Diaphragmatic Endometriosis

[PizzaQueen22]

Hi new here, I would like to speak to someone with diaphragmatic endometriosis, I had a laparoscopy last week on an endometrioma and they found it in my diaphragm too so I am going to have to have another surgery. I want to know what to expect, how people cope with pain, tight breathing etc. I have tried Facebook forums but no one responds, I have heard it is quite rare which is probably why but if there is someone who has gone/going through the same thing, please reply.

[Vps1980]

I don’t think it’s as rare as documented, I just think it’s not diagnosed well, I have all the symptoms, right shoulder/chest pain/rib pain extreme shortness of breath etc, I mentioned all this to gyno and he was like well that doesn’t sound like endometriosis WHAT!!! Anyway I’ve requested an mri as I can’t cope like this much longer, it’s awful xx

[PizzaQueen22 in reply to Vps1980]

I'd never heard of it before, I thought I had arthritis before. My pain seems to be more in my neck strangely, I have had severe neck pain on the right side for nearly 4 years, but I have only found out I had endometriosis last month. I do get the odd pain in my shoulders and arm that just radiates down if I have a flare up. After my laparoscopy they say you get pain in your shoulder but I had it in my neck instead. So I can see why its hard to diagnose haha. Anyway I told them at my pre op that I thought I had arthritis so I think that's why they explored. xx

[Vps1980 in reply to PizzaQueen22]

Sorry I forgot to mention I also have neck pain xx

[Vps1980 in reply to PizzaQueen22]

What op are they preforming? Xx

[PizzaQueen22 in reply to Vps1980]

Not sure for my second one, I am meant to be seeing an endo specialist in about 4 weeks. But it says online for it in the diaphragm it could be either a laparotomy, laparoscopy or thoracoscopy so I assume one of those xx

[Vps1980 in reply to PizzaQueen22]

Good luck ❤️ Let us know how you get on xx

[Avourneen in reply to Vps1980]

Vps I don't think an MRI will help much with diagnosis of this type of endo. I asked for one with a very well known endo expert and he said MRI raerely shows diaphramic endo so you will probably get a false negative. He said MRI is really good for seeing endo elsewhere but that in this location it is of very little use.It isn't actaully very rare it is one of the most common sites for endo outside the pelvis but it's really hard to diagnose. Only a few surgeons in the UK are experienced at dealing with it so you need to choose who to go to carefully.

[Loulouboo]

Hi there I'm currently waiting for my first surgery after mri showed endo on my bowels , uterus n ovarys ,also bladder , I was in a n e last week with severe chest pain n shortness of breath! The a n e doctors sent me for ct chest scan n nothing came up so they put it down to stress n send me home but it keeps coming back ,I asked my endo nurse about it and she said it could thoratic endometriosis n its where the endo can grow up towards your diaphram n chest , she sed or it's done kind of panic attack or anxiety because of the strain my bodies under , so I have to mention this during my consultation in december xx

[Warrior101]

Hello Sorry to hear about your diagnosis! I had laparoscopy last summer to remove an ovarian cysts and endo lessions and they found an endometrioma on my diaphragm but as it doesn't give me symptoms at this stage they decided against operating it.

I would recommend after the surgery to work with a breathwork practitioner to optimise your breathing. The truth is that most of us don't use our full breathing capacity on a daily basis due to bad posture, stress etc. Simple breathing exercises done daily will help you to optimise your breathing and aid your recovery. xx

[PizzaQueen22 in reply to Warrior101]

I had an endometrioma but on my ovary, they're horrible and yes my sisters suggested cardio (she's a personal trainer) to get my lungs/diaphragm stronger so I can breathe better but working out just makes me feel sick, but breathing exercises is a good idea. xx

[Gigi40]

Hi there, I have suffered abdominal endometriosis for over 20 years and just coped with it using painkillers, but its only about 3 years ago when I started feeling really breathless with small activities, pain in right shoulder and neck, extreme fatigue and pain in thoracic area that I knew it had taken a different turn.

Anyway turned out the endo had spread upwards to my diaphragm and right lung and they found i had fluid in my right lung. They drained it 3 times and it always came back with each period. They put me on Zoladex to stop my periods while waiting for surgery. I then had VATS surgery to clear out the area and they did a biopsy and confirmed endometrial tissue in my right lung, upper liver and diaphragm. It was manageable for a few months and then the fluid built up again and I had to have a second bigger surgery where they removed the lining of my right lung and a small portion of my liver and repaird a tear in my diaphragm all due to endo. Anyway it's been a slow but steady recovery and so far the fluid hasn't returned. I have since come off zoladex and though not yet 100%, I feel much better than I used to. Lots of herbal remedies and modified diet and excercise is helping a lot.

I must say everyone's experience is different but I suggest you get the right person to deal with as that's really the first step to recovery - getting the right diagnosis and a consultant who knows what they are doing, otherwise it can be a really long and arduous journey.

All the best 🙂 and please feel free to ask me anything if you need to. You will get through this.

[Vps1980 in reply to Gigi40]

Oh Gigi you give me hope ❤️ I’m so poorly with all these symptoms and it’s hard getting listened to, glad you’re recovering well xx

[Moon_maiden]

There’s a video on thoracic Endo on the Endo UK YouTube m.youtube.com/channel/UCm6h...

It was interesting

[Smorgz98]

I'm not sure if mine was the same but I had a labroscopy to remove the small cells I had and the pain wasn't as bad as I thought it would be but I was under strict monitoring and rules as to what I could and couldn't do.