newly diagnosed: I was told I have endo in... - Endometriosis UK

Endometriosis UK
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newly diagnosed


I was told I have endo in November and had surgery that same month which it was "removed" My doctor has made endometriosis seem like its a simple fix and not a big deal. I started getting the pain back about a month after the surgery a lot worse than it ever was, but was told by my doctor the chance that it came back was slim. She has left me a little in the dark about this condition, I had a lot of questions she couldnt answer. can anyone clear this up for me. What are the chances that it comes back and can it spread?

10 Replies

Did you have a follow up a pointment eithbuou surgeon after your op,

melann28 in reply to Tboag

I did have a post-op, I felt fine for a while, when symptoms started coming back I went to see her and this is when she advised me its not likely that it came back or spread. I have an app with a specialist for 2nd opinion, I wanted to make sure im asking the right questions.

Hi I am sorry your in pain! Horrible feeling I know. Once you have been diagnosed with endo you will always have it. Surgery can help but it can grow back. Endo is a disease and there is no cure for it yet. Please seek further advice from a specialist. You may need to be referred from you GP.

Take care

melann28 in reply to Missy_22

any tips on pain management to get me by? I have a little bit of a wait until my specialist appointment.

I haven't yet had my lap but my gynecologist made it seem like endo was no big deal and easily sorted. I also have two fairly large fibroids to which his response was "40% of women have fibroids. You're not alone." Don't know if this has reassured me or made me think he's not really that bothered! Hope you get your answers soon.

Did you get the mirena coil or are you taking an endometriosis friendly version of the pill?

After the endo has been removed, it is liable to grow back if one doesn't take action to limit menstruation and address estrogen dominance.

Painkilling options - depends on what you've tried and are currently taking. Also if you have pain all the time or at specific times such as ovulation and/or period.

My doctor told me the only drug to take for it is a self injectable drug once a month. That was the only option she gave me. I have pain everyday to the point where I want to go to the ER but I know there's no point in doing that. She will only give me 800mg ibuprofen :( which really has been no help at all

Hi dear, I know the feeling and I understand. Was also diagnosed with Endo in November as well. My gynea left me in the dark. He couldn't give me answers to the questions I had. Right now I'm on vissane and now on day 35 of the treatment. Was suppose to have my periods on the 24th, haven't had them till now, there is not even a sign that I'm gonna have them. My only problem now is the sharp abdominal pains and I'm forever bloated. And it's so hurting that I only saw now on the comments that endo is a chronic desease.

Im sorry to say this but yes can be back... I had same issue after my 1st lapo... By the 3rd month all pain was back and worse.. i went docs and was told same as you...slim chance. I had to fight for 2years of back and forth to finally see my actual consultant who did my surgery.. she operated again 1month later and it was back bad! All gone again now and been diagnosed with adenmyosis too. 14days now since lapo and coil fitted... But feel a slight pain where was before.. hopinf its not back as iv had enuff.

Keep pushing for answers and never give up xx

Can I suggest that it's worth reading up the online information pack available on the Endometriosis UK website as a starting point to find out more? Some of the questions here are covered in that information I think, including what the disease does, how it works, what the current treatment options are, possible ways to approach self-help for management.

I have been researching ever since I was diagnosed just after New Year to find out more and found that pack to be a good neutral starting point. (I've since read up on all sorts including medical studies when I can find them.)


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