what do i do now?

[halcyondelirium]

Hello everyone, thank you for welcoming me to the group.

I am seeking some advice, I am at a complete loss and it is crushing me.

Yesterday i finally had a laparoscopy after 12 years of super heavy periods, pain, birth control, scans you name it. When i came round from the surgery, they told me there was no signs of endometriosis being present besides some scar tissue with could have previously been something.

I felt completely deflated. Still no answers. Of course i felt happy that endo had been ruled out, but absolutely crushed that i still don’t know where i stand.

She didn’t mention any form of follow up, I haven’t seen any paperwork regarding what they actually looked at/for in the procedure and i have no idea what to do next. I am not thoroughly convinced it should be ruled out.

Every 3-4 weeks i have a pain flare so severe it requires a heat pad, tens machine and codeine. I don’t bleed anymore due to the implant but when i have done in the past it has been so excessively heavy that i’m too embarrassed to leave the house. At 24, my sex life is suffering because i end up in pain for the next 6-8 hours so my partner and I are both hesitant to want to do anything which is having an impact on our intimate relationship.

Don’t get me wrong, birth control has dulled the pain and symptoms. I won’t take the pill anymore due to my mental health and due to past trauma i don’t feel the coil is right for me. I get on well with the implant, but something else needs to be done to improve my quality of life.

What do I do now? do i push to see another gynaecologist again? please someone help me😢 i’ve done nothing but cry since my surgery and just don’t know where to turn.

thank you for sticking with me in this post xxx

[Lindle]

You will be feeling such a mix of emotions at the moment. You will have been pinning your hopes on having endo whilst at the same time no one really wants it. What you want is answers when you know, in a way no one else can, that something is very wrong.

But this is a situation so many women find themselves in after a first laparoscopy especially if done by a general gynaecologist with no endo specialism. I don't know if that was the case but still, even though the NICE guideline requires that a lap for suspected endo must only be done by someone with additional endo training, we are finding general gynaecologists doing them. This can simply go on to extend the time of a final diagnosis.

It is very common for general gynaecologists to think that endo only affects the reproductive organs so that is all they look at. If your ovaries, tubes and uterus look fine then you are declared free of endo. They might have a quick look at the peritoneum (pelvic lining) looking for classic, textbook signs of how they think endo should look without thinking of other forms. The finding of scar tissue is a red flag as what is called deep endo is scar tissue with endo hidden well beneath and in that case all that will be visible is scar tissue. So often we see ladies declared free of endo with 'just scar tissue' or 'just adhesions' reported. If you have had no previous abdominal surgery or inflammatory pelvic conditions then it is likely that this scar tissue might be deep endo in the presence of typical symptoms such as pain with/after sex, pelvic pain, lower back pain, leg pain (usually but not always the left), shooting pains, bowel/urinary problems or any combination of these.

To put this in the context of what you have described, it is well recognised that putting adolescents on birth control early on to control bleeding is a risk factor for the development of deep endo down the line due to masking of symptoms (ESHRE guideline, 2.1).

The first thing to do is to ring the hospital and get the discharge note that they should have given you before leaving hospital. This must show what was done with an explanation of findings. This is a requirement of the RCOG Standards of Gynaecology Care (Standards 54 and 56) so you can quote this if they resist. Sometimes discharge notes fall well short of these requirements and it is always advisable to get a copy of the actual lap report through what is called a Subject Access Request. The guidance on how to do this is in the BMA guidance below.

ESHRE guideline:

eshre.eu/Guidelines-and-Leg...

RCOG Standards:

rcog.org.uk/globalassets/do...

BMA - how to get records:

bma.org.uk/media/2821/bma-a...

Please feel free to message if you need any help with this. x

[halcyondelirium in reply to Lindle]

I don’t believe my surgeon was an endometriosis specialist, i know photos were taken during the procedure as she was going to show me but they weren’t printed so she couldn’t and honestly i just wanted to go home.

I definitely want a specialists second opinion as once again i just feel like i’ve been fobbed off.

The only paperwork i’ve been given just says no follow up is needed and who performed my surgery so I shall definitely be requesting more information on what actually happened while i was asleep.

Thank you so much for taking the time to respond so thoroughly - ive been so lost since i got home last night but i at least know what my next step is now xxx