thoracic/diaphragmatic endometriosis- keen to hear anyone else’s stories

[Dolomite1989]

Hi Ladies, have any of you had successful surgery to help with Thoracic/Diaphragmatic endometriosis?

I was diagnosed with endo in 2011 and have had a couple of lap surgeries over the years but only confirmed/treated in pelvic area. After suffering symptoms of diaphragmatic endo for 5 years I reached breaking point when my periods returned after my son was born and finally had an MRI which finally confirmed at least one large nodule growing awkwardly between my diaphragm and my liver.

They hospital discussed my scans at an MDT meeting at the hospital and it was decided that I should try to conceive another child before having surgery due to the high risks involved with immobilising my liver etc. We were not ready for baby no 2 just yet so they suggested I tried zoladex injections to try and help suppress the endo. I ended up on this for a year, it helped reduce my pain for a short while but it was short lived and I had ALOT of side effects so I decided to stop the medication at the end of August. Periods and ovulation pain now back in full swing and I’m struggling to cope (with a toddler in tow too) the pain is taking over. I have like a week a month that I feel ‘normal’:

Telephone update with my GYNEA last week now I’m off the medication and they want to send me for more scans to see what’s going on as I haven’t had any for a year and the pain shouldn’t of continued whilst on the zoladex.

Feeling lost and like I’m not really being given the best advice from anyone- thinking of paying for a provide opinion once I’ve had the scans but in the meantime I would be so interested to hear of anyone’s own personal stories similar to mine and if surgery or anything else has helped you?

Thanks for taking the time to read! Xx

[Lindle]

Are you in a specialist endo centre?

[Dolomite1989 in reply to Lindle]

Hi Lindle,

No i am not - i am under the care of the team at the gynea centre at the JR in Oxford!

[MyStar86]

I’m sorry to head your story and that I can’t help. However I just wondered what are your symptoms with thoracic/diaphragmatic endometriosis? Take care xx

[Dolomite1989 in reply to MyStar86]

Hello!

Main symptoms are severe pain in my shoulder and rib area on the right hand side which is consistent with my cycle and ovulation. Tightness of the chest/ a cough that comes when on my period. Pins and needles down my arm! The list goes on

[MyStar86 in reply to Dolomite1989]

thank you for sharing!! Those are exactly what I’ve been suffering I’ve had multiple endo surgeries mainly bowel and a total hysterectomy but I kept going on aboht my diaphragm pain and they just said it was hard to diagnose I wasn’t offered any scans etc just a basic initial lap before targeted surgeries. I’m going privately to London to see a specialist that focuses on complex endo so hopefully he can help me xx

[Bendometriosis]

thank you for sharing your story. No advice I’m afraid but just wanted to say I hear you and feel the same way, you’re not alone!

I had surgery last April (3rd one in 8 years) and by September the pain was back (Ov and menstrual). We were trying to conceive but I’m now using the pill (norethisterone) to try manage the pain… My gynea referred me to general surgery with no clear way forward… we sit and we wait!

Please do try to keep your spirits up and keep pushing for answers and for tests. Xx

[Dolomite1989 in reply to Bendometriosis]

Hello,

Thank you for taking the time to read my post and respond and send words of encouragement! I wish you all the best in your long journey too and hope you have a clearer way forwards soon, hold on in there! xx

[Rookery17]

Hi sorry to hear your in so much pain so I was diagnosed couple years ago IV jus paid private for my lap and hystoscopy so I'm day 2 after surgery as I'm trying to consieve and goin to be starting IVF. So he diagnosed me with diaphram and bladder endo quite bad he was not able to remove very much as it's not his field and would want a bowel surgeon as it can cause damage and need rebuilding right now my priority is a baby so all my bits for that are endo free. I used to get severe arm pain backaches and cramps to the point I couldnt move. I have done alot of research into diet etc it's obvs not proved but I have increased certain foods cut out foods and I don't know it's jus seems to have helped I don't get arm pain I get pain which I can manage with feminex most months now obvs I'm no dietician it's jus what IV researched mite be worth a go antioxidant foods good luck I hope u get results soon it's not easy spesh as the wait is soo long on NHS if u can defo go private I'm so glad I did they have been amazing

[Dolomite1989 in reply to Rookery17]

Hello, thank you for taking the time to read through my post. Its such a long and hard journey for us all it seems! I have spent time looking into my diet to try and help but unfortunatly it has not helped me. I am also on month 4 of doing 3-4 workouts a week from home which seems to be helping by keeping my body moving as much as possible and releasing some good endorphines - its the last thing i want to do when having a flare up but i have found its really helped to distract me from the pain and pull myself out of my self pity hole!

best of luck with your journey. I hope you manage to conceive soon. I was told i would struggle and after months of trying I gave birth to my son in april 2020 so dont give up hope. xx

[Rookery17 in reply to Dolomite1989]

I really hope u get some answers and help soon it's such a complex thing and can take over at times but you will get thereThank u and to you xx

[LDC2024]

Hey!

I am being investigated for thoracic endometriosis due to coughing up blood the first two days of my period for the past year. 34 - healthy otherwise and I don’t have any classic endo symptoms throughout the month - just the first two days of my period I have asthma, cough and coughing blood. Unfortunately it has taken over a year (and counting!) for specialists to figure it out. Endo specialists where I live (Burlington, ON, Canada) are very few and far between. One I called had a 3 year waiting list (!!).

Surgery would be the suggested option however the CT scan showed nodules, but not confirmed endo in my chest. It’s hard to tell unless you’re in there, and here is in not standard practise to have endo specialist in the operating room. I also would like to have another child so I wanted to go that route first before surgery …but also I know coughing blood each month isn’t normal!!

I know you posted two years ago…How are you feeling today? Did you end up having the surgery? Did you end up trying for baby #2? Wishing you well!