Diaphragm symptoms?

[Cejn2000]

Hi,

Alongside the typical endo symptoms (lots and lots of stomach/uterus pains, back pain, fatigue, Ibs-like problems etc) I’ve recently started noticing that when my period comes I tend to get shortness of breath, chest pains, upper abdomen/diagram/under the ribs pain and hiccups (either random one off or a big episode of them - get this everyday and have done for at least a year or so but never questioned it)

Not sure if I’m just overthinking things but am starting to notice a pattern which seems to get worse when I start my period, have never spoken to my doctor or gynae about this however do you think it’s a good idea to bring this up as possible symptoms? Or to mention it before my scheduled laparoscopy?

if It most likely is unrelated and not even an issue at all but all the problems with endo have me paranoid

Any advice would be much appreciated x

[Moon_maiden]

I’ve been getting a pressure/discomfort/bloating rather than sharp pain going from pelvis up through abdomen to diaphragm after activity or eating. Tried to explain to doctor but they didn’t comment. I don’t know if it’s related or not.

[Cattaki]

I had surgery to remove diaphragmatic endo in 2012. A major symptom for me was referred right shoulder pain. This then developed over years to include upper right quadrant pain under my ribs during periods and it also made me vomit. A lot.

You should definitely mention it to your gynae if you have a lap scheduled because I had to have a lap on 2011 to treat my pelvic issues and this was when my diaphragmatic endo was diagnosed. It then took another year to schedule my next surgery and to identify specialists who could support the gene team with excision.

It wasn't easy for the team on 2011 to find the lesions for diagnosis because they were behind my liver. My diaphragmatic surgery required the assistance of a gastrointestinal specialist and took 8 hours. It was a tough surgery to recover from because my lung collapsed as a result of it too (although I'm now sooooo much better).

There isn't a huge amount of expertise in the UK regarding diaphragmatic endo. I found a gynaecologist in Northants who had done diaphragmatic endo surgery and my surgeon and gynae was Mr Richard Penketh in Cardiff.

Do get in touch if I can offer any more help.

[endopositive in reply to Cattaki]

They think I have it but the operation seems tricky and not worth the risk, my right shoulder is so painful sometimes and I vomit weekly! I have one question is the op worth it? Xx

[Cattaki in reply to endopositive]

For me, it changed my life. BUT it was a tough surgery and I was very poorly for a time afterwards. However, thankfully, I have managed to keep my endo at bay with hormonal management since. I'm glad I had the surgery. I would do it again if I had to but it did carry risks.

Also, I think it's important that you have an honest conversation with your gynaecologist if fertility is an issue. I've accepted that to maintain the benefits of surgery I've sacrificed fertility. I don't want to have the surgery again so I have to suppress my cycle HARD! That isn't going to be for everyone.

[Xxxxx11111 in reply to Cattaki]

Can I ask you about your symptoms? I had surgery approx 20yrs and they found severe endometriosis on my bowel and ovaries. In the past few years symptoms have started again but now I am getting the same feeling as if something is pressing from the inside but on my back. In the past this feeling was near my right kidney and right ribs. I still get it there but it now also feels like its along my spine often between my shoulder blades but can be near my waist band. Diaphragmic endometriosis has crossed my mind as I often get a cough, have been a little breathless and sometimes if I blow my nose there is a little fresh blood. Also my right arm sometimes aches.

Can you let me know if these are similar to any symptoms you had. I have had these for a few years but they are becoming stronger and more often.

Thanks

[Cattaki in reply to Xxxxx11111]

My symptoms were constant right side shoulder pain (which got worse over time) and upper right quadrant pain (under ribs on right) during my period. I vomited about every 2 hours during my period and the days immediately before and after. I also suffered from nausea and reduced appetite all the time. I lost 2 stone without trying.

I didn't particularly suffer from breathlessness or back pain. However, I understand from my gynaecologist that symptoms can vary depending on where the endo lesions are. You should definitely talk to your doctor about this.

For me, the bulk of my lesions were on my right side by my liver and I had a 10 pence size section of my diaphragm removed. However I did have other minor lesions elsewhere on my diaphragm which were removed differently.

[Cejn2000 in reply to Xxxxx11111]

Hope you are okay! Yeah I keep getting kind of similar feelings, I tend to get pain underneath the bottom of my ribs and am getting pains around my right shoulder blade when I take deeper breaths, I’m not sure if this is similar to you?

I also get breathless when I’m not really doing anything, can be tiring just standing for 2 mins while brushing my teeth. Although I haven’t experienced any nose bleeds.

I hope you get help for it and feel better soon x

[Cejn2000 in reply to Cattaki]

Hope you are doing well now, sounds like it was really tough so I’m sorry about that. I have started getting pain around my right shoulder blade when I take deeper breaths, I’m not sure if that has anything to do with it. Thank you so much for your help, will definitely mention it when i next see my gynae

[Cattaki in reply to Cejn2000]

I'm much better now. I live a reasonably comfortable and normal life now (whatever that is these days)?! 🤣 My advice would be to stick to your guns and advocate for yourself and one of the best things I did was keeping a symptoms diary. This really helped my medical team. Diaphragmatic endo isn't v common but I think we know our bodies so it's worth mentioning it and getting it investigated.

[Cejn2000 in reply to Cattaki]

Ahah comfortable as you can be in these times at least 🤣 thank you for you help, have been keeping a symptom diary for a while now but will make sure to keep logging these new symptoms x

[nursevspatient]

It is very important that you mention these things. Anything that causes a shortness of breath should be investigated. You won't know for sure until the op but it should be mentioned to the gynae team.

