Laparoscopy 2 years ago but still no diagnosis. Any other possible reasons for symptoms?

[Pmssux0803]

Hi, sorry its a long one.

I had a laparoscopy 2 years ago in Feb for suspected endo... Extremely heavy bleeding (I used to bleed through a heavy tampon and incontinence pad), really painful cramping(sometimes like I'm in labour), bleeding and pain/bloating after sex, huge clots (much bigger than a 50p), really bad constipation and fatigue. After i had my son 4 years ago (after struggling to conceive and a few losses) they finally booked in the surgery and confirmed there was no tissue. However I keep getting cysts on my ovaries, I've had the coil (which has been awful, first one got stuck so had to be removed during surgery and this one when inserted perforated my uterus-since had 2 ultrasounds to check placement is fine but they couldn't remove it so am having to wait for an appointment for them to inflate my cervix). I've also tried different pills/convi pills but after severe migraines they advised I was at risk of a stroke if I continued/also implant was awful.

I have basically since just been left to it, I will be going back to the GP to be referred back to the gynecologist. But has anyone else suffered with similar issues and had a diagnosis in the end. It's been nearly 13 years and I'm at the point I cramp most days and I really am sick of it. The doctors don't seem to think it's an issue but if I was offered a hysterectomy I'd take it.

I just want to go to them with ideas of what it could be so they can rule out as much as possible and maybe finally find the issue and work on dealing with it. So if anyone has experienced anything similar it would be a huge help to hear your diagnosis

*family history: endometriosis, cysts, blocked tubes (the women in my family are unfortunate it seems)

Thank you in advance

[Angellouise]

My 19 year old daughter is going through the same thing with no diagnosis she is seeing a new Gynocologist and waiting for a CT scan . I wish you luck , maybe an endometriosis specialist could help you.

[Lindle]

First of all a diagnostic lap should be a very detailed process that inspects the whole of the pelvis but many general gynaecologists go in , have a quick look at the reproductive organs and declare them free of endo when the most common location is deep behind the uterus out of view. As a result a good proportion of women who finally get a diagnosis have previously had a lap and been told they don't have it. This then leads to the disease progressing and being worse when it is finally found by someone with the right training and experience. The NICE guideline requires that you are treated by someone with expertise in diagnosing endo (a special interest) and I suspect your lap was probably by someone without the appropriate expertise and additional training.

The first step is to get a copy of the lap report as this will usually indicate how thorough (or not)the lap was to see if it was likely they missed endo. Will pm you. x

[Kimbob41 in reply to Lindle]

I’ve been having similar issues, gynaecologist recently stated endometriosis is likely cause of my symptoms. I was given the option of a diagnostic lap, however consultant warned that 60% of the time endo will not be found but that does not mean you don’t have it. It’s just very difficult to find. He also warned me against having lap right now due to Covid risks. xx

[Lindle in reply to Kimbob41]

Does he have specialist training in diagnosing endo?

[GrittyReads]

I agree with Lindle. Many women never get full, detailed diagnostic laparoscopies, with good endo specislists who are able to recognise all the different types of endo tissue, … and who are skilled in looking at the 'very difficult to access' areas of the abdominal cavity, where endo tissue can be hiding on and behind delicate organs. You need to be referred to a top Endo physician, for a proper diagnostic lap: followed later by a removal 'lap' with all essential specialists within call, in case they are needed to access and remove in dangerous areas - eg: the bowel. Most laps are rudimentary pokes-around, often with the partial removal of endo tissue, which (more often than not) makes things worse, as the remaining endo tissues just regrows. more vigorously.

Insist on being an exploratory lap, preferably by a BSGE team if in the UK. Take a look at Lindle's other posts and her website.