I really need lots of advice... There's lots in this...

[Brottonbabe]

Hi all,

So I went for another follow up with my consultant yesterday. I have an endometrioma and severe endo (bladder, bowels etc). I asked the following questions and got the following relies. Who was right?

-my endometrioma came back straight after the lap at 5cm. I think it needs removing before I get a referral for IVF. He said "go for the referral first, they're gynocologists and will just remove it if they need to. If I take it out first it may be unnecessary."

-what about putting me on these injections you mentioned. He said "problem is you either want to manage pain or get pregnant. You can't do both and when ttc injections aren't for you".

-will injections "kick start" my ovaries? He said "IVF do a similar thing with a tablet. Do it through them".

-can't you refer me to the specialist endo centre down the road? He said "well there's a specialist here now who has similar qualificiations and is very interested in endo".

-can't we look at removing it. This is where it got interesting. He said "it's not like I don't want to operate but no one will be able to remove all of yours ever. It's so bad. We'd effect your vital organs and could make you worse. Plus, this wouldn't necessarily improve pain or fertility".

-will this endometrioma take over the world? It seems massive and the pain in my pelvis is now just as bad as the ovary? He said "no. It might not even grow and if it does it'll just grow into the stomach and you won't know it's there". (I know it's there. It knacks. Plus My left side is bulging where my right is not).

And so on and so on. Luckily I had a friend with me who said she felt like I was completely fobbed off.

After reading so much on here I really felt equipped and knowledgable. I've read research papers on endo, endometriomas and IVF recently.

Is it worth trying immediately for a referral to IVF? I don't really want IVF. Psychologically I don't have hope in it, despite knowing it works for some.

Should I ask my GP to refer me to the specialist endo centre which is the same distance away as the hospital I'm at? Is this endometrioma going to take over the world?! I feel like there should be some cliff hanger music.

Joking aside, I feel lost. Please help x

[Noguat]

Hi,

While I don't have any answers, I didn't want to read and run. If you're concerned about your endometrioma and you feel like you're being fobbed off then you should insist on a second opinion. Have you tried talking to your GP and asking for a referral to the Endo centre up the road?

Your opinion on IVF is similar to mine. I've had a laparotomy where I had a 10cm endometrioma removed, a laparoscopy to remove as much endo as possible and drain a new 6cm fluid filled cyst, I was told that it couldn't all be removed as it's on my bowel and she didn't want to cause further damage - I was pleased about that. Then we tried to conceive naturally. When the endo pain became too much again I took 4 months of Zoladex injections (best thing I've ever done!) then tried Clomid for three months. When that didn't work I was given Gonal F injections. This is my first month and I'm yet to find out if that worked. I know that the next step is IVF but I just don't have a lot of faith in it, especially when I've looked at figures here in the North East.

If you do decide to go for the IVF then I don't suppose that going for the referral will hurt and they might be able to give you better answers about your endomerioma....

x

[Brottonbabe in reply to Noguat]

Thank you for your reply. Interesting to read your story. I'm in the north east too.

I've spoken to my GP who knows less than Google!

I've been referred for another scan and the consultant said he'll take it out if it's big (don't know what he considers big!).

Interesting you said about the injections, he said whilst I'm ttc to avoid them x

[Noguat in reply to Brottonbabe]

I guessed you were from the north east when you said it knacked

Yeah, while I was on Zoladex we had to use contraception but it was quite nice to have 4 months off. Nice to not think about it and not have any pain. The sweats were a pain but hrt helped.

It's not so good when your gp isn't very clued up. I suppose the scan will tell you more and hopefully you'll get some decent answers from them.

I thought 5cm was classed as big... I suppose it might depend on each individual. I hope you get answers quickly! Xx

[Brottonbabe in reply to Noguat]

Thank you x

[Breadmouse]

Hi. Yes it sounds like you were being fobbed off. I'd ask gp to refer to specialist centre. FYI I had an endometrioma that got to 18cm and yes it did bother me! A lot. I'd like to see him with a large lump in his pelvis!!!

Good luck

[Brottonbabe in reply to Breadmouse]

Haha good point. Thank you. Yeah, ok keep checking the endo out first? That was my initial plan.

Wow 18cm! There's something seriously wrong when we're expected to just live like this and crack on regardless!

Thanks for responding x