Anyone experienced this with excision and... - Endometriosis UK

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Anyone experienced this with excision and endo!❤️❤️❤️

Jenjen87 profile image
7 Replies

Hey all endo warriors 🙋🏽

Hope your all doing well.xxxx

I haven’t posted here properly on my experience for a while. I always like to be positive, be there for others and be happy so haven’t really looked on here as it’s been a tough old time. I’m here for anyone if they have any questions or need help.xx

I suppose I’m kind of here to say dont give up if you’re still struggling after surgery and excision. This is a lot harder then I had imagined. Stay strong and find people who care❤️.

I was diagnosed with endo on the 23rd September, had what they could see excised, a burst fimbral cyst on my ovary removed, adhesions separated, endo removed off bladder, unusual and also endo on pouch of Douglas and potentially bowel, they made it very clear that they could only remove what they could see and no deep infiltrating endo, at this time my bladder was stretched and had inflammation of the bladder, my bladder is like Arnie basically, tiny and vascular 😂 (although Arnie isn’t small just vascular 😂, they gave some doctors terms I have no idea what it meant and inflammation is easier to say 😂).

The mirena coil was fitted to help endo and as said above stretched bladder to try and help that.

After this I felt like I was doing ok. Up and down but I expected that. However, 9 weeks in And i am pretty much immobile.

I’ve been in hospital and referred to by my gp. My pupils were one large and one small, sickness and vomiting, with brain fog, tremors, sweats, shakes, dizziness, blurry, faint, all the endo and bladder symptoms and the pain is so much more unbearable now. I had masses of symptoms. I can’t walk anywhere anymore and I feel like a 99 year old and they are more spritely. My blood pressure is low a lot but also has spikes of healthy every now and again.

This is insane. I would lift weights, walk everywhere, be buzzing round everywhere like a blue ass fly and now I’m a polar opposite. I was like woman on a mission.

Now I’m a no one, empty and I feel like again my body is giving up.

It’s scary, very, has anyone else experienced this after excision and coil? Or have any other things as above that went this way.

I know it’s only 9 weeks after and I know endo is a chronic condition but this doesn’t feel just like endo. If anyone has experienced this any shout outs would be amazing.

Sending lots of hugs to everyone on here ❤️.

Much love.

Xxxxxxx

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Jenjen87
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7 Replies

That does sound terrifying. I hope you can get some answers. Have you had the coil removed? That would be my first step if I were in your position.

Jenjen87 profile image
Jenjen87 in reply to

Thank you Hun. Not yet but I will definitely speak to them about it, booked in with them❤️. Hope your doing ok.xx

Bee-74 profile image
Bee-74

I agree with Jane! Remove coil. Hope this helps and you feel better soon. I felt pretty bad for about 13wks after surgery. Hang in there xxx

Jenjen87 profile image
Jenjen87 in reply toBee-74

Thank you loads, I will do❤️.xx

Fooofs91 profile image
Fooofs91

Hello honey!!!!

It has ONLY been 9 weeks everybody’s body heals differently for me personally I’m still healing it’s been 4 months but I feel a lot better , at 9 weeks I had the weirdest symptoms on and off like my urethra was painful and I still had the same exact pain of endo, I felt so hopeless so I changed my diet completely but honestly I think my body was just healing a lot slower. Give your body time to heal , Eat healing foods don’t give up my life everyday was me being a 99 year old but it changed slowly . If you want to remove the Mirena coil because you feel it may not be working for you then remove it their are so many other options but let your body heal first . I haven’t taken any form of hormonal treatment as of yet I want my body to heal properly first . I’m currently taking tumeric everyday, ginger root and MSM powder ( supplements from Holland and Barrett’s ) read the benefits!!!!! P.s it doesn’t matters what Doctors say sometimes it’s YOUR BODY and it will HEAL it’s the biggest fighter ever!!!! XxxxxxX

Jenjen87 profile image
Jenjen87

Hello Foofs91, thank you loads for this, it sounds like it’s been a struggle for you too. It seems to coincide with my timings too, so you’ve given me hope ❤️. I can’t wait for that day and it’s nice to hear you are getting there.

I will definitely try the diet, I’ve changed a bit just got to sort a few other things🤞🏼. Ok, I like that idea too, I’ll still have a chat but i like your thinking because the docs did say 3-4 months, I thought I was there though 😂😂. You’ve done amazing without any hormone treatment. I did tell them I didn’t do well with hormones and they said it’ll be different so we see. Are you all natural?

Has work been ok, I’ve been off about 2 weeks of the 9 weeks but they didn’t really do a phase in so that could be why too.

Ohhh that sounds good that stuff, going to keep reading it now.

I purchased cbd oil but haven’t tried that yet 😊.xx

That last bit gave me goosebumps 😊, so true. Since diagnosis though the docs have been so much better and listening. But you are right, they have a set timescale so we need to listen to ourselves 😘.

Hope your doing ok? Thank you again ❤️.xxxxxxxxxx

BethanyAnn profile image
BethanyAnn

Hi Jenjen 87 🙂,

It sounds like you’re having a really tough time! In my experience, it took me quite a few weeks after my lap to recover from the surgery and I also had a few trips to hospital due to complications during my recovery. You’re not alone! I felt back to normal and continued exercising within a few months. It’s different for everyone, you’ll get there 🙂.

I had the coil before I was diagnosed with Endo to deal with the pains and bad periods (which I had no explanation for at the time). I hated the coil. I had so many complications and it eventually got stuck trying to go through the lining of my womb so it was surgically removed. The doctors kept telling me that there’s nothing wrong and I need to stick with it until the coil has settled. I was just really unlucky but all I can advise is that if you feel the coil isn’t right for you or if it feels like something is wrong in your body. Get it removed ASAP and look at all the other options. Coils can work for a lot of women but they can also be very dangerous. I hope it doesn’t cause you any trouble!

I hope you recover soon!

xx

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