Our symptoms

[Sebbybabybucky]

Hey everyone, I'm new here.

Just wanted to say hello, and see what everyone else is having with this awful disease.

I have currently had this for almost 4 years. Finally being referred for a laparoscopy.

My symptoms are:

CONSTANT period pain.

Stabbing pains all over my abdomen, sides, back, and bowels.

Loss of appetite.

Tired all the time.

Unable to settle, sleep, sit or walk normal speed

Large blood clots on my periods, plus heavy periods.

Pain when going to the toilet, pee and poo.

Tight, stretching, drylike pain around my kidney / ovary areas.

Pain during sex.

Bleeding after sex.

Sometimes small blood loss mid month between periods.

Sickness.

I'm now getting pain down my left leg, down to my knee.

My hip bones ache?

I go cold and have shakes that can last 5/10 minutes or longer.

Hot flushes.

Sorry it's long!!

Hope you all well,

Please share your symptoms, I feel really alone rightnow, and not really anyone to speak to.

Much love xx

[Taraa9]

I want to wish you the best of luck. My prayers are with you! Sending you lots of love and baby dust. I hope you get through this time. Keep us posted, okay? I'd love to talk, whenever you feel like it. Feel free to hit me up!

[Sebbybabybucky in reply to Taraa9]

What a wonderful person you are. Thank you so so much. Hope you are well xx

[Sebbybabybucky]

Also have bloating, and it can hurt to pass wind. And that's more often too! Delightful.

[Helsbelz]

I'm so sorry you feel alone. So many of us have this awful disease, but it's not talked about enough. Your symptoms were like reading my own. I was on the pill from about 16 years old and must have tried every one possible when the doctor said look it's not normal to be in constant pain whilst on it. So she referred me. Doctor who was doing my surgery was adamant I was too young as was only early twenties. When I came round she apologised profusely. I hand extensive endo. My first lap gave me about 7 years with less pain. But things started to get bad again and I'd bleed randomly on top of my cycles. And was crippled to the point I couldnt get out of bed. The doctor palpated my abdomen and said he could feel that it was back or there was a lot of scar tissue. I had a scan which showed blood filled cysts all over my ovaries. Second lap was more extensive and I was graded at stage 3 endo. What's also weird is I get that pain you get in your left leg. No doctor has been able to explain it!

Anyway I'm now on nothing. Stopped prostap in may last year after five years on it and had my first bleed a week ago. I am more cramped up and last year was also diagnosed with adenomyosis so they have told me I will never be 100 percent pain free until I have a hysterectomy. I'm 36 and now ttc as don't have any children. The lap will hopefully give you some answers as that is one if the worst parts. Take care and big hugs xxx

[AllthatGlitters]

You have a lot of symptoms the same as me. I have adenomyosis and not endometriosis (had a lap in January).

Feel free to PM me if you want to chat x

[RicEndoUK]

Hi Sebbybabybucky,

Welcome to the forum and as others have already said, you are definitely not alone!

I don't know if you are aware but Endometriosis UK also have a free confidential telephone helpline if you feel you want to speak to someone. You can find details of the opening hours here:

endometriosis-uk.org/helpline

They also run support groups where you can meet others who understand what you are going to face-to-face. You can see if there is one near you here:

endometriosis-uk.org/find-a...

I hope this helps and keep us updated as to how you are.

With best wishes,

RicEndoUK

Volunteer Moderator