes and that if I don’t have endo, I probably have the one beginning with ‘a’ (I don’t remember the name). So I’m getting an MRI done, the implant and possibly look at surgery? But with the MRI, I’m scared they won’t find anything and I’ll be left with no answers. I’ve always worried the pain is just in my head but when I can’t walk or get out of bed, I know I’m not being ridiculous. But I’m also scared to be diagnosed and know I’ll have this condition for life. I’m only 21 and want kids, it’s just a very scary time…

Does anyone have any tips on how to cope? Or advice? I feel really alone as no one around me understands.

Thank you

[Pinkybow]

Hi Violet, So sorry you are really not good at the moment. The MRI should show up if DIE. I think it may be adenomyosis the Dr was referring to. I've got to a point now that I use a heatpad to go to sleep and pain pills from the Dr to keep me going day to day. I hope you get a diagnosis soon 💛

[VioletCoffee in reply to Pinkybow]

Thank you for replying! I use a heat pad too but have only ever been prescribed mefanamic acid for the pain which doesn’t do anything for me so I’m hoping I can get something new to try from my Dr ♥️

[Victoria111]

Hi,

I'm in a similar place as yourself. I had a confirmed ovarian cyst. It was being monitored and they sent me for bloods and an MRI scan. The ultrasound scan I had showed what looked to possible be an infection.

The MRI scan found that It was a chronic case of endometriosis on the cyst and it's putting pressure on my organs. I will now be having prostatin (I think they said) injections and I will be added to the waiting list for an larascopy. I find it hard to sit up for long periods, drive, wear trousers, anything that puts pressure on my stomach.

It's been really hard to cope I work and am a mum to three children. It's hard to do everything I need to do due to the pain and it's really affecting my mental health as its frustrating not being able to do things I want.

My GP has prescribed me naproxen which helps take down swelling and inflammation and it does take the edge off. I also have codeine and tramadol. I try to avoid tramadol as it knocks me for 6. The pain medications make it hard to function as I feel confused and slur and muddle my words. This is also hard to manage.

I'm hopeful that treatment will work but also scared that I will spend the rest of my life in pain.

It's really hard to process and deal with. My regret is not pushing medical professionals harder at the start as I have struggled for 10 years and like you have thought is it in my head... am I being weak... it takes its toll on your body and your mind.

Just know you are not alone and keep on at the doctors and consultants.