Endometriosis on my diaphragm and liver

[Fraggle14]

Hi, after 10 years of misdiagnosis and a whole load of pain, I have finally been diagnosed with endometriosis on the muscles of my diaphragm and around my liver. It's a bit scary but great to finally have a label to put to my illness. I am due to see a specialist soon to hopefully have an excision, but am being sent to a liver/cancer specialist as I get the impression that many endo specialists are not used to endometriosis in other more unusual organs around the body. Does anyone have any experience of endometriosis in these organs and have you had any success with treatment? Thank you

[Twinkle30]

Hi there.

May i ask what your pain feels like? Also how you were diagnosed?

I was diagnosed with endometriosis in 2011 but in last three years have had discomfort which gets increases to pain randomly, in my right upper rib. The Gp ran some basic tests including an ultrasound but all clear. She said it could be adhesions from my gallbladder surgery but I am not convinced. It sometimes feels like my organs are sticking to my ribs!

The area was checked supposedly in my 2011 lap op but as I am discovering on this forum if your gynae isn't specialist they may not find it all!

Anyway would be interested to know your story a little.😉

Thanks

Laura

[Fraggle14 in reply to Twinkle30]

Hi Laura, thanks for your response. It's uncanny that you had your gall bladder removed. Me too. My pain started in 2006 and they initially suspected endometriosis but I was then rushed into hospital and diagnosed with gall stones. They removed my gall bladder, only for the pain to continue a couple of months later. Over the years it has progressively got worse and I was eventually back in hospital after suffering a miscarriage in 2012. I can only assume the drop in hormones had a massive effect on my endometriosis. An ultrasound showed I had a 2cm mass on the muscles of my diaphragm, but I then had an MRI which showed nothing. Since then my pain has become more persistent. It always starts about 2 days before my period and is centred around the area where my gallbladder was, but also radiates through to my back and down to the area where my appendix is. Normal things such as sneezing, laughing and coughing are agonising and this has resulted in me having panic attacks as I don't feel that my lungs can expand properly and I therefore struggle to breathe. The pain also affects my sleep and has affected my posture over time as I struggle to stand up straight when I'm in pain. I spend around 3 weeks of every month in discomfort and pain.

I have had 2 lots of surgery to remove endo on my uterus in the past 10 years, but have never really suffered with painful or particularly heavy periods.

I had kind of given up hope as nobody seemed to take me seriously and would look baffled when I described my symptoms. However I found a surgeon near Leeds who had dealt with endo outside of the uterus area, but my insurance company wouldn't pay for him. I have been referred to a gynaecologist near home who has been great. She didn't seem phased by the fact that I appeared to have endo in one of the more unusual areas. She sent me for an MRI which to my surprise showed the location and size of the endometriosis. She has referred me on to a liver/cancer specialist who I am waiting to see.

If you're in pain, don't be put off by he alt professionals telling you that you're ok.I am told that MRI scans don't always show it up. However I am also aware that this Doctor was very specific about where she wanted them to look when they did the scan, which seemed to change the way it was performed. Not sure if this had a bearing?

Hope this helps a bit.

Rachel x

[Twinkle30 in reply to Fraggle14]

Hi Rachel,

Thank you for your reply. I wonder if the gallbladder surgery is slightly related as it causes a weakness in the tissue and scar tissue which I guess the endo loves to stick to!

Currently I would rate my pain as quite low but theres a constant niggle. I have found with stress it gets worse and then radiates but still very bearable. Like you my periods aren't that heavy or painful really. If they are it is only for first couple of days and manageable. I do experience pins n needles and slight pressure down my whole right side to my toes during ovulation and then on my period, it's bizzare. My endo was diagnosed only on my right side in 2011 and that's only side I have had a cyst and get pain.

I stopped getting another referral from gp to consultant again due to advice from gp. She couldn't tell me completely but she also had lots of surgery and had similar pains and I suspect a fellow endometriosis sufferer and she said if at this point it was just discomfort and more of a niggle try to leave it a little. She said for her the more surgery she had the worse it seemed to be getting. I fear though that she was just seeing the same set of consultants as me and as we know they are not specialists in this field.

I am going to start a log on how it is each day and then consider my options. It certainly not as awfully painful as yours sounds and maybe it is just adhesions from my gallbladder surgery? Who knows!

Would love to hear how you get on with liver specialist.

