Newly diagnosed and a bit confused. - Endometriosis UK

Endometriosis UK

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Newly diagnosed and a bit confused.

BekahBee
BekahBee

Hi :)

A couple of days ago i had my first laparoscopy after problems with pelvic pain and my bladder since i was 16 and being told by every Dr that i just had IBS for all these years. Finally a new GP sent me to a gynaecologist a year ago and after trying a couple different contraceptives (both of which caused horrible bleeding) they told me it was likely i would need an op to find out what was wrong.

After the lap the consultant came to have a chat and told me i had a few patches of Endometriosis on my Bladder, both Ovaries, the vagina and on my bowl. The patches are only small and she said they decided not to treat them at the time. But thats all i've been told. And i now have an 8 week wait till i can ask what that means for my fertility and what they want to do to 'treat it'. The Mirena Coil was briefly mentioned but i'm a bit worried because of how i reacted to other 'progesterone' based contraceptives and because of some of the horror stories i've heard about the coil. So i'm sitting here feeling very puffy and a bit bewildered to be honest. A lovely nurse gave me the web address for Endometriosis UK and this seemed like a good place to ask about other peoples experiences. I feel a bit silly reading other peoples experiences of it and then posting when i only have it mildly but i am feeling a bit alone with no one to talk to about it.

So really i'm just hoping for a bit of advice and i guess reassurance too

:)

5 Replies
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Hi Bekahbee. Big hugs to you, I know how you feel as I was told for years that it was in my head and probably IBS. Eventually after finding an ovarian cyst after an ultrasound, I had a lap where they discovered endo and that I had a chocolate cyst. They did drain the cysts and treat as much of the endo that they could and I was put straight onto Zoladex. This had some pretty awful side effects, but I stuck with it and I was pretty pain free for approx 3 years. There is a lot more that happens after this but i will not bore you with it all. I found that you have to research as much as you can on Endo, if you can find a consultant that specialises in Endo that would really help too. I found many different consultants that did not really know that much about it, so found myself one who did and he is absolutely brilliant with the aim of making your life as pain free as he can. Dont be scared to stick to your guns when they try and tell you that its "in your head" or "IBS". Just do not accept second best.!! Where abouts in the country are you?

Take care.

Chrissie xx

BekahBee
BekahBee in reply to Chrissie10

Hey Chrissie,

Sounds like you had a bit of a rough time, it is a shame when you have to wait and be told your just being silly. I've not heard of Zoladex, before the lap i was given firstly the depo injections and then Femulen. My GP has been brilliant, i changed when i moved house but honestly he has tried his best to get me feeling better again. Sadly my Gynaecological consultant isn't so lovely. Since my first appointment he's made me feel very small and like i'm just an annoyance. I'm beginning to worry about my appointment in 8 weeks to discuss treatments he really is that rude. But you said is best to research so thats what i'll do, then i can go on the day and not feel completely helpless.

My consultant is based in Suffolk, but is it worth looking to change at the moment? He is really intimidating but i don't want to just give up. And i imagine it was just cause more delays and confusion?

Thank you so much for the reply! :)

Hope your well

Bekah x

They probably decided not to remove your endo because this causes scaring and can then give you more problems. If the endo is small they like to try and treat it with other methods first especially if you are young and haven't had children yet. The mirena coil won't get rid of the endo but it can stop it getting any bigger. And can help with the pain well this is what my surgeon told me.I haven't had the mirena coil yet but when I have had my next lap to remove endo I will be having one fitted at the same time. The surgeon told me that the mirena has worked for a lot of people. I really didn't want to have it as I've heard a lot of horror stories but he showed me some statistics and on paper it looks like a good method so I've decided to give it a go

BekahBee
BekahBee in reply to K_ay

Hi K_ay,

That makes sense, thank you i just wasn't sure what had gone on while i was knocked out. I hope It all goes well for you with the Mirena coil! And i hope your Lap goes well and you have a speedy recovery. I've read some of the information on Endometriosis UK and as the consultant said the coil is ideal for me, but then i'm worried because of the way i reacted to other progesterones. Maybe i've just got to give it a go, i suppose it can be removed if it doesn't work out.

Again, i really hope everything goes well in your next Lap. Be nice to hear how you get on with the coil too.

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I had the same - they woke me up from my general anaesthetic and bombarded me with all this new information and I was instantly confused and devastated. The main thing I'd like to recommend is DON'T google anything! Only use creditable websites because you'll end up reading all sorts of horror stories and learn about new symptoms etc that you might actually never encounter yourself!

Nobody ever writes about their good days (I'm guilty of this myself) and people only talk about their problems - which is a great relief to a lot of us - but be careful not to get too upset about things other people have experienced as you might not ever experience them yourself! :-)

8 weeks is a long time, try to contact your surgeon's secretary and bring your appointment forward. I've done that several times and especially with people cancelling their appointments for their summer holidays you might be able to nab a cancelled space!

On another note, I had the mirena fitted a few years ago and have never looked back. Took about six months to settle down and I get cramping with a light period every now and again but overall it's helped massively and I no longer worry about bleeding at unexpected moments - I feel much more in control.

Good luck, you will be fine (as ALL of us will be!) and be positive! SM x

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