Endometriosis on diaphragm

[endosisterr]

Hi all!

So I was diagnosed with stage 4 endometriosis after a laparoscopy in 2016, almost exactly 3 years ago to the date! During the laparoscopy my gynaecologist also fully excised all of the adhesions I had.

Since then I’d had fertility problems but was lucky enough to get pregnant with my little miracle boy who is now 1.

After pregnancy I had no symptoms for about 8 months, then slowly the symptoms started to creep in again.

The last 2 months have been absolute hell for me. I’ve been hospitalised twice with pain and I am now taking morphine and codeine in order to just about function. I am currently off work sick and on the verge of losing my job due to repeated sickness absence.

I went back to see my gynae last week, who examined me and listened to my symptoms etc.

After examination she said she didn’t believe my pain and other symptoms were being caused by endometriosis, as she had excused it all 3 years ago and it only had a 30% lifetime chance of coming back.

I was pretty upset about this as all of my symptoms and pain match what I experienced for 10 years prior to my diagnosis in 2016.

My gynae believes it’s a bowel problem which could’ve been caused by scarring as she removed significant adhesions from there and had to unstick my colon from the left hand side when she performed my surgery originally. She referred me to a bowel specialist and I saw him yesterday.

There is nothing wrong with my bowel, according to the x ray that was performed yesterday.

I knew this would be the case, and I am absolutely 100% convinced I have endo on my diaphragm. I believe this is rare, but I am experiencing all of the symptoms ladies do when they have endo on their diaphragm. There’s no way she’ll have checked that high up when she did my surgery in 2016, so for all I know it could’ve been there for many years, growing and getting worse.

My question is, what do I do next? Do I go back to her and seem like I’m telling her to do her job? Or so I try to find another consultant and ask for a second opinion?

I know my body and I know my symptoms. I honestly feel like I’m back to square one with it all again!!

[Charts]

That's right only you know your body and you know if something is wrong. If I listened to the professionals everytime I wouldn't be in a good place now. The hardest part is getting people to listen to you. What symptoms do you get? I'm also thinking I got diaphragmatic endometriosis and hoping to pay for a MRI but chances are it won't pick up. I reckon when they do a laparoscopy they don't even check there so it just grows over the yrs.

[endosisterr in reply to Charts]

Thank you for your reply.

On top of the usual endo symptoms - the back pain, abdominal pain, heavy irregular periods/bleeding, bowel pain etc I also have awful shoulder pain and am increasingly finding myself out of breath. I was hospitalised with the shoulder pain 3 weeks ago and that’s what I’ve been having to have the morphine for as it’s horrific!

I’m convinced it’s grown over the years and it’s now at a point where it’s having a profound effect on my daily life!

I really like and respect my gynae but I honestly feel like she’s wrong on this occasion!

[Charts in reply to endosisterr]

Yes I have heard shoulder pain is one of the main symptoms and to be taking morphine it must be so painful! My main symptoms is pain under right rib, sometimes under left rib, shoulder pain every now and then and I'm breathless a lot lately. The gynaecologist I seen said she highly doubts I would have it as I haven't had periods for yrs, but again it could have been left from my previous operation 7 yrs ago. Desperate for a MRI now and have been waiting 3 wks for a phone call, thought I would wait a week max as I'm paying privately for this. Nothing worse than not knowing what is wrong with you ☹️

[endosisterr in reply to Charts]

That does sound similar to mine. I have horrific pain under my ribs on the left hand side - to the point where it’s sore to touch, like when you have a fresh bruise on your skin and it’s really painful to the touch.

I can’t believe you’ve been waiting so long! That worries me as I’m private too and you wouldn’t expect to be waiting so long privately!!

[Charts in reply to endosisterr]

I'm gonna have to get back onto her. It's funny because at one point I was getting a lot of shoulder pain and then it went, it just changes daily really. Lying flat is agonising and my stomach feels like it's on fire some nights. I got no choice to lie on my back now as I've had surgery on both ears so it's torture. The pain in ribs feels like I've been punched in them it's so sore. Can't you ask for a MRI? It's expensive thou

[endosisterr in reply to Charts]

It’s awful isn’t it? So debilitating!

I’ve booked an appointment with another gynae for a second opinion, which is a shame as I’ve always trusted my gynae since she originally did my surgery/diagnosis in 2016. I just don’t understand how she can examine me then say it’s not endo just from that. I’m not doubting her ability to do her job or doubting that she removed it in 2016, but I am certain she didn’t check as high up as my diaphragm.

It’s just so frustrating!

