Laparascopy - confusing diagnosis?

[Amenah]

Hi all,

It's my first time posting here but have read alot of posts that have already been super helpful but there's a few things I'm abit confused about.

So basically I had a Laporoscopy last week in which they said they found and removed deposits of endometrioma in my pouch of Douglas and my uterus or pelvis. However, they were very vague about the whole thing and I literally had to do 20 questions just to get information. One thing I asked was the stage of endometriosis I had, but i didn't really get answer. I also wasn't given any medication either (apart being offered the marina coil) and so as they have removed the endometrioma I had, do I even still have endometriosis? The consultants really didn't seem to bothered at all, no one explained the condition at all, everything I know is from my own research.

So yeah, I guess my questions are, are do I actually have endometriosis, is it long term for me and why hasn't anyone explained anything to me? Has anyone else had this experience with their laparascopy? I just feel kind of strange because I have been getting these pains for years and it has been a big deal for and waiting for this laparascopy has also been a very anxious wait but now that it has come and gone, I just feel like I haven't really got any answers or support?

I would really appreciate everyone's help!

PS. Sorry for the long post!

Thank you all

[Natalie02]

Hi, I don’t know much about it all either, I’m new to the idea of having endometriosis, but my understanding of it is they have taken some of it away which should hopefully reduce some of your pain for now, but it’s not usually something that is just gone. It usually comes back. From the leaflet I was given the other day things like having a baby can sometimes get rid of it but I can’t say I understand it at all! (Like I said I’m new to this too, so I apologise if I’m not getting it right).

I’d say go back to either your GP (or obgyn), or get referred back to the endometriosis specialist and demand they explain to you what’s going on as it’s your body and you have a right to know what’s what. Continue doing loads of research in the mean time so you can ask lots of questions again! It’s not fair to leave you in the dark and will only make your anxiety worse. I’ve found the only way I’ve got anywhere is demanding things and threatening to make a complaint if I don’t get to see so and so! Good luck xx

[Anastasia17]

Hi Amenah. Your post is perfectly clear. I had a lap last September. The Consultant announced in the operating theatre that he wanted an urgent appointment in 2 months time. November arrived, nothing. I called, no answers, went throughseveral voice mails. I finally managed to get the right number, called, left a voice mail message. I received an appointment letter shortly after for the end of January. By October I was waking up with suicidal thoughts, which is unusual for me. The GPs have been a complete disaster. In Feb, when went to the GP having been really ill the day before due to a flare when I ended up in bed at 5pm as I could no longer stand up, and slept straight for 3 hours . The GP told me that nothing could be done, the newly recruited nurse told me the same in March. This is called medical support... We met with the consultant in January, 4 months, he explained what surgery had been done, said I had endo, but not the level or where it is located. I have called his secretary but she keeps saying that only the consultant can tell me, feels like it is a state secret. So here we are 10 months post surgery, not really knowing. From the posts that I have read on this site, it would appear that if its level 3 endo, the NHS protocol is that you should get referred to an endo centre. My main prayer at the moment is that they don't try to lie and say its a lower level of endo in order to save money or cover any mistake made. . Keep fighting, take good care of yourself, if you have a job, keep it as getting out of the house has really helped me, even when I was depressed, in pain and felt abandoned and very confused with the medical community. Take good care of yourself. 😊

[Christin_a]

Hello

So to answer some of your questions, if you had endometriosis in your pouch of Douglas then I believe it's considered stage 3 or 4. And unless your surgeon was a BSGE surgeon they shouldn't have touched it.

As to if you still have the condition. Yes you do it's a chronic condition, so they have removed what was visible at the time. But due to high chances of reoccurrence you are considered to still have the condition.

If you want more information about your surgery you can contact the hospital and ask for copies of your medical file.

Also if you want you can also contact PALs at the hospital and lodge a complaint about the lack of information etc that you've received.

[ourmolly]

Endometriosis is difficult to clear, as it continues to grow while you still have periods. I had a hysterectomy at 28, but my ovaries were left because of my young age. Hence, I carried on with pain and rectal bleeding which I suffered from. You need to go back to your GP and Consultant to ask questions. You need to be consistant with your GP and Consultant. Do not keep suffering in pain like I did for many years. I am now 63, but I still have rectal bleeding as they cannot operate on my bowel as the lining of my bowel is very thin. My reply might seem harsh, but you do have to stress what you are going through. I went to different Hospitals, but most of them had never dealt with a problem like I had with my bowel and my severe endometriosis. Good luck.