If all they say is that it's not endo, you haven't lost anything or wasted any time.

You need to advocate for yourself and try to get questions answered.

Good luck! X

[Cejn2000 in reply to nursevspatient]

Thank you, will definitely mention it next time I see my gynae and will keep track of it until then. Thank you! X

[Zeezi]

When I first got diagnosed with endometriosis, my complaint was shortness of breath as well as the terrible pelvis pain. The shortness of breath continued even after my periods. My fiancee was worried and took me to the hospital. The doctors found out that I had fluid in the chest. It was drained and a bit was tested and it all pointed to endometriosis. It was so scary and a bad period for me. Everytime I have my period, I always ended in the hospital for a drainage.

It might be different from what you are going through but I'll advice you speak to your gynae about it.

[Cejn2000 in reply to Zeezi]

I have started getting shortness of breath especially during my last few periods and occasionally at random times, which seems to be getting more noticeable each month. Hope everything is okay x

[Nzendogirl]

I would definitely mention it to your gynae team. I had a hysterectomy 4 months ago (am in my 30s) for stage 4 endo after having had 6 laps in the previous years. I had all the usual endo symptoms that you mention (my worst was pain everyday despite rounds of zoladex and chemical menopause). One thing I noticed in the lead up to my surgery was that I was getting very out of breath even just walking up a flight of stairs. I am a healthy weight and reasonable fitness level and this got really bad in the months before my op. They ended up finding some endo on my diaphragm. I never even thought about mentioning it to my team before the op but your symptoms reminded me so much of my own.

[Cejn2000 in reply to Nzendogirl]

Thank you for the advice, will bring it up to my gynae when I next see them. From what I have noticed the shortness of breath and chest pains are becoming more noticeable each month, becoming breathless just having to stand for a while. I’m also normal weight and healthy so have no reason for this.

Hope you are doing well and are feeling much better, thank you! X

[Pnut333]

Hi. You are not alone. I thinks it’s very important to listen to your body vs worry if you are over thinking or allowing Docs to make you feel that way! My Thoracic Endo (TE) symptoms started 7 years ago and I still have not been able to get them resolved. Main reason is that the doctors will tell you that they can see your diaphragm in the liver in a normal laparoscopy, but it is not entirely true. They can only see the very edge of your liver and a portion of your diaphragm.

So if you have it somewhere that is not visible in a normal laparoscopy it can continue to get missed, like it has for me I would not ignore the symptoms you’re having, I suggest to keep an eye on them for sure. Do you ever get shoulder pain? One very common symptom of diaphragmatic Endo is shoulder pain. Although I can tell you that I only recently got shoulder pain within the last year. If you do have diaphragmatic Endo you may need to see a thoracic surgeon. So I would again just keep an eye on it and definitely let your doctors know about it but also remember that they may not be able to help. Most importantly, do you have an Endo Excision Specialist? A normal Gyne will not be qualified to excise your Endo and give you the best care. If not, I suggest joining Nancys Nook Education Facebook group. You can find an Excision Specialist in your area there. Also, I highly recommend joining a Facebook group called ExtraPelvic NotRare Endo Education and Support group. This group has thousands of women with the diaphragmatic and thoracic endometriosis. There is also a lot of information on this page as well. Good luck Sister, let me know if you have any questions

[Cejn2000 in reply to Pnut333]

Thank you so much for the reply! Hope you are doing well. I know the chance of having it on my diaphragm is very small but something doesn’t feel right, even more so than the usual endo pains. Have only recently starting getting pain around my right shoulder blade when I take deeper breaths. I was scheduled to have a lap last month but that was cancelled with everything that’s happening so will mention the new symptoms to my gynae whenever it is possible to before the surgery. I think she is interested in endo but no a specialist herself. Although the hospital is an endo centre, she told me she would be doing the surgery unless it shows severe endo which doesn’t fill me with much hope but is better than a general gynae I guess. Have joined Nancys nook but will definitely have a look at the other group as well.

Thank you! X

[Pnut333 in reply to Cejn2000]

Ok, it definitely sounds concerning to me between the breathing and shoulder pain. Next period, I suggest really trying to document any breathing and shoulder pain. Just so you know, it’s not rare at all. It’s just that there are not enough cases that actually get reported. Diaphragmatic Endo is actually pretty common, unfortunately.

Highly recommend finding another doc. You need a Specialist. Especially if you have TE. You need someone who can get all of it in one shot! Please, take it from me. 22 yrs with Endo. I rushed into so many surgeries bc I was desperate.. and I knew I needed excision surgery but didn’t take the time to find a specialist. Ablation surgery will not do much and every surgery you have puts you at risk for more scar tissue and more issues. I have had 6 surgeries and just recently found a Nook approved Specialist. She is a god send, for sure! But I waited so long and had so many failed surgeries that I can no longer bed over or walk more than a few feet w/o my whole side and under my rib cage flaring up. I even have to get an electric cart at the grocery store. I just know if I found a Nook Specialist years ago I would not be in the turmoil I am today. I hope that my story can help you to be inspired to find the very best care!

[Cejn2000]

I didn’t know that actually, just assumed it was a rare form of it, quite worrying to think about really.

I can’t seem to find any endo specialist in my area that isn’t private or doesn’t take NHS patients on as there’s no way id be able to afford a specialist without it so the hospital I got referred to seemed to be the best I could get but will definitely do some more research on it again.

Thank you again for all the help! X