Laura

X

[rachel239 in reply to Twinkle30]

Hey, I just came across this post. I was diagnosed with endo a few months ago......but it hasn't reall answered the boggling pain i get under my left rib cage. I was wonder, I you don't mind me asking, how did they find the endo on your diaphragm? X

[Fraggle14 in reply to rachel239]

Hi Rachel

Sorry, I have only just seen this post as it got lost amongst some of the older ones. I suspected I had it due to the pain and no medical expert being able to find anything. I had an MRI through the NHS and was told there was nothing wrong with me. I pushed and pushed through my private health insurers and was sent to see a very sympathetic female gynaecologist in Birmingham area who sent me for an MRI. Luckily this one showed the endo up and I was able to have the operation. It took many years of pain and baffled doctors before I was diagnosed properly. I hope you are able to find out what is causing you the pain. Rachel x

[stickyvicke]

Hi there. . I believe I also have endo on the diaphragm, do you suffer with pain in your right shoulder?

I have not yet had surgery as have been trying to tackle it with alternative approaches for the past 5 years. Another reason I have been super hesitant to go ahead with surgery is like you say, because a general gynaecologist would b unable to treat it affectively i feel. However in the past couple of months I have turned my attentions towards the possibility of goin down route of surgery as my condition is getting quite allot worse. I found a site for dr trehan... he sounds amazing, unfortunately is private but reading all the info on his site has given me a much clearer picture of what main stream and specialist surgery can offer and the huge disparities between the two... with this in mind I carried on research and found that there are a handful of specielist clinics of excellence for endometriosis on the nhs.. the one im looking at is at the royal Cornwall hospital in Truro. . Just google it for interest... They opperate with gynies and recto vaginal surgeons alongsidek each other . I am in the process of trying to get a referral to their clinic and then will be able to find out if they are experienced with diaphragm endo removal etc. . Basically they look like the best shot for the nhs. Also I would have some concerns being sent to a cancer specialist for the removal of endo

.. if you have a good read thru dr trehans website I think you will see how crucial he feels that treatment only from those with a long and in depth knowledge of endometriosis is... (not cancer) any way that was lengthy... hope it helps and would be interested to hear how you go and what you find out. Love vix

[Fraggle14 in reply to stickyvicke]

Thanks Viv, I'll have a look. I am lucky enough to be able to go private. Dr Trehan was my preferred surgeon and he does look amazing, but I couldn't afford to have surgery with him and my insurance company wouldn't cover his costs. I'm going to try the alternative routes first and then will have to think about revisiting him in the future if this doesn't work. I have never really suffered with shoulder pain, but I know this is a normal side affect of endo of the diaphragm. Hope you get yourself sorted soon too x

[Hidden in reply to Fraggle14]

I think Andrew Pickersgill in Manchester operates on diaphragmatic endo? He may well be the only other one in the UK? X

[Hidden in reply to Hidden]

Arghh sorry, just realised this is an old post!!! X

[Fraggle14 in reply to Hidden]

No problem, thank you for responding anyway xx

[Hidden in reply to Fraggle14]

I'm glad to read that you're doing well. X

[Jujuhawk in reply to Hidden]

David Rowlands at Arrow Park Wirral also operates on diaphragmatic endo. He doesn’t have to have a bladder or bowel surgeon either! He’s amazing x

[nicolajones63]

I also get pain in my shoulder blade and around the liver and gall bladder area but following excision work 2 weeks ago endo specialist told me that it was all clear in these areas so I haven't got a clue why im getting pain there. Ive had CTs, US scans and countless bloods but nobody ever seems to have the reason for my almost constant pain. I had the endo removed from bowel, both ureters and pouch of douglas so just hoping symptoms calm down as I heal more. If any of you get any more diagnosis for these areas I would love to hear about them as the pain is driving me crazy.

Good luck to you all x

[Fraggle14 in reply to nicolajones63]

I can't believe you're still getting pain after that. I remember how I felt after they took my gall bladder out…I expected to be pain free then couldn't believe it was back the next month. Maybe your body has got so used to the pain that it still thinks your hurting? Hope you feel better soon x

[Fraggle14]

Thanks all for your comments. It's comforting to know I'm not alone. I'm sorry to hear you are all suffering. I know that the chances of me being pain free for the rest of my life are pretty slim, but I'm hoping that I may get a few months of relief at least. I'm so sick of taking pain killers and shouting at my other half for making me laugh! It's not much fun. I honestly can't remember how it feels to not be in pain. I am a little worried that the endo might find new scar tissue to stick to, but I suppose I've got to give anything a go.

