Mri and endometriosis : Hi has anyone had... - Endometriosis UK

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Mri and endometriosis

Shelly085
Shelly085

Hi has anyone had an MRI an been told there is no deep endometriosis but gone for surgery an had it?

38 Replies
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Mri Dosent always show

Shelly085
Shelly085
in reply to Afrohair

So I could still have deep endo? As I’ve just been told I don’t have deep endo as nothing showed up on scan they reckon it’s just on the surface. Through an examination he did find a nodule on my posterior vaginal fornix an utersacral ligaments

Afrohair
Afrohair
in reply to Shelly085

Nodules are deep infiltered endometriosis I’m told .you hAve it in same place as me I also have superficial alongside that.its so annoying everyone has a different opinion on what’s what I was told mines mainly superficial and put a post up about it and someone commented cause I have a nodule it’s deep in filtered aswell

Afrohair
Afrohair
in reply to Shelly085

Don’t have a lap with general gynaecologist they won’t be able to remove that nodule you need a specialist that’s what I’m fighting for it’s been hard work I’ve got to now wait two week to see if my g.p will refer me

Shelly085
Shelly085
in reply to Afrohair

I’m seeing a specialist for endo at Mary’s Manchester, but I’m from Liverpool I paid to see him private as my doc was being a pain, he wrote a letter to my gp then there was no problem with referring me. He’s the one who felt the nodule but since my mri there saying it’s not deep so I don’t need a colectoral surgeon or urologist in surgery with me. I just don’t want to get in there an then they find it is deep an I have to go back again.

Afrohair
Afrohair
in reply to Shelly085

Your seeing same specialist as me dr osagie in Manchester that’s who I’m trying to get a referral with he also felt my nodule and said the rest is superficial 6.600 for a lap it would have been

Afrohair
Afrohair
in reply to Shelly085

You don’t need any additional people in is what he said to me you have it in the same place as me I asked him that he said since it’s not shown in my bowl just next to it

Shelly085
Shelly085
in reply to Afrohair

The nurse told me today it’s probably just on the surface of my bladder an bowel. Yeh his waiting list is so long I was ment to go 26th March but I kept phoning up for cancellation an told them I’d even come same day. When I phoned up Wednesday they said there was none but phoned me back straight away to say one had just come up for the following day. I saw one of his team when I went on thurs an he just gave me PROSTAP injection said he would pre book me for surgery which is like 8 month waiting list. But told me to come back in 4 month to see how I’m getting on, when I went to book the 4 month one they said he had none his list is so long so they will have to get in touch with me. I just hope I get sorted sooner than later as I don’t want to stay in this prostap as I want a baby . I hope you get an appointment soon, just be careful as even tho my gp requested him it when to general gyno doc I kept saying it was him I wanted to see they said they would have to chase it up as he’s in a different department that was going on for like 2 months then when they finally got it right they tried to put me with different doc again as his list was sooner. I just said no I wanna see dr Osagie as I’ve saw him before.

Afrohair
Afrohair
in reply to Shelly085

His list is 9 month wait omg!thats what he said he told me to go on prostap it’s so annoying the wait I haven’t even referred yet as my doctor is on holiday I only want to be seen by him

Afrohair
Afrohair
in reply to Afrohair

I want a baby aswell I’m thinking not to do prostap and see if it happens how is it on prostap was worried about periods returning after

Shelly085
Shelly085
in reply to Afrohair

I tried for 6 years to have a baby an never got pregnant so hoping the prostap will help in the end once everything returns. That’s what I’m worried about how long it will take my periods to return especially if I go for the 3 month one, as I’m 35 this year so times not really on my side. But I really can’t cope with the pain anymore I’m taking voltorol suppositories an co-dydromol an have my ya-yu bottle stuck to me lol, I will let you know when the month is over how prostap has been. Let me know when u get an appointment

Afrohair
Afrohair
in reply to Shelly085

Your near same age as me I had a baby in June but lost her at 12.5 week I’m 35 in September I’m so sorry you’ve struggled so much have you had any other testing other than your endo.if you see my recent post this lady said she waited 9 month for her period to come back and it wasted time she said she was already nearing 40 I looked at nice guidelines and it said not to take anything everything is so contradictory there’s this other girl on here didn’t take anything got pregnant straight after surgery I don’t want to be waiting for my periods after surgery

