Recently Diagnosed with Endometriosis

[EndoEffect]

Hello everyone!

I’m new to this. After a year and a half of symptoms, I had a laparoscopy on Friday 4th October and was diagnosed with Endometriosis. They removed three parts and have sent two of them off for testing. I had my laparoscopy through the NHS in the North West. The doctors spoke to me before surgery but I was not spoken to afterward. They said this would be the case and that if they found anything then a follow up appointment would be arranged. So I am left waiting. I have been given a two week sick note so I am off work. I am in a lot of pain still and am feeling very emotional. I had tried to remain positive before the surgery and told myself and other that they might not find anything and I would recover in a few days. Obviously this is not the case and I just feel as though I have so many unanswered questions. Questions such as:

What do I do now?

Will it come back?

Will it effect my fertility?

Will I have to make other plans to get pregnant?

How will it effect my life?

I live with my boyfriend of two years and he is being very supportive and says we will figure everything out together, and my friends and family are amazing, but I feel as though I am quite alone.

Any information, advice, empathy or experience would be greatly appreciated. I hope to connect with people on here, share my experiences and support others with theirs. X

[Longthongsilver]

Hi, I had my lap a year ago now. I was told they found lots of it on both ovaries and other places, removed it and booked me a follow up appt in 6 months. I had a sick note for 2 weeks but ended up being off for 4wks. I went to nurse at surgery and she signed me off for another 2 weeks.

I was told the surgeon that if I wanted babies my fertility is going to be high in the next 6 months. It was already too late for me - but not for you!

I was told it will come back, but they don't know when.

It affects my life every day, pain is obviously not as bad but I'm still struggling with the hormonal imbalance and pain and bloating. But its much better since the lap. I had very painful sex before the lap but not anymore.

[EndoEffect in reply to Longthongsilver]

Thank you longthongsilver. I’m sorry to hear you have suffered like this! I’m glad the laparoscopy helped you slightly. Does it just continue to come back and grow again?

I’m feeling very emotional at the moment. I just keep feeling exhausted and the need to cry. I think it’s because of the laparoscopy and being told they found endometriosis and not really knowing what that means for me or my future.

[Longthongsilver in reply to EndoEffect]

Hi EndoEffect, the weeks after being diagnosed by a laparoscopy were a bit funny for me. Tired, in pain, confused. They don't really tell you enough apart from - we found endometriosis, we removed as much as we could, it could grow back anywhere. Its a horrible journey and for weeks I didn't google it endometriosis, didn't even want to know what it was - what was the point? It can't be cured.

But, a year on, there are lots of things to try even if it does grow back. At my follow up appt they suggested the coil, or the contraceptive pill, and I've heard the diet can help. Its different for everyone.

Your lap was only Friday. Rest, give yourself at least two weeks to mope around and feel sorry for yourself. And having an op is the perfect excuse to stay in bed all day and not get changed out of your pyjamas! 😂😂

[Fooofs91]

Hello my love ! Can I start by asking where they found your endo?

I can answer some of your questions based on years of research and doctors and advice .

Endometriosis does NOT mean infertile, many woman get pregnant naturally and normally,

I would highly recommend a diet gluten and dairy free , sugar free it really really helps . I normally allow myself a cheat day once a week to keep me going

Lots of anti inflammatory foods such as tumeric , green tea, ginger, lemons, veg , apple cider vinegar etc

Endo does come back regardless of stage , but for some months others years for me it came back after 1 year but it was mild nothing like before so I managed it , 2 years later I would say it’s worse but still not worser than initially being misdiagnosed for 3 years .

Your life will not change for the worse I promise it will get better!!! Becuase you now know why you have pain, you can treat it through diet and various treatments and you will gain your strength back.

Being down is normal!!! It’s your hormones don’t worry , I had two forms of depressing periods severe before my diagnosis and after my diagnosis because I didn’t know what to do or expect . Now I am like ahhhh silly endo it gets better !

You will learn your pain days and be able to deal with them accordingly.

I highly recommend you stop your periods for 3-6 month intervals using the cp back to back I was recommended to do this by my doctor it helps Becuase it prevents further bleeding inside your pelvic cavity so less endo less scar tissue, it shrinks endometriosis over time and with time not immediately it will reduce your pain .

I feel like stopping your periods or having the Mirena fitted is the best means of preserving fertility by preventing further scarring .

Diet really really helps .

I hope I have answered your questions and if you need to ask anything further feel free to message me at anytime