[Charts in reply to endosisterr]

Yeah definitely get another appointment with someone else. I think they do get funny sometimes when they were the ones who performed the surgery, like you don't trust that they checked everywhere. It's good at hiding behind things so it can get missed. I'll let you know if anything comes back on my scan when I finally get one! All the best....hope the next consultant is more understanding

[_EndoWarrior_ in reply to endosisterr]

Was your gynae surgeon/ consultant from one of the BSGE centres? You have to be very experienced and have special training to identify endometriosis especially if Deep Infiltrating like yours sounds like.

You should definitely get a second opinion.

[endosisterr in reply to _EndoWarrior_]

She’s not listed on the BSGE list but she does work at one of the centres listed there so I’m not sure where I stand with that?!

The one I’ve booked in to see is from one of those centres though! So hopefully he can shed some more light on it!

[Peren]

As you already have a diagnosis I’m pretty certain you have the right to be referred to and see a specialist. Look to find an endo specialist on the Bsge website and then take the details of who you want to see to your Gp and for referral.

I did this when I was getting poor care under a general gynae.

[hm89]

I also worry I have endo on my diaphragm. I have struggled with pain under my ribs (mostly right but occasionally left) and in my shoulder for years and nothing has helped. I’ve tried physio, massage, TENS, alternative medicine and steroid injections. I asked my doctor after my lap and she said “oh they do usually look up there so I doubt it”. Since finding out these symptoms can be due to endo I’ve started tracking when they’re worse and found on my period it really flared up.

[Tallulah182 Moderator]

Same symptoms as you discribed. Pain under right ribs, shoulder pain and during my period I also had pain if I took a sharp intake of breath or laugh. Almost floored me one day. Also couldn't lie down when I had the shoulder pain x

[endosisterr]

Thank you so much everybody for your replies. You’ve made me feel less alone and more like I’m making sense!

I’ve got my next appointment with the new specialist a week on Thursday, so hopefully he’ll be able to shed a bit of light on things.

[geekybird]

Thankfully my issues didn't include endo, as the more I read the more it appears to be a condition rife with doctors dismissing patients concerns, opinions and worst of all, pain. I really do feel for anyone suffering from this debilitating condition.

However, I have experienced having my condition misunderstood or downplayed and my opinion ignored. It is very hard, because doctors in general and surgeons in particular need to be utterly certain of themselves during surgery - time spent second-guessing things could be life threatening. The problem is that trait is not so useful when you are one in a thousand with an uncommon variation or complication of your condition which they won't entertain as a possibility.

Doctors are specifically not supposed to come to a diagnosis with preconceived ideas of a condition. In my experience, however, they seem to assume that none of their patients could be the exception to the 'norm'. I would see someone else. Also, prepare yourself for the possibility they might also dismiss your concerns and keep trying.

Best of luck getting your concerns addressed.

[Minky1985]

I was also diagnosed with endo in 2016. I recently went for my second surgery and they found it had spread to my colon, bowl, diaphragm and liver. Listen to your body and maybe get a second opinion if your Dr doesn't believe you.

[Mampysam in reply to Minky1985]

Did they remove the endo on your diaphragm?

[Endomy]

Hi endosisterr, I had diaphragmatic endometriosis, that was diagnosed 2 years ago after having lung collapse and fluids around my lungs that made me breathless. I was admitted to the hospital because of shortness in breath, cough and slight pain at my rt thoracic cage. After many investigations, including CT and MRI, they decided to do thoracic surgery for my collapsed lung. Only at that time and not before, my diagnosis with diaphragmatic and thoracic endometriosis was confirmed. they also did laparoscopy to remove endometriotic tissue from beneath my diaphragm. Since then and for 2 years now, I was on GnRh anologue injection to stop all my periods. this is my story, I hope it helps you. I think as long as you do not have respiratory troubles or lung collapse your diagnosis will not be confirmed. Even MRI and CT give poor idea about this, I have been following by CT every 6 months, and I cannot rely on their result to stop my treatment.. Hope you get better and live a happy life. At least, yoy can ask your doctor to give you treatment to stop your period. I think this will help.

[Mampysam in reply to Endomy]

Who treated your endo on your diaphragm- mine can be seen on the CT scan and is 3cm x 3cm.

[Endomy in reply to Mampysam]

I had cardio thoracic surgery to fix my pleura then gynecologist did laparoscopy to remove subdiaphragmatic mass. At that time, I was Dublin and my treating consultant was Irish. I still don't know options for you in UK.

However, you need both specialities consultations, cardio thorax and gynecology consultation.

[Jensx1]

Hey xx I would say always listen to your own body and seek a second opinion immediately. Million percent! I presume notes have to be made on what they did on an operation anyway.....ask her to send you the info so you can see and go from there xx

[Jensx1]

I didn’t know u could get it there tbh. I don’t wanna know where mine is I just want it out and fast!!!! Xxx