Shelly085
Shelly085
in reply to Afrohair

Aww so sorry to here that I’ve had my tubes checked with the dye With my previous gyno doc they said that was all clear. An I asked Ken the other day can he check my ovarian reserve the nurse told me today it was good, I got my medical records from my doc an it says in 2014 I was diagnosed with PCOS but I’ve not been told this. I don’t think I will go for the 3 month injection now, as if it’s gonna take that long for my periods to return I might of already had surgery by then. Or just see if I can go for a 1 month one again if it’s good

Afrohair
Afrohair
in reply to Shelly085

Please don’t let my say so influence you just what someone on here told me I’m also very indecisive about wether to have it I’ve got two week to decide now as my g.p is on holiday but I’m thinking not to as the pill made me worse and my body hates hormones I’m not on anything now .did she tell you it can damage your bones aswell it’s only temporary they don’t tell you all side effects and also your to wear condoms etc in case you do get pregnant !cant believe they only just told you about PCOS wtf?useless they are if I had money I would go private I tried to see if I could come up with cash but there was no way he can get you in within a week !

Shelly085
Shelly085
in reply to Afrohair

I thought it shuts all your hormones down as that’s what I was told I should feel better as I won’t have all the hormones in my body. The pill used to give me really bad headaches to the point I couldn’t move. The mirena also didn’t work for me. My previous gyno doc tried to get me on Zoladex for years but I refused. But they said this makes it easier for them to see during surgery as you don’t have the swelling or bleeding. Same here if I had the money I would go private, I tried to go for ivf but got told I don’t meet the criteria where dr Osagie said he doesn’t understand why there saying that as I do. I haven’t got £10,000 to pay for it

Shelly085
Shelly085
in reply to Afrohair

I’ve only had the one month dose first to see how I get on booked in for 3 month dose 9th March, they did give me hrt to help but so far I’ve not taken them. But the nurse told me today that it takes like 6 weeks to fully work she said my symptoms might get worst at first, I’ve been getting random sharp pains an back ache so far. She said it’s a good sign it’s not showing up deep endo as sometimes they have to take some bowel away. His team are really nice can’t remember whose I saw I know his first name was Ken lol

Afrohair
Afrohair
in reply to Shelly085

I haven’t had mri he said he could tell from my exam he said I won’t need some of bowl removed

Afrohair
Afrohair
in reply to Afrohair

It will probably be a later if superficial they only need specialist if they take some out I think

Shelly085
Shelly085
in reply to Afrohair

He said on my exam I have stage 4 endo but now I’m thinking if it’s not deep then do I actually have stage 4. He done the mri as he wanted to see where the deep endo was but nothings showed up

Afrohair
Afrohair
in reply to Shelly085

Is it on your ovaries I thought that was stage 4 it’s all confusing I just think it Dosent matter as long as it Dosent effect your tubes so staging is just silly to me as long as we get our babies in the end endo can do one lol !

Shelly085
Shelly085
in reply to Afrohair

I’m not sure where it is only places I do know it is utersacoral ligaments an posterior vaginal fortex. Yeh exactly hope we get them. I was thinking of fostering as my sis had trouble an she adopted then found out she was pregnant. So she keeps telling me to try fostering lol

Afrohair
Afrohair
in reply to Shelly085

Aww bless I have children with my ex but was planning one with my current partner it has been a big blow to us!ive had symptoms since last April but think I’ve had endo around 3 years x

Shelly085
Shelly085
in reply to Afrohair

I’ve had endo for just over 20 years I was lucky enough to get diagnosed when I first had problems, my sis won’t go an get checked, I’ve got cousins who have it one can’t have kids, my mum thinks she had it but she had a hysterectomy at 34 due to a massive fibroid, I had a fibroid 2 years ago they found it when I had surgery for my endo but luckily it was only small. Does it hurt you to go toilet when on period as it kills me

