Newbie: Hi all. I'm new to this site. I've... - Endometriosis UK

Endometriosis UK

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Shandy31 profile image
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Hi all. I'm new to this site. I've been told I may have endometriosis just recently and wondered if there is anyone else out there who is in there 30s had children and then developed endometriosis? I'm 36 and have 4 children all by the time I was 30. I've been having extreme pains since having my youngest child who is now 6 and a half. I admit I don't know much about the condition but I thought I would receive some sort of testing to investigate it but I haven't been referred. .? Should I just accept this or demand tests?

Many thanks

Shan xxx

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Shandy31 profile image
Shandy31
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Naomi1002 profile image
Naomi1002

They have to do a keyhole surgery to check. Endo doesnt show up on scans and Gp's wont be able to diagnose you just like that.

You can get referred to a gynacologist and endo specialist. I am 34, i dont have children and they fpund out with me because they discovered a large cyst by scan, wanted to remove it with keyhole surgery and found endo at this time as well. I didnt kniw muxh about it, but know more now.

On internet you can google endo and more information you will be able to find.

What kind of symtoms do you have? Is it linked with your cycle? And who did tell you you might have it?

Best regards,

Naomi

Shandy31 profile image
Shandy31 in reply toNaomi1002

Hi Naomi,

Yes it's linked to my cycle. It was the nurse practioner who told me that I may have it due to my symptoms, she said it can't be detected on a normal scan but can be picked up on ct or laparoscope. My symptoms are heaven bleeding excruciating pain in my abdomen (TMI) it hurts to pee, poop, fart, sneeze, cough and walk. I also get extremely tired. Every month the pain is getting worse that I just can't cope anymore.

Naomi1002 profile image
Naomi1002 in reply toShandy31

Well it looks like this lady knew what she was talking about. Many professionals have no idea and it is really difficult to make them understand what is wrong!

Are you bloated, feel sick and dizzy?

I am constantly tired, doesnt matter if i have a quiet day or a busy one.

As well i got pain on my right side, which can pull through till my ribs or down to my leg/hips. Very irritating and can make me down and sad.

Luckely they are helping you now. Write down symptoms, which time of the month, how you feel moodwise and take it back to them. It can be all important. Have a look online about endo, that professiomals dont brush it off only as period problems/pains. Make sure they take you serieusly.

I wish you all the best and good luck!!

Mummycox33 profile image
Mummycox33

Hi

I'm 33 and have 4 children. I have always had painful heavy periods but could cope with normal painkillers. My youngest is 4 and about 2 years ago I noticed my pain was becoming worse and lasting longer. I now have pain in my groin. Lower back. legs and sides. I'm waiting for a lap to check if I have this which I'm really worried about but I know it needs to be done. I have been to see many doctors who always say I'm too old for endo and that I have 4 children so I can't have it ect. Im pretty sure I have it as my aunt (on my mums side) has always had bad periods but never been checked and now my 15 year old is showing the same signs as me. I have done lots of research and realised you can have endo for years and not even know you have it till it's starts to get worse and cause more pain later in life. Don't let the doctors tell you it's normal or it can't be endo as most of them say this. I have spoken to a member on here called lindle who has some great advice and she mentioned I should see a specialist to make sure it's checked and treated properly. I hope this helps a bit. If you want to chat let me know. Claire xx

Shandy31 profile image
Shandy31 in reply toMummycox33

Hi Claire

Thank you for your reply, I'm at my wits end with the pain. I too have always had heavy painful periods. I started them very young (12) and they only changed after my first child. They went very light loss and hardly any pain. They remained that way until I had my last child, this is when they went back to normal (well my normal horrid periods anyway). I'm going to go back and demand to see a gp for refferal. However I do have a gyne appointment in December so I might mention all this to them. I have a weak bladder so have been seeing them about that. Xx

Mummycox33 profile image
Mummycox33

I started my periods at 12 as well and my periods weren't too painful just the typical pains for a couple of days. Since 2 years ago the pain is getting worse and I sometimes describe them like labour pains!! I now get tired after doing any tiny little thing (I can't even hoover the stairs without feeling like I have run a marathon!) its so difficult to deal with the pain and tiredness when you have children and work. The gynae you are seeing should be able to help and if it is interfering with your daily life then you should demand some checks xx

Sweetyassi profile image
Sweetyassi

Hi,

I had Endo after I had my 3 children and I'm now 39 years old. My children are now 18, 16, & 14years old. My periods were always heavy and very painful. 3 years ago I had to have a hystercretomy done but I kept my ovaries, the operation wasn't successful for me. I had an operation last year July on my bladder, that too wasn't successful. I then had another operation last year November via keyhole surgery by a private surgeon and it was a success, I'm still recovering but getting better day by day.

After having numerous operations on my stomach, bladder, bowels I have now been diagnosed with celiac disease.

My first op was an emergency in 2009 as I didn't know I had Endo. All I knew was I had the flu, I was vomitting non stop, couldn't pee, was constipated, bleeding in a lot of pain my skin turned yellow had hiccups. I was admitted in hospital where they did emergency bowel resection and since then have had problems eating solid foods and had non stop operations.

Please don't rush into anything, please do your research on Endo and treatments available to you. But to get diagnosed with Endo it's usually done via a keyhole.

Sweety

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