I'm new here... Am I crazy, or is it diaphragmatic endometriosis? How do I get my doctors to help me?

[hayesk290]

Hi everyone,

I am 25 years old and do want to have kids at some point in the next few years. I have been trying to solve my health mystery for over three years now. I have been seen by so many different doctors and had so many different tests, all coming back negative (ultrasounds, x-rays, etc.).

A day or two before my period my right shoulder starts to hurt. This pain could be described as throbbing, muscular feeling, sore, tightness, achy and sometimes worse when taking a deep breath. It continues throughout my period. The only thing that helps is advil. It seems to dull the pain enough so I can go about my day. I have to take it every four hours or the pain creeps back, and it adds up to a lot of advil and is obviously not a good thing. I do not really get any other symptoms. My cramps during my period are nothing extreme. And bleeding is normal levels, nothing too heavy or anything. Lasts about three to five days. After my period, the shoulder pain continues for a few more days to a week, then for about two weeks I am completely pain free.

I really think it is diaphragmatic endometriosis. Every website and search comes to the same answer. The last obgyn I went to basically laughed at me when I suggested that was what I was suffering from. My primary doctor is trying to help me, but just doesn't know what it is I guess. Physical therapy was a joke, they didn't know what to do with me since one week I would be in pain and the next nothing. I am scheduled for an external ultrasound today, and my period started today, shoulder pain started yesterday. The ultrasound will probably be all clear is my guess like every other test.

I have tried birth control, and it didn't really fully help as I got my period since I took the week of placebo pills still. I really don't like the side affects of birth control and don't want to mess with my cycle as I do want to have kids in the next few years.

All I want is to know what is going on with my body. I just don't know what else to do. I am at the point where I just want to give up. Obviously I know I can't keep taking advil like I am currently, but I just don't know what else to do. I don't want to just take something to treat symptoms, I want to know what is causing the symptoms.

I am also afraid that it will get worse. I don't know much about diaphragmatic endometriosis as far as how it progresses.

Has anyone had similar symptoms or issues? How do I get my doctors to help me? What tests should I ask for? What should they be looking for specifically? Any advice?

[24endo]

I really wish I could advise u but all I can really offer is support the biggest problem with endometriosis in my opinion is that until it's clearly structurally damaging or the suspected cause of infertility it's difficult to get the gold top treatment which would be a diagnostic laparoscopy and usually excision of the endometriosis often followed by either contraception of some description or being told get pregnant as soon as I have endometriosis and I have also had some of the symptoms u describe the shoulder pain cyclically and have also experienced a dr practically laughing at the thought of endometriosis on my diaphragm but that same dr also told me without clearly meeting certain criteria ie structure, fertility or lots of A n E admittance i won't get properly diagnosed and I would only be medically treated at the bsge Center as my ultra sound scans show nothing obvious. pretty much I skip the lap whether I'm happy about that or not although already confirmed by a non specialist 3 yrs ago to have endometriosis they simply treat the symptoms with contraceptives and pain relief for now at least. I hope someone with more experience or better advice replies just think it's a tough thing to diagnose without a lap and they're not easy to get even with it confirmed xxx good luck and good health to u

[hayesk290 in reply to 24endo]

Thank you so much for the response. Most days I feel like no one believes me, and that I must be crazy. So frustrating.

I definitely agree that it is hard to have doctors truly take it seriously until there is damage or infertility issues. Which makes it ten times more frustrating when I'm in pain and the doctors I've seen just say oh interesting, or hmm let's try this test or that test when I know they will all be negative.

It is so hard to have to constantly fight to be taken seriously.

I am just so tired of being in pain, and I feel bad for my boyfriend because I get super miserable.

Sending strength and positive thoughts your way to help with this ridiculously frustrating disease!

[AkiBoo]

Hi, hayesk290

I am sorry to hear that sounds like you are not getting anywhere.

I had the same issue with this shoulder pain used to start just before my period starts and until it finishes. It was awful, the pain used to take my breath away.

I think one good thing for you is that you seem to know what it is.

At the time I developed the pain, I was about 30 years old. I had no idea what is was. Like you, I make a referral to physiotherapy but it was a joke, I saw a male physio and had no clue.

I am diagnosed with endometriosis but I diaphragmatic endometriosis is not confirmed. I think this is because it is very difficult for surgeons to see. However, a consultant I used to see said that 'we all look up with laparoscopy' so experts must know what to look for.

To find out, you will need laparoscopic surgery and make sure you are in good hands, find a good BSGE near you and get your GP to refer you.

I am due to have a surgery in about a month time, I will make sure my consultant will look up my diaphragms.

I am in mid 40 now, and my right shoulder was painful all the time, it was difficult to turn my neck before I was put on decapeptyl injection, which has alleviated the pain hugely. But my left shoulder started to hart as well so I suspect the endometriosis is spreading over!