Hi has anyone had an MRI an been told there is no deep endometriosis but gone for surgery an had it?
Mri and endometriosis : Hi has anyone had... - Endometriosis UK
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
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.
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.
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
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
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
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 !
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
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
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
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
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
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
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
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
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