Newly diagnosed.: Just found out I've... - Endometriosis UK

Endometriosis UK

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Newly diagnosed.

Cuppacoffee1 profile image
6 Replies

Just found out I've Endometriosis after attending gynae about a cyst on my ovary. I wasn't expecting this diagnosis & was offered a lap referral to confirm it but decided to wait for a review next year & trial Cerazette in the meantime.

My difficulty is in understanding the symptoms. 18 months ago I was involved in a RTA which has left me with chronic back pain & I've tired every tablet going to try & ease it. I'm currently waiting on an appointment with the pain clinic for injections. MRI showed I've bulging discs.

Would any of the symptoms I'm experiencing be coming from Endo? Back pain, heavy sore legs, shoulder & neck pain. Around my period the pain increases.

My iron count is currently very low & there not sure if that's to do with heavy periods but I'm extremely tired having to nap several times a day. Can't get iron checked till June.

Anyone else experience these symptoms?

I did have a lap in 2007 for a cyst on my ovary & there was no mention of Endo then. My period pain increased severely several years ago where I'd be on the settee for several days & not able to do anything. Although it's eased slightly I'm still slightly confused with the diagnosis from transvaginal ultrasound. Sorry for the long winded post.

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Cuppacoffee1
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JeanOsborne profile image
JeanOsborne

Hi the back pain etc sounds more like its from the bulging discs but if you have endo this won't be helping. Can I ask why you can't get your iron levels checked until June? As it only involves a blood test which your GP should be able to arrange. Personally I would have the lap now to confirm endo. The pill will only mask any symptoms not get rid of it. They only real way to remove endo is with excision surgery.

Cuppacoffee1 profile image
Cuppacoffee1 in reply toJeanOsborne

Hi Jean, thanks for replying.

Should've said it's because I'll be on my iron tablets for 3 months then & hopefully it may have went up. As it is I'm only on them a month.

I've read good & bad things about lap so really not sure about it at the minute. Lots of these ladies on here have had it multiple times. My mum had it once & it made her symptoms a lot worse.

JeanOsborne profile image
JeanOsborne in reply toCuppacoffee1

Hi I've been on iron tablets due to an internal bleed after surgery, but have had to stop them due to them causing severe stomach pains and feeling unwell. Trying a high iron diet instead ie liver,red meat, spinach and dark leafy greens, dried fruits and sunflower seeds. Have blood test a week Thursday to check levels. With regards to laparoscopy if you go through a specialist endometriosis centre from the BSGE list you have a much higher chance of success as general gynaecologists tend to either miss some endo or don't recognise all presentations of the disease. The longer it is left the worse it can become.

Cuppacoffee1 profile image
Cuppacoffee1 in reply toJeanOsborne

Hopefully your iron levels will have raised. I'm gonna try eating more iron rich foods.

I don't think we have a BSGE here (NI) it's gynae led consultants for us. 

JeanOsborne profile image
JeanOsborne in reply toCuppacoffee1

I've just had a look on the website and there's one in Londonderry 

Cuppacoffee1 profile image
Cuppacoffee1

I've never heard of them before. I'll check it out now. Thank you

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