Where to turn.: Good morning, I have been... - Endometriosis UK

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Where to turn.

sarahlou1985 profile image
5 Replies

Good morning,

I have been on this site for a month or so now, mostly trying to make sense of what is happening to me and your stories and questions are so helpful and comforting.

So right at this moment today isn't a great day , I am so exhausted and worn out, my back is in pain and my pelvic area feels ready to fall out ( dramatic I know, I'm sorry) .

So my mood is somewhat sombre today and I just felt like I needed to speak to someone that might understand.

So here's my story so for....

For the last few years since coming off contraception I have suffered with irregular and heavy periods, as the months have gone on the symptoms have got worse. in fact in one month I bleed for 27 days. I have been seen by a gyno and had scans and internal and all was deemed normal so I was advised to have a coil.

I have not done this because A, no one can tell me what is wrong and B, I seem to be effected by contraception and I suffer with depression and anxiety when on them.

My symptoms in full are - Heavy bleeding

Irregular and extended periods

Spotting in between

Pelvic Pain and awful lower back pain especially when I am about to start a period.

Occasional pain from back to legs.

Pain/ discomfort after sex which last a day or so.

Always so tired.

Symptoms of IBS.

Nausea most morning.

As the months /years have gone on the effect this is having on my day to day life is getting very difficult. On the advice of the Dr I am trying very hard to live with it and keep doing everything but this is getting harder and harder and with it being so personal no one sees it but just see your not as yourself.

Its now effecting my work life as I have had to go home a few times now due to not being able to control and manage the heaviness of my period or the back pain.

I just feel so fed up and let down by my body and I know that sounds so bloody stupid.

What can I do?

The Drs just don't seem to understand and I don't want to be a pain if I'm over reacting and I should just get on with it but the effect it is having is getting so much harder to deal with.

We've just got back from holiday and I couldn't swim with the kids because for 5 of the days I was on my period and the other two I had diarrhoea, its just so frustrating.

I am not diagnosed with Endo but feel my symptoms are very close. I am only diagnosed with Menorrhagia and IBS.

Any advice anyone has on how to manage it would be so gratefully appreciated.

Thank you for reading this stupidly long post xxx

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sarahlou1985
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5 Replies
Starry profile image
Starry

Your symptoms are a big check list for deep Recto vaginal Endo and quite possibly Adeno, especially backache diahrroea when on period and the dyspareunia. It's often misdiagnosed as ibs. Ask your GP for a referral to a specialist BSGE Endo centre for diagnosed

Symptoms of RV Endo to take to GP If needed endopaedia.info/subtype14.html

Bsge

bsge.org.uk/centre/

The NHS Treatment pathway for deep Endo requires BSGE centre referral . See page 6

google.co.uk/url?sa=t&sourc...

Hope this helps x

sarahlou1985 profile image
sarahlou1985 in reply to Starry

thank you so much for replying I will do this xxx

Starry profile image
Starry in reply to sarahlou1985

Good luck xxx

smitz99 profile image
smitz99

I'm sorry to hear you are going through such a horrible time.

Your symptoms ring big for endo. Doctors sometimes misdiagnose ibs as the symptoms are so similar. I know this because I was diagnosed with ibs when it was endometriosis. Keep going back to your doctors don't give up. Ask to be referred and maybe take someone in with you who can stress how much of an impact this is having on your life.

Good luck xx

sarahlou1985 profile image
sarahlou1985 in reply to smitz99

thank you, its just so frustrating and you don't want to be a pain but when you know something is not right its hard. I will go back and push to be referred because it cant carry on, taking someone is a good idea. I am lucky my partner is very understanding xxx

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