I’m on the wait list for my first surgery for suspected endo and just wondering if anyone had any tips for coping whilst waiting? I feel so anxious waiting for a diagnosis even though all my symptoms point to endometriosis, experiencing so much pain but not knowing officially why is driving me crazy? Has anyone else felt like this, if so how did you cope?
I’m a single mum and finding it so hard to function on a daily basis, just desperate for any advice, for coping both physically and mentally with all the symptoms and waiting for surgery?! T
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Yellowmilo
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I'm not quite at your stage yet (I've all but been officially diagnosed, I've been referred to specialist when I am fairly certain I'll have to have a laparoscopy, but still waiting after being referred).
When you say you're experiencing a lot of pain but not officially knowing what it is - I related to that so much when my ultrasounds looked normal. Have you had an MRI? My MRI suggested endometriosis so much that I have pretty much accepted that it's endo. An official diagnosis will be great and will be the final confirmation but at the end of the day I know my symptoms and I know what my MRI has shown, so I do say that "I have endometriosis" despite not having the laparoscopy. It's definitely a mental thing because I felt so gaslit before and since the MRI don't feel like I'm going crazy anymore.
In terms of coping physically I wish I could help! I'm at a loss for pain management during my period but for the rest of the month, when I feel better but not great, I'm finding little bits of exercise here and there give me more energy and mean I can push through a little more - just a 10 minute walk here, 10 minutes of yoga there, etc. Not much individually but helps as a whole I've found!
Im not sure I can offer much advice, but I hear you. I had a laparoscopy at the beginning of December and kept thinking what if they open me up and find nothing, then what... I think it must be quite common. My situation was slightly different because whilst I had some pain with periods and ovulation, it wasn’t debilitating, but it has impacted my fertility and I had some atomical differences on the ultrasound . They found pretty extensive adhesions and a nodule. What I think I’ve learnt through this and other experiences is to listen to my body - it’s trying to tell me things and I’m not always listening. If you’re having debilitating pain it’s likely they’re going to find something. Be kind to yourself. Ashtanga Yoga has really helped me become more in tune with my body and also calms my mind. I hope you don’t have to wait too much longer and that you find some answers and relief.
Hi, did your gynae perform a hysteroscopy to check for any lesions or abnormalities at all. If not the perhaps ask your GP if they can put you forward for this.
It is a bit uncomfortable but in no way painful, a very narrow camera probe Alexa
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