My Endometriosis Journey | Diaphragmatic Endometriosis

[@Calcifurr]

Thank you for sharing your story! It is true, doctors teach us and sometimes we teach them. We know our bodies more than anybody else when it comes to what’s normal for us versus not normal. I’m glad you fought and advocated for yourself.

[@lynette562]

Thank you for this! I dont have enough space to write what i have been through with endometriosis and other multiple diagnoses. I cannot tell you how many times drs (male and female) are dismissive, and condescending. Its shameful. Makes painful and potentially life altering, life threatening medical issues even worse! Thank you for sharing your story!

[@rscompany8404]

The support community is constantly growing! I have found so many of us who share their experiences and support one another!

[@Julia-hf6jc]

Thank you SO much for sharing this! I have been searching for a diagnosis for 5 years for hand pain. Finally, at my last GYN appointment I brought up my hand pain (just in conversation, not thinking it was relevant AT ALL) and she suggested it might be extra pelvic endometriosis. I have a MRI scheduled with my hand surgeon, but I am definitely self advocating trying so hard for a biopsy. The hand surgeon tried to shrug me off but I continued to bring it up until he is just barely starting to listen. I had to push so hard for this MRI and I am praying so so hard that something shows up to indicate the need for a biopsy. Thank you so much for bringing attention to your story!

[@rscompany8404]

I wish you the best of luck and medical care!

[@jmgb2954]

It's very nice to have found this video! I have been getting a lot of upper right abdominal pain under my breast that goes to my side and back; and my doctor told me that it most likely is Diaphragm endometriosis (I have been already been diagnosed with Endometriosis). I have been looking into it since the pain has been constant (especially since I did 28 days of Orilissa and it got ten times worse with the medication). This is a very informative video 👍

[@buffybowman1192]

You were telling my story! Only after my lung collapsed it was the hospital thoracic surgeon who suggested I might have this. I’ve had 3 very painful months since my lung collapse, but whenever I go in they say my lung is fine. It’s so frustrating. Now after hearing your story I know what to do so thank you.

[@rscompany8404]

After the first lung collapse, I felt like I was having one those two months before my second collapse. I went in and they would say I was fine too. Turns out my period was causing everything! I hope you find answers soon!

[@candyhearts013]

Great job advocating for yourself!!! I'm so sorry you had to go through all of this just to be heard!

[@rscompany8404]

It was an important lesson I learned; an informed patient is their own best advocate!

[@itsagoodday2165]

I am glad you are ok. There is a resource on Fb and online, Nancy Nook Endometriosis. I know you are taking the pill but that is not the answer. I just wanted to give you more resources to see how you can feel better for long term!!!

[@KaffeinatedENT]

I've been trying to figure out why I have chest pain before and during my period for the last year! Mine is middle chest. I though I was alone. My doctor just gave me birth control 🙄 ...Thanks for sharing!

[@ragabella7593]

Happy endometriosis month. I've got bowel and bladder endo and was lucky (or not because I am unable to have children) that I was diagnosed by my gynaecologist who admitted me to a specialist clinic. However, for all the other ladies out there who are in pain, don't let loose. Keep pushing and get on doctor's nerves until you get an answer. I've been living with endo for nearly 8 years and have tried lots to make living with the disease easier. Change of diet and a year ago I started doing yoga. Yoga benefits your breathing, which may help with controlling your lung. It's worth a try. Anyway, stay strong and positive endo sisters.

[@rscompany8404]

You are a warrior! If you don't mind my asking, what kind of adjustments have you made to your diet? I'm always interested in what has worked for others!

[@ragabella7593]

@@rscompany8404 Thanks. We are all warriors suffering from this disease. Of course I don't mind sharing. Believe it's important to share information. Well, apart from the 5 surgeries and about 1 year into my diagnosis I decided to eliminate meat, dairy and sugar. At the time I didn't realise gluten was a problem, which after several months also stopped eating. My diet was therefore quite restricted. Although it was very difficult and required a lot of discipline I went through with it for a whole year. Thanks to my husband who supported me, even eating most of foods I did. My symptoms got better. I then decided to stop taking the pill and continued watching my diet, however, not a strict as before. Started adding a little bit of sugar (honey) and only eating chicken once in a while. Unfortunately I had to go back to taking the pill again after a couple of years (gyn said stage 4 endo is to severe and risk of having to get surgery again). Still eating the same diet. Even eating gluten once in a while. Conclusion: I simply tried to eliminate and then see what my body can handle. Also important to get your blood checked to make sure you aren't laking anything. Exercise I believe is also very important. Did boxing for 2 years, which I then realised stressed my body and inflamed my stomach (bloating), chronic fatigue. That's when I gave my body a break for 6 weeks and started yoga. Love it because there are different types which I can do depending on how I feel. Energetic, relaxing or a mix. Breathing in yoga helps control anxiety and simply relaxes. My words for you - do what's good for your body, listen to your body, don't let your situation discourage you even if you have days whn you're feeling down. Stay positive and enjoy life. But also allow yourself to feel sad and let go of your emotions. Stay strong and healthy. 💪❤️

