Hey,
I have suspected Endo seen on ultra sound.
my pain was usually around my period and pms.
However this has increased to daily pain. I’m on the list for a laparoscopy but the wait is another 6-9 months. I’m considering the mirena coil to help with the pain as it was recommended and my appointment. Will this affect me having the opp ? I really don’t want to be taken off the list.
hun no I have a mirena coil and it didn’t effect my op hun. If they recommend it then think long and hard ? Why I say this is because mirena can cause issues sometimes if you haven’t had children. I was I. South a desperate state I had my first mirena about nine ten years ago but that one only lasted a couple years as it fell out of place and doctor just touched it and it came out and then had another back in 2019 to be honest you need to way up the pros and cons. It did help me but when I had my lap they found a frozen pelvis and deep infiltrated endo all in my bowel and a huge endometioma so I don’t think it stopped my symptoms as such as the damage had already been done. The issue I have now is really bad pain I’m not bleeding as such but the pain still feels like am on a period xx
Thank you! Yeah I haven’t had kids yet. I don’t have a partner so I feel like I cannot worry about that right now. Also TMI but sex is soo painful I’ve kind of written that off for now. I just cannot deal with this constant pain. It’s soo depressing. I’ve exhausted my options with the doctors they never listen. Just really hope I’m not taken off the list for getting it.
Sex was also always painful for me I also don’t have a partner or children as am nearly 38 am kind of past that stage and also with probably being autistic couldn’t cope with children anyway xxx
Hi, the mirena can cause issues whether you have had children or not. It really varies from woman to woman how it will affect you. But no, it won't affect your operation lovely
Yeah I guess at least I can say I’ve tried it if it doesn’t work. I’m hoping they don’t take me off the list because of it.
They shouldn't take you off the list, my consultant wanted me to have one while I waited for my operation, and on the day he asked if I wanted them to put one in while I was under. I declined as I don't get on with hormonal medication!
I have had a mirena coil in for over ten years it hasn't helped with the pain side of things and I do still bleed but all the advice is to keep having them fitted. Then I had another consultant who wanted to take it out but to be honest Ive found it so painful having them in no way was I going to have it taken out in case I needed it back in.
Ohh Noo! I’m willing to try anything right now. Did you have your Endo removed and then have it put in ? It’s sad there’s no real answer to our problems.
Do you have any details of what the scan showed?
yeah my uterus was retroverted. Then it showed pco but I have no of it symptoms. I had a collapsed follicle on an ovary. pouch of douglas had moderate free fluid and in the pod there was a Heterogeneous area attached to my uterus. Says consider a endometriosis noudle.
So a suspected nodule is suspected severe endometriosis (rectovaginal). A retroverted uterus and really painful sex are typical signs and symptoms. The back of the uterus becomes stuck to the bowel and pulls the uterus back.
This must only be treated in a specialist endo centre. Do you know what sort of list you are on - is it in the general gynaecology department? If so then the problem with that is that when they do a diagnostic lap and find deep endo they can't do anything, they then have to refer you on to a specialist endo centre which means going to the bottom of that list which might add another 12 - 18 months for complex surgery.
What you need now is a more advanced scan - either by an advanced sonographer or an MRI which would give more conclusive evidence of severe endo which would get you straight to an endo centre. A lap is no longer the gold standard for diagnosis so you don't need one at this point. If you would like to join a FB group called Endorevisited we can advise you further. x
Hey,
Thanks a lot for your response. It’s really helpful. I am on the specialist waiting list been waiting since July. I met the surgeon when I signed the lap operation form and because of where it was he did mention I’d have to wait to have surgery with him. They said another 6-9 months. I’ve been having issues with my bowels recently to constipation etc. I have not had an mri I asked for one at my local hospital when I went to a&e as they couldn’t see anything on ultrasound but they refused and said to wait for the surgery. I’m going to join the Facebook group xx
I am having the same pain every day , having been diagnosed DIE endometriosis by Dye MRI scan instead of laparoscope . I am taking the dienogest (works same as mirena) at the moment to stop my period , I have done the research about this medication, there are a lot of people getting better after taking the dienogest , but unfortunately I am just getting slightly better. Because I have deep endometriosis that affect my rectum which cause extremely pain. That’s why I am planning to do operation to remove the endometriosis tissue. It can costs upto £10,000 to do the operation in a private hospital if you can’t wait that long . And £1000 for Dye MRI scan from a private hospital. I am not sure if your insurance covers it.
hey, sorry your going through this it’s soo horrible. I’m trying to stay positive despite being dismissed constantly. I wish I had the money to go private. I feel like it’s too late for to me to get private health insurance as I’m not sure they will cover it as it’s pre existing. I have heard it speeds the process up at lot xx
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