Just looking for a little support 😊 - Endometriosis UK

Endometriosis UK

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Just looking for a little support 😊

ctomo profile image
ctomo
β€’4 Replies

Hi everyone. This is my first time posting after coming across this site today. I have not been diagnosed with endo but have lap in 3 weeks.

Id say my symptoms first started when I was 16 after I had my daughter. So 12 years ago.. Was just small things at first that I could always come up with different reasons. Periods got heavier and sorer. Then some pain during sex. Then 3 years of abnormal smears and biopsies. (not sure if thats connected in anyway!).

I reckon though the past 3 years have been the worst. Pain has worked up to every single day I have pelvic pain. Sometimes its bearable sometimes excruciating. Sometimes stabbing or slicing pain sometimes period like pain. Can never predict and wake up every morning wondering how much pain today will bring. Sex is almost a no go as it hurts everytime and for a few days after the pain can have me doubled over. Also get shooting pains goin up inside me (vagina and backside) thats only occasional though.

Also get alot of pain in my right hip for a few days every month sometimes making walking unbearable.

Lots of headaches and the past week or so lots of light headed spells feeling faint feeling sick.

Have also being ttc for about 7 years. Fell pregnant in 2012 but lost baby at 14 weeks. Been to doc about infertility my bloods showed high hormone levels which I don't know what that really means. Hubbys tests all fine.

Had a scan which showed nothing so like I say got my lap in 3 weeks.

I think I've covered everything!! Basically life is hell and so painful and would b nice to speak to anyone who knows how I feel. Noone around me understands how sore and exhausted i am on a daily basis.

Thanks for reading and look forward to hearing from anyone 😊 xx

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ctomo
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Tboag profile image
Tboag

It sound very similar to me and a lot of ladies in thus site, ive only just been diagnosed in March with endometreosis which he excised from behind uterus and on ligament ive also got adenomyosis which is similar but grows into the wall/muscle of uterus, I'm due for a hysterectomy for the adeno. Both ENdo and adeno have similar symptons,

Good luck with your lap, are they due to excise any Endo found or just diagnosic??

Xxx

ctomo profile image
ctomo in reply to Tboag

Sorry to hear tgats whats ahead of u. I havent heard of adeno.Yeah they've said they'll treat any if found. I'm terrified of the op. How long was your recovery? My gyne has told me ill need 2-4 weeks off work. Xx

skt68 profile image
skt68

Welcome you have come to an amazing forum...all the ladies on here are so lovely and help if they can...this forum is a useful and very informative and there are some extremely knowledgeable people xx

Yazza profile image
Yazza

Ok first things first is it a general on/gyni doing the lap ?

If so I would advise you ask all questions that will need answering as ineffective treatment can leave you worse off...

Personal experience!

My story so you can understand and save yourself months or years chasing the right treatment..

I went to my gp in 2011 complaining of pelvic pain so was referred to my regular ob/gyni firstly he wanted me to try the mini pill so fast forward to June 2013 after lots of trips to gp I finally had a diagnostic lap with my regular on/gyni whom was convinced he wouldn't find anything low and behold he found 2 small spots of endo on my ureter and my left ovary was attached to my pelvic sidewall (which he mobilised) fortunately he didn't touch the endo as in his words he didn't want to cause anymore damage.,. (In other words he wasn't qualified to treat it)... Then a further battle ensued as my pain levels increased I was to and from the doctors who then refered my back to said gyni who reluctently agreed to another lap however my gut was telling me he wasn't the man for the job..

So after doing my homework and cancelling surgery I asked my gp for a referal to my nearest endo treatment centre which I was first told they couldn't do! But after some information from a kind lady on here who told me they can't refuse they have to do as I asked I went back and got the referal so another 2 years later and I've just had excision surgery with an amazing specialist who took me seriously and listened and didn't talk to me like I was some kind of moron...

And he found my endo was widespread with 2 deep infiltrating nodules endo on both pelvic sidewalls utersacral ligaments pouch of Douglas so my point is general gyni do not know what there looking for unless it jumps up and bites them in the face and they don't look in the harder places to access..

So please learn from others mistakes and take control of your life and your treatment it will save your mental health. Xx

Best of luck yazza. X

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