[@Dancingdays223]

Thank you for sharing. We need to speak up. I have this too. It is NOT as rare as they think, it is just majorly under diagnosed.

[@Rainbowreesii]

Took 14 years to finally get diagnosed with DE on my right side as well…my surgery is on Jan. 4 and I’m terrified but also dealing with ptsd and trauma from the years of pain and dismissive doctors. I am so glad I found this because I’m scared my lung is close to collapsing as well and I can feel it when I breathe..I’m exhausted and in so much pain I can barely function these days…I hope this surgery brings healing 😭

[@rscompany8404]

I wish you quick healing and relief!

[@yelitzarivera5767]

Hope your surgery went well. Did you have pain in your stomach as well? Like bloated? Any pain when bending over? Thanks

[@lifeinitaly9983]

Great video, please dig deeper to find out root of the issue . I went today to see a specialist doctor he made links to my endo and blood test results ,lack of iron and a defect in my DNA . I was very thankful to come across this doctor , lecturer. I've been suffering for years .

[@rscompany8404]

I will make sure to look into that, thank you!

[@veronicavillaescusa555]

thank you so much for sharing your story! I'm currently dealing with this pain.

[@jimaieshelton4966]

I am so glad you posted this video- I was diagnosed with Diaphragmatic Endometriosis last week when I went into the ER with incredibly excruciating pain and after they ran tests they discovered that I had 1.3 liters of blood in my chest cavity. During exploratory surgery they discovered that I had 2 lesions on my diaphragm & one was actively bleeding. It’s crazy how rare this is, no one at the hospital I was at had seen it either but thankfully my surgeon was aware it existed

[@rscompany8404]

Wow! I’m so glad you overcame that and you had a surgeon who was aware of the condition! I hope you are doing better now and that the pain has decreased. Thank you for sharing your experience; it’s crazy the different ways this condition can affect us. The more we share our stories, the more awareness we bring.

[@caitlinfeilder5622]

So glad I found this, I am currently seeing a gynaecologist and we are exploring this. Hopefully will have an answer soon

[@imrisquepinay]

Hi! I have an appointment with mine too: what were your symptoms?

[@71suezqz]

My pulmonologist just told me today I might have this. I'm going to a thoracic surgeon to schedule surgery. Been dealing with it since November and it just dawned me that the pain in my ribs and chest coinicides with my cycle. Luckily he knew about it... because I never knew it existed!

[@rscompany8404]

I’m so glad to hear your doctor was familiar with the condition! I hope everything turns out well for you. I hadn’t really considered it either, just thought it was bad luck!

[@wassanamin1047]

Can you please describe the type of rib pain you had ?i hope you’re feeling better now 🌸

[@missophelie3781]

Did they make you have a stress test (doing some exercises to test your lungs)?

[@rochellefoxx4938]

I probably haven't had a lung collapse, but I do get a weird chest and shoulder pain on the right side every single period. Along with pelvic endometriosis symptoms. I'm fighting to get my doctors to believe me and have the laparoscopy surgery to get diagnosed. I do have known mental health issues so doctors dont like listen to us also I'm African American so it's not going well to convince them. I know I'm in my right mind and I know I'm right about the endometriosis.

[@rscompany8404]

If one doctor doesn't listen, keep advocating for yourself until you find one that does. Women of minority groups, particularly African American women, often have less quality care. It is something our society NEEDS to work on. I hope you find answers and clarity soon!

[@rochellefoxx4938]

@@rscompany8404 Thank for this video I needed it my mom has more of a voice than me so maybe she can come to my next dr. Appointment

[@Hue_10]

Please go to another doc. Preferable an African American or WOC female who can relate.

