Anyone else with diaphragmatic endometriosis?

[sjh_1980]

Hi

I was diagnosed with grade 4 endo in 2016 and went through 2 laps and a bowel resection. At the time they also found endo on my diaphragm but to my knowledge this was never removed.

I was due to see my consultant last month but the appointment was cancelled and the hospital is not taking general appointments yet.

Recently I have seen an increase in symptoms, different to what I have had before especially pain in my ribs and feeling breathless when I haven't done anything.

Just reaching out to anyone else who has had the same. 🙂

[plotments]

Hi

I was diagnosed in 2017 had second lap Feb 2020 removed some endo but waiting to see specialist bowel surgeon to remove more I'm a bit of a mess inside!!!

I've been getting right sided rib pain for over 12 months this becomes worse when mid cycle and on period....also breathless and a cough which starts first day of period and then goes when I've finished. The pain will go right across shoulder and up neck.....the best way to describe it is similar to the pain you get from the gas after a lap.......I mentioned it to consultant and his reply was "that's interesting" . Will mention it again when I finally get to see specialist at endo centre.

take care

[Bespp in reply to plotments]

I am exactly the same. All the things you mentioned.

[sjh_1980 in reply to Bespp]

Yes I have always had bad shoulder and neck pain - similar to when you trap a nerve. When I mentioned to my first consultant he said it wasn't related. Only after finding adhesions on my diaphragm did he change his mind

[Bespp in reply to sjh_1980]

Will defo be following up with them on my next app. Have been keeping a diary with all my symptoms and next appt is september.

[Dance_20]

Hi both, please don’t ignore these symptoms. I had two episodes of pneumothorax earlier this year and got diagnosed with catamenial pneumothorax/thoracic endo. I had a thoracic surgery a few months ago when the surgeon excised endo from my right diaphragm. I was diagnosed with severe endo last summer, but was never told that my endo was so bad that one day it could travel up to my thorax and cause permanent diaphragm and lung damage. So without scaring you please please talk to your consultants and tell them to investigate this properly and refer you to a thoracic surgeon. Please don’t wait for your lung to collapse which is a medical emergency. Endo specialists don’t operate on the thorax. I hope this helps but please let me know if you have any questions.

[sjh_1980 in reply to Dance_20]

Thank you that is really helpful. I am struggling to get in touch with my consultant as they have not yet started up full services again. I will keep pushing though and have set my GP on the case today who is pushing from their side

[plotments in reply to Dance_20]

Thanks for the advice....I will explain my symptoms when I get to see specialist endo consultant. My GP says she can't do anything and I just have to wait to see them

When I've looked online it always says diaphragm endo is very rare..... any suggestions how I can get my consultant to take my symptoms seriously and is it only diagnosed with a lap or can it be picked up through scans?

Already had 2 laps and waiting for another op for bowel endo....just feel like I'm constantly going to be having ops as hormone treatments aren't helping.

I hope you have recovered well from your operation and are finding things easier

take care

[Ano2020 in reply to Dance_20]

Hi need your help

How did doctor find it what scans or tests has he done I’m curious to know I do have stage four end and had a laparoscopy was spread to bowel and bladder but I’m scared now incase it’s gone somewhere else and he hasn’t checked like kidneys lungs ...

[sjh_1980 in reply to Ano2020]

Hi

They found it during my first laproscopy. I don't think they intended to find much but did a thorough check when they found my case was worse than initially expected.

[Ano2020 in reply to sjh_1980]

Oh ok will ask specialist in two weeks when I see him.xx

[Dance_20 in reply to Ano2020]

Hi Ano in my case my lung completely collapsed and I was nearly dead. Given I was pregnant I thought it was something to do with pregnancy I just could not breathe even sitting and had chest pain. I was sent to a&e where they did a chest x ray. This can diagnose a pneumothorax and then wheeled into the resuss emergency ward for an immediate chest drain procedure. Please request your specialist to do a chest x ray if you are breathless and have a chest pain and a pain radiating from neck shoulder arm. In my case it was in the right side. When it happened again I knew the symptoms so it wasn’t as dramatic.

[Ano2020 in reply to Dance_20]

How do they remove endo on lung or do they leave it and we loose our lungs 😰

[Dance_20 in reply to Ano2020]

Hi Ano they do a thoracic surgery (only performed by thoracic surgeons) which is very painful if your lung collapses more than once unless you work as a pilot or an air hostess. One cannot have this surgery if they are pregnant. In this surgery (given I had miscarried by then) they excised endo from my diaphragm. They also did a mechanical pleuredesis in my case to stick my lung and pleural wall which had got damaged. I am now going to have a severe endo operation (third op this year) to remove endo from all other extra pelvic areas but unfortunately I have come down with a post thoracic surgery neurological disorder (my right side is semi paralysed) so I am consulting a neurologist now who is investigating the cause of my mobility issues. I hope none of you have to go through this so please push your docs to get a diagnosis done ASAP and before you suffer a pneumothorax. Once you have had a pneumothorax your lung and in most cases if it is endo related (catamenial) the diaphragm too gets permanently damaged. I have reduced lung functionality and a chunk of my diaphragm had to be removed. Three months into the surgery and I still cannot walk normally yet without feeling breathless and right side hurts like crazy. The other thing to look out for is ANA blood and if that comes out positive please consult a rheumatologist. I believe people with endo have a tendency to have auto immune diseases. Unfortunately my Ana is positive too which came out as part of my lung investigation. I am under the care of 7 specialists presently so you can imagine how stressful things have been. So please give my example (although I am tired of hearing I am exceptionally rare case) to your docs and get a diagnosis asap. Remember a chest x ray can only detect when a lung has collapsed. An MRI should provide some indication of your endo has gone into your extra pelvic area which should cause alarm bells to ring. I hope they are able to help soon and good luck with everything

[kismelo in reply to Dance_20]

Hi, how are you nowadays? Did you have a chestCT or MRI before the surgery? I was reading here that CT wouldn't pick up the endometriosis, only MRI... Many thanks

[Ano2020]

Thank u so much for all ur help 😘