What is your experience?? Endo level, cysts..

[Be-Fi]

Hi all.. just looking for some help and to see if anyone knows more info that could help me out..

So I had a laparoscopy is March which confirmed my diagnosis of Endometriosis. I was not told what level, how bad it was ect, I was only told I had it.. (after I asked).

My pain was almost gone for about 7-8 weeks then it started again and I am in more pain than ever before. I was then told by the hospital after my constant nagging for results (4 months after my op!) That I not only had endometriosis tissue removed but also endometrial cysts, which weren't explained to me. I don't know where the cysts were growing, if they were chocolate cysts or what.

According to my own research endometrial cysts are mainly found in very bad cases of endo where your fertility could be compromised. My gynaecologist hasn't given me any information and google tells you so many things.

Anyone have any idea from experience at all??

Any help would be appreciated!xx

[Giraffe92]

Following this as this is my exact experience! I'm going to phone my gp next week to see if there is a report I can have, I had my lap in March and was told I had endo which was removed and ovarian cysts that were removed and that's it. In my follow up appointment I was told they were going to leave me be and see how it went even though I told them my emotions were so all over the place even months after surgery that I was struggling. Now my pain has come back worse and other symptoms of endo I didn't have before I now have. But the specialist seems to have dropped off the face of the earth when I've asked for how severe the endo was, where it was located and what I should do about these new symptoms. I really feel for you lovely, this is an awful position to be in x

[Parapanic]

Hi! I'm from the States, so my experience with doctors might be a bit different, but I also had a lap in March after seeing 2 gynaecologists and basically having to bully the 2nd one into doing the surgery. They were both convinced that birth control pills would fix everything, but I didn't want to take the pills since the women in my family have always had terrible terrible experiences on them and my symptoms were bad enough on their own, let alone add all the extra hormones and side effects on top of it.

So I had my surgery and my gyn said she placed me at a high stage 3, low stage 4. The assisting gyn was convinced it was a total stage 4. I had endo everywhere, on my uterus, up the lining of my side, on my tubes and probably inside too, etc and my gyn said she was sure it was in a bunch of other areas that she couldn't get to. But I also had 2 big chocolate cysts, one on each ovary, that had pulled the ovaries together (kissing ovaries) behind my uterus, and the endo adhesions had bound them to my uterus and wrapped it all up, then attached to i think she said my spine. (There was a lot of misinformation, back and forth, misleading visit notes, etc with this doctor).

About a month ago, so 3 1/2 months post surgery, I had the absolute worst pain I've ever had when I started my period. I almost ended up going to the ER it was so bad. But I eventually got control over it and called the office - they told me to take ibuprofen and basically suck it up. I didn't take that and eventually got in to see my gyn that afternoon and she basically said the same thing - practically shamed me for doing the surgery before any birth control treatment, stressed again that she wanted to put me into chemical menopause (i'm 27), and then admitted that the Mirena IUD she put in during the lap wasn't enough to treat the endo on it's own because it was so bad!

I was the same way after surgery - got a few weeks of relief after recovery and right back to the constant pain, new symptoms, hormones all over the place, and worse pain than before. I do believe that the surgery only really helps when you have surgeons and gyns who know how to operate on endo specifically and they excise it. My gyn said that she was going to excise and then just burned a little bit and took some samples for biopsy and that was it.

I'm now starting the process of working on getting my complete medical record (which surprise surprise, her office has been a nightmare to get the surgical notes of what she actually did) and taking them to an endo specialist clinic in Atlanta. They excise only and have had enormous success with treating endo.

Sorry for the long post! This is my first and I had a lot to get out, haha. I hope it gets better for you! Maybe us March Laps have to wait a bit longer for everything to heal properly or we find better doctors who know what they're doing!