[@poeticjustice144]

@@rscompany8404 so update its been a year. I have endometriosis. Last year they found out I had a endometrial nodule in my bellybutton. It caused an unbearable burning pain everyday for 2 years that got worse during my cycle it's called umbilical endometriosis. Not only that they found it in my pelvis, bladder, ureters, and kidneys which is dangerous. During the surgery they found a nodule on my lung, but didn't remove it last year. They didn't believe it was endometriosis. This year I fought for the diaphragmatic endometriosis diagnosis and next Monday they are finally doing a diagnostic surgery for it. Yes it took them a whole year to get this issue under control meanwhile in unbearable pain (also it is determined that I was having lung collapses).

[@rscompany8404]

@@poeticjustice144 Glad you advocated for yourself and found a medical team that will perform the diagnostic surgery! I hope you heal quickly and that your pain becomes manageable!

[@tamaras5938]

Thank you so much for making this video! I have suspected diaphragmatic endometriosis (I've had endo for many years and several laparoscopic surgeries). I'm having my next surgery soon. There isn't a lot of information out there about diaphragmatic/thoracic endometriosis. How are you doing now? I wish you good health, love and happiness!

[@rscompany8404]

Hello Tamara! I hope your next surgery goes well and that it alleviates any pain/discomfort you’re feeling! There definitely isn’t enough information out but I’m hopeful that more studies will be done in the future. I’m going to post an update video soon but I’m doing well, thank you for asking! I wish you all the same!!

[@missophelie3781]

Did you change your diet?

[@missophelie3781]

Does anyone here have issues while flying by plane and feeling sick for around two weeks after taking the plane due to endometriosis? Having not enough oxygen in the lungs (can't sing) nor being able to tolerate any smells without having to cough (during those two weeks)? Having some pain under the ribs while walking (on top of having pain in your pelvic area and abdomen)?

[@ki5423]

thank you for sharing ive been dealing with this for years and its progressiveley gotten worse since i turned 24. inbearable shoulder and diaphram pain, hard to breathe every cycle. will be looking into surgery soon

[@thickgoddess1835]

Wow. I came here after researching why I keep getting right chest shoulder pain also radiates in upper back and right arm. It goes down under right breast also. It always flares up before I get my period. Going to the dr today.

[@mellifera8771]

It s Not that rare!!! Doctors should be aware about this and also women! I know to much women concerned with diaphragmatic endometriosis! It is Not that rare it is rather a Nightmare

[@YonUndone3064]

It seems to be rare in my country cuz they seem to know very little and it's just...I'm just sighs I don't know anymore.

[@Lady.Fern.]

@@YonUndone3064 they know very little, but I don’t believe its rare. I think it is more lack of research and studies in women’s health.

[@YonUndone3064]

@@Lady.Fern. They really need to do better as doctors and research widely. How do they expect to help if they don't know sufficient. I know they are humans and won't know absolutely everything, but they should at least research things. Sometimes they are very dismissive here and act like ppl are not feeling the symptoms that they say they are feeling. Talking from experience. Smh

[@crazycats6354]

Is it possible to have it on the left side? I went to so many doctors and none of them told me regarding that. Instead, they gave me anti depressant and benzodiazepine. I experience that symptoms before menstruation, every month...for almost a year now😢

[@rscompany8404]

I would say to find a pulmonologist or a gynecologist who specializes in endometriosis! They can run the tests and monitor the symptoms. I recently started having pain in both sides so it’s a possibility. I hope you find a doctor that takes all your symptoms into true consideration!

[@applegrapes2009]

Thank you ...same thing happens to me...my doctor says to get pregnant

[@rscompany8404]

I have heard the same thing....... Needless to say, I don't see that doctor anymore. Wishing you well!

[@bddybdz]

Hi Millica, how are you now? Can you explain why your doctor said that? Has he explained it?

[@tanyawilliams4899]

Mine told me the same thing too SMH like get pregnant to only have the issue 9 months later I am pushing for endometrial ablation. Currently went through pneumothorax as they are planning for thora and pleurodesis

[@skelton1623]

I hate "in my 20+ years I've never seen" how do rare disorders get diagnosed then?

[@ailencitaa3836]

Hi I been diagnosed with endometriosis and I have tissues in different places, question if anyone could answer for all the brave women fighting endo. Is it normal to feel pain like where my ribs are at sometimes? Thank you and god bless you all.

