Endometriosis UK
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Any advice?

Hi, I am 23 years old and have been trying to figure out what on earth my body is up to from the age of 15.

I have had painful and heavy periods from about the age of 15 (I started at 13). The pain has been so bad at times that I have blacked out and it has caused me to vomit. Not every period is this bad but more often than not I dread it.

I was put on the pill when I was 15 and this did help a little but I feel like just fobbing me off with the pill is not getting down to the real issue.

When I was 17 I was admitted to hospital with suspected appendicitis. I had ultra sounds which came back as normal.

I have been back to the doctors so many times now, I've had blood tests and scans. About 3 years ago I had a scan and they found a cyst. I was told if I had an attack of pain to go back to the doctors. I did have a terrible attack of pain and honestly thought something serious was happening. After about 20 minutes it calmed down to the usual agony and a night with a hot water bottle. When I had the follow up scan the cyst had gone?

I have been suffering with hip, lower back and leg pain from about the age of 16/17. I assumed it was down to having issues as a child but now after reading certain endometriosis pages I think it could be linked.

I also get a really dodgy belly when I am on my period. It's either I can't go or I have a loose tummy. I get terrible trapped wind like pain and have just put it down to the fact that my body doesn't like too many carby foods.

I do experience some pain during intercourse, it's a very sharp pain that I can almost feel in my back.

I don't have cramps the rest of the month but everyday my hips ache but I just have got used to this being my norm.

6 Replies

That sounds like it needs investigation by a gynaecologist first and/or an endometriosis specialist. It's tough because I have endometriosis and all of your symptoms sound like you have it but some of those symptoms can also mean other things so the best thing to do is push (repeatedly if necessary) for a referral to an gynaecologist, tell them everything you've said here and push for a laparoscopy to diagnose. Don't give up. X

1 like

Thank you for replying :). I have had one referral to a gynecologist. He went on about my weight (I have put on weight but I'm not huge) saying this could have caused my issues. I had these issues when I was a size 8 17 year old. He said that I should just take pain killers before I thought the pain was coming on. He examined me and it was so so painful but he just carried on. I bled and he gave no explanation for that. He left me feeling like I was being dramatic about it all. My friend who is in medicine thinks that I have had a bad experience and I am now in the process of seeing someone else. I just feel so fed up with it all. I have days where I think, I am just being dramatic and need to man up but when speaking to others they have made me see that this isn't the norm and I shouldn't shut up and put up with it. Unfortunately that's how doctors have left me feeling. x



Where in the UK are you?

1 like

I'm in Pembrokeshire, Wales 


You have more than enough symptoms to suggest endo and there is a treatment pathway to be followed. Unfortunately you don't have access to the same choices as in England but you must be offered a lap.

Have a look at my posts on how to find a specialist centre, the treatment pathway, the diagnostic lap and the one on uterosacral ligament endo. There sounds quite a likelihood that you may have endo behind your uterus causing referred pain. But this is often missed in general gynaecology so you need to do all you can to find a gynaecologist who has a bit more knowledge of endo than the basic one would have. Google things like 'Endometriosis gynaecologist Wales' and see what profiles come up. If you or your family have funds to see someone privately for one appointment (around £200) you could see a specialist at a centre who would be more likely to know what your symptoms suggest. Basically learn as much as you can and perhaps with your medical friend try and identify the gynaecologists who might be best able to treat you. 

1 like

Thank You for all of your advice :). I will have a look at your posts now. x


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