Afrohair
Afrohair
in reply to Shelly085

That’s like my mum she had fibroids .most pain I get is on my period and I have awful bowel movements .you should be entitled to ivf if no kids I would push for it more or change g.p they are saying it’s like a lottery these days some get some don’t.your sis should get checked but she probably not bothered now she has kids and won’t want to go through surgery to check .funny enough it’s my first pain free day since I stopped the pill I was in pain every day for the last two month but I won’t hold my breath it probably be back tomorrow

Shelly085
Shelly085
in reply to Afrohair

I get pain right throughout the month but worst on period, I dread going the toilet for anything when on period as it kills me also sometimes to walk an even sit down. They just need to find a cure as it ruins your like it’s scares me when I think about if I had a daughter as I wouldn’t want her or any of my nieces to get it. My sister is just a freak about scars. My gp has been really good he even appealed for me as he said I should be able to have at least one shot, but it’s not him that makes the decision, they said I would have to pay for 6 rounds of iui failed to get it for free, there 1600 ago. But I’ve never been able to predict ovulation as my cycle is anywhere from 24-50 days

Afrohair
Afrohair
in reply to Shelly085

Omg that’s terrible use a different g.p and apply for it that’s disgusting yes it’s awful on period I always bleed out my bowl and I feel like disgusting if I tell anyone so I keep it to myself unless I’m on here lol.and yeah it does hurt like mad on your period but outside aswell I get pain !surprised at today Pain free for once.sex hurts !terrible disease .yeah I’ve got a daughter scared she will have it but I think mine started through having her via c section I just don’t know it started after I had her x

Shelly085
Shelly085
in reply to Afrohair

It’s Liverpool I’d have to go live somewhere else to be considered, they reckon it’s present at birth now it’s just when it kicks in, as some dr found it. I just feel like I moan all the time I’m constantly tired also no matter how much sleep I get but doesn’t help my epilepsy tablets make you tired an I also have fibromyalgia. I always mess around with my parents saying I got all the faulty genes lol

Afrohair
Afrohair
in reply to Shelly085

I always say that to my mum!lol went to opticians today they said my right eye is going I’m fuming my mum is blind in one eye I can see clearly in my other but one side is blurry they have had to change my prescription. I said I hope I don’t go blind in one eye I’ve only wore glasses for 2 year and everything going all at once as if endo isn’t bad enough I already feel like an old person.do you know anyone who lives somewhere else you can use their address and sign up can’t you sign up to a different g.p and apply that’s so bad you can’t expect to have that much money hanging about

Shelly085
Shelly085
in reply to Afrohair

Bloody hell I hope your ok, I’m just short sighted but I heard it can grow behind eye an stuff so could actually be to do with that. I know ppl with endo tend to have other conditions. I know I always say to my mum I feel old to

Afrohair
Afrohair
in reply to Shelly085

And yeah it shuts your ovaries of but apparently you can bleed first two month or so so apparently can still get pregnant till it sinks in but it can take a while to wake up again after a few month for some longer for others if I try prostap I will try 4 week first

Shelly085
Shelly085
in reply to Afrohair

That’s all’s I’ve done tried the month one first, I will no end of month if it’s stopped my period straight away

Afrohair
Afrohair
in reply to Shelly085

Good on your sis!did she have endo just found out my auntie had it.my mum thinks she may have x

Afrohair
Afrohair
in reply to Shelly085

As I bleed out my bowl I thought I had recto vaginal he said I don’t have that

Hi, yes every time my MRI has been clear yet when I've hadd the laps DIE RV endo has been found x

Yes. I had an mri scan which showed my ovaries and womb were out of place but didn’t show endometriosis. Fobbed off for years and years.

It rarely shows on scans apart from cysts.

On each of my operations they have found deep stage 4 it was everywhere and I am currently on long term sick because i can feel it is back again.

Good luck xxx

Yes and was very infected with it in several organ involvement.

Doesn’t necessarily have to be deep endo if they can’t find it on mri most cases it doesn’t show on mri... I had a ct and multiple scans and it didn’t show until I had a laparoscopy which then confirmed I had it.

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