Lap- no endo, MRI- no adeno

[Gill1977]

Having been diagnosed and treated for endo about 14 years ago, my recent lap found no endo....the consultant suspected adenomyosis and sent me for mri. The mri didn't find adenomyosis but a small cyst on my left ovary (but all my pain is on my right, right up to my ribs, side, groin, hip, back, leg?!?!) and a number of tiny fibroids. He said my uterus was more or less normal in size.

I just don't get it. I tick so many boxes when it comes to endo/adeno (I would say mainly adenomyosis). I don't really know what to do now. Anyone else in a similar situation?

Dr wanted to try me on chemically induced temporary menopause which I'm reluctant to do due to potential side effects. Why would he offer to do this if I don't have adeno or endo??

Feeling utterly lost. Xx

[Moon_maiden]

Was it the same consultant? If not, did they gave the right knowledge?

I’ve heard several stories of surgeons missing it.

[Gill1977 in reply to Moon_maiden]

Same surgeon under private hospital. I just don't get it. Last month I literally exploded with my period (and ruined my brand new bedroom carpet). Surely that's not normal!?! I tick so many boxes that I just can't understand it. Xx

[Moon_maiden in reply to Gill1977]

Doesn’t sound normal. Can you ask the secretary for a copy of the notes re op and MRI? Also discuss what’s happened.

More or less doesn’t say much about uterus size though.

It’s needs checking by someone to see what’s happening, have you spoken to a doctor about it?

Whether it’s helpful or not, cold water is best for blood.

[Gill1977 in reply to Moon_maiden]

Thank you moon maiden. Got the cold water on it straight away but there was so much of it that it stained anyway. 😖

I think I will request my notes and try to discuss with my gp. The consultant I'm seeing privately was also my surgeon.

I know adeno is notoriously difficult to diagnose with many women only having a firm diagnosis following a hysterectomy. I just hoped it would be seen on the mri, then I'd know for sure what i am dealing with (I like cold hard facts!) Its hard to know what treatment to try, when you don't know for sure what on earth is wrong - or if you are just being a huge drama queen?!?

Thank you so much for taking the time to respond to me. It's so appreciated xxx

[Moon_maiden in reply to Gill1977]

I’m sure your not being a drama queen, fairly sure GP’s think I was last year. At least proved them it was physical 🤣.

Pity stains aren’t shifting, insurance?

For someone else’s foot wound some years ago, had to throw sofa and rug out. I know how you feel.

I haven’t been diagnosed with Adeno, but no ones looked inside and uterus is 14-16 weeks in size, and distorted. That was his words in the letter. I haven’t asked what that meant. Not sure I want to. 😂

[Gill1977 in reply to Moon_maiden]

Insurance is an excellent suggestion! Never even occurred to us.

Given the size of your uterus I would say adeno for sure. I've managed to go full term with 2 pregnancies and at 14/16 weeks I felt and looked like I was carrying a bowling in my belly. Really feel for you. I'm quite slender and work out alot, but often looking like I'm 3 months pregnant. So frustrating xx

[Moon_maiden in reply to Gill1977]

I think house insurance gets forgotten a lot and at the moment it may help.

I’ve not had children, my choice, likely why endo has decided to play. It shouldn’t really be an issue, I’m 52, but no menopause yet. I’m out of doctors comfort zone with this 😆

It’s great you were ok and had two children 😊, I know it can cause issues.

Let us know how you get on. Take care

[Jackie990]

Could it possibly be muscle/nerve pain? I had pain a few years back that sounds like what you're describing (but I also have endometriosis & enlarged uterus). That pain was different...it also went down into my leg. A physical therapist actually found I had a muscle in my right side that for whatever reason was tight & would actually squeeze anf constrict around a nerve that was adding to my pain. A few months of physical therapy- mostly massage & electrotherapy helped immensely- although I still have pain due to the endometriosis and uterus issues and continue to battle them constantly.

[Imo82]

I feel for you too. I had all the work ups, leading to a diagnosis of endo. Nodules felt on uterosacral ligaments at pelvic exam by two different gynaecologists. Back pain, prlvi pain,heavy bleeding, clots, pain passing a poo, pain trying to wee, fatigue, brain fog etc. I had an MRI which showed areas of DIE deeply infiltrating endo sticking my uterus to my bowel and other suspect areas. Was moved up the list for surgery with my consultant and a colorectal surgeon. Woke from surgery to be told they were surprised to find not much there at all and 8 weeks later found out the small suspect areas they did remove and call endo on my discharge letter were negative for endo. 5 months later still with no answers, still with the same dehabilitating pains and symptoms.

I'm on a path for referral but its slow and won't move at all whilst we are in this current situation. I feel all of your frustrations and wish there was some magic solution.

[BitterSweetS]

Prob best to check notes. I miss heard my Gynea Dr, she did have a strong spanish accent, thought she had said they had found Endometriosis on my MRI which I questioned....turned out after reading my notes a month later, once I got hold of them it was Adenomyosis.

Im sure you have found things over the 14 years that help you with your pain, try not to feel too down about this lack of diagnosis this time.

Think about how far you have come living with this...womens health medicine is far behind. Your pain is real, you are feeling it, take care hope that lost feeling is only for a short while.

Take care x

[JOSANDY40]

Hi, You probably have Endo that can't be seen, perhaps scary issue and nerve damage. As I have got older my symptoms are more constant but not as crippling. My organs are less flexible and this results in food digestion, bowel and bladder issues. There is inflammation present some of the time and often my ovaries play up, by themselves or cos other organs are rubbing against them. It's still a circle over the month even though I have no periods.

Its not nice but exceptance of this disease and working within its remit.

I wish there was a answer.

Warm wishes.