Please keep me updated on your progress and I'll let you know how it goes with the other specialist xx

[CP17]

I have endo on my diaphragm as well as my ovaries, ureters, intestines, etc. I've had abdominal surgery to separate my uterus and intestines and drain an endometrioma, but haven't had the endo removed from my diaphragm. My doctor thought it was best for me not to have surgery on my diaphragm for the time being, since I'm not having pain in that area and evidently the surgery would be more risky than the abdominal surgery was, since the diaphragm affects breathing.

I think it's good that your seeing a specialist in these organs for the excision; that's what my doctor recommended if I wanted to have this surgery.

Good luck to you!

[curl123]

Hi sorry I'm a bit late on this thread so you might not see this but what are your symptoms exactly?

I had some endo removed from my womb a few months ago when I was diagnosed but my pelvic pain has never been my worst pain.

My other pains (which didn't go away after my laparoscopy) are worst in the morning when my bladder is full and it's bad pain under my right rib cage and in my back by my kidney and it radiates upwards to my chest and back and shoulder and sometimes it spreads to the left side. Then during the day it rarely gets as bad as the morning but is stilla but painful and niggling.

Have been in a and e twice once with really bad pain under my right ribcage which they thought was gallstones (all the scans came up clear) and the second time with bad chest pain which they thought was a clot in my lungs (everything came up clear again).

Does this sound similar to you? What your symptoms? Xx

[Serwaa247 in reply to curl123]

Omg i have your symptoms. I have pain in my right ribs , shoulder, radiates to my back . Im on Zalodex injections but i still have pain constantly in my ribs . I aslo taje pain killers everday, Tramadol ect .

[Fraggle14]

Hi, similar to you with the gall bladder…probably why they ended up removing mine 10 years ago! I know 100% when my period is coming as I can feel the pain starting in the area where my gall bladder was. It sometimes radiates down to my appendix and also into my back and over the years has affected my posture. The pain gets really bad for a few days when I can feel it constantly and then tends to come and go for another 2 weeks or so. It keeps me awake most nights and is really bad when I laugh, sneeze or cough. The only way I can describe it is like being stabbed (although thankfully I've never been stabbed, but just assuming). I often have panic attacks now when I laugh as I feel like I can't get any air into my lungs due to the excruciating pain.

Have my appointment with the liver specialist next week though so fingers crossed he may be able to help. Even a few months pain free would be amazing. I can't remember what it's like not to be in pain and I'm so sick of taking pain killers, I'm surprised I'm not addicted!

I have read about others who have shoulder pain like you describe. Don't let the hospitals fob you off though. It's taken me 10 years to be diagnosed and it's nice to finally have a label to put to illness, especially for those who probably think I'm making it up.

Good luck xx

[curl123 in reply to Fraggle14]

Thank you for your reply! Good luck too xx

[Kris205]

Were you able to get the endo successfully removed from your diaphragm? I have it on my diaphragm as well but most surgeons I talk to say that it can't be operated on.

[Fraggle14 in reply to Kris205]

Hi, sorry for my late reply. Well I'm pleased to say that, yes I was able to have the endo successfully removed. I had my op at a private hospital in Birmingham. The surgeon is a liver specialist and although it was his first operation to remove endo, he was really positive about helping me. I had the endo removed at the end of June. The operation was bigger than first thought. I have 2 key hole scars and another about 2 inches long to enable him to remove the large patch of endo which had actually attached itself to my abdominal muscles. I am pleased to report that for the first time in 10 years I am now pain free!!! It has been strange. I couldn't get used to it at first. It finally hit me one day in the garden when I was laughing at my daughter. Actual proper belly laughs....something I haven't been able to do for a number of years without ending up in agony or having a panic attack. It's early days. I'm not naive enough to think that it won't come back. I worry that I'm feeling twinges of pain every time my period is approaching. Perhaps I am....perhaps it's in my head. Would I go through the operation again....definitely. Even if I only get a few months of pain relief, it feels incredible to feel normal again. Are you going private or through the NHS?

[Maryna]

Hi Fraggle14, it is so nice to read your story and how you've been able to laugh belly laughs again!

I found your story as I've just been diagnosed with endo on the liver too. A previous laparoscopy actually took care of most of my issues with pain, but I've had CT scan last week and what do you know, some endo on my liver (also ureter, ovary, bowel.. as we expected). Fortunately all endo lesions seem small and we're going to try Visanne first to see whether that shrivels up the endo.

All the best to you!

[Marzenka]

You probably have adhesions