[@rscompany8404]

Hello! It really varies person by person. I have pain directly under my ribcage and where my ribs are but that's not the case for everyone. I wish you all the best!

[@crazycats6354]

Does the chest pain feels like your having a heart attack?

[@rscompany8404]

I can't really say... I definitely had a tightness in my chest when my lung collapsed both times. The first time I was in the hospital with a lung collapse, they checked my heart and it wasn't in normal rhythm so they took precautions like making me chew aspirin and taking other medications. As for the chest pain associated with the endometriosis itself, it's a tightness that makes me short of breath!

[@RachelLoveMartinez]

​​@@rscompany8404 Did you also get episodes where you would randomly gasp for air? My body does this quite often.

[@kat249pollock]

You’re such a badass!!!!

[@get2danews925]

with me its my left side

[@charlottedavies5365]

Me too

[@rscompany8404]

I hope you find some relief soon!

[@Lady.Fern.]

Mine has been right side since I was 13 but around 25 it started affecting both side so then I’ve been thinking it can’t be endo then right. Hmm interesting to see others mention left side, I have my lap in July, I’m horrified they’ll tell me “sometimes we just don’t know again” I had an endometrial biopsy that pretty much traumatized me from the pain which ended with those words and I can not go through it again.

[@Smokeygundsdetail]

Can you please tell me the doctor you went to that helped you I’m having trouble with getting help my situation is getting worse and I’m being thrown between doctors

[@amysubash9396]

The kamiah Show dr. Andrea Vidali is good. Pls research on him

[@rscompany8404]

Much to my disappoint, I had to switch my gyno. I haven't been with my current one long enough to formulate an opinion.

[@gwmayela]

🤬🤬🤬 doctors piss me off when they dont LISTEN!

[@Hue_10]

I hate doctors like that, esp men who absolutely don’t have any idea or clue what a cycle feels like! I had a doc tell me the same that it’s my cycle and come to find out that I have endometriosis and fibroids!! They also found endo on my bladder.

[@rscompany8404]

I'm glad you were able to find some answers! Hopefully with time, these conditions will get more attention!

[@tenawilliams4452]

I just can't trust the doctors anymore its been 8 years now, 3 surgeries, and then the diagnosis of diaphragmatic endo, then endo in my liver. All they can tell me is to have another 10-hour surgery to dig out the scar tissue. If the liver regenerates itself then why not just treat the liver so it can function properly instead of creating more scarring with surgery. No thanks, I'm tired of having surgeries every three years or so. Found out that the liver metabolizes Estrogen, which is the main cause of endo, excessive estrogen. A healthy liver will filter even high levels of estrogen. Right shoulder and ovary/body pain are associated with the liver, funny that most women with severe endo have this right shoulder pain. If my liver is damaged it may not have come from the endo, the endo could have very well come from the liver not functioning properly in the first place. All this shit is connected to the liver, in my opinion, because pesticides are estrogen, birth control is estrogen, and sugar also fuels estrogen, not to mention all the fluctuating levels of natural estrogen in the body. So if you already have a dominance of estrogen which is causing endo, then they give you more of it in your birth control, how does that help. I'm no physician but in my opinion, it's the liver that causes this condition. You do not have to be an alcoholic to get liver disease, high fructose sugar has the exact same effect on the liver, so now-a-days most people have substantial liver damage without even knowing it.

[@missophelie3781]

Did you change your diet? Did you try bentonite clay? Did you choose the excision type of surgery?

[@fiveftzombie]

I get chest pain, when I have my period .🙁. I thought it was a reaction to stress due to the pain I'm in. I'm not sure what to do.

[@rscompany8404]

The best advice I could give is to seek medical advice from a professional! If you have a gynecologist, I would describe your symptoms and see what they say. Always listen to your body and if you have additional concerns, you can always get a second opinion from a different doctor. Wishing you the best!

[@fiveftzombie]

@@rscompany8404 thankyou. I definitely will, This is probably tge 3rd month its happened now. Although at first I thought it was due to another inflammatory condition I have which sometimes causes me to have chest pain, it flares up when I'm stressed, which during an Endo flare or my period, I do feel more anxious from all the pain. It feels good to talk about our endo problems with ppl who understand. I hope you are doing well xx. Hugs from an Aussie endo warrior.

[@SteadySteppin]

That hospital sucked