still so much pain..

[reese28]

Hello Ladies I stayed in hospital for 4 days to removed my endometriosis I still have a catheter for another week here's my result:

Discharge Diagnoses: Endometriosis of ovary
Endometriosis of rectovaginal septum and vagina
Endometriosis of pelvic peritoneum

Discharge comments: Electivel laparoscopy, extensive adhesiolysis, excision of rectovaginal Endometriosis, bilateral ureterolysis, right salpingectomy,partial left salpingectomy,cystsocopy, insertion and removal of ureteric stents, and hysteroscopy on 3/10/14

Post ob Hb 107
Failed TWOC and discharged home with urinary catheter in situ. we will book OPA with urogynae clinic for TWOC in 1/52


I make a note for my questions for my surgeon I want to chat with him but he only visit me for 1 min. I told him about pain after the surgery I have a tube in left side for drainage the blood inside I have a funny noise in my stomach gargle inside I feel blocked and very weak after the surgery my worries is the pain same as before, but he said they removed all endometriosis and wait for completed healing about 3 to 6 months I know I'am in a good hands but of course I am paranoid I don't want to have pain again..I ask him how severe my endometriosis he said more than severe they filming my inside, I'am so much pain this is my 5th day after my operation I feel very weak, tired, I can't eat I want to stay in bed whole day its hard to move because i still have catheter till 7 days i hope this pain because of the operation not endometriosis..that why I get worried I don't want in pain in my whole life :'(

[Prosecco]

Hi Lulu
Just read your post can you tell me who your surgeon was & can you confirm if she used excision rather than ablation? P.S. I know it was in 2010 how are you now? Many thanks

[ticked]

I am here if you guys need me. :) You will get through this I promise.

[reese28]

Thank you Lu, for your support..

[lulu747]

Hey Reese-
Me again.  Just to give you some hope.
In my last surgery in 2010 I was worst case scenario.  I had so much endo she removed my entire pelvic wall, excised off my bowel and bladder and all around my ovaries.  I was pain free for 3 years (:  This time I only had two nasty spots so was downgraded from Stage 4 to Stage 2.  Never lose hope.
Stay in bed and rest.  The more you rest now the faster you will heal and get back to the business of living (:
Lu

[reese28]

Thank you ticked Mr. Alfred Cutner & Mr. Ertan Saridogan they are my surgeon at UCLH I have 2 laparoscopy with them yes they are good surgeon I talked to Mr. Cutner after my surgery he said they removed all endometriosis and they record my operation he said my endometriosis is more than severe, I hope I'am pain FREE soon.. even we know that no cure for this disease, sad to say Mr. George Pandis his dead early this year.

[ticked]

I have two amazing Endosisters in the UK if you are interested in talking to them? I can give you their contact information on twitter and facebook if interested. They are the sources of all information. Love them :)

Here are a couple of places near you


Dr. Elizabeth Ball, Mr. Emeka Okaro & Mr. Colin Davis

Barts and The Royal London Endometriosis Centre*,
The Royal London Hospital,
Whitechapel,
London, E1 1BB
T. 0207 377 7000  

*BSGE accredited endometriosis centre

Most Endosisters seem to be sent here as I have heard of this one many times

Mr. Alfred Cutner, Mr. George Pandis & Mr. Ertan Saridogan

UCLH Endometriosis Centre*,
University College Hospital,
235 Euston Road,
London, NW1 2BU
T: 0845 155 5000

*BSGE accredited endometriosis centre

One of the girls I was telling you about went to Dr. Pandis but he past away this year if I am not mistaken but I still have heard good things.


Mr. Alfred Cutner & Mr. George Pandis

The Edward VII's Hospital Endometriosis Centre,
King Edward VII's Hospital Sister Agnes,
Beaument Street,
London, W1G 6AA
T: 0207 486 4411


Mr. Funlayo Odejinmi & Mr. Dilip Visvanathan

Barts Health Endometriosis Centre,
Whipps Cross University Hospital,
Leytonstone, London, E11 1NR
T: 0208 539 5522

[reese28]

Thank you Thicked I live in City of London Hackney, yes I joined facebook Endo. UK / healthunlocked UK , I read many advices I feel better I know I am not alone, before I don't have any Idea what endometriosis my first post here I ask endometrioma and you answer me I have moderate to severe endometriosis, you really help me a lot and you push me to go endometriosis specialist I fallow all your advice,I keep saying to my GP please can you send me to Endometriosis Specialist,I have 2 laparoscopic you are right I have severe endometriosis thank you so much to your advice and keep pushing to go endo.Specialist..Thank you! Reese

[ticked]

You might want to read more of my blog because yes we are a like. I have contemplated suicide since I was 15 yrs old and was hospitalized a couple of months ago because I was having visions of slashing my wrists and I couldn't stop feeling that I was going to follow through.

It is understandable that you feel alone and I can't express to you enough that you need to join the Endometriosis community on twitter and Facebook as there are thousands of women worldwide that are online at all times to help anyone in need, even if it means to talk through the suicidal and depressive thoughts.

Let me know where again you live and I probably know some girls in your area and some meet up groups. These are vital because you feel so much better going to make friendships with girls that could potentially be there for you in years to come.

I started on twitter two years ago and that is when Endo was hot and awareness was being raised from all parts of the world. It was empowering. Same with Facebook :)

Let me know as my memory is gone as to where you live. I am thinking St. Louis LOL.

[reese28]

We are same problem of endo.very severe same kind of surgery also I have also tube in my left side for drained inside, they scan my bladder was 600/600 they put back my catheter for another 7 days its very hard to move I want to stay in bed very tired and so much pain, I wish I don't get any infection when my catheter remove.

[reese28]

I'am very relate to your blog, your very strong woman, I'am not like you sometimes I want to give up or end of my life because of pain I lose everything because of this disease and no one can understand its true pain change you,I feel alone I'am only 29 years old with severe endometriosis I need to fight for this disease I wish I'am strong woman like you your very inspiring to all woman have problem of endometriosis..pls. don't stop helping those woman need advice like me Thank you..Reese

[reese28]

Thank you so much for information ;)

[ticked]

To give you some piece of mind here is my blog posting after my surgery. I had some of the things done that you did and I had the catheter in for 11 days. I will give you a couple links from right after up and a couple after if you are interested to ease your mind. If you feel something is wrong though, you know your own body, take yourself to emergency. I did have a hyster but other than that I am sure you can relate.

http://endendoforever.blogspot.ca/2014/05/post-op-hysterectomy-endo-excision.html

http://endendoforever.blogspot.ca/2014/05/free-pee-endo-catheter-bladder.html

http://endendoforever.blogspot.ca/2014/06/hysterectomy-post-op-update.html