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

Endometriosis UK

72,903 membersā€¢53,260 posts

Anyone experienced this with excision and endo!ā¤ļøā¤ļøā¤ļø

Jenjen87 profile image
Jenjen87
ā€¢7 Replies

Hey all endo warriors šŸ™‹šŸ½

Hope your all doing well.xxxx

I havenā€™t posted here properly on my experience for a while. I always like to be positive, be there for others and be happy so havenā€™t really looked on here as itā€™s been a tough old time. Iā€™m here for anyone if they have any questions or need help.xx

I suppose Iā€™m kind of here to say dont give up if youā€™re still struggling after surgery and excision. This is a lot harder then I had imagined. Stay strong and find people who careā¤ļø.

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 šŸ˜‚ (although Arnie isnā€™t small just vascular šŸ˜‚, they gave some doctors terms I have no idea what it meant and inflammation is easier to say šŸ˜‚).

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.

Iā€™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 canā€™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 Iā€™m a polar opposite. I was like woman on a mission.

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

Itā€™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 itā€™s only 9 weeks after and I know endo is a chronic condition but this doesnā€™t feel just like endo. If anyone has experienced this any shout outs would be amazing.

Sending lots of hugs to everyone on here ā¤ļø.

Much love.

Xxxxxxx

Written by
Jenjen87 profile image
Jenjen87
To view profiles and participate in discussions please or .
Read more about...
7 Replies
ā€¢

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
Jenjen87ā€¢ in reply to

Thank you Hun. Not yet but I will definitely speak to them about it, booked in with themā¤ļø. 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
Jenjen87ā€¢ in reply toBee-74

Thank you loads, I will doā¤ļø.xx

Fooofs91 profile image
Fooofs91

Hello honey!!!!

It has ONLY been 9 weeks everybodyā€™s body heals differently for me personally Iā€™m still healing itā€™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 donā€™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 havenā€™t taken any form of hormonal treatment as of yet I want my body to heal properly first . Iā€™m currently taking tumeric everyday, ginger root and MSM powder ( supplements from Holland and Barrettā€™s ) read the benefits!!!!! P.s it doesnā€™t matters what Doctors say sometimes itā€™s YOUR BODY and it will HEAL itā€™s the biggest fighter ever!!!! XxxxxxX

Jenjen87 profile image
Jenjen87

Hello Foofs91, thank you loads for this, it sounds like itā€™s been a struggle for you too. It seems to coincide with my timings too, so youā€™ve given me hope ā¤ļø. I canā€™t wait for that day and itā€™s nice to hear you are getting there.

I will definitely try the diet, Iā€™ve changed a bit just got to sort a few other thingsšŸ¤žšŸ¼. Ok, I like that idea too, Iā€™ll still have a chat but i like your thinking because the docs did say 3-4 months, I thought I was there though šŸ˜‚šŸ˜‚. Youā€™ve done amazing without any hormone treatment. I did tell them I didnā€™t do well with hormones and they said itā€™ll be different so we see. Are you all natural?

Has work been ok, Iā€™ve been off about 2 weeks of the 9 weeks but they didnā€™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 havenā€™t tried that yet šŸ˜Š.xx

That last bit gave me goosebumps šŸ˜Š, 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 šŸ˜˜.

Hope your doing ok? Thank you again ā¤ļø.xxxxxxxxxx

BethanyAnn profile image
BethanyAnn

Hi Jenjen 87 šŸ™‚,

It sounds like youā€™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. Youā€™re not alone! I felt back to normal and continued exercising within a few months. Itā€™s different for everyone, youā€™ll get there šŸ™‚.

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 thereā€™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 isnā€™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 doesnā€™t cause you any trouble!

I hope you recover soon!

xx

Not what you're looking for?

You may also like...

backache after endo excision

Hi everyone, I had extensive endometriosis excision 5 weeks ago (from basically everywhere...
Mxc908 profile image
ā€¢

Stage 4 Endo and Excision

Went to see our 'second opinion' consultant regarding my Stage 4 endo and laparoscopy last night....
S-Joys profile image
ā€¢

Endometriosis severe pain 18 months after 4th excision surgery and mirena

Endometriosis returned after excision and mirena iud After 13 years of pain I was finally...
Lily1986 profile image
ā€¢

Laparoscopy and endo excision after care???

Hi guys My lap is in June but i still don't know about the after care and what to expect. He is...
amera profile image
ā€¢

Rushed into Hospital

Hi girls, Iā€™ve been rushed into hospital with extreme sweating, going hot and cold, being sick...
ali_cupcake profile image
ā€¢

Moderation team

See all

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.