Diaphragmatic Endometriosis?

[bobdylanfan]

I have been experiencing shoulder pain since January. I went to the doctor and he said I must have pulled a muscle. Around the same time, I stopped taking oral contraceptives. Then last month I had pain in my bladder and burning when I used the bathroom. My doctor said I had a UTI and he gave me antibiotics without giving me a urine culture. 2 weeks after being on antibiotics, I still had pain in my pelvic region. Then I started getting a pain under my right rib that came and went. My doctor said it was likely a muscle spasm.

I now have pelvic pain when on my period and it lessens when my period ends. I have had spotting as well and not a "normal" period for 2 months. I started wondering if I could have endometriosis, and then I saw information about a form of endo that is called diaphragmatic endometriosis and the symptoms are pain in should and pain under rib, along with pelvic pain--all during the menstrual cycle. Does anyone know about this? I had a vaginal ultrasound that saw 2 functional cysts on my left ovary and a supposed ruptured cyst near my right ovary (he could not find my right ovary). My gyne did not schedule a follow up to get to the bottom of my pain.

Now I am seeing another gyne (a female one) and she is going to do a follow up ultrasound to check on the cysts. I want to hurry up and find out the source of my pain. I'm not sure if the shoulder and below rib pain are associated with my other issues, but I am starting to wonder. I want to schedule a laparoscopy asap, but they won't let me until the gyne meets with me first and makes a decision. I am wanting to fix this before it affects my fertility or my health.

If anyone can offer any insight, I'd appreciate it. This diaphragmatic endo seems rare, and I hope this isn't the cause of my pain.

[katiejayne19]

I have had endometriosis of my diaphragm for many years (6 yrs undiagnosed) which has now spread to my lung and liver. I had/have severe right shoulder pain. If you think you have it please persist, I had to fight hard and see many doctors to get mine diagnosed. There is not enough information in Australia so we often get looked over as it is so rare. They can do MRIs to diagnose it on your diaphragm if it is pronounced enough and exploratory surgery. I had to be referred to an Upper GI surgeron for my most recent surgery on my diaphragm because of the location of the endo. Depending on where you live I know some great surgeons and specialists (I'm in Victoria). I'm now in IVF as mine spreads so viciously, I've maxed out my surgeries on that area of my body and I've exceeded my time on Zoladex and Lucrin. My only option to halt it for 9 months is pregnancy. Good luck ladies, it's a horrible disease and you are all incredibly tough to be dealing with it day to day.

[ellelon]

I've been having all these symptoms as well, although mostly on my left side, and usually most have the trouble on the right side. I'm going to talk to my doctors and ask them to at least look in the area so I can know if that's the problem or will be bale to rule it out. I'm having surgery on the 11th to remove my right ovary, the only thing I have left after a hysterectomy. But that ovary is being very bad! Multiple complex cysts that won't go away, not to mention all the usual horrible endo symptoms. I feel like I'm 19 months pregnant sometimes :P Pain, bloating, now the weird stuff in my chest and under my are in my rib cage and hurts really bad when i try to sleep. My latest thing is my leg has gone numb from the ankle to the knee. Whoo Hoo Endometriosis! Bleh, well I'll let you know if I find out anything, I have a feeling that I'm gonna have to beg for them to even take a quick look at it while they're in there. If something is even somewhat rare, it's like they just won't even consider it at all, even if you have all the symptoms.

[kblacky]

Hi, I was diagnosed with diaphragmatic endometriosis nearly a year ago, I had shoulder pain and pain under my ribs which started about 8 years ago and over the years saw lots of different doctors physios chiropractors etc trying to get some help, it was always when I was on my period but everyone just used to say it was my hormones and that I was sensitive to pain  and one day it was so bad i was looking on the internet and heard about endometriosis and all the symptons sounded like what I was feeling, I called the endometriosis charity and spoke to a really nice lady who referred me to a gyne in my area, I got  a referral from my doctor eventually went to see him and he said it sounded like I had diaphragmatic endometriosis. I  came off the contraceptive pills I was on and had 6 monthly injections to stop my periods alltogether - it was so amazing to be pain free I felt like a different person! unfortunately you cant have these injections forever as they aren't good for you long term, he suggested having the marina coil inserted which I did a few months ago, although the pain has not completely gone it is no where near as bad as it was, in pain for about 2-3 days as oppossed to 7-8 per month and is a lot milder, I hope you managed to find someone to help you, I live in the south of england and saw a really good gyne who has a lot of experience in endometriosis, hope you get sorted, dont stay in pain there is help out there Kate

[Kajp]

Hi Becky, I am in the UK (Leicester). I have been suffering with pain in the tip of my shoulder for the last 8 months, its seems to be getting worse as time goes on.  The docs want to put me on hormome tablets but I don't want to take any tablets as i think tablets only mask the problem. They don't want to do any surgery at this stage. I also would like to have children in the next year or two (I am 31 years old) but have read that taking the hormone tablets can affect fertility even more.  I have done a great deal of research on the net about nutrition and have discovered that cutting out wheatgluten/dairy/soya helps.  I have tried this & have noticed a difference.  I have also researched on reflexology, it helps to get rid of bad toxins & is said to be beneficial for those with endo, i am still in pain but these alternatives seem to help - there is so much on the net about endo & diet, have you looked into this?
Hope this helps you x

[boobeccyboo]

I have the shoulder tip pain and have had for the last 5 years, no one wants to help though :-( I am 28, so am "too young" for anything that may apparently affect my fertility. I have been on Prostap and Zoladex for years but this no longer help and the side effects are horrendus (I know show signs of arthritis caused by these drugs) I am at the end of my tether!
I am due to have my third lap in September but it seems pointless because they never explore my diaphragm or behind my liver, which, from reading on the internet, seems to be where the problem is hiding!
Are you guys in the UK, everyone else with the condition seems to be in the States or Canada so it is hard to compare treatments.
I just cannot carry on in this state much longer, I need some ideas!!!
Hope all went well with your surgery.
Beccy
xx

[cath66]

hi there
i am so relieved i read your post, i have been suffering with irregular and very painful periods for approx 7months now i have multiple cysts in left breasts, abnormal smears and i am due to have a hysterscopy and a DnC on 28th june 10.
during this horrible time i have suffered with excruciating .pain in left shoulder and arm which i experience cold and clammy areas before i bleed the pain is so bad and my left breast swells twice the size of my right i am at present of work with this i have been told in the past this pain was unrelated to my periods but i know my body and know the timing of my bleed due to this pain,i suspect i have endo and the emergency dr i sawa few days ago prescribed tramadol and he said he believes i have bleeding in the abdomen that as irratated a nerve began with son .... cant remember the name that lies under the diaphragm which now makes more sense to me during an xray i was told there was fluid on my lung too and had a cortisone jab this is all in past 7mths too much of a coincidence dont you think i will keep you updated x