Help! A little bit of knowledge would go ... - Endometriosis UK

Endometriosis UK

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Help! A little bit of knowledge would go a long way...

HannahP profile image
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Since I was 14 years old and started my periods they were horrendous with regular flooding and generally feeling pretty rubbish and bleeding for 14-19 days a month. 2 children, 3 miscarriages and my husbands failed vasectomy later I was finally sterilized and at the same time had NovaSure ablation, this was in November 2011. I caught an infection after the op and wasn't back on my feet until January 2012. My periods were much lighter and were only lasting 3 days with hardly any pain, then in April 2012 on the first day of my period I had terrible pain over my left hip into my groin and my left thigh, also pressure in the bowel area when the pain is at its peak and feeling completely drained. I ended up at the hospital and was told it was suspected kidney stones. An MRI and Ultra Sound later ruled out kidney stones, only a small (3cm) cyst on my left ovary (which has since disappeared) and the doctors said was of no significance. Then on the first day of every period since, I have had the same pain, it lasts approx 4-7 days. I was given Buscopan, Diclofenac and Dihydrocodeine then my GP gave me Econac Suppositories as these are the only thing that help with the pain and stops me ending up in A&E. Several internals, scans etc I was referred to Gyne consultant who prescribed Zoladex injections, once a month for 3 months. The pain stopped as did my periods and the delights of the menopause kicked in. I have just had my third injection and the pain in starting to creep back, I'm due to see the consultant again in 3 weeks time (I'm also taking Tibalone as prescribed by my GP). I guess what I'm asking is; Am I suffering with Endometriosis? The more I read about it the more it mirrors my symptoms. My mum, her twin sister and my nan have all had hysterctomy's due to endo and they are sure this is what I have but the doctors seem reluctant to confirm this. I am 37 years old. Sorry this is a bit long winded but if anyone can relate to this I would be very grateful as I'm at a complete loss. Thanks x

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HannahP
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Andypandy profile image
Andypandy

Hi there u poor thing, I can relate to all ur symptoms, I to went thru similar to u, but I'm very surprised u haven't been give a laparoscopy ages ago.. I really think u have all the signs ov endo?? both my 2 sisters have got endo also.... I have been rushed into hospital with suspected kidney stones/ appendix u name it, but now I'm havin major surgery in 22nd after undergoing 5 laproscopys, u need to insist on further investigations

I came on at the age of 9 n suffered ever since, the only thing that has helped me is the mire a coil, as not had a period for 2 years now, BUT, I've had 4 cysts on my ovaries which have had to be removed, and the consultant decided to tell after that one of the side effects of the coil is cysts!!:-( so u need to out way all ov it, sorry to dishearten u but u carnt suffer not knowing what is wrong, if u would like any more info feel free to ask. M good luck.Andrea

nixhaz profile image
nixhaz

Hi Hannah,

It sounds like endo, I'm afraid, but the only way they can diagnose that is through a laparoscopy. The fact that they have prescribed zoladex makes me think they believe you have it too.

Check out the endo diet in the meantime, cutting out wheat etc can help with the pain for some people.

I'd recommend keeping a pain diary so that you can show it to the consultant when you go.

Hope you are having a good day,

Nix

HannahP profile image
HannahP

Thank you for your comments/advice its much appreciated and nice to hear from people who have the same symptoms. I'm not finding it that easy at the moment so once again, thank you. I shall defiantly look into the diet. Best of luck with your op Andypandy. Wishing you both well

Hannah x

daniellewright profile image
daniellewright

Hello, some of the symptoms you describe could well be adenomyosis. If you have not already been screened for this condition please ask to be checked for it. The only positive way to see adenomyosis is by colour doppler MRI scan. For more information about adenomyosis please visit adenomyosisadviceassociatio... x Take care x Danielle x

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