Hi everyone, I am new to this. I recently have been to the hospital due to suspected endo. I had a laparoscopy which found my bowel

[Ren95]

was stuck to my stomach, but no sign of endo. They said they want to do another laparoscopy and still think I have endo due to my symptoms. My mum had endo and it took 8 years to diagnose and she had a hysterectomy, I just wanted to know peoples experiences and what they think is best.. Any advice is greatly appreciated!xx

[songbird27]

Hi Ren95 ,

I have lived my life with enodo and it is very easy to detect . If you have a laparoscopy done , then there is no guessing game . It can be seen very well and most Dr's who see it while in there burn it off. I have had my fair share of them , I even had a hysterectomy 3 years go and still producing mad amounts of it and I am on my way to a out of state DR next month . Ask your dr to show you pictures from your lap surgery . I have tons that show all the endo and after ones from being burned off. Mine has grown more rapid since I had my hysterectomy . I have pain in abdomen , stomach distention , pain that can be unbearable with or with out sex , during ovulation and during my cycle when I used to get them . If you have any feel free to ask . We are all on here searching for answers and hope for the unknown of this crippling disease !

[songbird27 in reply to songbird27]

Thanks for the reply and sorry im just getting back on here went through a bad depression spell. After talking to some I found out that burning it does nothing just gets the surface , it has to be cut out . We have the same exact symptoms. How do you cope with the pain and live a quality life ? Im at a all time low !

[Ren95]

I have all the symptoms of endometriosis and my surgeon said that he would need to do another laparoscopy because he only looked in certain places, he is 90% sure that I have endo but will need to do further investigations. Also my bowel was stuck to my stomach and is apparently abnormal, just waiting to see another surgeon now

[songbird27 in reply to Ren95]

HOLT !!!! Let me get this wright .... he was in there and was only 90% sure ? If that is the case you should look into a new DR. I am stage 4 and can tell you almost anything you want to know . Fact every time they go in , it causes scare tissue , that can be more painful then the endo it self. Do your research on Dr's before you let anyone cut into you again . Google Dr. Ceana Nezhat it will bring you to his website Nezhat Medical Center and it will tell you all you want to know and more. Even Fact verses myths . I will be traveling to see him soon .

[Impatient in reply to songbird27]

songbird- this is a UK forum- for endometriosis uk- a british charity. We are not permitted to name or discuss individual medical personel on this forum (regardless of nationaiity.)

Ren95- your surgeon, I'm afraid to say did you a dis-service, a lousy job if they operated as a diagnostic lap op and didn't look everywhere for the endo.

I suspect he/she is not a specialist endo surgeon- because they have called in a different surgeon and because they didn't spot the endo. The person you now need for sure is an endometriosis specialist colorectal surgeon - one who works on the bowel and can detach it from any other organs and spot endo and also remove that endo if it is found.

Your best bet is to push to get a referal to one of the accredited endo specialist centres around the country- where these colorectal surgeons who do work with endo, can be found.

The fewer operations you endure the better it is for your long term health - so ideally you need to be seen next by the right people to do a decent job removing any endo.

The list of endo centres is on

bsge.org.uk/ec-BSGE-accredi...

and the NHS guidelines for suspected bowel (recto vaginal) endo is on

england.nhs.uk/wp-content/u...

Read that NHS guidelines and you may need to print bits of it out to support you request to be referred to one of the endo centres. Stick to your guns- it's your health you need to look after and you certainly can do without any non-expert endo surgeons wasting your time having a peek and not actually doing anything about the endo.

Best of Luck

[songbird27 in reply to Impatient]

I'm sorry for that . How ever I am well aware this is a UK site . Exactly why I picked to join it. I have duel citizenship through my husband. My step kids , in laws and best of friends are there in the UK . I was hoping to find advance treatment . I didn't mean any harm by bringing up a US Dr. It was just something interesting about fact and myth . I will have a look at the rules for future reference. If there is a link that has answers to this crippling life , I don't think it should matter . I was just trying to be helpful. And My husband and I are very helpful loving people. We give money to UK charities and Us charities . If it will make you feel better I will give to this one. xx

[Impatient in reply to songbird27]

It's not my rule - i am not employed by the charity. Endo UK the charity posts reminders on this subject periodically - and the volunteer moderators do delete posts found to contain names of individuals - that's why I was reminding you not to do that 10 months ago. There is a 3 strikes and your membership is cancelled - so it's worth taking note of that as explained in one of the EndoUK posts...

The posted the following 11 months ago - 1 month before your post was added.

healthunlocked.com/endometr....

The charity is running on a very low budget indeed. One legal objection by some individual being named, and the legal fees could wipe out the charity - which does none of us any good. So that's why you get reminded not to name names on the public forum. You can still use private messaging to send your recommendations or warnings of bad experiences to fellow members if you need to pass on such information.

When you sign up to the forum there are terms and conditions to read through which states the not naming of individuals. I didn't report your post - because that would mean your 1st strike - so you can still edit the post to remove the name or delete it if you prefer.

The endouk website link for terms and conditions is

endometriosis-uk.org/terms-...

Forum is the 4th from bottom paragraph and links to the Health Unlocked T&Cs.

The T&C link is working

The community guidelines link has changed

support.healthunlocked.com/ is the current link.

Which I have now reported to the endouk team. Hopefully it will be updated shortly.

[Ren95]

I won't be going back to the same surgeon due to the fact I had 3 infections after the laparoscopy due to lack of care. Everything i have read and medical professionals I have spoke to have all said that they think I have it. It took my mum to have 3 laparoscopy's before they found her Endo.. I guess it's just something I will have to learn to try and manage the pain and wait to see a new surgeon

[Gemx85x]

The fact that ur bowel is stuck to stomach wall is a big give away to haha. I have had mine unstuck 3 times and I'm going in again 3 weekday Tomoz to have it done and the endo removed again,