Not getting anywhere fast with diagnosis - Endometriosis UK

Endometriosis UK

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Not getting anywhere fast with diagnosis

zedebe profile image
4 Replies

Hi ladies,

I've had symptoms for the past 10 years and decided I couldn't wait any longer for a referral and I paid to go private gynaecologist and she wasn't very thorough in her questions to me and came out with after examining me internally that she doesn't think it's endo and my choices are a to try mirena coil or to have a lap but she advised highly against lap as she said risks are high and small chance of endo. I really don't know where to go from here as the pain I'm getting is unbearable! She said the coil will help with periods but not pain with sex! But said the coil is difficult to to fit if you haven't had children. I don't really want the coil as I intend having children in the next few years so I'm back to square one again. Any advise or have you experienced similar?

Thanks

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zedebe
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4 Replies

Have you had an ultrasound scan? These don't necessarily reveal endo but it would be a good place to start. I had a private scan before I was diagnosed xxx

zedebe profile image
zedebe in reply to

Yes I had the ultrasound scan and it didn't show anything up x

The coil can be taken out whenever you want it to be and your fertility should resume straight away! What they mean by difficult if you haven't had children is its painful as hell!! Well that's my personal experience anyway... within minutes of it being put in I was crying in pain and within 4 hours I was in the hospital 24hr GP crying... I remember saying to my boyfriend if labour is anything like this I don't think I can do it... to which I've had some fellow coil'ers say if anything their pain was worse than labour... try having it when you haven't even been in that kind of pain in your life!! I was given codeine and voltarol suppositories.. basically non stop bleeding still at 5 weeks in, been waiting for a scan for 3 weeks as at the 2 week point I couldn't feel my strings and the GP couldn't find them and my pains been getting worse since... now on Tramadol and Alverine which at this point isn't even touching it when the pain hits!! As for sex thats just non-existent... 1. I don't know if the coil is in the right place and don't want to risk it, 2. its painful at the best of times let alone with the cramping I'm getting and 3. the bleeding and discharge is a put-off in itself!

This coil is the last thing to try before they offer me the lap, I've been on almost everything since I was 15 (19 now) and even if things work, as soon as it gets to the year mark they stop... and I just bleed the whole time and I'm back to square one...

I'd advise not getting the coil from my experience, but I know some.. well really quite a lot of people who would say go for it as it has helped them a lot... I'm just one of the unlucky ones at the moment.

All I can say is be persistent with the doctors, keep asking.. keep going back for every change you feel relevant and if one GP upsets you, try and see another as it really is pot luck. Good luck!!

littlebrownbird profile image
littlebrownbird

They say it's difficult to fit but I've not had children and I've just had my third fitted without any problems.

It's easier in the sense that the cervix is looser if you've had a child but typically it's down to the skill of the consultant.

I have adenomyosis and not endo and it was investigated/diagnosed without a lap but via a detailed transvaginal scan and an ultrasound scan.

Everyone has a different pain threshold. I found it's no worse than period cramps and if it's your first, allow six months for it to settle down.

My first consultant gave me a pessary to relax the cervix prior to insertion but some good painkillers and deep breathing were fine for me this time.

Also, having the soles or your feet together and then opening your legs, gets your cervix in a better position for insertion.

Once you're TTC, you can have it taken out and your ability to conceive returns immediately.

Just bear in mind lots of us have had success with Mirena but not so many success stories get posted online.

All the best x

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