Endometriosis UK
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Newbie to Endometriosis, and possible Adenomyosis

Hello - needing some advice about adenomyosis. I’ve just had a diagnostic laparoscopy which found mild Endometriosis. However during the brief chat after the Op with the surgeon he said he thinks I could have adeno, but he didn’t explain why. I have lots of symptoms - to a greater or lesser extent - that pointed to endo but as I mentioned this seems to be mild. I have non-period symptoms, but in terms of my period these are lengthy, painful (also like a heavy dragging feeling) I clot lots and need to change a night-time pad every 1-2 hours in the day-time. How is Adeno diagnosed; I have read that it can only be done by hysterectomy but I’m still trying to have a family (3 cycles of IVF, 3 miscarriages). I also read adeno can cause miscarriage due to repeated contractions?! Any advice on this condition would be appreciated as it’s all new to me and I’m now very confused where to go from here. How do I get a diagnosis? I will get a follow-up post-op in 8 weeks.

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Hi weemrsh .

Sorry your surgeon was so unspecific- how frustrating.

Did he remove the endometriosis that he found? Did he say the location of the endometriosis?

I had two endo implants found in my pouch of Douglas( area between uterus and rectum) where mine was had a huge impact and was the sole cause of our infertility.

As for the adenomyosiz I don’t know what advise- but I have read online it can be treated for women who want a family. I think hysterectomy is more for severe cases.

I think your consultant will want a closer look inside your uterus- he may want to do a hysteroscopy and if he didn’t remove the endo you can have a lap at the Same time. You are in your rights to request anaesthetic during the hysteroscopy- i was terrified of the thought of having one done but I was told if wanted it done under general it would be fine- just means I’ll wait longer to get if done which I’m happy to do if I need one- my appointment with the gynae is next month.

I don’t know for sure how adenomyosis is diagnosed- but if they see something that looks ify and the consultant is unsure they usually like a closer look . My fertility consultant who ordered a scan (since my miscarriage my symptoms are back and worse) said my lining isn’t in uniform and thinks there is tissue that may need removing so he’s referred to his colleague for further investigations.

Did he take any biopsy of any of the cells? That can determine what it was.

It is so hard to understand what has happened after being under- my consultant gave me so much I information but I couldn’t take anything in! Luckily my mum and hubby were there to relay what he said.

You should be able to get a copy of the surgery notes from your gp and you ask your gp to explain what it means- medical terminology confuses me!

Anyway I’m waffling on now but happy Christmas and all best for your next appointment hope it goes well xoxo

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Hi Jess, yes the endo was on both ovaries, and another location on the left towards my back that I can’t remember what he said. That was all cut out. I also have on back passage which wasn’t treated at this point. I’ll ask about that at follow up consultation as that’s a source of a lot of my symptoms. Re the adeno, literally all he said was he thinks I have it, so don’t know if he took a biopsy- he is an endo specialist and the centre is BSGE accredited so I’d hope he did.

Thanks for your response and wishing you a lovely Christmas and best wishes for 2018 xx

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Hi I am 46 and have adenomyosis and endo, the adenomyosis diagnosed by MRI but at a lap an experienced surgeon can spot the signs though can not confirm diagnosis as is within your uterine muscles. I have had an ectopic and 3 missed miscarriages. Where body can sustain pregnancy but failure to implant properly. I had my son in 2011 and due to a mild blood clotting disorder had to take aspirin and inject bump with Clexane. My son is fine but did come a month early.

Adenomyosis is even less well known than endo so read up and don't be afraid to take the relevant info to all your appointments.

I hope it works out well. X

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Thank you for your response. So sounds like next step is to see if specialist took a biopsy at the lap, and request an MRI if he doesn’t offer one. I’m sorry for all your experiences. This is all very new and I’m 2 days post-op so a bit emotional too. I’ll get there x

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