Diagnosed with endometriosis

[Giraffe0210]

Hi everyone, I have a few questions about my diagnosis as I feel frustrated and still in pain!!!

Almost a week ago I had a laparoscopy which diagnosed mild endometriosis and was told everything else was fine. From researching online I believe that the amount of endometriosis doesn’t necessarily equal the amount of pain. In my case this is true as I have been in so much pain in my hips and my back and I’m just exhausted all the time.

So in my laparoscopy they found a small spot of endometriosis which was removed but I am still getting the same pain in my hips and my legs. I understand I am still recovering from surgery but my wounds are healing very well so I don’t believe it is from that.

I just feel very frustrated as I have now been discharged from the gynaecologist at the hospital but as there is no cure and it’s a chronic illness I feel like I have just been left. I don’t feel like I am being listened to about how much pain I’m in. I am struggling to work and therefore is affecting me financially! I have mentioned all of this but I feel brushed of just because they didn’t find much! Any advice would be much appreciated😫

[princessk09]

Hey, your internal wounds take around 3-4 months to heal so even though you’re healing externally, your organs are still healing.

Doctors tend to say wait 4 months to see improvements. I’m 3 months post lap and still have painful periods and pain in between.

It’s only been a week so you’re not gonna see any improvements and you will still be in pain from the trauma of surgery xxx

[Giraffe0210 in reply to princessk09]

Thank you for reassuring me🙂 I didn’t realise it took so long to heal!! The doctors didn’t give me any information like that so that’s been helpful!

[princessk09 in reply to Giraffe0210]

No worries, feel free to message me at any time if you need help etc xx

[Giraffe0210 in reply to princessk09]

Thank you I appreciate that🙂xx

[luthien]

hey it can take a few months, up to 6 for some, to recover from the op as a lot has been done inside, so usually doctors will say wait and see. You could book a follow up appointment with your specialist and see if you can have a chat about your concerns / worries; it may be difficult to book but keep trying.

Have you looked into physio for your hips and back? I found that I had backache due to the actual recovery from surgery - core is weak from the incisions through the muscles so my back compensates, much like women during pregnancy, hence it was all achey, and wouldn't flex well. My physio guy says he sees it so much in women, and if left it can cause referred pain in shoulders, hips, legs, feet, upper back and back as it affects posture.

[Giraffe0210 in reply to luthien]

Thank you for replying! Unfortunately I have been discharged from my consultant so I am not sure if I could still make an appointment. I have a doctors appointment with my GP this week and I will express my concerns then and see what happens.

I haven’t actually that could be worth doing, I’ve never thought of that! I do yoga which I find helps massively! Unfortunately as it is still quite uncomfortable I am unable to do it right now so that could be another option to look at! Thank you🙂

[luthien in reply to Giraffe0210]

GP is a start, hopefully they'll be able to discuss stuff, and have an idea of endo things. it took me a while to find a good GP that I could discuss endo with.

I do yoga too! I found though that upon having an assessment with my physio / mobility / posture guy my lower back doesn't flex but I compensate with my upper back so I can do the stuff but not brilliantly. I'd definitely say to look into it; they can do massage, manipulation and suggest strengthening exercises. I started back into yoga three weeks after op but I had to go slow, back to basics and learn what causes pain / pulls. if you could do the same that would be brilliant for confidence and working out what still doesn't feel quite right and what (hopefully) feels better

xx

[Giraffe0210]

I’ve tried a few different GP’s and haven’t really found a brilliant one to discuss endo with, a lot of them just put my pain down to infections and UTI’s but now I have a diagnosis hopefully they will be more understanding🙂it could take a while to find a good one though!

I find yoga brilliant on days where the pain is just awful! I feel like a completely different person some days🙂I honestly never thought of doing that but it sounds like it could be something positive! Would I speak to my GP about that? Xx